1.1. COVID-19 SCI/D and MS Webinar

Webinar: COVID-19 Vaccine Update: Spinal Cord Injury and Disorders and the MS Community

This webinar provided the SCI/D community a chance to ask infectious disease specialists about the vaccines, and offered the MS community an opportunity to find out about the interaction of the COVID vaccines with Disease Modifying Therapies (DMTs), for example. SCI/D advocates also shared their experiences with the vaccines. Presenters include Dr. Clayton Foster, Dr. Scott Newsome and Nicolette A. Louissaint.

1.2. HHS Covid-19 Disabilities Hotline

HHS Launches Hotline to Improve Access to COVID-19 Vaccines for People with Disabilities
June 8th 2021

Today, U.S. Health and Human Services (HHS) announces the launch of a first-of-its-kind national hotline to connect people with disabilities to information and services to improve access to COVID-19 vaccines. The Disability Information and Access Line (DIAL) is now available to help people with disabilities find vaccination locations in their communities, assist callers with making vaccination appointments, and connect callers to local services – such as accessible transportation – to overcome barriers to vaccination. The hotline also can provide information and resources to answer questions and address concerns about the vaccines and can connect callers to information and services that promote independent living and address fundamental needs, such as food, housing, and transportation.

DIAL is operated as a collaboration between a consortium of organizations serving people with disabilities and the National Association of Area Agencies on Aging (n4a).

The consortium includes:
• Association of Programs for Rural Independent Living (APRIL),
• Association of University Centers on Disabilities (AUCD),
• Independent Living Research Utilization (ILRU),
• National Association of Councils on Developmental Disabilities (NACDD),
• National Council on Independent Living (NCIL),
• National Disabilities Rights Network (NDRN), and
• The Partnership for Inclusive Disaster Strategies.

This collaboration benefits from the disability networks’ extensive knowledge and expertise in meeting the needs of people with disabilities across the U.S. and n4a’s decades of experience operating the Eldercare Locator, the only federally funded national information and referral resource that supports consumers across the spectrum of issues affecting older Americans. By leveraging these capabilities, ACL was able to launch this critical tool in less than six weeks.
DIAL was created through a partnership between the Administration for Community Living and the Centers for Disease Control and Prevention to help older adults and people with disabilities get COVID-19 vaccines. With support from CDC, ACL also:

• Increased the capacity of the Eldercare Locator to connect older adults, including those who are unable to leave their homes and those who live in underserved communities, to local COVID-19 vaccination resources.
• Issued nearly $93 million in grants to the aging and disability networks in every state and territory to provide critical services to overcome barriers that are preventing millions of those most at-risk for serious illness and death from COVID-19 from receiving vaccines.

________________________________________

About the Disability Information and Access Line (DIAL)

The Disability Information and Access Line (DIAL) connects callers to information about how to access the COVID-19 vaccine and related supports for people with disabilities. DIAL connects callers to vaccine sites and provides information related to barriers to vaccination by referring callers to local and national disability resources.
Website: acl.gov/dial
Email: DIAL@n4a.org
888-677-1199 from 9:00 AM to 8:00 PM ET 

About the Eldercare Locator
Launched in 1991, the Eldercare Locator is the only national information and referral resource to provide support to consumers across the spectrum of issues affecting older Americans. The Locator was established and is funded by the U.S. Administration for Community Living and is administered by the National Association of Area Agencies on Aging (n4a).
Website: eldercare.acl.gov
Email: eldercarelocator@n4a.org
800-677-1116 from 9:00 AM to 8:00 PM ET 

About the Administration for Community Living
The Administration for Community Living was created around the fundamental principle that older adults and people of all ages with disabilities should be able to live where they choose, with the people they choose, and with the ability to participate fully in their communities. By funding services and supports provided by networks of community-based organizations, and with investments in research, education, and innovation, ACL helps make this principle a reality for millions of Americans.

About the CDC’s National Center on Birth Defects and Developmental Disabilities
The National Center on Birth Defects and Developmental Disabilities strives to advance the health and well-being of our nation’s most vulnerable populations. NCBDDD’s work is broad and far-reaching, and includes four areas of focus: saving babies through surveillance, research, and prevention of birth defects and infant disorders; helping children live to the fullest by understanding developmental disabilities; protecting people by preventing the complications of blood disorders; improving the health of people living with disabilities.
________________________________________

ACL.GOV/COVID-19

 

1.3. United Spinal COVID-19 Support

United Spinal is leading the fight to protect the health and safety of disabled veterans, wheelchair users and all people living with spinal cord injuries and disorders (SCI/D) during these challenging times. We are committed to providing our community critical support and resources to overcome the COVID-19 pandemic. Please visit our COVID-19 resources page for more information. 

1.4. Mental Health Resources

COVID 19 Mental Health Information and Resources

 

The outbreak of coronavirus disease 2019 (COVID-19) may be stressful for people. Fear and anxiety about a disease can be overwhelming and cause strong emotions in adults and children. Coping with stress will make you, the people you care about, and your community stronger.

Stress during an infectious disease outbreak can include

• Fear and worry about your own health and the health of your loved ones
• Changes in sleep or eating patterns
• Difficulty sleeping or concentrating
• Worsening of chronic health problems
• Worsening of mental health conditions
• Increased use of alcohol, tobacco and drugs. 

Everyone reacts differently to stressful situations. How you respond to the outbreak can depend on your background, the things that make you different from other people, and the community you live in.

Take care of yourself and your community

Taking care of yourself, your friends, and your family can help you cope with stress. Helping others cope with their stress can also make your community stronger. Feelings of fear, anxiety, sadness and uncertainty are normal during a pandemic. Fortunately, being proactive about your mental health can help to keep both your mind and body stronger

Ways to cope with stress

• Take breaks from watching, reading, or listening to news stories, including social media. Hearing about the pandemic repeatedly can be more upsetting.
• Take care of your body.
• Take deep breaths, stretch, or meditate.
• Try to eat healthy, well-balanced meals.
• Exercise regularly and get plenty of sleep.
• Avoid alcohol and drugs.
• Make time to unwind. Try to do some other activities you enjoy.
• Connect with others. Talk with people you trust about your concerns and how you are feeling.

Do meaningful things with your free time. When you can, do things that you enjoy and that help you relax.

 

• Read a book/listen to an audiobook.

• Learn a new skill

• Create art—draw, build something, etc.

• Journal or write

• Play games or do puzzles

• Take an online course—various free online courses available

• Do tasks around your home. Organize, do crafts, garden, rearrange your living space.

• Cook something new with ingredients you have at home

 

Stay connected with others and maintain your social networks Physical distancing (also called social distancing) can change how you usually interact with people you care about. Doing this is essential to lessening the impact of COVID-19. There are many ways you can build a feeling of connection, even if you can’t see people in person or go places you usually would:

 

• Make sure you have the phone numbers and emails of close friends and family

• Stay connected via phone, email, social media and video calls

• Offer to help others if you can

• Ask for help when you need it

• Share how you’re feeling with people you trust

• Regularly call, text or email with family and friends who may have more limited social contact—elderly people, those with disabilities, those who live alone, those who are quarantined or at high risk because of chronic health conditions

• If talking about COVID-19 is affecting your mental health, set boundaries with people about how much and when talk you about COVID-19. Balance this with other topics you’d usually discuss.

• If you are living with other people, communicate expectations about how to live well together while staying home

• Do virtual activities together

• Plan virtual dinners and coffee breaks
• Do at-home crafts and activities over a video call
• Watch a virtual concert together
• Read the same book or watch the same movie/TV show and talk about it
• Play online multi-player video games
• Join an online exercise class(https://www.nchpad.org/) ( https://www.facebook.com/PittVATS/)

 

Do you need help? Know someone who does?

 

If you, or someone you care about, are feeling overwhelmed with emotions like sadness, depression, or anxiety, or feel like you want to harm yourself or others

• Call 911 if you feel you’re in immediate danger
• Visit the Suicide Prevention Lifeline The National Suicide Prevention Lifeline is a national network of local crisis centers that provides free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, 7 days a week. They’re committed to improving crisis services and advancing suicide prevention by empowering individuals, advancing professional best practices, and building awareness. call or text #988
• Visit the Disaster Distress Helpline that this is a resource provided by the Substance Abuse and Mental Health Services Administration (SAMHSA) which offers a number of resources for people with substance abuse and mental health concerns during the COVID-19 crisis, including a treatment locator. Call 1-800-985-5990, or text TalkWithUs to 66746
• Visit the National Domestic Violence Hotline  Operating around the clock, seven days a week, confidential and free of cost, the National Domestic Violence Hotline provides lifesaving tools and immediate support to enable victims to find safety and live lives free of abuse or call 1-800-799-7233 and TTY 1-800-787-3224
• Disaster Hotline for People with Disabilities The hotline provides information, referrals, guidance, technical assistance and resources to people with disabilities, their families, allies, organizations assisting disaster impacted individuals with disabilities and others seeking assistance with immediate and urgent disaster related needs. The Disaster Hotline is always available for intake calls, 24 hours a day, 7 days a week, 365 days a year at (800) 626-4959

Medicare and other insurers are broadening coverage of telehealth (including mental health counseling) services during COVID-19, we urge you to contact your insurer to see what is available in your area. Find a Telemental health provider.

Talkspace www.talkspace.com (Talkspace is therapy for all. Online therapy lets you connect with a licensed therapist from the privacy of your device — at a significantly lower cost than traditional, in-person therapy.)

BetterHelp www.betterhelp.com (Making professional counseling accessible, affordable, convenient - so anyone who struggles with life’s challenges can get help, anytime, anywhere.)

Join the United Spinal Facebook Support Group to meet others and share information and resources!

 

United Spinal offers a national peer mentoring which pairs a mentor with a mentee who is looking for support and advice! This is a great way to get connected with someone who can offer you advice, guidance, resources and real-life experience especially during these difficult times. It’s is nice to speak with someone who understands! Request a peer mentor.

 

Visit our New Mobility COVID-19 Disability Specific Coverage for the latest disability specific recommendations.

 

Online Worship Services:

 

Online Faith Collective offers the following searchable tool:  Online Worship Services by Faith Group

United Methodist Church: Where to Worship Online

United States Conference of Catholic Bishops:  Resources for Catholics at Home During COVID-19

UJA-Federation of New York offers this list of Virtual Synagogue Services

 

Lastly, for the most up to date information on COVID-19, please visit the CDC.

 

Sources:

www.cdc.gov

https://www.nami.org/covid-19-guide

 

2.1. Teledoc Telehealth-One Million Visits

Teladoc conducts 1 millionth telehealth visit

Industry leader brings high-quality, low-cost health care to more Americans

via video, phone or online visit

 

Purchase, New York (October 20, 2015) – Teladoc (NYSE: TDOC), the nation's first and largest telehealth platform crossed an industry milestone this week with the completion of its 1 millionth telehealth visit. Each telehealth visit reflects an interaction between a board-certified, state-licensed physician and a patient in need of health care via video, phone or online.

"Hitting our 1 millionth visit underscores the growing adoption and utilization of telehealth services across the country," said Jason Gorevic, Teladoc chief executive officer. "This Teladoc milestone is evidence of the value we deliver and the confidence our employers, members, physicians and hospital systems have in our ability to provide quality health care where and when people need it most."

In addition to being the first telehealth provider to conduct 1 million physician visits, Teladoc also counts among its industry "firsts" as being the first and largest telehealth platform, and the first and only telehealth company to be certified by the National Committee for Quality Assurance (NCQA) for its physician credentialing process.

 

"As the nation continues to face growing health care challenges, employers, providers and patients are seeking innovative solutions to mounting health care costs and challenges accessing timely care," said Krista Drobac of the Alliance for Connected Care. "Teladoc's one millionth telehealth visit represents a milestone for the growth in patient access to this important technology."

 

Teladoc helps resolve common, non-emergency issues and offers behavioral health, dermatological, tobacco cessation and sexual health services. Teladoc maintains a 92 percent medical resolution rate and a 95 percent patient satisfaction rate.

According to the National Business Group on Health, 74 percent of large employers are

expected to offer telemedicine in 2016 compared to 48 percent in 2015 and only 28 percent in 2014.

Huntington Ingalls Industries (HII), America's largest military shipbuilding company and a provider of manufacturing, engineering and management services to the nuclear energy, oil and gas markets, is among the growing number of Teladoc clients and large employers who are realizing the benefits of telehealth. Seeing the value that Teladoc brings to an increasingly complex health care environment, HII rolled out the Teladoc platform in July 2014 for more than 13,000 employees in an effort to help their employees and their families get convenient, affordable medical care.

 

"Our success as a company is tied to the health and safety of our employees and their families. This is why the health and welfare of our entire HII family is a primary focus for us," said Bill Ermatinger, HII's corporate vice president for human resources. "When it came time for us to add telemedicine as a component of our health care offerings that offers the best and most scalable solution to meet our employees' health care needs, Teladoc was the clear choice. Not only have their telehealth services delivered exceptional care for our employees, it has proven to be a great investment in our workforce."

 

The decision provided employees 24/7 access – including nights, weekends and holidays – to more than 2,000 physicians and behavioral health specialists. In addition to saving Huntington Ingalls Industries $483,005 in health care and productivity costs, their employees are delighted with the Teladoc program and reported a 97 percent "good" or "excellent" rating for their Teladoc physician.  

 

About Teladoc

Teladoc, Inc. (NYSE: TDOC) is the nation's first and largest telehealth platform, delivering on-demand health care anytime, from almost anywhere via mobile devices, the internet, secure video and phone. More than 12.5 million U.S. members are connected to Teladoc's network of over 2,000 board-certified, state-licensed physicians and behavioral health professionals who provide care for a wide range of non-emergency conditions. With a median response time of less than 10 minutes, Teladoc physicians will perform more than 525,000 telehealth visits in 2015. Teladoc and its physicians consistently earn a 95 percent member satisfaction rating or better, and Teladoc is the only telehealth company to be certified by the National Committee for Quality Assurance (NCQA) for its physician credentialing process. 

Recognized in June 2015 by MIT Technology Review as one of the "50 Smartest Companies," Teladoc works with health plans, employers, organizations and individuals to provide access to affordable, high-quality health care on-demand. Teladoc is transforming the access, cost and quality dynamics of health care delivery. For more information, please visitteladoc.com, twitter.com/teladoc, facebook.com/teladoc or linkedin.com/teladoc.

 

About Huntington Ingalls Industries

Huntington Ingalls Industries is America's largest military shipbuilding company and a provider of manufacturing, engineering and management services to the nuclear energy, oil and gas markets. For more than a century, HII's Newport News and Ingalls shipbuilding divisions in Virginia and Mississippi have built more ships in more ship classes than any other U.S. naval shipbuilder. Headquartered in Newport News, Virginia, HII employs approximately 37,000 people operating both domestically and internationally. For more information, visit:

• HII on the web: www.huntingtoningalls.com

• HII on Facebook: www.facebook.com/HuntingtonIngallsIndustries

• HII on Twitter: twitter.com/hiindustries

 

2.2. Eye Gaze Technology

 

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This information was brought to you by Cision http://news.cision.com
http://news.cision.com/tobii-technology-ab/r/tobii-unveils-ultraportable-computer-access-peripheral,c9388166

The following files are available for download:

Tobii PCEyeGoPRo-600px

Tobii Image PCEyeGo Front-600px

Tobii Image PCEyePro Front-600px

2.3. Eye Gaze Article

The eye-gaze revolution

Eye-gaze has come of age in a way many of us could have only dreamt of

By Sandra Thistlethwaite

I first became interested in eye-gaze when, as a newly qualified speech and language therapist, I met six-year-old David. David had quadriplegic spastic cerebral palsy. He was the first child I met who couldn't talk at all, could hardly move, yet had that special glint in his eye that, to my mind at least, said he had things he wanted to say.

We had very little technology to work with in those days. We had a BBC computer and raised funds for a speech synthesiser so that we could have sound. We struggled to find motivating things that David could do because for him access was so difficult. Over his school career we probably tried every type and position of switch imaginable, but nothing worked well enough to be useful on a day-to-day basis. Our saving grace was the low-tech eye gaze system we developed over time.

David's low-tech eye-gaze book – known as 'The Bible' to his family

Great, but for it to work well David still needed willing and able communication partners with lots of time and personal knowledge of him. If only there was a device that could read his eyes...

After 12 years of working together, David and I went our separate ways: I, to work for the ACE Centre and David to a specialist college. In my new job, I attended a clinical engineers' conference and got my first glimpse of eye-gaze technology: a large alphabet board accessed using the eyes. The results were amazing, but so too was the price: £14,000. Even so, I was hooked on this new technology and keen to see how it would evolve. A few years later I heard of Tobii and the P10, a dedicated eye-gaze computer. Wow! You could use your eyes to move the cursor and spell out your name! The revolution had begun.

When I joined Inclusive Technology in 2007, I had many more opportunities to try this new eye-gaze system with a range of people. It had clear benefits for many adults I worked with, but drawbacks too: it had to be plugged in, was hard to position and was still very expensive. A couple of years later, and things started to change. By now all the major AAC companies were offering an eye-gaze module or add-on to their dedicated systems. These systems were portable, had long battery lives, loud speakers and suit­able vocabulary — ideal for AAC users who had previously struggled with other forms of access.

Declan practised using a switch for six months and was able to play cause-and-effect and some switch-timing games. Declan then tried eye-gaze for two weeks and was able to play a 28-card memory game

More and more AAC users were finding that eye-gaze could provide a more direct, easier and quicker way to com­munication than other forms of access.

But it wasn't suitable for everyone. At that time my work involved travelling around the UK visiting teachers, thera­pists and students, all keen to try this new technology. For the 'straightforward' cognitively able student with no visual or learning problems, these visits were a breeze. A quick check that the technology worked with their eyes, a discussion on vocabulary packages and a try with a few easy games and grids and it was an easy conclusion (except, of course, for finding the funding).

But there were many visits that were less conclusive. These usually involved students with more complex learn­ing and sensory needs for whom every other access method had been tried without success. One-off visits frequently suggested some potential for using eye-gaze but often the student was insufficiently engaged to leave us certain. I came to the view that one of the main reasons why students did not respond favourably when eye-gaze systems were tried with them was the type and appropriateness of the content or activities on offer. At the time, most of these were grid based, relied on targeting and dwell selection skills, and AAC readiness. Many students I saw:

 

- Could not, as yet, accurately access a grid of cells with eye-gaze

- Were at an early stage of communication

- Had visual/perceptual and/or cognitive difficulties

- Were not motivated by traditional vocabulary page sets

It was clear these students needed to gain visual skills to use eye-gaze effectively, but just as importantly they needed early learning skills to develop interaction with and even interest in the screen.

Working for Inclusive Technology meant that I could try lots of different software with eye-gaze. I explored how it could be used as a mouse pointer tool. This opened up lots more content that was potentially more relevant to the students I met. Cause-and-effect activities, songs, stories and creative programs were engaging and appropriate, and if they could be used with a mouse they could potentially be used with eye-gaze. If I knew the learning level and motiva­tors for a child, I could choose an appropriate software title, fuelling more engagement and interaction.

 

I compiled a list:

How to use myGaze with HelpKidzLearn.

How to use Tobii Eye Gaze with HelpKidzLearn.

Fantastic if you have access to and an in-depth knowl­edge of a lot of software; trickier if you are a busy teacher or therapist without either. The feedback from my profes­sional colleagues was, 'This is a great idea, but where do we start? What are the next steps? How do we measure success or progression? Can I justify spending £10,000+ on this child?' All good questions.

It was in early 2012 that I started researching eye-gaze, visual and learning skills in more depth and developed a prototype software package. I distributed this to interested teachers and therapists and trialled it with a range of stu­dents.

I learnt a great deal from this and a specification for a full software package began to take shape. It was time to talk to my managers about making this idea a reality;

The Inclusive EyeGaze Learning Curve – This collection takes children on the learning curve from assessment and cause-and-effect understanding through to using eye-gaze for communication, learning and leisure

Around this time two other important resources entered the marketplace. The launch of the Tobii PC Eye and Sensory Eye-FX helped shape the future of eye-gaze technology. We now had a small, portable eye tracker, which was half the price of previous eye-gaze systems and could be used on any Windows device, and a software pack­age that gave immediate success and feedback to the user while being engaging and appropriate for those with more complex needs.

 

Click here to watch Katie playing Counting Songs by just looking at the screen

Today, there is a growing range of specialist eye-gaze titles, with many more in the pipeline, catering for a variety of learners, not just competent AAC users. Some of these meet many past concerns, such as ease of use for the sup­porting adult and user, a clear starting point and roadmap for both assessment and teaching goals, and, of course, affordability.

Now an easy to use myGaze eyetracker with specially designed software to use wth a range of learners is available for under £1,000. That is what I call progress

My own interest has now turned to what we can learn from what children look at when using eye-gaze. From the late 1800s eye tracking has been used to help us better understand the relationship between vision and cognition. Although we still cannot infer exactly what someone is thinking from what they are looking at — e.g. gazing on a face in a picture may indicate recognition, puzzlement, or something else — there is much we can learn from using a tool that objectively records looking behaviours. Further use and research using eye-gaze may help us better under­stand how our special needs leaners learn and hence how we can best teach and interact with them.

Inclusive EyeGaze Learning Curve includes powerful, easy to use analysis tools allowing you to record and review eye-gaze skills

Having followed and participated in the eye-gaze revo­lution for over 20 years I now have a 'vision' that eye-gaze technology will take its place alongside switch and touch technologies as an essential tool for the special needs classroom or individual. I also believe it will offer us more insights about and opportunities for our most complex students.

Click here to watch the video of Inclusive Eye Gaze Attention and Looking

 

20+ years later ... a device that can read my eyes

As for David, I have been following his evolution too — into a handsome young man of 30 (eek!). His mum contacted me again this year (though I must say I had some lovely Xmas cards and photos in-between) to ask what I knew about eye-gaze technology. Some time later I watched him, relaxing in his recliner buggy, effortlessly using his eyes to play a game of smashing bottles. Around him other peo­ple's eyes, mine included, were fighting back the tears.

About myGaze: The first easy eye gaze for all levels of abilities.

For supported and independent gaze users

The new software provides pupils who advance in their eye gaze skills with independent access options such as the new Access Button and Gaze at Camera. They can now even start programs on their own with the help of a Double-Click. Meanwhile teachers preserve their subtle control and the ability to support the less skilled users with the help of functions such as the mouse-over-gaze precedence, profile settings and the keyboard shortcuts. Communicate & participate in and outside of the classroom

The new Play is suited not only for various levels of abilities but also for all school activities. The myGaze Grid 2 bundle will now be available from resellers in addition to a growing variety of bundles with popular classroom software for learning, leisure and choice making activities.  Find out more here or ask your reseller. Colors and sounds make calibration fun  The child can choose different shapes and colors for the calibration point, and even their own images! Sound effect is also available to help capture the attention of not-so-easily-impressed young gaze users.

There are other additions to the new EyeMouse Play such as Dwell, Blink or Switch, Monocular & Binocular tracking, Auto-run and more. 

 

 

 

2.4. RRTC on Aging with a Disability

The Rehabilitation Research and Training Center (RRTC) on Aging with a Physical Disability works on research and training activities to better understand the challenges faced by people aging with muscular dystrophy (MD), multiple sclerosis (MS), post-polio syndrome (PPS), and spinal cord injury (SCI).  The research center at the University of Washington in Seattle, WA, has launched a new website at http://agerrtc.washington.edu.

This resource for people aging with a spinal cord injury/disorder offers up-to-date educational information, including Aging Well with a Physical Disability Factsheets, as well as many ways to stay connected with the center's research: a News Blog, a quarterly e-Newsletter, and Facebook and Twitter pages. (See related pages below)

Take some time to check them out: http://agerrtc.washington.edu

posted 12-20-12

2.5. Monitoring the Spinal Cord During Surgery

The American Academy of Neurology (AAN) develops guidelines to promote patient safety and improve patient outcomes in relation to neurologic conditions.  AAN recently issued an updated guideline (February 2012) that recommends monitoring the spinal cord during spinal surgery and certain chest surgeries to help prevent paralysis, or loss of muscle function, related to the surgeries.

"Paraparesis, paraplegia, and quadriplegia are potential serious complications of surgeries where the spinal cord is at risk," said guideline lead author Marc R. Nuwer, MD, PhD, of UCLA and a Fellow of the American Academy of Neurology. "Monitoring can help prevent damage by identifying problems early enough to allow for interventions. If intraoperative monitoring raises warnings, surgeons and anesthesiologists can modify the surgery to reduce the risk of these complications."

2.6. Sniff interface

Voice of America piece on cost-effective sniff interface technology developed in Israel can be used to control a wheelchair or for writing via computer.

2.7. Exoskeleton Systems

1. ReWalk Robotics recently (June, 2014) announced that the U.S. Food and Drug Administration has cleared the company's ReWalk Personal System for use at home and in the community. ReWalk is a wearable robotic exoskeleton that provides powered hip and knee motion. ReWalk is now available throughout the United States. For more information, please visit the following links:

ReWalk™ Personal Exoskeleton System Cleared by FDA for Home Use

FDA News Release

SEE ReWalk video in our VIDEO RESOURCE ROOM on the related page below

 

2. e-LEGS exoskeleton, originally developed by Berkeley Bionics, is now known, formally, as Ekso Bionics.   The device is now being offered at 12 rehabilitation centers within the US.  The system is adjustable and can fit most people who weigh less than 220 pounds and stand between 5'2" and 6'4". The device provides "unprecedented knee flexion," and it's also fairly quiet in operation; under ideal circumstances, speeds of up to 2MPH can be attained.  The system is being studied for use with patients with different levels of spinal cord injury, however it is being offered to persons with paraplegia. 

 

3. REX exoskeleton-produced in New Zeland, $150,000 approximate cost but not yet approved for individual sale in the US as yet.

With state-of-the-art, highly engineered systems some 29 on-board computer processors control movement and balance through joystick control allowing the Rex user to direct the device to sit, stand, walk and turn with consummate ease. These robotic legs can even walk up steps, up or down slopes. Rex has been designed with maximum comfort and stability.Rex does not require any additional supportive aids such as crutches. The device is self supporting allowing you to keep your arms and hands free to use.

Also see the Engadget article with video in our VIDEO RESOURCE ROOM

4.  Indego

2.8. Obesity and Heart Disease after SCI

The National Rehabilitation Hospital in Washington, DC, is the Rehabilitation Research and Training Center (RRTC) on Spinal Cord Injury (SCI), funded by the National Institute on Disability and Rehabilitation Research (NIDRR).  The RRTC focuses on the prevention and management of secondary conditions among individuals with SCI, with particular focus on pressure sores, cardiovascular disease, and obesity.  This recent publication discusses obesity and heart disease in SCI, the risks for a person living with SCI and what you can do to reduce your risk.  Obesity and Heart Disease after SCI

2.9. Nerve Transfer To Restore Hand Function

Nerve Transfer to Restore Hand Function- C6/7 Spinal Cord Injury

Cervical level spinal cord injury can significantly affect hand function. Depending on the level and type of injury, surgery to improve hand and arm function may be an option. Surgical treatment may include nerve transfers or other procedures.

This nerve transfer surgery can only benefit patients with specific types of spinal cord injury. To be eligible, a patient must have quadriplegia with a motor level C6 or C7 spinal cord injury. Because the procedure relies on working nerves above the C6 and C7 level, it will not benefit patients with higher level cervical spinal cord injuries. The goal of the procedure is to restore hand function with the ability to pinch the thumb and index finger.

3.1. SCI Health Education MultiMedia Series

Secondary Conditions of SCI Health Education Video Series

3.2. General Medical Concerns for People with Spinal Cord Injury

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1) Primary Resources for General Medical Concerns and Locating Primary Care Physicians

• General Medical Concerns for People with Spinal Cord Injuries — You and Your Primary Care and Spinal Cord Injury: What You (and Your Provider) Need to Know
  This SCI Forum presentation was offered by Northwest Regional Spinal Cord Injury System (NWRSCIS).  When a health concern comes up, how do you know what kind of health care provider to see? What can you expect from your primary care team? What testing should you receive as part of "routine" care? What do you need to know about accessibility of medical facilities and your rights as a patient living with a disability? Get answers to these and other questions about managing your health care in this presentation by Dr. Michael Stillman, an internal medicine physician who is an expert in primary care for individuals with SCI. Presented on October 25, 2016 at the University of Washington.  
  
  
• How to Find, Train and Work With a Primary Care Physician (PCP) - New Mobility Magazine (July 2020) 
  For information about how to choose a PCP, including what questions to ask, ways to educate PCPs about your disability and how to search for one, New Mobility turned to advice from experts and seasoned wheelchair users. 
  

• Changing or Choosing Your Doctor (Craig Hospital Pamphlet) 
  This pamphlet published by Craig Hospital (a longstanding Spinal Cord Injury Model System Center) discusses important considerations for people with SCI when selecting a physician. 

• Interacting With Your Doctor - Craig Hospital 
  This pamphlet published by Craig Hospital (a longstanding Spinal Cord Injury Model System Center) discusses important considerations when accessing health services and communicating with your physicians as an engaged participant in your health care. 
  

2.)  SCI Related Resources for Primary Care Physicians and Other Clinical Specialists 

• Primary Care Providers — SCI Healthcare Resources — American Spinal Injury Association (ASIA) 
  Two U.S. based North American societies for SCI professionals,  ASIA and the Academy of Spinal Cord Injury Professionals (ASCIP), partnered with primary care provider colleagues and consumers to curate, develop and disseminate easy to use resources for primary care providers. Resources include articles, factsheets, articles in Spanish, resources for Administrators and Practice Managers, links to "actionable nuggets" and more. 

• SCIRE Professional (Spinal Cord Injury Rehabilitation Evidence) 
  SCIRE is a Canadian collaboration between scientists, clinicians and consumers. SCIRE Professional covers a comprehensive set of topics relevant to SCI rehabilitation and community reintegration. SCIRE reviews, evaluates, and translates existing research knowledge into a clear and concise format to inform health professionals and other stakeholders of best rehabilitation practices following SCI. SCIRE also offers an online resource for people living with SCI, their families, friends and caregivers, known as SCIRE Community.  
  

• PVA Clinical Practice Guidelines 
  Developed for healthcare specialists based on evidence-based research conducted by the Consortium for Spinal Cord Medicine, these comprehensive and useful booklets are available in print, as interactive eBooks, or as free downloadable PDFs. PVA Consumer Guidelines, available for patient use can be found in the Health and Wellness Knowledge Book in chapters about particular body systems. 

3.3. Aging with SCI

Things to Know About Aging and Spinal Cord Injury (msktc.org) 
This Model Systems Knowledge Translation Center (MSKTC) factsheet discusses the issues of aging after spinal cord injury and discusses the importance of maintaining a healthy lifestyle. 

Osteoporosis
A pamphlet by Spinal Cord Injury Research Evidence (SCIRE) Community. SCIRE Community was developed by a team in the Rehabilitation Research Program at GF Strong Rehab Centre in Vancouver, BC with the SCIRE Community Working Group which consists of 19 community members, including people living with spinal cord injury, health professionals, scientists, and other community stakeholders in Canada who provided guidance and input on the project throughout development.

Also see Aging with SCI video in VIDEO RESOURCE ROOM referenced below

3.4. Autonomic Dysreflexia

Clinical Practice Guideline— Evaluation and Management of Autonomic Dysreflexia and Other Autonomic Dysfunctions: Preventing the Highs and Lows.  Published by the Paralyzed Veterans of America (PVA) on behalf of the Consortium for Spinal Cord Medicine (2020). These guidelines are written for health care professionals and include the management of blood pressure, sweating, and temperature dysfunction. They can be downloaded at the previous link.  

Autonomic Dysreflexia: What You Should Know. A Consumer Guide for People 
with Spinal Cord Injury. Published by the Paralyzed Veterans of America (PVA) on behalf of the Consortium for Spinal Cord Medicine (2022). This guide written for consumers discusses signs and symptoms of autonomic dysreflexia, silent dysreflexia, management and more. 

Autonomic Dysreflexia. Information Sheet published by the Model Systems Knowledge Translation Center, 2016.  Written by Anthony Chiodo, M.D., Deborah A. Crane, M.D., Maria R. Reyes M.D., Shawn Song, M.D. and Phil Klebine, M.A., in collaboration with the MSKTC.

PVA Consortium Consumer Guide on AD in Spanish language

Autonomic Dysreflexia - Information sheet published by the Model Systems Knowledge Translation Center, 2016.

Automatic Dysreflexia (Hyperreflexia) Calder Memorial Library of the University of Miami/Jackson Memorial Medical Center

Autonomic Dysreflexia
The SCI Forum presentation, "Autonomic Dysreflexia," by Janna Friedly, MD, assistant professor in the Department of Rehabilitation Medicine at the University of Washington, is now available on the Northwest Regional Spinal Cord Injury System Web site for viewing on your computer as streaming video. A written report of the presentation is also online.

Paralysis Resource Center : Autonomic Dysreflexia
Autonomic dysreflexia (AD) is a potentially life threatening condition that can be considered a medical emergency. It mainly affects people with injuries at T-5 or higher.

Articles:

UAB article reprint-Autonomic Dysreflexia - A Possible Life-Threatening Situation

SEE Autonomic Dysreflexia video in the VIDEO RESOURCE ROOM referenced below

3.5. Back and Spine conditions/disorders

INFORMATIONAL RESOURCE ORGANIZATIONS

• American Academy of Orthopedic Surgeons, OrthoInfo(AAOS)  Ph: 847-823-7186  Provides information on orthopedic conditions and treatments, injury prevention, wellness and exercise, and more.
• American Academy of Physical Medicine and Rehabilitation   (AAPMR) Ph: 847-737-6000  Emphasizes the prevention, diagnosis, and treatment of disorders, particularly related to the nerves, muscles, bones and brain, that may produce temporary or permanent impairment
• American Association of Neurological Surgeons (AANS)   Ph: 888.566.AANS (2267)  Concerned with the prevention, diagnosis, treatment and rehabilitation of disorders that affect the entire nervous system including the spinal column, spinal cord, brain and peripheral nerves. They offer patient educational information on their website. 
• National Library of Medicine, National Institutes of Health, Medline Plus Resources about back pain, provides many links to related topics
• North American Spine Society— The North American Spine Society (NASS) is a global multidisciplinary medical society that utilizes education, research and advocacy to foster high quality, ethical,​ value- and evidence-based spine care for patients.  They host a patient education website, Know Your Back. 

PUBLICATIONS/RESOURCES

• National Arthritis and Musculoskeletal and Skin Disease  Information Clearinghouse (NAMSIC). Visit Website -  Toll free 877-226-4267 or TTY 301-565-2966
• National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) on What is Back Pain - Fast Facts, Easy to Read  

 FIND A DOCTOR

• Find an Orthopaedist 
• Find a Board Certified Neurosurgeon 
• Find  a Physiatrist  

 PAIN MANAGEMENT AND SUPPORT

• American Chronic Pain Association includes support groups  and education for clients and their families  Ph: 1-800-533-3231   Email: ACPA@pacbell.net   
• NIH Pain Consortium   includes information on pain research and clinical trials, various conditions, pain scales   

 PAIN RESEARCH

• Translational Pain Research (617) 525-PAIN (7246)located at Brigham and Women's Hospital, Boston, MA has an overall goal to relieve each person's pain experience and ultimately improve a person's quality of life.

 EN ESPANOL    

• Dolor de espalda 
• Huesos Rotos y Otras Heridas   
• Guía de ejercicios para la parte baja de la espalda  

3.6. Bladder management

Primary Resources

• Bladder Care and Management 
  Reviews the urinary system, how it works after an SCI, and types of bladder management programs. Discusses possible problems with the urinary tract, treatment methods and steps to staying healthy.  

• Bladder Management Options Following Spinal Cord Injury— An information sheet that discusses bladder management options. Written by Todd A. Linsenmeyer, M.D., and Steven Kirshblum, M.D.,in collaboration with the Model Systems Knowledge Translation Center (MSKTC). 

• Surgical Alternatives for Bladder Management Following SCI (2015) — An information sheet that discusses s urgical options when other bladder management strategies are ineffective . Developed by Todd A. Linsenmeyer, M.D., and Steven Kirshblum, M.D., in collaboration with the Model Systems Knowledge Translation Center.

• Urinary Tract Infection and Spinal Cord Injury 
  Published by the Model Systems Knowledge Translation Center (MSKTC). Urinary tract infections are one of the most common medical problems after SCI. The factsheet explains urinary tract infections, how to prevent them, and how they can be treated. The factsheet is also available in Spanish (PDF).

• Understanding Neurogenic Bladder
  A pamphlet describing neurogenic bladder and management options. 

Other Resources 

• Bladder Management — This 33 minute video outlines the importance of bladder management on QOL. The types of bladder management programs and techniques are illustrated (Male and female anatomical models utilized to demonstrate proper techniques). Prevention and treatment of UTI and risks for stone formation are also discussed.  This video 1 in an 11-part video series provided by the University of Alabama at Birmingham Spinal Cord Injury Model System (UAB-SCIMS). 

• Management of Urinary Problems Caused by Spinal Cord Injury 
  The SCI Forum presentation, Management of Urinary Problems Caused by Spinal Cord Injury, which took place on October 13, 2009 at the University of Washington Medical Center, is available as streaming video and written report. In this presentation, Stephen Burns, MD, Associate Professor, UW Department of Rehabilitation Medicine and staff physician, SCI Service, VA Puget Sound Health Care System, discusses the advantages and disadvantages of different methods of emptying the bladder and describes some of the testing used to screen the bladder and kidneys. In addition, two individuals with spinal cord injury talk about their personal experiences with bladder management problems and solutions.

• What is Neurogenic Lower Urinary Tract Dysfunction (NLUTD)?
  A pamphlet published by the Rehabilitation Research and Training Center at MedStar National Rehabilitation Hospital that provides an overview of how neurological injury/disease affects the process of urine storage and emptying.  Describes the four main ways that NLUTD can result in bladder dysfunction. 

• What is Overactive Neurogenic Lower Urinary Tract Dysfunction (NLUTD)?
  A pamphlet published by the Rehabilitation Research and Training Center at MedStar National Rehabilitation Hospital that describes overactive NLUTD, including symptoms, affects, and management strategies. 

• What is Underactive Neurogenic Lower Urinary Tract Dysfunction (NLUTD)?
  A fact sheet by the Rehabilitation Research and Training Center at MedStar National Rehabilitation Hospital that describes underactive NLUTD. This is a general information sheet which discusses this specific type of urinary tract dysfunction. Please discuss any information of interest with your physician to determine if the information is applicable to you, taking your individual circumstances into account.  
  

• Research News on Neurogenic Lower Urinary Tract Dysfunction
  A newsletter published by the Rehabilitation Research and Training Center at MedStar National Rehabilitation Hospital that describes the latest information and research news on neurogenic lower urinary tract dysfunction (NLUTD). Please discuss any information of interest with your physician to determine if the information is applicable to you, taking your individual circumstances into account.  

Articles that discuss a variety of concerns and issues about bladder management

• Bladder Matters a series of timely topics by Bob Vogel published in New Mobility; for a list of topics from 2007 to 2011:

  • Cathing Alternatives; Irrigation Explained   December 2010

  • What About Bladder Augmentation Surgery?December 2008

  • Ditching Drug Side Effects  October 2009

  • Suprapubic Revisited  June 2010

  • The Mitrofanoff Procedure  August 2010

  • Removing or Avoiding Painful Kidney Stones  February 2011

• H₂0 to Go! Hydration

  An article by Craig Hospital Research Department from their SCI Health and Wellness series that reviews the importance of drinking enough water, or keeping the body hydrated, for persons with spinal cord injury and the problems resulting from dehydration. Includes a self-quiz to see if you are drinking enough water

• SCI Pamphlets - Urinary Tract Infections Intermittent Catheterization

  From the "Staying Healthy after a Spinal Cord Injury" series published by University of Washington, discusses practical and useful information.

• SCI Pamphlets - Urinary Tract Infections Indwelling (Foley) Catheter

  From the "Staying Healthy after a Spinal Cord Injury" series published by the University of Washington.  Discusses the difference between an infection and bacteriuria (having bacteria in the urine but no symptoms)

Organizational resources

• National Association For Continence  a national, private, non-profit 501(c)(3) organization dedicated to improving the quality of life of people with incontinence, voiding dysfunction, and related pelvic floor disorders. NAFC's purpose is to be the leading source for public education and advocacy about the causes, prevention, diagnosis, treatments, and management alternatives for incontinence.

• The Simon Foundation for Continence: www.simonfoundation.org

• Neurotech Network provides information regarding neurotechnology urinary control devices

                   ******Advocacy Groups for incontinence ****** 

If you are living with a neurologic condition causing an overactive bladder that leads to urinary incontinence, finding useful information, resources, and support can make a difference. Below you'll find a list of organizations and associations where you can learn more and get involved. The organizations listed below do not endorse any specific treatment for urinary incontinence.

• For people living with multiple sclerosis (MS)

     Can Do Multiple SclerosisTM: www.mscando.org

     Multiple Sclerosis Association of America (MSAATM): www.msassociation.org

     Multiple Sclerosis Foundation: www.msfocus.org

     Multiple Sclerosis World (MSWorld®): www.msworld.org

     National Multiple Sclerosis Society: www.nationalmssociety.org

     Paralyzed Veterans of America (PVA): www.pva.org

     United Spinal Association:  www.spinalcord.org

• Bladder management video selections in Health & Wellness chapter of the Video Resource Room Knowledge Book

3.7. Bone Health

*Please note that the information offered through the Resource Center is provided for your general information and is not intended as medical advice. Please discuss any information of interest with your health care provider(s) to determine the information that is applicable to you, taking your individual circumstances into account. 

General Information

• Bone Health and Osteoporosis Management in Individuals with Spinal Cord Injury: Clinical Practice Guideline for Health Care Providers. Published by the Paralyzed Veterans of America (PVA) on behalf of the Consortium for Spinal Cord Medicine (2022). These guidelines for health care professionals discuss bone health, osteoporosis, and fracture management. Healthcare professionals can receive a free PDF copy of PVA's latest clinical practice guideline at the above link.  
  
  
• Bone Health (19 minutes)
  This University of Alabama, Birmingham video discusses aspects of Heterotopic Ossification (Classifications, Etiology, Diagnosis, Prevention and treatment options) and Osteoporosis (Initial bone loss after traumatic injury, Impact of aging, Impact of menopause, Prevention and treatment options).  
  
  
• Common musculoskeletal problems after SCI: Contractures, osteoporosis, fractures, and shoulder pain
  A review of the SCI Forum, April 16, 2002, hosted by the Northwest Regional SCI System. Discusses the various problems that can occur with muscles, bones, ligaments and tendons as individuals with SCI age. 

Heterotopic Ossification

• Heterotopic Ossification:                                                     
  A pamphlet produced by Craig Hospital that describes the causes, symptoms, diagnosis and treatment of heterotopic ossification (HO) for individuals with SCI.

Osteoporosis 

• Bone Loss After Spinal Cord Injury (podcast -2022)
  As bone loss is common after Spinal Cord Injury, it is important for you to understand how best to prevent, monitor, and treat it. Join this podcast presented by Dr. Mandy Rounds and Dr. Cristina Sadowsky which discusses bone health after Spinal Cord Injury.Dr. Mandy Rounds is a researcher at Medstar National Rehabilitation Hospital and Medstar Health Research Institute in Washington DC. Her work focuses on improving quality of life for those had neurological injuries or disease. Dr. Cristina Sadowsky is Associate Professor in Physical Medicine and Rehabilitation at Johns Hopkins School of Medicine and is Clinical Director of the International Center for Spinal Cord Injury at Kennedy Krieger Institute in Baltimore, MD. 
  
  
• Bone Loss After Spinal Cord Injury (2021) 
  This factsheet explains why bone loss happens to people with SCI, the risks for bone fracture, and how bone fractures can cause other health problems. The ways to treat bone loss and minimize the risk of having a fracture are outlined as well. Available in both English and Spanish and published by the Model Systems Knowledge Translation Center. This content has been reviewed and approved by experts from the Spinal Cord Injury Model Systems (SCIMS), funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). 
  
  
• Osteoporosis
  A pamphlet from Craig Hospital that discusses the risk of osteoporosis in individuals with SCI, it's diagnosis and treatment.
  
  
• SCI Podcasts - American Spinal Injury Association
  The Bare Bones Podcast series is a patient version of the PVA Bone Health and Osteoporosis Management in Individuals with Spinal Cord Injury: Clinical Practice Guideline for Health Care Providers. The series is co-hosted by Anita Kaiser and Wendy Murphy two women living with spinal cord injury.

3.8. Bowel Management

 

Bowel Care video selections in Health & Wellness chapter of the Video Resource Room Knowledge Book

 

3.9. Dental Care

Maintaining Oral Health after SCI  discusses the importance of dental care for persons living with SCI/D.  Provided by Northwest Regional Spinal Cord Injury System (NWRSCIS), it describes important considerations, precautions and criteria for appropriate dental services.

 

California only:
Smile Partners
Phone: (818) 314-0101
Contact via email
Smile Partners is a "Mobile Dental Hygiene Service" dedicated to serving patients with a wide variety of challenges, including those with complex medical conditions. Because we are a mobile service, we come to you. There is no need to move patients away from any necessary medical equipment or the safety of their familiar environment.
Debra Olsen, RDHAP is a dental hygienist in alternative practice with special training and licensing to treat outside the dental office. She can visit and treat people in their own home, bedside, chairside or where ever the patient is most comfortable.

3.10. Depression

Depression and Spinal Cord Injury (2010)- A factsheet produced through a collaboration between the Model Systems Knowledge Translation Center (MSKTC) and the SCI Model Systems. These materials undergo expert and consumer reviews to ensure they are up-to-date, evidence-based, and consumer-friendly. The health information provided on MSKTC is not meant to replace the advice from a medical professional. You should consult your health care provider regarding specific medical concerns or treatment. 

PVA Clinical Practice Guideline (2020): Management of Mental Health Disorders, Substance Use Disorders, and Suicide in Adults with Spinal Cord Injury: Clinical Practice Guideline for Health Care Providers.  Available for free download on the PVA website. 

PVA Consumer Guide -Depression: What You Should Know. This consumer guide is published by the Paralyzed Veterans of America and the Consortium for Spinal Cord Medicine. This document can be downloaded from the PVA website at no cost.

 

 

3.11. Drug/alcohol abuse

Substance Abuse Treatment Facility Locator
Provides information on drug and alcohol abuse treatment programs throughout the U.S. The site helps visitors find treatment facilities in their communities.

AddictionResource.net provides state-by-state listings of local treatment facilities organized in a database by type of drug (or alcohol) abused.

National Association of Addiction Treatment Providers has a state-by-state list of member providers' listings that provide insights into the focus and scope of each individual treatment program. Calling the individual program that most clearly represents the specific need for more detailed information is still recommended.

Alcohol

Alcohol and Other Drug Abuse Prevention for People with Traumatic Brain and Spinal Cord Injuries
This resource manual provides information, knowledge and skills on alcohol and other drug abuse prevention to be incorporated into the rehabilitation process.

Alcohol and Your Health After SCI
Article from the Spinal Cord Injury Update newsletter by the NW Regional SCI System, University of Washington, that discusses how alcohol use after SCI can cause unique health problems. (Spring, 2003)

Alcohol after SCI  
This is one of the Educational Brochures from the Rocky Mountain Regional Spinal Cord Injury System. This document is to help people with maintaining health and living long-term with a spinal cord injury. Spanish

Alcohol, Tobacco, and Other Drugs after Disability - Guide for Family  
This is one of the Educational Brochures from the Rocky Mountain Regional Spinal Cord Injury System. This document is to help people with maintaining health and living long-term with a spinal cord injury. Spanish


Anixter Center (Chicago, IL)
Anixter Center is a provider of high-quality vocational, residential and educational options, substance abuse prevention and treatment, and health care. Anixter Center is an advocate for the rights of people with disabilities to be full and equal members of the community.


Drugs, Street

Drug Rehab Guide
The Drug Rehab Guide is a collaborative effort by addiction professionals to provide a one-stop resource for the most common questions and concerns about finding, entering and leaving a drug rehabilitation center.

National Association on Alcohol, Drugs and Disability
The National Association on Alcohol, Drugs and Disability Inc., (NAADD) promotes awareness and education about substance abuse among people with co-existing disabilities.

Substance Abuse Treatment Facility Locator
The Substance Abuse Treatment Facility Locator is an online searchable directory pro- viding the location and services of more than 11,000 alcohol and drug abuse treatment facilities and programs in the United States. It also includes facilities in Puerto Rico, Guam, the Federated States of Micronesia, Palau, and the Virgin Islands. The Locator lists outpatient, residential, hospital inpatient, and partial hospitalization/day treatment facilities and programs, as well as halfway houses. It includes facilities that provide detoxification, treatment, and treatment with methadone or buprenorphine

Publications on Persons with Disabilities from Substance Abuse & Mental Health Services Administration
Printed copies of publications and materials are available from SAMHSA's NCADI. Some of these publications may also be available online.

SARDI - Substance Abuse Resources and Disability Issues
The SARDI Program seeks to improve the quality of life for persons with disabilities, including those who are concurrently affected by behavioral health issues. The SARDI Program achieves its objective by conducting collaborative and participatory research; developing intervention approaches and training; and disseminating related information.

Smoking's Effects on Secondary Complications of Spinal Cord Injury (Video)
This 11 minute video focuses on how many complications people experience after SCI are only made worse with smoking. Topics include respiratory complications (pneumonia), cardiovascular complications (blood flow), bladder cancer, osteoporosis (bone loss), pressure ulcers, pain, erectile dysfunction, and reproductive health for women. Also discussed, the almost equal harmful effects of secondhand smoke, how to quit smoking, and the benefits of quitting.

Suboxone treatment and physician locator
How treatment can help
Opioid dependence–addiction to prescription painkillers or heroin–is a chronic, or long-term, medical condition.
Because of the ways it affects the brain, opioid dependence isn't something many people can overcome on their own.
Fortunately, there are proven medical treatments that, along with counseling and behavioral therapy,
have helped millions of opioid-dependent people regain control over their condition. SUBOXONE Film is a discreet
and effective treatment you can take at home. By suppressing withdrawal symptoms and reducing cravings, SUBOXONE
Film can help reduce illicit opioid use, so you can focus on getting back to the things you care about.

Treatment4Addiction
Treatment4Addiction.com (T4A) is a comprehensive information resource regarding addiction treatment and mental health.
Our staff of addiction treatment professionals and experts have contributed a wealth of information, with the hope of
providing a quality website for individuals seeking addiction treatment programs, drug interventions and resources.

Drugs or Alcohol Addiction-Start your Recovery

Drugs or alcohol addiction-Start Your Recovery 
Drinking and drug use can be common in many settings. 
For many people, their use of one or both might be casual, and they are aware of their limits. 
But when drugs or alcohol become ingrained into or interfere with your daily life, it may be time to reassess your dependency. Whether you or someone you care about has transitioned from an occasional or social drinker to binge drinking regularly, increased dosage of prescribed opioid medication, or progressed to harder drugs like heroin and methamphetamine, it’s important to seek help and take control of substance use.

It’s not easy to recognize whether someone you know is experiencing problems with substances, much less yourself. Learning how to recognize the signs of addiction can help you determine whether you or a loved one should reach out for support. Doing so is often the first step on the path to recovery.

3.12. Fertility and Pregnancy

Male Fertility — Developed by Spinal Cord Injury BC (SCI BC), a non-profit organization dedicated to helping people with spinal cord injuries and related disabilities, adjust, adapt, and thrive. (2019)

The Male Fertility Research Program of the Miami Project to Cure Paralysis — At this link you'll find the following two resources: 

• Male Fertility After Spinal Cord Injury: A Guide For Patients, Second Edition —The Male Fertility Research Program of the Miami Project to Cure Paralysis is known around the world for research and clinical efforts in the field of male infertility in the SCI population. (2nd edition, 2010)

• Reproductive and Sexual Dysfunction in Men with Spinal Cord Injury — A video presentation by Emad Ibrahim, M.D., HCLD (June 11, 2020).  Dr Ibrahim is Director of The Miami Project’s Male Fertility Research Program. 

Female Fertility and Pregnancy  — Developed by Spinal Cord Injury BC (SCI BC), a non-profit organization dedicated to helping people with spinal cord injuries and related disabilities, adjust, adapt, and thrive. (2019) 

Pregnancy and SCI booklet — Developed by Spinal Cord Injury BC (SCI BC), a non-profit organization dedicated to helping people with spinal cord injuries and related disabilities, adjust, adapt, and thrive. (2015)

Pregnancy and Women with Spinal Cord Injury — Developed by Amie B. McLain, M.D., Taylor Massengill, B.A., and Phil Klebine, M.A., in collaboration with the SCI Model Systems Knowledge Translation Center (2015). 

3.13. Locating Free/Low-Cost/Sliding-Scale Clinics

Needy Meds is a 501(c)(3) non-profit information resource devoted to helping people in need find assistance programs to help them afford their medications and costs related to health care.

See easily searchable database of Free/Low-Cost/Sliding-Scale Clinics.  Then click on 'Diagnosis-Based Assistance' to find information specific to spinal cord injury.

To suggest additional free or low-cost SCI/D care provision, send that program, practice or clinic information to info@needymeds.org

3.14. Locating nursing advice for SCI/D

SCI/D Nurse Advice Line at Craig Hospital  
Our Information Specialists have found that nurses at Craig Hospital can provide unique information should you be scheduled for any of a broad range of diagnostic tests or surgical procedures.  They can also answer your questions about such health matters as bowel, bladder and/or skin concerns, helping you address or solve an issue before it becomes a major health problem.  This service provides a dedicated SCI nurse to answer non-emergent calls; they have the experience to help identify potential complications before they become serious health issues. In addition to answering specific health-related questions, callers can obtain general educational resources unique for healthy living with SCI/D. Their services are also available in Spanish. Don't delay; call to reach a nurse Monday-Friday, 9 a.m. - 6 p.m. (Mountain Time): 800-247-0257 or 303-789-8508.

CareCure Community Forums Our Information Specialists find that CareCure is invaluable in many cases as a resource for medically reviewed SCI/D web forum 'threads' or conversations between others living and dealing with the same SCI/D concerns. One can browse or search for related forum threads or conversations by typing the word or phrase into the CareCure search box.

3.15. Locating a therapist or counselor- US/Canada

Searchable database of therapists or counselors for a variety of issues including depression, anger management, family counseling, suicidal thoughts etc

3.16. Mental Health Resources

Mental Health Resources

Locating Services

• American Psychiatric Association Foundation - Find a psychiatrist
• American Psychological Association - Find a psychologist
• FindTreatment.gov - Find a provider treating substance use disorders, addiction, and mental illness.

Medicare and other insurers are broadening coverage of telehealth (including mental health counseling) services during COVID-19. We suggest contacting your insurer to see what is available in your area. Find a Telemental health provider.

United Spinal Association Mental Health Blogs

What You Need to Know About Mental Health Access

Don’t Be Ashamed to Ask for Help with Anxiety, You’re Not Alone

Crisis Help

If you, or someone you care about, are experiencing a crisis:

• Call 911 if you feel you’re in immediate danger
• Call the 988 Suicide & Crisis Lifeline (formerly known as the National Suicide Prevention Lifeline) which offers 24/7 access to trained crisis counselors who can help people experiencing suicidal, substance use, and/or mental health crisis, or any other kind of emotional distress. People can also dial 988 if they are worried about a loved one who may need crisis support. This service is available across the United States.
• Visit the Disaster Distress Helpline. This resource is provided by the Substance Abuse and Mental Health Services Administration (SAMHSA) which offers a number of resources for people with substance abuse and mental health concerns, including a treatment locator. Call 1-800-985-5990.
• Visit the National Domestic Violence Hotline  Operating around the clock, seven days a week, confidential and free of cost, the National Domestic Violence Hotline provides lifesaving tools and immediate support to enable victims to find safety and live lives free of abuse or call 1-800-799-7233 and TTY 1-800-787-3224.
• Disaster Hotline for People with Disabilities The hotline provides information, referrals, guidance, technical assistance and resources to people with disabilities, their families, allies, organizations assisting disaster impacted individuals with disabilities and others seeking assistance with immediate and urgent disaster related needs. The Disaster Hotline is always available for intake calls, 24 hours a day, 7 days a week, 365 days a year at (800) 626-4959.

 

3.17. Neurotech Network-SCI resources by category

• Neurotechnology for Traumatic Spinal Cord Injury Fact Sheet     This NSCIA Factsheet has been developed in collaboration with Jennifer French of the Neurotechnology Network.  The fact sheet is divided into two parts.   Part 1 provides an overview of neurotechnology and its applications to spinal cord injury. Part 2 provides a listing of the devices and therapies available and additional resources.  

• Centralized Neurotechnology Database    This up-to-date, searchable database is now available to find the latest developments in neurotechnology devices.  The purpose of this resource is to provide information to allow you to make better decisions. Final decisions regarding your health should be between you and your physician. 

       This database is provided by Neurotech Network, Inc., The Society to Increase Mobility, Inc., Neurotech Reports and its representatives; however, these    organizations do not rate, endorse, recommend or prescribe any products, procedures or services

3.18. Nutrition, Dietary and Weight Management (SEE CHAPTER 5)

For Nutrition, Dietary and Weight Management fact sheets, articles and streaming video resources, see Chapter 5 of Health & Wellness.

3.19. Pain Management

Primary Resources:

• Pain after Spinal Cord Injury - produced through collaboration between the Model System Knowledge Translation Center (MSKTC) and the SCI Model Systems. This health information is based on research evidence and/or professional consensus; it has been reviewed and approved by an editorial team of experts
• Pain after Spinal Cord Injury – part of a "Staying Healthy after SCI" series provided by Northwest Regional SCI Systems of Care. Brochure can be downloaded; includes detailed explanation of types of pain
• Pain Management following Spinal Cord Injury – information sheet provided by University of Alabama; discusses types of SCI pain and its management

Secondary Resources:

• Understanding Pain and SCI – provided by Northwest Regional SCI Systems of Care; a quick overview that includes preventive measures
• Pain and the Brain - What brain science tells us about why we feel pain and how we can change it; a conversation with Mark P. Jensen, PhD., a University of Washington Rehabilitation Psychologist

Organizations and resources:

• American Chronic Pain Association  1-800-533-3231  includes support groups                                   

       *  The Translational Pain Research Group 1- 617-525-PAIN(7246) paintrials@partners.org at the Brigham and Women's Hospital, Department of Anesthesia, are striving to bring laboratory research into a safe and effective clinical research setting       

Articles:  

• Aching Shoulders an excellent pamphlet, developed by Craig Hospital, that discusses the risk for shoulder pain in the person who uses a wheelchair for mobility; includes risk factors, aggravators and helpful hints to combat this problem
• Upper Extremity Pain part of the Craig Hospital pamphlet series, this pamphlet addresses the common problem of upper extremity pain and injury that can occur from daily overuse and aging; discusses types of injuries and treatment options
• Treating SCI Pain: What the Research Says - Treatment for spinal cord injury (SCI) pain continues to be a focus of research; this summary article discusses some of the treatment options being studied
• Upper Limb Pain in SCI  - An article in Northwest Regional SCI System's SCI Update, Spring 2012, V. 21, No. 2.  Persons who must use their shoulders, arms, and hands for transfers, wheeling and other mobility needs are at increased risk for developing problems with pain in their neck, shoulders, elbows and wrists.   This article addresses pain in each of these areas and offers tips to reduce your chances of developing pain, minimize the presence of pain, manage and treat pain
• Using Hypnosis for SCI Pain Management – This report discusses some of the myths and misunderstandings about the use of hypnosis in a therapeutic setting.  Available as a written report or in a 4 part video.  From the University of Washington department of Rehabilitation Medicine 
• Vitamin D and Pain - Article by Laurance Johnson, PhD, Paraplegia News, Dec 2012, V. 66, No. 12.  As a society, we are limited to sun exposure and as a result have become a vitamin deficient as a people.  This has led to disorders that are aggravated by chronic underexposure to the sun.  Some associated health problems include osteoporosis, cancer, cardiovascular disease, mental-health disorders, multiple sclerosis and diabetes.

Video Resources:

SCI Forum video "Managing Chronic Pain after Spinal Cord Injury"
from the Northwest Regional Spinal Cord Injury System
Chronic (or long-standing) pain is a common problem for people living with spinal cord injury, and it is often very difficult to treat. In this forum video, two UW Rehabilitation Medicine clinicians discuss the different types, causes and potential treatment options for chronic pain. Deborah Crane, MD, MPH, assistant professor and rehab physician at Harborview, reviews medications, surgical options, injections, pumps, massage, and other treatments. Dawn Ehde, PhD, professor and rehab psychologist discusses different self-management strategies for decreasing and coping with chronic pain, including relaxation, pacing and hypnosis.

More pain management video selections are available in the Video Resource Room Knowledge Book: Health & Wellness chapter

 

3.20. Respiratory management

3.21. Skin Care & Pressure Ulcers (SEE CHAPTER 4)

For Skin and pressure ulcer fact sheets, articles and streaming video resources, see Chapter 4 of Health & Wellness.

3.22. Sleep

Sleep Problems and Sleep Apnea in Persons with SCI- A written report provided by Northwest Regional SCI System is also available in an 80 minute streaming video (see related pages below).  Many people with spinal cord injuries have trouble getting a good night's sleep. Pain, breathing difficulties, and the need for care periodically through the night often disrupt sleep. Poor sleep quality can negatively affect daily life in numerous ways, including having trouble concentrating and becoming depressed. Sleep apnea is common in people with SCI and can have serious health consequences. This presentation reviews the causes and consequences of sleep problems, including a detailed discussion of sleep apnea, and explains treatments that can improve your health and well-being. In addition, an individual with SCI talks about his personal experience with sleep apnea and its treatment. At the end, Dr. Burns takes questions from the audience.

Sleep Apnea
An article provided by Craig Hospital that describes the problem of sleep apnea including types, risk factors, diagnosis and treatment for individuals with SCI. Revised 1/15.  

3.23. Spasticity

Information Sheets

• Spasticity and Spinal Cord Injury. Fact sheet from the Model Systems Knowledge Translation Center, published in 2011 in conjunction with the participating Spinal Cord Injury Model System Centers. This information sheet discusses the causes of spasticity and reviews available treatments including physical treatments, medications and surgical options. 

• Spasticity Information Page. Information page published by the National Institute of Neurological Disorders and Stroke (NINDS) describing spasticity causes and treatments.  This document also links to spasticity related research. 

• Spasticity Answers: (See "Download" section below to download this brochure from Allergan). This brochure discusses the following topics.
  • What is spasticity?
  • How do I know I have spasticity?
  • Spasticity can cause different types of problems
  • Who treats spasticity?
  • What should I do if I think I may have spasticity?
  • How can I prepare for a discussion about spasticity treatment with my specialist?

United Spinal Association, Spasticity Related Webinars

• Pain and Spasticity Management Without Pills. Presented 10/13/16 by Kimberly Anderson-Erisman, PhD and Ms. Jennifer French, MBA. 

• Know Your Options for Treating Severe Spasticity. Presented 3/11/15 by Dr. Gerald Bilsky, physiatrist. While there is no cure for severe spasticity, there are treatments. If you would like to learn more about these treatment options, please view this educational webinar. View Webinar Video     View Webinar PDF      Webinar Transcript PDF

Websites to Learn about Spasticity and Treatments  

• Baclofen Pump for ITB Therapy (Intrathecal Baclofen Therapy). Baclofen pump information from Medtronic.

• Botoxspasticity.com: Information regarding Botox^® treatment for spasticity, provided by Allergan. Provides information regarding treatment, links to locate specialists for Botox® treatment, and information regarding reducing your treatment costs.

Patient Assistance Programs for Spasticity Treatments

• Intrathecal Drug Delivery, Coverage & Reimbursement -Please note that this site is for healthcare professionals.  

• Reimbursement Assistance Program- Acorda Therapeutics patient assistance program for eligible patients prescribed Zanaflex to manage their spasticity.

• Programs to Help You With Botox® Treatment Costs-Please see "Downloads" section below to download this Allergan brochure.

Other Video Resources

• Spastic Hypertonia (27 minutes): This University of Alabama at Birmingham (UAB) provided video defines Spastic Hypertonia (spasticity), explaining the advantages and disadvantages of spasticity, and general treatment options if desired. Also offers a general understanding of sensation and reflex.

• Spasticity and Spinal Cord Injury, Part 1. The Good, The Bad, and The Not-So-Ugly: Medical and Pharmacological Treatments for Spasticity. An SCI Forum presented on January 13, 2015, by Rina Reyes, MD, Amy Icarangal, PT, and Geralyn Bertellotti, OT at the University of Washington Medical Center. Spasticity in spinal cord injury is often viewed as a cause of dysfunction and pain. But there is more to it than that. This SCI Forum presentation explored the positive effects of spasticity ("the good"), the negative effects ("the bad"), the neutral effects ("the not so ugly"), and a variety of interventions for spasticity. A rehabilitation medicine physician, a physical therapist, and an occupational therapist summarized the causes of spasticity and discussed a variety of conventional and non-conventional treatment options. Watch the video or read the report.

• Spasticity and Spinal Cord Injury - Part 2. Real Life Stories: A Panel Discussion. An SCI Forum presented on February 10, 2015 at the University of Washington Medical Center. Spasticity is an almost universal complication of spinal cord injury, but the way it manifests itself varies enormously from person to person. In this forum, four individuals with SCI share their unique experiences with spasticity since their injuries, what treatments they have tried over the years, and how they are managing their spasticity now. The discussion is moderated by Dr. Jeanne Hoffman, UW professor and clinical psychologist in the UW Department of Rehabilitation Medicine.

• Intrathecal Baclofen Therapy for Management of Spasticity.  An SCI Forum presented on January 12, 2010 by Rina Reyes, MD at the University of Washington Medical Center. This 85 minute talk provides in-depth information about when to consider an implanted, programmable baclofen pump for spasticity management; the process of being evaluated for this treatment; the potential advantages, limitations, and drawbacks to the pump; and requirements to maintain a baclofen pump. A panel of individuals (two with spinal cord injury and one with MS) who have an implanted baclofen pump discuss their reasons for choosing the device and what the experience has been like for them.

  

3.24. Spirituality

Spirituality, a publication of Craig Hospital regarding spirituality following SCI. Publication #763, Revised 2015.

3.25. Suicide prevention

National Suicide Prevention Lifeline: Are you feeling desperate, alone or hopeless? Call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255), a free, 24-hour hotline available to anyone in suicidal crisis or emotional distress. Your call will be routed to the nearest crisis center to you.

Red Nacional de Prevención del Suicidio

Cuando usted llama al número 1-888-628-9454, su llamada se dirige al centro de ayuda de nuestra red disponible más cercano. Cuando el centro contesta su llamada, usted estará hablando con una persona que le escuchará, le hará preguntas y hará todo lo que esté a su alcance para ayudarlo. Para información en español haga clic aquí.

For Hearing and Speech Impaired with TTY Equipment:
1-800-799-4TTY (4889)

------------------------

Veterans Crisis Line

Are you a veteran in emotional distress? Please call 1-800-273-TALK and press 1 to be routed to the Veterans Crisis Line or online chat at: Veterans chat live with a counselor

Suicide warning signs

Seek help as soon as possible by contacting a mental health professional or by calling the National Suicide Prevention Lifeline at 1-800-273-TALK if you or someone you know exhibits any of the following signs:

• Threatening to hurt or kill oneself or talking about wanting to hurt or kill oneself
• Looking for ways to kill oneself by seeking access to firearms, available pills, or other means
• Talking or writing about death, dying, or suicide when these actions are out of the ordinary for the person
• Feeling hopeless
• Feeling rage or uncontrolled anger or seeking revenge
• Acting reckless or engaging in risky activities - seemingly without thinking
• Feeling trapped - like there's no way out
• Increasing alcohol or drug use
• Withdrawing from friends, family, and society
• Feeling anxious, agitated, or unable to sleep or sleeping all the time
• Experiencing dramatic mood changes
• Seeing no reason for living or having no sense of purpose in life'

----------------------------------------—

PVA Clinical Practice Guideline (2020): Management of Mental Health Disorders, Substance Use Disorders, and Suicide in Adults with Spinal Cord Injury: Clinical Practice Guideline for Health Care Providers.  Available for free download on the PVA website. 

----------------------------------------—

Suicide Prevention Resource Center
1 (800) 273 TALK (8255)

The Suicide Prevention Resource Center at the University of Oklahoma Health Sciences Center is supported by a grant from the U.S. Department of Health and Human Services (HHS), Substance Abuse and Mental Health Services Administration (SAMHSA), Center for Mental Health Services (CMHS), under Grant No. 1H79SM083028-01

The views, opinions, and content expressed in this product do not necessarily reflect the views, opinions, or policies of CMHS, SAMHSA, or HHS.

Copyright © October 2020-2021 by The Board of Regents of the University of Oklahoma.  All Rights Reserved.

Copyright © 2002-September 2020 by Education Development Center, Inc.  All Rights Reserved.

Counseling on Access to Lethal Means (CALM)

 

3.26. Women's Issues

For additional information, visit:

NSCIA womans issues

UAB resources - Woman with disabilities

4.1. Model System Knowledge Translation Center Factsheets related to skin care and pressure injuries in Spinal Cord Injury

Model Systems Knowledge Translation Center (MSKTC) Factsheets

The following Pressure Sore 6 part factsheet series was produced through a collaboration between the Model Systems Knowledge Translation Center (MSKTC) and the SCI Model Systems. These materials undergo expert and consumer reviews to ensure they are up-to-date, evidence-based, and consumer-friendly. The health information provided on MSKTC is not meant to replace the advice from a medical professional. You should consult your health care provider regarding specific medical concerns or treatment.

Pressure Sore 6 Part Series:     

• Causes and Risks
• Preventing Pressure Sores
• How to do Pressure Reliefs (Weight Shifts)
• Building Skin Tolerance for Pressure
• Areas of the Body at High Risk for Pressure Sores
• Recognizing and Treating Pressure Sores

The following MSKTC factsheet is specifically related to surgical approaches to pressure injuries:

• Surgical and Reconstructive Treatment of Pressure Injuries. Available in English and Spanish, this MSKTC factsheet offers general information about surgical and reconstructive treatment of pressure injuries. The factsheet was developed by Jorge de la Torre, M.D., F.A.C.S., M.S.H.A.; Cheryl Lane, DNP, ANP & FNP, CWCN, CRRN; and Phil Klebine, M.A in collaboration with the MSKTC.

 

 

 

4.2. Pressure Relief in a Manual Wheelchair-RRTC

PRESSURE RELIEFS IN A MANUAL WHEELCHAIR

The Push-up

One way to perform a pressure relief is to push up from your chair to take the pressure off your buttocks and the boney areas.

To perform this type of pressure relief, lock your wheels and fully loosen or unbuckle your seat belt, then lift using the arm rests of your chair so that your buttocks lift off of the cushion.  If you do not have arm rests, you can press up from your wheels.  

Once up, fully extend your arms and lock your elbows.  It is important to make sure you completely lift your buttocks off the cushion and hold for 15 seconds every 15 minutes or 30 seconds every 30 minutes (unless a different amount of time is recommended by your medical team) so that your skin can recover from the pressure of sitting. 

 

Leaning from Side to Side

This technique is useful for performing discreet pressure reliefs in social settings or if you are unable to completely lift your buttocks off the cushion.

One way to perform a pressure relief is to lean to your side to remove pressure off your buttock.  Please note that this is considered only half of a relief as only one buttock is lifted at a time.  You will need to perform this relief to each side for 15 seconds every 15 minutes or 30 seconds every 30 minutes (unless a different amount of time is recommended by your medical team).

Lean to the right side until the left buttock including the boney area is lifted off your seat cushion.  You may need to push through the arm rest and lock out your left elbow to achieve the full weight shift and clearance.  If you do not have arm rests, you can press up from your wheels.  Return to your sitting position and repeat on the opposite side. Lean your body to the left until you achieve full clearance of the right buttock, including the boney area and hold. 

Leaning Forward

To perform this pressure relief, lean forward to remove pressure from your buttocks. Before starting this activity, make sure to lock you wheelchair.

Lean forward in your chair until you can slide your hands underneath your buttocks and hold that position for 15 seconds every 15 minutes or 30 seconds every 30 minutes (unless a different amount of time is recommended by your medical team).

One option is to lean forward and rest your chest on your knees. Another method is to lean forward on a desk or table.  The key is to make sure you have pressure off your buttocks and boney areas. 

Disclaimer

This fact sheet only provides general information. It is only for informational and educational purposes and should not be used to diagnose or treat a medical condition. It is not a substitute for professional medical advice relative to your specific medical conditions. Always seek the advice of your doctor or other qualified health provider before starting any new treatment or with any questions you may have about your medical condition.

 

4.3. Pressure Relief in a Power Chair-RRTC

Pressure Reliefs in a Power Wheelchair

 

Tilting or Reclining

One way to perform a pressure relief is to make your chair tilt or recline to take the pressure off your buttocks and boney areas.

Stay in a tilt position for at least 30 seconds every 15-30 minutes unless a different amount of time is recommended by your medical team. Make sure you get training from your health care provider on how to tilt or recline in the chair that YOU use.  It is important to make sure you are relieving enough pressure and also doing it safely!  Talk with your health care provider about how you should position your seat belt when tilting or reclining. 

Tilt Systems maintain the seat-to-back angle of your chair the same but change the angle of your seating system relative to the ground.

Research supports using maximum tilt to properly relieve pressure and assure adequate blood flow.  You should consult your medical health professionals to determine the tilt angle that will provide you the most appropriate pressure relief.

Recline systems can elevate your legs and open the seat-to-back angle of your chair to reduce the pressure.  The seat angle stays the same with respect to the ground.  Your health care provider will help you find the most appropriate technique and technology to assist you with your pressure relief.

 

Leaning Forward

Turn off your power chair before starting this activity and reposition your seat belt as needed.

To perform this pressure relief, lean forward to remove pressure from your buttocks.  Don't try this alone unless you are sure you are able to get back up!  The key is to make sure you have pressure off your buttocks and boney areas.  One option is to lean forward and rest your chest or elbows on your knees.

Another method is to lean forward on a desk or table.  Lean forward in your chair until your boney areas are off your cushion and hold that position for 15 seconds every 15 minutes or 30 seconds every 30 minutes (unless a different amount of time is recommended by your medical team).

A Modified Leaning Side to Side 

Turn off your power chair before starting this activity and reposition your seat belt as needed.  

Don't try this alone unless you are sure you are able to get back up!

One way to perform a pressure relief is to lean to your side to take pressure off your opposite buttock.  Please note that this is considered only half of a pressure relief because only one buttock is lifted at a time.  You will need to perform this pressure relief to each side for 15 seconds every 15 minutes or 30 seconds every 30 minutes (unless your medical team recommends a different amount of time).

This participant is demonstrating a modified leaning side to side pressure relief by hooking her elbow behind the wheelchair push handle.  She could have used the back rest to do this as well.  Lean to the left side until the right buttock including the boney area is lifted off your seat cushion. 

You may need to push through the arm rest of your chair and lock out your right elbow to achieve the full weight shift and clearance.  Now, do a pressure relief to the other side, reversing the procedure.

You can also use a table or other solid object to lean against for help.  When you have finished your pressure relief, you can push off the table to help you return to sitting. You may also be able pull yourself up using your wheelchair arm rest, back or push handle. Next, do a pressure relief to the other side.  

Disclaimer

This fact sheet only provides general information.  It is only for informational and educational purposes and should not be used to diagnose or treat a medical condition.  It is not a substitute for professional medical advice relative to your specific medical conditions.  Always seek the advice of your doctor or other qualified health provider before starting any new treatment or with any questions you may have about your medical condition.

4.4. Skin Breakdown, Pressure Ulcer Prevention with SCI-RRTC

Untreated pressure sores can lead to widespread infections, limb amputations or worse—loss of life! Even minor problems can get out of hand, limiting your ability to take care of yourself, function at work, or result in lengthy and costly hospital stays.

There is no such thing as an insignificant pressure sore.

What is a pressure sore?

A pressure sore (also called pressure ulcer, decubitus ulcer, bedsore, or skin breakdown) is an area of the skin or underlying tissue (muscle, bone) that is damaged due to loss of blood flow to the area. Blood flow to the skin keeps it alive and healthy. If the skin does not get

blood, it will die. Normally, sensation acts as a warning system, signaling you to move or shift your weight to let blood flow return to an area before damage occurs. Because you may not be able to feel discomfort or pain after a spinal cord injury, you cannot depend on your sensation of pressure to cue you to move or shift weight to relieve pressure. Skin breakdown happens when pressure decreases blood flow to the skin. Up to 80% of individuals with SCI will have a pressure sore during their lifetime, and 30% will have more than one pressure sore.

How do pressure sores happen?

 

TOO MUCH PRESSURE ON THE SKIN FOR TOO LONG.. Unrelieved pressure is the most common cause of pressure sores in SCI. Common high-pressure situations are:

 Not having a proper wheelchair cushion.

 Sitting too long without performing a pressure relief.

 Lying too long without turning to relieve pressure.

 Not enough padding in bed (to protect bony areas of the body, such as the heels and hips)

 Clothing and shoes that fit too tightly

 Sitting or lying on hard objects

 Poor sitting posture

 

Besides pressure on the skin, other factors increase your risk of forming pressure ulcers too:

 Decreased circulation, due to:

 Smoking

 Diabetes

 High blood pressure

 Poor positioning & poor cushion support.

 Physical activity that increases repetitive pressure over an area vulnerable to breakdown or causes excessive perspiration (sweat) in a vulnerable area.

 Shearing of the skin

 Poor nutrition & dehydration

 Aging - as you age your skin will become more thin and vulnerable to injury.

 Being over- or underweight

 Loss of muscle mass that previously would have provided a natural cushion over the boney parts of your body (such as heels, hips, and tailbone, also known as the "sacrum").

 Moisture - wet skin (from urine, stool , sweat, water) is more likely

 

Poor circulation can lead to pressure sores and other skin related issues such as heightened sensitivity, scrapes or bruises that take longer to heal, and chafing due to excess moisture or sweating. Without enough blood, oxygen, and nutrients, your skin can't stay healthy.

 

Sitting or lying in one position for a long period of time decreases blood circulation to the areas supporting your body weight. Pressure sores usually form on parts of the skin close to bone (such as hips and heels) that carry weight when you sit or lie down for a long time.

 

Swelling or "edema"– often a side effect of paralysis – leaves skin more vulnerable to injury and breakdown. Elevate your legs a few times a day as well as your arms. Support socks/stockings can also help with swelling, however it's best to consult a doctor or nurse regarding foot care and footwear.

 

Smoking reduces circulation and makes you prone to frequent pressure sores because it dries out the skin. It also increases your risk of respiratory infections such as pneumonia and bronchitis. So, whether you are a heavy or light smoker, the effects on your body are still very harmful!

Find out more by reading, "Smoke? STOP!!" at:

http://www.spinalcord.uab.edu/show.asp?durki=108408   

 

The Importance of Positioning

About seventy-five percent of your body's weight is concentrated on your buttocks when you sit upright (MedlinePlus, 2009). Although wheelchair cushions reduce pressure, good skin care and positioning are the most important part of preventing sores. Areas of your body where you are very likely to develop a pressure sore when you are in your wheelchair are:

 Your tailbone or buttocks

 Your shoulder blades and spine

 The backs of your arms and legs where they rest against the chair

 Your heels

 

Positioning

Changing positions frequently is key in preventing skin breakdown. Having a schedule for changing positions is one of the best ways to help prevent pressure sores. When in your chair, pay attention to your posture; slouching puts more pressure on the lower back and tailbone (sacrum) areas. In a seated position, try to maintain a 90-degree (right) angle between your upper body and your hips. When sitting in your wheelchair, you should do pressure reliefs every 15 to 30 minutes. In bed, you can reduce pressure by placing pillows under and between your legs, and a general recommendation is to change positions every two hours when in bed.

 

Tips for Changing Positions

 Perform weight shifts every 15-30 minutes while sitting.

 Turn or reposition at least every two hours while in bed.

 Use pillows under and/or between legs when lying in bed to keep bones from rubbing together.

 Avoid lying directly on the hip bone and keep a 30-degree angle position.

 When lying on your back, keep your lower legs up by placing a thin foam pad or pillow under the lower part of the legs (mid-calf

       to ankle). Do not place the pad or pillow directly under the knee—this reduces the flow of blood to the lower leg areas.

 Use pillows or small pads to keep the knees and ankles from touching each other

 

The Importance of Staying Active, Eating Healthy

Physical Activity

Physical activity has many health benefits and is important for your health and circulation. However, excessive sweating and moisture resulting from exercise make you an easy target for skin breakdown. When exercising, use towels for excess sweat and wear lightweight or loose

clothing to help skin breathe. Don't stay in wet clothing after exercising. Pay close attention to your skin's reaction to things like lotions, powders, or fragrances.

Nutrition You already know that SCI changes your body composition and the way your body uses food. Because of these changes, fewer calories are needed, so you should really try to make those calories count. Try to eat a consistent and balanced diet. Don't skip meals or cut out certain food groups.

Poor diet increases your risk of pressure sores and will make it more likely to have recurring pressure sores, more difficulty with healing, and more severe infections. Poor nutrition promotes swelling, which is bad for circulation, and prevents oxygen from getting to cells throughout your body. Being overweight is also risky because it's harder to shift your weight, do pressure reliefs, and move around. Your doctor, nurse, or a dietitian can give you advice about balancing your diet.

Hydrate

You need lots of water! If you've got a wound or sore, you can lose more than a

liter of water each day, just as part of the healing process! Hydration is also key to

maintaining healthy circulation and skin health. While 6-8 cups may be recommended

for someone on a catheterization program, others might need more than that. Talk to your doctor about your fluid intake. Also, if you're losing fluids from an open sore -- or for any other reason -- you'll need to increase your water intake even more and avoid drinking alcohol. If you do choose to drink alcohol, use it in moderation. Excessive alcohol consumption often leads to

dehydration and can prevent your body from effectively using food and vitamins.

 

Good Eats

A healthy well-balanced diet is important

 

Proteins: Lean meats, eggs, dairy foods, and beans and legumes help

maintain skin elasticity.

Carbs: Complex carbs (carbohydrates) like fruits, vegetables, and whole

grain breads and cereals give you the calories you need for energy,

nourishment and wound healing. Simple carbs include refined flours

and sugars and are more fattening and negatively affect your health.

Zinc: Found in foods like fish, red meats, whole grains, and beans, zinc is crucial for skin repair because it helps metabolize carbohydrates, fats and proteins.

Vitamins: Both Vitamins A and C increase skin's strength. Vitamin A is found in dark green and orange vegetables; cantaloupe, and milk. Vitamin C is found in citrus fruits and many vegetables. Talk to a doctor before taking vitamins or supplements and be careful of overdose! Beware that too much vitamin A can be toxic (poisonous).

 

General Health

Your physical health affects your skin. If you're sick, every part of your body can be affected. Fevers change your metabolism (i.e. how your body manages energy), alter skin tolerance, and lower your body's infection resistance. Bladder infections don't just affect your bladder; ear infections don't just affect your ears. Remember to check your skin at least twice a day for signs of breakdown because loss of sensation can make it hard to perceive pressure and pain. If you've been sick or hospitalized, muscle atrophy (getting smaller) and weight loss can occur quickly. In either case, you lose fat and muscle that help cushion your bones and your risk of pressure sores increases.

 

Take Home Tips:

 

Remember That...

 You should check your skin at least twice a day.

 You should change body positions every 2 hours when in bed.

 You should do pressure reliefs in your chair every 15-30 minutes.

 Try to maintain good posture and avoid positions that allow you to slide or slump.

 Avoid sliding when transferring on surfaces (e.g., from the wheelchair to bed)—this causes

       friction that can lead to skin abrasions.

 Smoking greatly increases your risk for pressure sores as well as many other health issues.

 As you age with your injury, you are more susceptible to pressure sores and skin breakdown.

 Good hygiene, nutrition and attitude make all the difference in your health.

 You should inspect your equipment often and periodically get your equipment reassessed by a rehabilitation professional.

Sources:

MedlinePlus Medical Encyclopedia: Pressure Ulcer (Online). [Accessed 12/20/2010]: http://www.nlm.nih.gov/medlineplus/ency/article/007071.htm

Modelsystems Knowledge Translations Center (MKSTC). SCI Skincare and Pressure Sores. [Accessed 12/20/2010]: http://msktc.washington.edu/sci/

factsheets/sci_factsheets.asp#skin

For more information or alternative formats, please visit our web site at:

http://www.sci-health.org  or call 1-877-278-0644

Disclaimer

This fact sheet only provides general information. It is only for informational and educational purposes and should not be used to diagnose or treat a medical condition. It is not a substitute for professional medical advice relative to your specific medical conditions. Always seek the advice of your doctor or other qualified health provider before starting any new treatment or with any questions you may have about your medical condition.

Copyright © 2011 RRTC on Spinal Cord Injury - All Rights Reserved

Funded by the National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Department of Education Grant #H133B090002

4.5. Skin Care-RRTC

Skin Care: Skin Breakdown and Pressure Ulcer Prevention in Persons with SCI

Untreated pressure sores can lead to widespread infections, limb amputations or worse— loss of life! Even minor problems can get out of hand, limiting your ability to take care of yourself, function at work, or result in lengthy and costly hospital stays. There is no such thing as an insignificant pressure sore.

What is a pressure sore?

A pressure sore (also called pressure ulcer, decubitus ulcer, bedsore, or skin breakdown) is an area of the skin or underlying tissue (muscle, bone) that is damaged due to loss of blood flow to the area. Blood flow to the skin keeps it alive and healthy. If the skin does not get blood, it will die.

Normally, sensation acts as a warning system, signaling you to move or shift your weight to let blood flow return to an area before damage occurs.  Because you may not be able to feel discomfort or pain after a spinal cord injury, you cannot depend on your sensation of pressure to cue you to move or shift weight to relieve pressure. Skin breakdown happens when pressure decreases blood flow to the skin. Up to 80% of individuals with SCI will have a pressure sore during their lifetime, and 30% will have more than one pressure sore.

How do pressure sores happen?

TOO MUCH PRESSURE ON THE SKIN FOR TOO LONG is the most common cause of pressure sores in SCI. Common high-pressure situations are:

• Not having a proper wheelchair cushion.
• Sitting too long without performing a pressure relief.
• Lying too long without turning to relieve pressure.
• Not enough padding in bed (to protect bony areas of the body, such as the heels and hips.
• Clothing and shoes that fit too tightly.
• Sitting or lying on hard objects.
• Poor sitting posture.

 Besides pressure on the skin, other factors increase your risk of forming pressure ulcers too:

• Decreased circulation, due to:
  • Smoking,
  • Diabetes,
  • High blood pressure.
  • Poor positioning & poor cushion support.
  • Physical activity that increases repetitive pressure over an area vulnerable to breakdown or causes excessive perspiration (sweat) in a vulnerable area.
  • Shearing of the skin.
  • Poor nutrition & dehydration .
  • Aging - as you age your skin will become thinner and more  vulnerable to injury.
  • Being over-or underweight.
  • Loss of muscle mass that previously would have provided a natural cushion over the bony areas of your body (such as heels, hips, and tailbone, also known as the "sacrum").
  • Moisture - wet skin (from urine, stool , sweat, water) is more likely to break down.
  • Dry, flaky skin can crack and become inflamed and infected.

Circulation

 Poor circulation can lead to pressure sores and other skin problems. Some of these problems are increased sensitivity, scrapes or bruises that take longer to heal, and chaffing due to excess moisture or sweating. Without enough blood, oxygen, and nutrients, your skin can't stay healthy.

Sitting or lying in one position for a long period of time decreases blood circulation to the areas supporting your body weight. Pressure sores usually form on parts of the skin close to bone (such as hips and heels) that carry weight when you sit or lie down for a long time.

Swelling or "edema"– often a side effect of paralysis – leaves skin more vulnerable to injury and breakdown. Elevate your legs a few times a day as well as your arms. Support socks/stockings can also help with swelling, however it's best to consult a doctor or nurse regarding foot care and footwear.

Smoking reduces circulation and makes you prone to frequent pressure sores because it dries out the skin. It also increases your risk of respiratory infections such as pneumonia and bronchitis. So, whether you are a heavy or light smoker, the effects on your body are still very harmful!

Find out more by reading, "Smoke? STOP!!" at: http://www.spinalcord.uab.edu/show.asp?durki=108408.

THE IMPORTANCE OF POSITIONING

About 75% of your body's weight is concentrated on your buttocks when you sit upright (MedlinePlus, 2009). Although wheelchair cushions reduce pressure, good skin care and positioning are the most important part of preventing sores.  Areas of your body where you are very likely to develop a pressure sore when you are in your wheelchair are:

• Your tailbone or buttocks.
• Your shoulder blades and spine.
• The backs of your arms and legs where they rest against the chair.
• Your heels.

 Positioning

Changing positions frequently is key in preventing skin breakdown. Having a schedule for changing positions is one of the best ways to prevent pressure sores. When in your chair, pay attention to your posture; slouching puts more pressure on the lower back and tailbone (sacrum) areas. In a seated position, try to maintain a 90-degree (right) angle between your upper body and your hips. When sitting in your wheelchair, you should do pressure reliefs every 15 to 30 minutes. In bed, you can reduce pressure by placing pillows under and between your legs, and a general recommendation is to change positions every two hours when in bed.

Tips for Changing Positions

• Perform weight shifts every 15-30 minutes while sitting
• Turn or reposition at least every two hours while in bed
• Use pillows under and/or between legs when lying in bed to keep bones from rubbing together
• Avoid lying directly on the hip bone and keep a 30-degree angle position
• When lying on your back, keep your lower legs up by placing a thin foam pad or pillow under the lower part of the legs (mid-calf to ankle). Do not place the pad or pillow directly under the knee—this reduces the flow of blood to the lower leg areas.
• Use pillows or small pads to keep the knees and ankles from touching each other

 THE IMPORTANCE OF STAYING ACTIVE AND EATING HEALTHY

Physical Activity

Physical activity has many health benefits and is important for your health and circulation. However, excessive sweating and moisture resulting from exercise make you an easy target for skin breakdown. When exercising, use towels for excess sweat and wear lightweight or loose clothing to help skin breathe. Don't stay in wet clothing after exercising. Pay close attention to your skin's reaction to things like lotions, powders, or fragrances.

Nutrition

You already know that SCI changes your body composition and the way your body uses food. Because of these changes, fewer calories are needed, so you should really try to make those calories count. Try to eat a consistent and balanced diet. Don't skip meals or cut out certain food groups. Poor diet increases your risk of pressure sores and will make it more likely to have recurring pressure sores, more difficulty with healing, and more severe infections. Poor nutrition promotes swelling – which you already know is bad for circulation – and prevents oxygen from getting to cells throughout your body. Being overweight is also risky because it's harder to shift your weight, do pressure reliefs, and move around. Your doctor, nurse, or a dietitian can give you advice about balancing your diet.

Hydrate

Drink Water!!

You need lots of water! If you've got a wound or sore, you can lose more than 4 cups of water each day, just as part of the healing process! While 6-8 cups may be recommended for someone on a catheterization program, others might need more than that. Ask your doctor how much water is right for you.

Also, if you're losing fluids from an open sore – or for any other reason – you'll need to increase your water intake even more. Drinking alcohol is not recommended. If you do choose to, use it in moderation because it often leads to dehydration. It can also prevent your body from effectively using food and vitamins.

Good Eats

A healthy well-balanced diet is important:

• Proteins: Lean meats, eggs, dairy foods, and beans and legumes help maintain skin elasticity.
• Carbs: Complex carbs (carbohydrates) like fruits, vegetables, and whole grain breads and cereals give you the calories you need for energy, nourishment, and wound healing. Simple carbs include refined flours and sugars and are more fattening and negatively affect your health.
• Zinc: Found in foods like fish, red meats, whole grains, and beans, zinc is crucial for skin repair because it helps metabolize carbohydrates, fats, and proteins.
• Vitamins: Both Vitamins A and C increase skin's strength. Vitamin A is found in dark green and orange vegetables; cantaloupe, and milk. Vitamin C found in citrus fruits and many vegetables. Talk to a doctor before taking vitamins or supplements and be careful of overdose! Beware that too much vitamin A can be toxic (poisonous).

General Health

Your physical health affects your skin. If you're sick, every part of your body can be affected. Fevers change your metabolism (i.e. how your body manages energy), alter skin tolerance, and lower your body's infection resistance. Bladder infections don't just affect your bladder; ear infections don't just affect your ears. Remember to check your skin at least twice a day for signs of breakdown because loss of sensation can make it hard to perceive pressure and pain. If you've been sick or hospitalized, muscle atrophy (getting smaller) and weight loss can occur quickly. When this happens, you have less fat and muscle that help cushion your bones and your risk of pressure sores increases.

Take Home Tips:

Remember That...

• You should check your skin at least twice a day.
• You should change body positions every 2 hours when in bed.
• You should do pressure reliefs in your chair every 15-30 minutes.
• Try to maintain good posture and avoid positions that allow you to slide or slump.
• Avoid sliding when transferring on surfaces (e.g., from the wheelchair to bed)—this causes friction that can lead to skin abrasions.
• Smoking greatly increases your risk for pressure sores as well as many other health issues.
• As you age with your injury, you are more susceptible to pressure sores and skin breakdown.
• Good hygiene, good nutrition, and a good attitude make all the difference in your health.
• You should inspect your equipment often, and periodically getting your equipment reassessed by a rehabilitation professional

 Sources:

• MedlinePlus Medical Encyclopedia: Pressure Ulcer (Online). [Accessed 12/20/2010]: http://www.nlm.nih.gov/medlineplus/ency/article/007071.htm
• Modelsystems Knowledge Translations Center (MKSTC). SCI Skincare and Pressure Sores. [Accessed 12/20/2010]: http://msktc.washington.edu/sci/factsheets/sci_factsheets.asp#skin

For more information or alternative formats, please visit our web site at: http://www.sci-health.org or call 1-877-278-0644.

Disclaimer

This fact sheet only provides general information. It is only for informational and educational purposes and should not be used to diagnose or treat a medical condition. It is not a substitute for professional medical advice relative to your specific medical conditions. Always seek the advice of your doctor or other qualified health provider before starting any new treatment or with any questions you may have about your medical condition.

Funded by the US Dept. of Education, NIDRR, Grant #H133B090002

4.6. Miscellaneous: Skin Care and Pressure Sores

North West Regional Spinal Cord Injury System (NWRSCIS) Skin Care and Pressure Ulcer Resources

NWRSCIS Forum presented an educational video in January 2012 that is also available in print  Pressure Ulcers Can Wreck You Life: Preventing and Managing Skin Problems after SCI - It includes vital information about preventing pressure ulcers, inspecting your skin, recognizing early signs of skin breakdown, treatment options available, monitoring and managing healing and much more. Photos of pressure ulcers in different stages are also included.

Patient Education Pamphlets on Staying Healthy after a Spinal Cord Injury

o   Taking Care of Pressure Sores

o   Maintaining Healthy Skin (Part I)

o   Maintaining Healthy Skin (Part II)

Paralyzed Veterans of America (PVA) Clinical Practice Guideline-Pressure Ulcer Prevention and Treatment after Spinal Cord Injury (2nd ed., 2014).  This guideline can be downloaded on the PVA website, at no cost. 

PVA Consumer Guide-Pressure Ulcers; What You Should Know

New Mobility Skin Care and Pressure Ulcer-related articles:

Strategies to Avoid Pressure Sores September 2019

Taking Off the Pressure January 2017

A New Model for Wound Care April 2013

Healthy Skin, Healthy Healing January 2011

Deep Tissue Pressure Sores March 2011 

Escaping the Hot Seat April 2008

See the Skin Care & Pressure Sore video presentation in Health & Wellness chapter of the Video Resource Room Knowledge Book

5.1. Weight Management and SCI Factsheet- Published by the RRTC on Secondary Conditions in the Rehabilitation of Individuals with Spinal Cord Injury

For example, the target weight for a 6'0" man with paraplegia is 150-158 lbs, while a 6'0" man with tetraplegia has a target weight of 142-150lbs.  A 5'6" female with paraplegia's target weight is 126-133 lbs. If she has tetraplegia, it's 119-126 lbs.

DAILY CALORIE INTAKE

Depending on level of activity, people with SCI tend to need fewer calories per day. Cox et al[2] developed a formula to calculate caloric needs. The formula is:

• Persons with paraplegia: 27.9 calories x body weight in kg. (1 kg = 2.2 lbs)

• Persons with tetraplegia: 22.7 calories x body weight in kg.

The formula is based on your target weight. Although this formula is still being used, it has several limitations:

• The formula doesn't account for gender or age - Older people tend to need fewer calories than younger people.

• The formula doesn't account for your activity level - The more active you are, the more calories you burn and the easier it is to control weight gain

WEIGHT MANAGEMENT TIPS

• Eat regular meals.
• Don't overeat.
• Try to find a healthy pattern and stick to it.
• Stay as active as possible.

RESOURCES

WEIGHT MANAGEMENT PROGRAM: For those of you who have made a commitment to do something about weight management or who are just interested in learning more about it, the University of Alabama Spinal Cord Injury Model System has designed a 12 week program specifically for individuals with spinal cord injury. The EatRight program includes a weekly  workbook and a video of the topic of the week.

http://www.uab.edu/medicine/sci/uab-scims-information/eatrightr-weight-management-program

NUTRITION FACTSHEET

http://sci-health.org/RRTC/publications/PDF/SCI-Nutrition.pdf

REFERENCES

5.2. Nutrition-RRTC

Eating is one of life's greatest pleasures. Your body needs food that is rich in nutrients to create energy, resist infection and enable you to have a full, productive life. After a spinal cord injury, how your body's systems – such as bowel, bladder and skin – function are altered due to your paralysis. Because you are less active, your muscles and bones may become weaker. Your circulatory and respiratory systems that pump blood and oxygen to your heart, lungs and throughout your body may not work as effectively. You will also need to pay attention to your bowel and bladder function. With less physical activity, you burn off fewer calories and may gain weight or possibly maintain weight but replace muscle with fat. Excess weight adds stress on your heart and may make weight shifts and transfers more difficult. This can contribute to skin breakdown or pressure ulcers. One thing that you can do to reduce some of these risks is to maintain a healthy diet.

 

Specific diet recommendations for spinal cord injury include:
1. Adequate fiber* and fluids to prevent constipation;
2. Adequate protein** to prevent pressure ulcers and preserve lean body mass (muscles);
3. Low fat foods and drinks to prevent weight gain;
4. Taking in fewer calories to balance your lower energy use.

*Fiber sources include whole grain products, fruits and vegetables. Try making half of your grain food choices whole grain. The
recommendation for daily fruit and vegetable intake is at least 5 choices per day. For more fiber, choose the actual fruit or vegetable rather than dried fruit or juice.

 
**Protein sources include meats, poultry, eggs, fish, tofu, and beans. Choose a variety of protein foods that are lean or low fat. Beans are a great substitute for meat and will provide fiber as well. A high percentage of American's are becoming increasingly overweight or obese. This is often due to high calorie foods containing fat and sugar in combination with little or no exercise. The good news is that by following recommended dietary guidelines and eating nutritionally-balanced meals, you can prevent or lessen the chances for medical complications. This important choice is yours.

Copyright © 2012 RRTC on Spinal Cord Injury - All Rights Reserved
Funded by the National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Department of Education. Grant #H133B090002. The opinions expressed on these pages are those of the authors, and no official endorsement by the Department of Education or any other funding source should be inferred.

Dietary Guidelines

In 2010, the USDA published the Dietary Guidelines for Americans. The guidelines recommend making changes in three areas – balancing calories, increasing intake of some foods, and reducing intake of others. You should choose the steps that work for you and then begin today by:

Balancing Calories
- Enjoy your food, but eat less. Eating too fast or when your attention is elsewhere (such as eating while reading or watching television) may lead to eating too many calories. Pay attention to hunger and fullness cues before, during, and after meals.

- Avoid oversized portions. Use a smaller plate, bowl, and glass.

Portion out foods before you eat. When eating out, choose a smaller size option, share a dish, or take home part of your meal.
Increasing Intake of Healthy Foods

- Make half your plate fruits and vegetables. Eat red, orange, and dark-green vegetables, such as tomatoes, sweet potatoes, and broccoli, in main and side dishes. Buy fresh fruits and vegetables in season or frozen without added sauces, sugars, or syrups.

- Eat fruit, vegetables, or unsalted nuts as snacks—they are nature's original fast foods.

- Make at least half your grains whole grains. Choose 100% whole-grain cereals, breads, crackers, rice, and pasta. Look for "whole grain" on the package or ingredients list. Wheat and 100% wheat are not the same as whole grain. Whole grain flours are ground with the bran and
germ. The flavor is somewhat stronger than white or wheat flour and may have a rougher texture.

- Switch to fat-free (skim) or low-fat (1%) milk. They have the same amounts of calcium, vitamin D, and other essential nutrients as whole milk, but less fat, cholesterol, and calories. Low fat soy or other cow milk alternatives are also good choices as long as they contain at least 30% DV calcium and 25% vitamin D per one cup serving.

Reducing Intake of Other Foods

- Compare sodium in foods like soup, bread, and frozen meals—and choose the foods with lower numbers. Sodium, a component of salt, can raise blood pressure; so, it is best to keep your overall daily sodium intake between 1500-2300mg. Add spices or herbs to season food without adding salt.

- Drink water or unsweetened beverages instead of sugary drinks. There are about 10 packets of sugar in a 12-ounce can of regular soda.

- Make major sources of saturated fats—such as cakes, cookies, ice cream, pizza, cheese, sausages, and hot dogs—occasional choices, not everyday foods.

- Switch from solid fats to oils such as olive oil or canola oil when preparing food. Using cooking spray is a low-fat, calorie-free option.

The Dietary Guidelines for Americans, 2010, are some of the best science-based advice on how to eat for health. The Guidelines encourage all Americans to eat a healthy diet and be physically active.

The 10 Tips Education Series Available online at the www.choosemyplate.gov website are some excellent factsheets in the 10 Tips Education Series. Dietary Guidelines (DG) TipSheet No. 8 provides tips on how to liven up your meals with vegetables and fruits.

 

There are many benefits from adding vegetables and fruits to your meals. They are low in fat and calories, while providing fiber and other key nutrients. Most Americans should eat more than 3 cups—and for some, up to 6 cups—of vegetables and fruits each day. Vegetables and fruits don't just add nutrition to meals. They can also add color, flavor, and texture. Explore these creative ways to bring healthy foods to your table.

 

#1 Fire up the grill
Use the grill to cook vegetables and fruits. Try grilling mushrooms, carrots, peppers, or potatoes on a kabob skewer. Brush with oil to keep them from drying out. Grilled fruits like peaches, pineapple, or mangos add great flavor to a cookout.

#2 Expand the flavor of your casseroles
Mix vegetables such as sautéed onions, peas, pinto beans, or tomatoes into your favorite dish for that extra flavor.

#3 Planning something Italian?
Add extra vegetables to your pasta dish. Slip some peppers, spinach, red beans, onions, or cherry tomatoes into your traditional tomato sauce. Vegetables provide texture and low-calorie bulk that satisfies.

#4 Get creative with your salad
Toss in shredded carrots, strawberries, spinach, watercress, orange segments, or sweet peas for a flavorful, fun salad.

 

#5 Salad bars aren't just for salads
Try eating sliced fruit from the salad bar as your dessert when dining out. This will help you avoid any baked desserts that are high in calories.

#6 Get in on the stir-frying fun
Try something new! Stir-fry your veggies—like broccoli, carrots, sugar snap peas, mushrooms, or green beans—for a quick-and-easy addition to any meal.

#7 Add them to your sandwiches
Whether it is a sandwich or wrap, vegetables make great additions to both. Try sliced tomatoes, romaine lettuce, or avocado on your everyday sandwich or wrap for extra flavor.

#8 Be creative with your baked goods
Add apples, bananas, blueberries, or pears to your favorite muffin recipe for a treat.

#9 Make a tasty fruit smoothie
For dessert, blend strawberries, blueberries, or raspberries with frozen bananas and 100% fruit juice for a delicious frozen fruit smoothie.

#10 Liven up an omelet
Boost the color and flavor of your morning omelet with vegetables. Simply chop, saute, and add them to the egg as it cooks. Try combining different vegetables, such as mushrooms, spinach, onions, or bell peppers.

Improving what you eat and being active will help to reduce your risk of chronic diseases such as diabetes, heart disease, some cancers, and obesity. For people with spinal cord injury, eating healthy will help prevent pressure ulcers and preserve lean body mass. For more information on spinal cord injury or good nutrition in general, visit the following websites or request a call back from a registered dietitian at the MedStar National Rehabilitation Hospital by calling 877-278-0644 and leaving a message with your name, telephone number and best time to reach you.

Useful websites
www.sci-health.org
www.DietaryGuidelines.gov
www.ChooseMyPlate.gov
www.HealthFinder.gov

Excerpted from SCI & Nutrition Facts, published by the RRTC in Community Integration for Individuals with Spinal Cord Injury at Baylor College of Medicine and TIRR (The Institute for Rehabilitation and Research), Houston, TX, 2002; Let's eat for the health of it, USDA Publication number: Home and Garden Bulletin No. 232-CP, June 2011 and USDA Center for Nutrition and Policy Promotion 10 Tips Nutrition Education Series DG TipSheets No. 8, June 2011, http://www.choosemyplate.gov/healthy-eating-tips/ten-tips.html.

5.3. Nutrition (articles, webinars & fact sheets)

Addressing Secondary Health Complications of Spinal Cord Injury Through Nutrition - United Spinal Association Webinar (Originally Presented 2/2/17)
This webinar provides useful nutritional information for people with SCI/D.
View Webinar Video | View Webinar PPT

Everyday Nutrition for Individuals with SCI - a SCI forum presentation that took place on April 12, 2011 at the University of Washington Medical Center.  This presentation discusses the unique nutritional needs of individuals with spinal cord injuries and provides tips for incorporating your nutritional goals into your daily eating habits. Topics include calorie guidelines, protein requirements and other nutrients needed for maintaining healthy skin, heart, weight and bones and for promoting bowel and bladder health.  This is also available in video format; see 'related pages' below.

6.1. Avery Breathing Pacemakers

Avery Breathing Pacemakers work by stimulating the diaphragm via pulses sent through the phrenic nerve.  They free users from the dangers and constraints associated with mechanical ventilation, all while meeting the highest standards of safety and reliability.  Furthermore, the Avery pacer is the only system of its kind with full premarket approval by the US FDA for adult and pediatric use.

For more information please see attached PDF.

• Patient Profile (Adult)

• Patient Profile (Pediatric)

 

6.2. NeuRx diaphram pacing (DPS)

NeuRx Diaphragm Pacing System (click here for product information; includes listing of established US centers offering DPS)
Unlike a mechanical ventilator, the NeuRx DPS^TM provides a gentle, rhythmic, electrical stimulation to your diaphragm causing it to contract. A simple, minimally invasive outpatient procedure is used to implant the device's four electrodes. NeuRx DPS^TM has enabled SCI patients to regain their sense of smell and taste, easily eat and speak and expand their mobility and transportation options. (Contact resource center staff for more information on how this differs from prior technologies).

Patient testimonials in print and video

Patient brochure is attached.

6.3. International Vent Users Network

International Vent Users Network
Links ventilator users with each other and with health care professionals interested in mechanical ventilation and home care. Provides several valuable resources including:

• Home Mechanical Ventilation — The Basics 
  Provides an introduction to mechanical/assisted ventilation answering: What is it? Who uses it? What types of ventilators? What types of interfaces? and more. 

• Home Ventilator Guide:
  This comprehensive INVU resource displays technical information about the world's home ventilators in charts that are easy to read and makes comparing home ventilators more convenient. It features bi-level positive airway pressure ventilators, volume-cycled ventilators, pressure support ventilators, and combination or multi-mode ventilators.

• Resource Directory for Ventilator-Assisted Living
  INVU directory for linking to experts in mechanical ventilation by state and internationally.

• Ventilator Assisted Living  is bi-monthly newsletter.  It links ventilator users, their families and peers with each other and with health professionals committed to home mechanical ventilation. Articles include such topics as family adjustments, equipment and techniques, medical issues, travel and ethical issues.

---

6.4. Internet resources

Vent World
Created by Amethyst Research LLC information about products, news, events, and training, from suppliers, professional societies, news organizations, and community members.

Vent Users' Support Page
INVU support page has many links for vent-related companies, related topics, articles, online support, etc. can also join vent users' mailing list and subscribe to New Horizons (newsletter for vent users).

Jeff Galli's Website
Jeff Galli's personal website has photos, descriptions and links for nearly every gadget he has used as a C1-C2 quad, including ventilator, phrenic nerve pacemaker, computer and environmental control unit.

6.5. Vent weaning

Craig Hospital Ventilator-Dependent and Weaning Programs
Craig Hospital has one of the most comprehensive programs in the country for individuals who are ventilator-dependent and their families. The program is for individuals on ventilators who plan to return home after rehabilitation. The goals of the program include medical stabilization, weaning from the ventilator when possible, and training the patient and family in home-care techniques and health management. For more information about Craig's ventilator program, please contact Lonnie Martinez at 303-789-8479 or at lmartinez@craighospital.org .

7.1. Planning For A Hospital Stay

A hospital stay for people with a spinal cord injury or disease, can in itself present certain challenges and risks that can be minimized by planning ahead.

Most persons with a SCI/D have had one or more hospitalizations, either for emergencies like severe urinary tract infections, or planned surgeries to deal with SCI-related issues like pain or orthopedic issues. A hospital stay with SCI requires constantly being on guard to avoid additional complications like pressure sores, bladder and bowel problems, and non-accessible rooms. 

The old saying, "A hospital is no place to be sick," is doubly true with complexities that accompany neurological issues like SCI, spina bifida, multiple sclerosis and cerebral palsy.

According to Cat Davis, certified rehab registered nurse of the Craig Hospital SCI Nurse Advice Hotline, any long-term health issue puts a person at a higher risk of hospitalization. "Awareness of this fact and paying close attention to your health on a daily basis to try and avoid hospitalization is the best defense," she says.

Since emergency hospitalization can strike at any time, planning ahead is the most important thing you can do to avoid secondary complications.

You can find out how to develop a plan of your own in this detailed guide at:
http://www.newmobility.com/2013/03/paramedic-hospital-stay-survival-guide/

8.1. Overview and General Resources

Disclaimer:

Content in this section is intended for adult (age 18+) educational purposes. United Spinal Association bears no responsibility for the accuracy, legality, or content of the external site or for that of subsequent links. Contact the external site for answers to questions regarding its content. Information about a therapy, service, product, or treatment does not imply endorsement and is not intended to replace advice or directives from your healthcare provider. There is always a risk with any type of sexual activity, speak with your healthcare provider about options to maximize your safety.

General Overview

While individual function, activities, and interest levels may differ, sexual health, expression, and intimacy remain an essential part of people’s lives after SCI/D (Spinal Cord Injury/Disease). Humans are sexual beings, and disability can often alter how we see ourselves as individuals and our roles within our families and communities. Each individual’s sexual function is dependent on their level and completeness of injury as well as other personal and medical factors. However, while some aspects of physical sexual function may change, there are many ways people with SCI/D can express themselves sexually.  The resources throughout this Knowledge Book will help you learn more.  

The risk of pregnancy for women with SCI, and the risk of sexually transmitted infections (diseases) for all remains the same as before an SCI/D. Discuss options for safe sex with your clinicians. If you are not planning to become pregnant, speak with your healthcare provider about potential birth control methods.  There are a number of medical considerations to take into account before any sexual activity. These issues are discussed in more depth in section 8.3 Medical Considerations within this chapter.

Below you will find a number of resources related to sexuality and spinal cord injury.

Model Systems Knowledge Translation Center Factsheet: Sexuality & Sexual Function After SCI
The MSKTC provides health information based on research evidence and/or professional consensus and has been reviewed and approved by an editorial team of experts from the different Model Systems. This factsheet covers sexuality, how SCI impacts sexuality and dating; and general understandings of sexual arousal, orgasm, and fertility. (2015)

Mount Sinai Hospital: Sexuality after Spinal Cord Injury (2017)
This video archive and website is a resource for people living with spinal cord injury, their partners, and the healthcare professionals who treat them. The videos were collected during a one day medical professionals' conference and a two day consumer conference at Mount Sinai Hospital in New York (a Spinal Cord Injury Model System Center). Topics include information related to sexuality after SCI including: sex, love, and intimacy; dating and relationships; well-being and self-esteem; communication; adaptive devices and sex toys; orgasm, erections, and fertility; medical conditions and their impact on sexual activity; managing bowel and bladder routines; talking to your doctor about sexual activities; sexual positioning; facilitated sex and conversations with care attendants.

Spinal Cord Medicine: Sexuality and Reproductive Health in Adults with Spinal Cord Injury 
Consortium for Spinal Cord Medicine and Paralyzed Veterans of America (PVA) publication on sexuality and reproductive health for adults with SCI covering the range of topics including: sexual and reproductive health; sexual education; sexual response and enjoyment; female reproductive health and fertility; male fertility; physical and psychological considerations during sexual activity; lifestyle and relationship issues; and resources. (2011)

SCIRE Community: Sexual Health After SCI
An overview of sexual function after SCI and options for management from the Spinal Cord Injury Research Evidence (SCIRE) Community (2018). SCIRE Community was developed by a team in the Rehabilitation Research Program at GF Strong Rehab Centre in Vancouver, BC with the SCIRE Community Working Group which consists of 19 community members. 

Sexual Sustainability: A guide to having a great sex life with a spinal cord disorder [Kindle ebook], Author- Dr. Marcalee Alexander
If you or a loved one have a spinal cord disorder or injury, this book is for you. Here, in a concise format, you can learn how to maximize your sexual responses and capacity for orgasm. In a straight-forward, simplified format, this book will give you the help to understand what issues can positively or negatively impact your ability to experience sexual pleasure. This book is an important read for anyone who has a spinal cord disorder or loves someone with a spinal cord disorder. (2017 Also available in Spanish)

United Spinal Association: Webinar: Sexual Sustainability After SCI  
Dr. Marcalee Alexander is known internationally in the field of Sexuality and Spinal Cord Injury. In this presentation, she provides a simple recipe for you to consider your own sexuality after SCI, what your potential is, how our unique backgrounds affect us and how our medical care may be impacting our ability for sexual satisfaction. She discusses issues of aging and its impact on all of our sexual lives. (2018)

New Mobility Magazine Articles

In addition to the article below, New Mobility often publishes articles related to dating, relationships, intimacy and sex. Consider searching their archives for other related articles. 

• Self-Image and Intimacy: Beating the Body Rut (2020/02)
• Conversations About Sex (2017/02)
• The Process of Sexual Self-Discovery (2015/02)
• Sex. Do You Still Enjoy It? (2013/03)
• What Great Sex Really Is: A Journey from Teenage Paralysis (2013/02)

Female Function

For women with SCI/D decreased lubrication and difficulty reaching physical orgasm are the most common physiological changes. Lubrication with arousal can be impacted by the level and completeness of injury. Using a water-based, non-petroleum lubricant like K-Y Jelly can help. While some may still be able to experience orgasm, it may take more stimulation and may feel different than prior to injury. The ability to get pregnant does not change after injury unless there has been severe pelvic trauma. These issues are discussed in the following resources. 

Craig Hospital: Sexual Function for Women after Spinal Cord Injury (2020)

Women's Issues Resource Book

Related New Mobility Magazine Articles

• Women's Pleasure (2017/02)
• Sex, Women & SCI (2015/02)

Male Function

Male sexual function after SCI/D can be impacted in a number of ways. Men may have difficulty achieving or maintaining an erection (erectile dysfunction) or with ejaculation and orgasm. Depending on the level and completeness of injury, natural erections may still occur via either psychogenic (sexual thoughts or seeing/hearing something stimulating or arousing) or reflexogenic pathways (sexual or intimate sensation/touch). A reflex erection is involuntary and can occur without sexually stimulating thoughts. Reflex erections occur from direct stimulation (touching) of the penis and genitals.

There are various erectile dysfunction treatment options including devices (such as penile pumps discussed in Section 8.5 "Sexual Aids"), and medications. Medications used in the treatment of erectile dysfunction in men with SCI include oral medications known as PDE5is which help improve the quality of an erection (such as Viagra, Cialis, Levitra and others). These medications can not be used with nitroglycerin products, which are sometimes administered in the treatment of autonomic dysreflexia. Other medications used to treat erectile dysfunction after SCI include penile injectable medications (intracavernous drug injection), as well as urethral suppositories. The following resource and other resources on this page discuss several options for achieving and maintaining an erection, including some pros and cons of each.  Your physician can help you determine the option that is best for you taking your individual health circumstances and level of injury into account. 

Orgasm may function the same as prior to injury or be different, occurring with or without ejaculation. The impact of injury on ejaculation differs depending on level and completeness of injury. Retrograde ejaculation may occur, when the bladder sphincter does not close off at the base during ejaculation and semen enters the bladder. Retrograde ejaculation does not cause harm to you and the semen comes out with your urine. 

Craig Hospital: Sexual Function for Men After Spinal Cord Injury-injury (2020)

Fertility and Reproduction

See Fertility and Pregnancy Resource Page

The impact of SCI/D on fertility and reproduction can affect both men and women. Fertility for men is often impacted, due to changes in semen quality, ejaculation, and erectile function. These factors can make reproduction via sexual intercourse difficult for some. Some men with SCI may be able to get their partners pregnant, but many can not. You will still need to use birth control if you do not want to have children. Some couples choose to invest in fertility treatments to achieve conception. Speak with your healthcare provider about options to become pregnant.

Women’s ability to become pregnant does not change after SCI/D, but can be impacted if there is physical trauma affecting the pelvic area. If you do not want to become pregnant, discuss contraception options with your health care provider.   

Communication

Despite being a large part of the human experience, sex and sexuality can be considered culturally and socially taboo (restricted or prohibited). By including it into our narrative and speaking openly about it, we can help remove the stigma surrounding this topic.

With a partner

Discussing sensitive topics like sex with a partner can often leave you feeling vulnerable and open to criticism. Using clear, open communication with a partner can make discussions about sensitive topics more comfortable to navigate. Taking time to understand and discuss how your body functions, what you find pleasurable, and giving and receiving feedback is a great way to learn and strengthen a relationship. Conversations around sexual activity can begin by discussing consent, contraception, values and beliefs, frequency, etc.

Tips:

• Be patient with yourself and others
• Keep an open mind
• Give honest feedback during sexual activity🡪 what feels good and what does not
• Be mindful of your tone of voice and word choice
• Make suggestions rather than complaints.

With your healthcare provider (HCP)

Bringing up the topic of sexual activity with someone who is not your partner can bring feelings of insecurity and embarrassment. HCPs specializing in SCI/D are often aware of the many health areas impacted by this condition. Taking a sexual history is an integral and important part of a regular medical exam or physical history. If, after prompting, your HCP is deliberately not addressing this area of health, referral to another HCP may be in your best interest. Rehabilitation professionals such as physiatrists (doctor of physical medicine and rehabilitation), occupational therapists, rehabilitation nurses, and rehab psychologists are often good sources of information related to sexuality for people with disabilities.

Tips:

• Be direct and honest
• Be prepared to answer questions about symptoms
• Ask follow-up questions if you do not understand
• If they do not have the answer to something, they can often refer you to someone who may 

*References found on page 8.6 Resources and References within this chapter.

 

 

8.2. Relationships & Dating

Disclaimer:

Content in this section is intended for adult (age 18+) educational purposes. United Spinal Association bears no responsibility for the accuracy, legality, or content of the external site or for that of subsequent links. Contact the external site for answers to questions regarding its content. Information about a therapy, service, product, or treatment does not imply endorsement and is not intended to replace advice or directives from your healthcare provider. There is always a risk with any type of sexual activity, speak with your healthcare provider about options to maximize your safety.

Relationships

Navigating relationships can be complicated, regardless of spinal cord injury/spinal cord disorder (SCI/D). Intimacy and relationships are important aspects of our wellbeing. After SCI/D, you may find that you have questions about your current or future relationships. Changes in your roles and routines can lead to some frustration and stress for couples as they begin to adjust to SCI. It’s important to remember that adjustment is a journey, and each person adjusts to SCI/D in their own way and timeframe. Life-long learning and open and honest communication are keys to developing and maintaining healthy relationships. Making time for your partner is important, as is allowing space and time for your partner. 

If possible, explore options for personal care and caregivers from someone other than your romantic partner. Utilizing outside help enables the separation between caregiving and intimacy.

The following resources discuss some considerations while navigating relationships following SCI.

Relationships Resources

Family and Personal Relationships, United Spinal Association Knowledge Book (a compilation of related resources)

Sexuality & Sexual Functioning After SCI | Model Systems Knowledge Translation Center (MSKTC)

SciSexualHealth.ca: Relationships Resources

• Developed by Spinal Cord Injury BC (SCI BC), a non-profit organization dedicated to helping people with spinal cord injuries and related disabilities, adjust, adapt, and thrive. Content includes resources of articles, websites, books, and videos addressing common questions and concerns related to changes in relationships after spinal cord injury. This can include role changes, managing conflict, communication, and coping with life-changing events. (2019)

FacingDisability.com offers a collection of personal experience videos from individuals impacted by SCI/D available to the public regarding a variety of topics. 

• Facingdisability.com: Marriage and Children
• Facingdisability.com: Helpful Sex Advice 

New Mobility Articles

• How to Keep the Flame Burning (2020/02)
• Inter-Abled Couples: Challenges and Joys (2015/10)
• Sex, Wheels & Relationships (2013/02)
• Sex, Wheels & Relationships (2012/02) 
• Committed Couples (2001/02)

Dating

Dating in the 21st Century can be a complicated endeavor, encompassing a combination of being comfortable marketing yourself and being somewhat tech-savvy. Many intimate relationships these days are formed online through dating apps, allowing the user to meet people virtually in a safe, low-stakes setting. You can disclose as much or as little as you want to about yourself, which can benefit the user meeting their privacy/comfort needs and putting them in control of how they want the world to view them and ultimately how they see themselves. Online dating opens up a world of possibilities for wheelchair users as you do not need to be in a particular physical space to meet potential partners. Also, you will have more opportunities to meet people when you participate in social activities.  

When thinking about dating, you want to consider:

• What do you want when it comes to dating or relationships?
• The type of dating strategies you have tried (e.g., going to bars, online dating, matchmaking, speed dating, blind dates, set up by friends). What did or didn’t you like about each type of strategy?
• Talking with friends and family about methods they tried when dating.
• You increase your opportunities to meet people by making yourself available, such as by participating in social activities or online dating. Do you participate in any social activities? Are you a member of any group or organization?

Dating Safety Tips

• When meeting someone for the first time, choose a public space that is known to you in order to ensure safety. Communicate with your friends and family to let them know where you are going and with whom. Keep your cell phone charged, on, and accessible during the date.
• Do not overshare personal information. For example, instead of stating the specific location of your work, talk about your work in a general field. This information can be saved for later in the relationship timeline.
• Trust your intuition. If something doesn't feel right or makes you uncomfortable, you do not have to stick around. Being honest with yourself and others is crucial to building healthy relationships.

Dating Resources

Utilizing apps to find an accessible restaurant or meeting place for your date has recently gotten easier.

• Within the Google Maps app, under ‘Settings’ and ‘Accessibility settings’ the user can show if places have accessible features (entrances, seating, restrooms, and parking):  Google Maps Wheelchair Accessible Places (2020)
  
  
• iAccess provides a ranking of world-accessibility apps, which can help you find wheelchair-accessible locations/services.
  • iAccess Best Apps for Wheelchair Users & Caregivers
  • iAccess How to Find Wheelchair Accessible Restaurants Near You

Facingdisability.com: Sex & Dating. Video segments offered by people living with SCI, discussing their personal experiences with dating and sex after SCI.

New Mobility Articles

• New Mobility Guide to Online Dating (2019/02)
• Tips for Mentioning Disability on Dating Apps (2017/05)
• What Should You Really Put In That Dating Profile? (2013/11) 

Scheduled Intimacy

Preparation prior to sexual intimacy can help you feel more comfortable and confident. Planning out your intimate moments may take some adjustments mentally and physically. Mainstream media has portrayed and simplified intimacy and sexual relations as a somewhat spur of the moment, tearing clothes off, kind of scenario. In the real world, it is not that straightforward, and there are some variables to take into consideration. After an SCI/D, sexual relations and intimacy may require a little more finesse. While the spontaneity may have changed, the overall experience can be just as pleasurable!

Preparing for intimacy can be integrated into your routine. Whether it includes adding protective layers or sheets on the bed, putting on music to set the mood, setting up toys, pillows and positioning aids, or taking care of hygiene (bowel and bladder routines), all preparation before sexual activity can lead to increased confidence. For more discussion on bowel and bladder considerations and sexuality please see section 8.3 Medical Considerations within this chapter.

*References found on page 8.6 Resources and References within this chapter.

 

8.3. Medical Considerations

Disclaimer:

Content in this section is intended for adult (age 18+) educational purposes. United Spinal Association bears no responsibility for the accuracy, legality, or content of the external site or for that of subsequent links. Contact the external site for answers to questions regarding its content. Information about a therapy, service, product, or treatment does not imply endorsement and is not intended to replace advice or directives from your healthcare provider. The information is provided for your general information and is not intended as medical advice. There is always a risk with any type of sexual activity, speak with your healthcare provider about options that are best for you, taking your individual circumstances into account.

Medical Considerations and Related Resources

Intimacy and sexual expression are fundamental aspects of life for people and are associated with improved quality of life for both men and women with spinal cord injury. Some considerations for your health are discussed below.  

Sexually Transmitted Infections and Safe Sex

When participating in sexual activity with a partner, an important thing to keep in mind is the factor of sexually transmitted infections (STIs - also known as Sexually Transmitted Diseases). After an injury, the ability to contract STIs does not change, and protection is needed when engaging in sexual activity. Using condoms can reduce the risk of contracting or transmitting STIs.

Additionally, it’s important for women with SCI/D to discuss contraception options with their physician.  Each method has its own specific risks, and your physician can help you choose the option that is most appropriate for you, taking your individual health circumstances into account.

SciSexualHealth.ca: Contraception

• Developed by Spinal Cord Injury BC (SCI BC), a non-profit organization dedicated to helping people with spinal cord injuries and related disabilities, adjust, adapt, and thrive. Content on how you can practice safe sex, protect against sexually transmitted infection/diseases, and avoid unplanned pregnancy. (2019)

Mental Health and Sexuality

After an SCI, taking care of your mental health is part of the recovery process. Learning to adjust to your “new normal” comes with emotional ups and downs. There may be symptoms of depression and anxiety that impact your relationships and your ability to be intimate and many people find that when they become less depressed, interest in sexual activity increases. Consult your health care provider for treatment and resources to improve your mental health. 

Model Systems Knowledge Translation Center: Factsheet: Depression

The MSKTC provides health information based on research evidence and/or professional consensus and has been reviewed and approved by an editorial team of experts from the different Model Systems. This factsheet covers information regarding the mental health of individuals impacted by SCI/D including causes, symptoms, and treatment of depression. (2010)

Autonomic Dysreflexia (AD)

Autonomic Dysreflexia (AD) is characterized by the sudden onset of elevated blood pressure (BP) with systolic blood pressure increasing >20 mmHg above your normal baseline measurement. AD may occur in individuals with a spinal cord injury/disorder at spinal cord neurological level T6 and higher. AD can result in dangerously high blood pressure so it’s important to understand the causes, signs, and symptoms to be able to recognize and treat it.  AD may be caused by any stimulation below the level of the injury, including sexual activity. The risk of AD increases for susceptible people with SCI who engage in more intense sexual stimulation, including the use of vibrators. Susceptible individuals may be encouraged to periodically monitor their BP during sexual activities. Taking your blood pressure before and during sexual activity can improve awareness of your overall health and well-being. Some individuals experience silent AD, meaning their blood pressure is elevated but they do not experience other obvious symptoms that alert them to the condition.  

Signs and symptoms include:

• Elevated systolic and diastolic blood pressure (systolic blood pressure > 20 mmHg above baseline)
• Sudden-onset headache
• Sweating (often profuse)
• Flushing
• Goosebumps
• Blurred vision
• Nasal congestion
• Anxiety or feelings of doom
• Nausea and vomiting
• Low or high heart rate
• For some individuals, the only symptom may be elevated blood pressure

Numerous studies have found that with sexual activity, orgasm, or ejaculation, blood pressure naturally increases. Blood pressure is known to increase more during sexual activity for individuals with SCI at T6 and above than it does in able-bodied individuals. When experiencing symptoms of AD during sexual activity, stop sexual activity immediately, sit up straight and lower your legs. Remove any restrictive clothing and unkink catheter tubing if applicable. Monitor BP every 2-5 minutes. BP should decrease, returning close to baseline within 5 minutes of stopping sexual activity. If AD can not be resolved contact emergency services. See the Autonomic Dysreflexia resources below for further information on AD management and discuss management of this potential complication with your physician.    

If you have been experiencing AD during sexual activity, it is important to discuss this with your physician. In some cases, your physician may prescribe medication for use prior to sexual activity to alleviate the problem. It’s important to note that some medications that are used to treat AD, such as Nitropaste, are contraindicated with medications commonly used for erectile dysfunction.  It’s very important to discuss these issues with your physician to determine the safest choices for you.  

Related Autonomic Dysreflexia resources; United Spinal Association Knowledge Book (a compilation of related resources) 

Clinical Practice Guideline – Evaluation and Management of Autonomic Dysreflexia and Other Autonomic Dysfunctions: Preventing the Highs and Lows.  Published by the Paralyzed Veterans of America (PVA) on behalf of the Consortium for Spinal Cord Medicine (2020)

Skin

Hygiene

Before and after sexual activity, it is important to thoroughly check the skin for any rubbing, redness, tears, etc. Making sure the skin is clean and dry decreases the risk of irritation and injury. If you are unable to self-inspect, direct a partner or care attendant in the overall skin integrity inspection. Using bamboo or silk bed sheets can minimize friction caused by movement.

Sensation

After SCI/D, sensation may have changed. By exploring your body, you can find what feels pleasurable. Despite decreased or absent sensation, many find that they still have erogenous areas that respond to intimate stimulation. Some individuals report heightened arousal with stimulation at their “transition zone”, the area of skin just below the last region of skin with preinjury levels of sensation which may have some altered sensation. Sexual activity in the shower/tub can facilitate an improved sensual experience as water tends to feel good on the skin. Things to be mindful of while in the shower/tub are the weight restrictions if using shower chairs, wet surfaces being slick, and can be hazardous, causing further injury. A shower/tub space can be limited, and positioning may be difficult. Remember to have patience with yourself and your partner while exploring, but most importantly, stay safe and have fun!

Erogenous stimulation and exploration

• Erogenous areas are parts of the body that elicit sexual response and arousal. These areas often include the neck, ears, the insides of the thigh, scalp, etc.
• Masturbation is a great way to find out what feels best for you while providing a safe, low-stakes environment for exploration.
• Sensation play and tantric touch are ways to explore without penetration and can be enjoyable for both yourself and partners. Tantric touch involves light, sensual, and loving touch meant to elicit arousal

Continence

Incontinence (involuntary leakage) is common for individuals with SCI/D during sexual activity. Certain positioning and sexual activities can increase pressure on the bladder and bowel, leading to potential incontinence. 

Bladder Management

Before sexual activity, preparation can include performing bladder routine, such as emptying bladder prior to sexual activity to minimize incontinence.

Other considerations:

• Cleaning around catheters and genital regions.
• Emptying collection bag(s) before and after sexual activity.
• Using waterproof/resistant sheets or throws can be helpful for any leakage. Doubling the layers of waterproof pieces can help provide a clean and dry backup, spending less time changing sheets, and you can get back to business without spoiling the mood.
  • Brollysheetsusa.com: Waterproof Sheets
  • Nomorewetspot.com: Waterproof Blankets
  • Liberator.com: Decor

Catheter considerations

• For some, the timing for removal of indwelling catheters can be concurrent with sexual activity. In this case, the catheter is removed before sexual activity and replaced with a new catheter after. 
• If you are having indwelling catheter difficulties during sexual activity that are significantly impacting you, consider discussing other bladder management options, such as a suprapubic catheter, with your healthcare provider.
• Some men choose to fold their indwelling catheters back alongside the shaft of the penis and wear a condom over the penis and tubing during sexual activity.
• Some women report pain due to tugging during movement and taping catheters to the abdomen or thigh can help keep tubing out of the way and in place.

Bowel Management

Before sexual activity, bowel maintenance and preparation can include:

• Performing routine bowel management programs to promote regularity.
• Some people prefer to empty their bowels before sexual activity; however, digital stimulation or medication use may lead to residual bowel emptying.

• Refraining from eating up to 30 minutes before sexual activity. Eating partnered with physical activity within this time frame initiates the digestive process, which may lead to accidents.

Anal Sensation

The sensation of the perineum and anus is sometimes preserved after SCI/D. Exploring sensations as part of sexual activity can help you understand and enjoy different areas of your body. Some considerations to take before sexual exploration or activity are:

• Incontinence
  • Touching or penetrating the anal sphincter during sexual activity without emptying bowels may stimulate a bowel movement.
• Hemorrhoids and Inflammation
  • Touching or penetration of the rectum can exacerbate any hemorrhoids or inflammation.
• Rectal surgery
  • If you have undergone rectal surgery, anal exploration and play may be a health risk. Discussing this with your healthcare provider is the first step to understanding the possibilities of your body.

Ostomies

New Mobility.com: Relationship Baggage: Dating with a Colostomy (2018/02)

Ostomy Hygiene

• Managing the surrounding skin surface and ostomy bag can improve self-esteem, confidence, and quality of sexual encounters. See above section, Skin: Hygiene

• • • Hollister.com: Sex After Ostomy Surgery: Do’s and Don’ts: Hollister Incorporated develops, manufactures, and markets healthcare products and services worldwide. They offer advanced medical products for Ostomy Care as well as providing innovative healthcare programs, services, and educational materials for patients and healthcare professionals. (2018)
    • Convatec.ca: Intimacy with an Ostomy: ConvaTec is a global medical products and technologies company, with leading market positions in wound therapeutics, ostomy care, continence and critical care, and infusion devices. (2020)

• Odor management: There are several options for dealing with ostomy bag odor management. Deodorizing sprays and drops can be used to address any unpleasant smells coming from your ostomy bag.

• Coverings: Mini-pouch or pouch coverings can improve confidence during sexual activity.

Spasticity and Pain

Spasticity or spasms during sexual activity are common among people with SCI/D. For some, spasticity can facilitate movement during sexual activity, while for others spasticity can interfere with positioning. Some medications used for managing spasticity may impact libido (sexual drive). If you are experiencing negative side-effects, speak to your healthcare provider. Stretching before sexual activity can be incorporated into foreplay and can minimize spasms and contractures. Pillows or wedges can improve positioning and increase comfort (see See 8.4 Functional Mobility and Positioning section). Planning for taking pain medication can ease some of the complications which may arise during sexual activity. Keep in mind what might be sex-related pain versus typical pain.

Limb Protection

Individuals with SCI/D have an increased risk of bone fractures as their bone density decreases over time. Positioning for sexual activity should include positioning aids (pillows and cushioning) to protect limbs from pressure and extreme joint angles. When contractures or other conditions that limit range of motion are present, limbs should be supported with pillows or bolsters and forceful pressure should not be used.

Respiratory Health

Taking care to remain comfortable and aware during sexual activity requires appropriate communication with a skilled partner, proper positioning that does not block or impede respiration. Consult your health care provider if you require any assistance with your respiratory needs.

*Consortium for Spinal Cord Medicine (2020). Evaluation and Management of Autonomic Dysreflexia and Other Autonomic Dysfunctions: Preventing the Highs and Lows. Paralyzed Veterans of America. https://pva.org/research-resources/publications/clinical-practice-guidelines/

 

8.4. Functional Abilities and Positioning

Disclaimer:

Content in this section is intended for adult (age 18+) educational purposes. United Spinal Association bears no responsibility for the accuracy, legality, or content of the external site or for that of subsequent links. Contact the external site for answers to questions regarding its content. Information about a therapy, service, product, or treatment does not imply endorsement and is not intended to replace advice or directives from your healthcare provider. There is always a risk with any type of sexual activity, speak with your healthcare provider about options to maximize your safety.

Functional Mobility

Functional mobility describes the ability level of specific actions or movements. Within the realm of therapy, this can include movement from one place to another, movement of objects, and ambulation. Functional mobility is impacted by the level of  spinal cord injury and can be modified or adapted during sexual activity to compensate for a limited range of motion. Occupational and physical therapy can provide individualized education on positioning and mobility for sexual activity. Refer to your health care provider for more information.

Positioning

Proper positioning during sexual activity can improve access, stability, comfort, and relieve pressure for those with limited strength and mobility. Creatively exploring sexual positioning with your partner can help you find what works best for you and your partner. The use of positioning aids and adaptive devices can help limit spasticity, discomfort, or fatigue for those with SCI/D. 

Persons with tetraplegia may require a care attendant to assist before sexual activity. Preparation may include transfers, dressing/undressing, positioning, sexual aid preparation (toy maintenance, placement), hygiene, etc. Before engaging an assistant in preparation activities, there must be honest and open communication with your caregiver regarding comfort levels, limitations, skills, and training. 

The following resources discuss specific positions and positioning aids.

• Sex and Paralysis Video Series
  Dr. Mitchell Tepper, a sexuality educator, counselor, and wheelchair user, has created a video series devoted to sexual activity positioning for SCI/D.

• Spinal Cord Injury BC is a team of sexual health clinicians and specialists in Vancouver, BC providing specialist sexual health services, education, and research in British Columbia, Canada. They provide numerous resources regarding sexual health including

— PleasureABLE is a sexual device manual for persons with disabilities, covering topics of sexual health, positioning, and devices.

— SCISexualHealth.ca: Updated Positioning Handout

Wheelchair

Exploration of sexual positions can start in your wheelchair. Before any sexual activity, make sure your brakes are locked, use anti-tipping bars if applicable, and positioning the chair by a wall for stability can be helpful. If in a power chair, turn your joystick off. Check the weight limit restrictions for your chair before sexual activity.

Other considerations for improving positioning in a wheelchair:

• Using the tilt function on power wheelchairs for easier access to genitals and pressure relief
• Removing armrests and lateral thigh supports may provide options for sexual activity in the chair with a partner but individual function and safety should be considered.

Bed

In the bedroom, sexual activity can be facilitated using positioning aids (pillows, wedges, straps, slings, etc.). Many cushions and wedges have removable cases that are washable between uses. Positioning pillows underneath and around areas of the body can relieve pressure to sensitive areas and improve stability for those with limited trunk strength and sensation. Foam wedges and positioning aids can be used for those with insufficient balance, providing a firmer surface to perform sexual activities. The resources above provide some examples. 

Other furniture

Sex furniture, also known as erotic or intimate furniture, can increase pleasure while facilitating positioning. Several options can be found on the 8.5 Sexual Aids page.

Shower chairs are used by some for support during sexual activity in the bathroom. Things to be mindful of while in the shower/tub are the weight restrictions if using shower chairs. Wet surfaces are slick and can be hazardous and shower/tub space can be limited so that positioning may be difficult.

*References found on page 8.6 Resources and References within this chapter

 

8.5. Sexual Aids

Disclaimer:

Content in this section is intended for adult (age 18+) educational purposes. United Spinal Association bears no responsibility for the accuracy, legality, or content of the external site or for that of subsequent links. Contact the external site for answers to questions regarding its content. Information about a therapy, service, product, or treatment does not imply endorsement and is not intended to replace advice or directives from your healthcare provider. There is always a risk with any type of sexual activity, speak with your healthcare provider about options to maximize your safety.

General Information on Sexual Aids

A spinal cord injury does not mean the end of your sex life. Sensation and function may have changed, but there are numerous ways to enhance and rediscover your abilities during sexual activity. Sexual aids (also known as sex toys) and adapted devices can facilitate sexual activity and the ways people can express themselves sexually, as individuals and partners. Some sexual aids have features such as larger button controls, switches, remotes, handles, etc. Consult an occupational therapist for alternatives or adaptations you can make to your devices for ease of use. See 8.3 Medical Considerations page for information about Continence aids, and Skin and Sensation aids.

When shopping for sexual aids, ask yourself…

• How do you plan to use it? By yourself or with a partner?
• Will you need assistance? Does it require set-up?
• What functional abilities are required to use this device?
• What is required for charging the device? Does it plug in or use batteries?
• Is the device waterproof?
• Would it require modifications?
• How do you clean it?
• How much sensation do you have?

If you have any questions related to a sexual aid and any special health concerns for you, please consult your healthcare professional.

Using Sexual Aids

Before purchase, check what type of material the aid is made of, taking into consideration any material allergies you may have and what kind of lubricant you might be using. Choosing and using an aid compatible with all of your senses can increase the overall pleasure of the experience. Please see the Resource list below.

Cleaning

Do NOT transfer sexual devices/aids between bodily orifices on self or others. Doing so can lead to bacterial infections or illnesses. Cleaning your toy will depend on the material, components, and other factors.

Lubrication

Ample lubrication is essential to prevent injury to sensitive tissues (vaginal, anal) during sexual activity including while using penetrative devices, it is important to use ample lubrication to aid in comfort and safety. Women with spinal cord injury often experience decreased natural vaginal lubrication during arousal. There are a variety of lubricants that can be used during sexual activity to increase sensation, comfort, and pleasure. Any fragrances and dyes added to lubricants disrupt the natural pH of the vagina and can lead to infections. Oil-based lubricants are not recommended as they are harmful to the vagina, and cause breakdown of materials such as latex and staining to materials.

Water-based

• Safe to use with condoms, both latex, and non-latex
• Can be used safely with silicone toys
• Washes off easily

Silicone-based

• Hypoallergenic
• Safe to use with condoms, both latex, and non-latex
• Long-lasting
• Warming lubricants are often silicone-based
• Silicone lubricant will break down silicone toys

Positioning

Proper positioning during sexual activity can improve access, stability, comfort, and pressure relief for those with limited strength and mobility. Some sexual positions may cause pain, discomfort, or fatigue for those with SCI/D but can be adjusted with adaptive devices or positioning aids. Experimentation to find the positions that are most comfortable for you is encouraged. Positioning aids should have cushioning or protective aspects so as to minimize any friction or pressure during sexual activities. You’ll also want to be aware of prolonged positioning or activities that cause friction which can have a negative impact on your skin integrity.

Positioning aids

There are a variety of straps and harnesses that can be utilized for positioning for those with limited mobility. If using these items look for padding that can protect skin in areas lacking sensation. Harnesses are available in many types that allow the user to modify the position of sexual aids during intimacy. There are harnesses that you can affix a toy to an object or person allowing for hands-free options during play.   

Sex Furniture

Sex furniture is specifically designed to facilitate positioning and sexual activity. If you are looking for something more cost-effective, getting creative using positioning aids or adaptive equipment that you may already own can be an excellent place to start. Check the restrictions for weight and functionality before using for sexual activity. Sex stools and chairs are a creative way to increase mobility during sexual activity. Some stools allow bouncing motion requiring less effort in a variety of positions. Stools require the user to have trunk and some pelvic control. The Intimate Rider is a sex chair with gliding action, created by a man with a C6-7 SCI, to improve mobility during sexual activity. Some arm movement is necessary to stabilize yourself and to set the Intimate Rider into motion.

There are a variety of positioning aids designed with sexual activity in mind. Sex ramps, wedges, and customizable sofas and benches are some of the options available. Ramps and wedges are perfect for facilitating positioning for comfort and ease of access during sexual activity. Positioning pillows underneath and around areas of the body can relieve pressure to sensitive areas and improve stability for those with limited trunk strength and sensation. Foam wedges and positioning aids can be used for those with limited balance, providing a firmer surface to perform sexual activities on or against. See “Resources” below for further information on positioning aids and furniture that aids with sexual activity.

Vibrators

Vibrators have been around since the late 19th century, and have been used for various functions. Typically, battery-operated vibrators will be less intense than plug-in or rechargeable options. If using vibrators with a “hands-free” option, be mindful of overheating and areas of sensitivity. The difference between external and internal vibrators depends on the user’s preference, as most toys with internal functions will be able to be used externally. Shape, size, and color are all dependent on the user’s preference and sensation capabilities. For individuals with limited dexterity there are various options including long-handled wand vibrators, tongue vibrators, and finger vibrators. It’s important to note that the risk of autonomic dysreflexia (AD) increases for susceptible people with SCI (those with neurological level of injury at T6 and above) who engage in more intense sexual stimulation, including the use of vibrators. For further information related to AD and sexuality please see section 8.3 “Medical Consideration”.

Sensation

Exploring your sensation may lead to discovery of new erogenous zones such as ears, nipples, shoulders, nape of the neck and your “transitional zone” ( just below the last region of skin with preinjury levels of sensation that has some altered sensation). Using a little creativity with touch and pressure can open up a world of pleasure to your senses.

For those with decreased or limited sensation, it can be difficult to detect excessive pressure and friction during sexual activity, so it is imperative to follow safety instructions and usage warnings on sexual aids. For those who experience discomfort with deep penetration, bumpers can be used with penetrative devices or on the penis to restrict the depth of penetration. See Resources below.

Devices for Erectile Dysfunction

Penis Rings
Penis rings (constriction bands, cock rings) Can be used around the base of the penis to enhance or maintain an erection during sexual activity by keeping blood flow restricted to the penis. Metal rings should not be worn longer than 20-30 minutes at a time.

Penis Pumps (Vacuum Erection Device)

Can be used to increase blood flow to the penis, increasing erection size and used with constriction bands. Contraindications to using penis pumps are peripheral vascular disease (PVD), clotting disorders, diabetes, and skin integrity. Pumps may be manually operated, or battery powered.

For men with difficulty obtaining or maintaining an erection, hollow dildos are also available that can accommodate a penis. Please note that medication options for erectile dysfunction are discussed in Section 8.1, General.

Sexual Aids and Positioning Resources

• PleasureAble - A Sexual Device Manual for People with Disabilities - DHRN/VCH (PDF). This manual was created by a team from the University of British Columbia as a practical resource for persons with disabilities and health care clinicians who work with these clients.
• Sex Position Handbook – SCISEXUALHEALTH.CA. This resource is provided by SCI Sexual Health Canada. The Sexual Health Rehabilitation Service offers specialist clinical services at two sites: Blusson Spinal Cord Centre at Vancouver General Hospital and at the GF Strong Rehabilitation Centre. It is a specialized service that’s unique in Canada, including five Sexual Health Clinicians and a Sexual Medicine Doctor, trained in sexual health, disability and rehabilitation.
• Sex and Love and Intimacy After SCI: Positioning With Partners. This resource is provided by Mount Sinai Hospital (a Spinal Cord Injury Model System Center) through a grant from the Craig H. Neilsen Foundation and support from community partners to provide more educational resources about sex, sexuality and intimacy after spinal cord injury.

 

8.6. Everlasting Love series about Sex, SCI, MS and ALS

Everlasting Love video series about Sex, SCI, MS and ALS

This 40 episode series features Dr. Marcalee Alexander along with Dr. Rafe Biggs, Deborah Davis, Hector DelValle and Ligia Andrade Zuniga in an interactive program focusing on sexuality and spinal cord injury (SCI), multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS). While the focus of the series is primarily about these disabilities, the information presented is useful to persons with disability, their partners, health care professionals and the general public.

7/5/2021     What is Everlasting Love?

7/12/2021   Turn Me On

7/19/2021   Dating in a wheelchair

7/26/2021   Bringing It Up

8/2/2021     Answering Your Questions!

8/9/2021     Improving Sexual Satisfaction

8/16/2021   Talking Tantra w/ Guest Mitch Tepper

8/23/2021   MS & Sexuality

8/30/2021   MS & Sexuality: Treatments

9/13/2021   Sexual Orientation and Disability

9/20/2021   ALS & Sexuality

9/27/2021   ALS & Sexuality: Part 2

10/4/2021   A Conversation on Sex and Disability... in Spanish!

10/11/2021  A Conversation on Sex and Disability... in Spanish! Part 2

10/25/2021 Surrogate Partner Therapy: An Important Option in Rehabilitation

11/1/2021    Surrogate Partner Therapy: A Personal Experience

11/8/2021   Sexuality Reborn: 30 Years Later

11/15/2021 The M Word

12/6/2021  Sex Toys: The Small Variety

12/13/2021 Sex Toys: The Larger Kind!

1/24/2022  The Psychology of Dating

1/31/2022  The Psychology of Dating: Part 2

2/21/2022 Love Yourself!

2/28/2022 Caregiving and Sexuality

3/7/2022   Aging & Impact on Sexuality

3/14/2022 Successfully Managing Bowel and Bladder for Stress-Free SEX

3/21/2022 Improving Male Fertility

4/8/2022 Marriage and Family

4/11/2022 Improving Male Sexual Arousal

4/18/2022 Disability and Erections

4/25/2022 Pregnancy and Having Kids

 

 

 

8.7. References

REFERENCES

Overview

• Alexander, M. (2017). Sexual Sustainability: A guide to having a great sex life with a spinal cord disorder [Kindle ebook]. Amazon.com Services LLC. https://www.amazon.com/Sexual-Sustainability-having-spinal-disorder-ebook/dp/B077HT5YQH

• Alexander, M. (2018). Sexual Sustainability After SCI [Webinar]. United Spinal Association. https://unitedspinal.org/webinar/sexual-sustainability-after-sci/

• Alexander, M., Courtois, F., Elliott, S., & Tepper, M. (2017). Improving sexual satisfaction in persons with spinal cord injuries: collective wisdom. Topics in Spinal Cord Injury Rehabilitation,  23(1), 57–70. https://doi.org/10.1310/sci2301-57

• Carlson, T. (2013, March 9). Sex Do you still enjoy it?. New Mobility. https://www.newmobility.com/2013/03/sex-do-you-still-enjoy-it/

• Consortium for Spinal Cord Medicine. (2010). Sexuality and reproductive health in adults with spinal cord injury: a clinical practice guideline for health-care professionals. The journal of spinal cord medicine, 33(3), 281–336. https://doi.org/10.1080/10790268.2010.11689709

• Consortium for Spinal Cord Medicine. (2011). Sexuality and reproductive health in adults with spinal cord injury: what you should know. Paralyzed Veterans of America, Washington, DC; Available at: www.PVA.org

• Courtois, F., Alexander, M., & McLain, A. B. (2017). Women's sexual health and reproductive function after SCI. Topics in spinal cord injury rehabilitation, 23(1), 20-30. https://doi.org/10.1310/sci2301-20

• Craig Hospital. (2020, January). Sexual function for men after spinal cord injury. https://craighospital.org/resources/sexual-function-for-men-after-spinal-cord-injury

• Craig Hospital. (2020, January). Sexual function for women after spinal cord injury. https://craighospital.org/resources/sexual-function-for-women-after-spinal-cord-injury

• Afferi L, Pannek J, Louis Burnett A, et al. Performance and safety of treatment options for erectile dysfunction in patients with spinal cord injury: A review of the literature. Andrology. 2020 Nov;8(6):1660-1673. https://doi.org/10.1111/andr.12878

• Hess, M. J., & Hough, S. (2012). Impact of spinal cord injury on sexuality: broad-based clinical practice intervention and practical application. The Journal of Spinal Cord Medicine, 35(4), 211–8. https://doi.org/10.1179/2045772312Y.0000000025

• Karp, G. (2013, Feb 1). What Great Sex Really Is: A Journey from Teenage Paralysis. New Mobility. https://www.newmobility.com/2013/02/spinal-cord-injury-and-sex/

• Linton, R. (2017, Feb 1). Women’s Pleasure. New Mobility. https://www.newmobility.com/2017/02/womens-pleasure/ 
  
  
• Linton, R. (2020, Feb 3). Self-Image and Intimacy: Beating the Body Rut. New Mobility. https://www.newmobility.com/2020/02/self-image-and-intimacy/

• Lollino, S. (2015, Feb 1). Sex, Women and SCI. New Mobility. https://www.newmobility.com/2015/02/sex-women-sci/

• Model Systems Knowledge Translation Center (MSKTC). (2015). Sexuality & Sexual Functioning after SCI. https://msktc.org/sci/factsheets/sexuality

• Mount Sinai Hospital. (2018). Sexuality after SCI. https://www.sexualitysci.org/

• Previnaire, J. G., Soler, J. M., Alexander, M. S., Courtois, F., Elliott, S., & McLain, A. (2017). Prediction of sexual function following spinal cord injury: a case series. Spinal Cord Series and Cases, 3(1), 1-7.

• Tepper, M. (2015, Feb 1). The Process of Sexual Self-Discovery. New Mobility. https://www.newmobility.com/2015/02/sexual-self-discovery

• Tolan, M. (2017, Feb 1). Christine Selinger: Conversations About Sex. New Mobility. https://www.newmobility.com/2017/02/conversations-sex-disability/

Relationships & Dating Section

• Airey, C. (2018). Dating with a Spinal Cord Injury: An IPA Study (Doctoral dissertation, City, University of London).

• Byzek, J. (2001, Feb 1). Committed Couples. New Mobility. https://www.newmobility.com/2001/02/committed-couples/

• Byzek, J. (2013, Feb 1). Sex, Wheels & Relationships: Here Comes the Bride... and Bride. New Mobility. https://www.newmobility.com/2013/02/here-comes-the-bride-and-bride/

• Carlson, T. (2013, Nov 1). What Should You Really Put In That Dating Profile? New Mobility. https://www.newmobility.com/2013/11/really-put-dating-profile/

• Craig Hospital. (2015). Long term caregivers: For better and for worse. https://craighospital.org/resources/long-term-caregivers-for-better-and-for-worse

• Eglseder, K., & Demchick, B. (2017). Sexuality and spinal cord injury: the lived experiences of intimate partners. OTJR: Occupation, Participation and Health, 37(3), 125-131. https://doi.org/10.1177/1539449217701394

• Facing Disability. (n.d.). Spinal Cord Injury Videos by Topic. Coping with Spinal Cord Injury |Video and Resources | Facing Disability. https://facingdisability.com/spinal-cord-injury-videos/

• Furlong, R. (2012, Feb 1). Sex, Wheels & Relationships: A Mature Love. New Mobility. https://www.newmobility.com/2012/02/sex-wheels-relationships/

• Ghenis, A. (2017, May 27). Tips for Mentioning Disability on Dating Apps. New Mobility. https://www.newmobility.com/2017/05/disability-dating-apps/

• Google, Inc. (2020, May 21). Find wheelchair accessible places with Google maps. https://www.blog.google/products/maps/wheelchair-accessible-places-google-maps/

• Hupe, E. (2020, Feb 3). How to Keep the Flame Burning. New Mobility. https://www.newmobility.com/2020/02/how-to-keep-the-flame-burning/

• IAccess Life. (2020, April 21). Best apps for wheelchair users & caregivers. https://www.iaccess.life/best-apps-for-wheelchair-users-caregivers/

• IAccess Life. (2020, April 21). How to find wheelchair accessible restaurants near you. https://www.iaccess.life/how-to-find-wheelchair-accessible-restaurants-near-you/

• Jeyathevan, G., Cameron, J. I., Craven, B. C., Munce, S. E., & Jaglal, S. B. (2019). Re-building relationships after a spinal cord injury: experiences of family caregivers and care recipients. BMC neurology, 19(1), 1-13. https://doi.org/10.1186/s12883-019-1347-x

• McBride, S. (2019, Feb 1). New Mobility Guide to Online Dating. New Mobility. https://www.newmobility.com/2019/02/guide-to-online-dating-with-disability/

• McCarthy, K. (2018). Dating as an Occupation: Swipe Right for Occupational Therapy. OT Practice, 23(4), 12.

• Mattlin, B. (2015, Oct 1). Inter-Abled Couples: Challenges and Joys. New Mobility. https://www.newmobility.com/2015/10/inter-abled-couples/

• Ruder, I. (2020, Jan 1). What Caregivers Care About. New Mobility. https://www.newmobility.com/2020/01/what-caregivers-care-about/

• Santinele Martino, A. (2017). Cripping sexualities: an analytic review of theoretical and empirical writing on the intersection of disabilities and sexualities. Sociology Compass,11(5). https://doi.org/10.1111/soc4.12471

• Spinal Cord Injury BC. (2019, September 20). Relationships. SCI Sexual Health. https://scisexualhealth.ca/relationships/

• New, P. W. (2019). Sexual and Body Esteem in People with Spinal Cord Damage. Sexuality and Disability, 37(1), 3-14. https://doi.org/10.1007/s11195-018-09553-4

Medical Considerations Page

Sexually Transmitted Infections and Safe Sex

• Consortium for Spinal Cord Medicine. (2010). Sexuality and reproductive health in adults with spinal cord injury: a clinical practice guideline for health-care professionals. The Journal of Spinal Cord Medicine, 33(3), 281–336. https://doi.org/10.1080/10790268.2010.11689709

• Consortium for Spinal Cord Medicine. (2011). Sexuality and reproductive health in adults with spinal cord injury: what you should know. Paralyzed Veterans of America, Washington, DC; Available at: www.PVA.org

• Spinal Cord Injury BC. (2020, January 28). Contraception. SCI Sexual Health. https://scisexualhealth.ca/contraception/

Mental Health and Sexuality

• Model Systems Knowledge Translation Center (MSKTC). (2010). Depression and spinal cordinjury. https://msktc.org/sci/factsheets/depression

• Peter, C., Müller, R., Cieza, A., & Geyh, S. (2012). Psychological resources in spinal cordinjury: a systematic literature review. Spinal Cord, 50(3), 188-201. https://doi.org/10.1038/sc.2011.125

• Post, M. W. M., & Van Leeuwen, C. M. C. (2012). Psychosocial issues in spinal cord injury: a review. Spinal Cord, 50(5), 382-389. https://doi.org/10.1038/sc.2011.182

Autonomic Dysreflexia

• Allen KJ, Leslie SW. Autonomic Dysreflexia. [Updated 2020 May 28]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2020 Jan. Available from: https://www.ncbi.nlm.nih.gov/books/NBK482434/

• Courtois, F., Rodrigue, X., Côté, I., Boulet, M., Vézina, J. G., Charvier, K., & Dahan, V. (2012). Sexual function and autonomic dysreflexia in men with spinal cord injuries: how should we treat? Spinal Cord, 50(12), 869-877. https://doi.org/10.1038/sc.2012.83

• Elliott, S., & Krassioukov, A. (2006). Malignant autonomic dysreflexia in spinal cord injured men. Spinal Cord, 44(6), 386-392. https://doi.org/10.1038/sj.sc.3101847

• Consortium for Spinal Cord Medicine (2020).  Evaluation and Management of Autonomic Dysreflexia and Other Autonomic Dysfunctions: Preventing the Highs and Lows. Paralyzed Veterans of America, Washington, DC; Available at: www.PVA.org

Skin

• Hess, M. J., & Hough, S. (2012). Impact of spinal cord injury on sexuality: broad-based clinical practice intervention and practical application. The Journal of Spinal Cord Medicine, 35(4), 211-218. https://doi.org/10.1179/2045772312Y.0000000025

• Nummenmaa, L., Suvilehto, J. T., Glerean, E., Santtila, P., & Hietanen, J. K. (2016). Topography of human erogenous zones. Archives of sexual behavior, 45(5), 1207-1216. https://doi.org/10.1007/s10508-016-0745-z

• Sramkova, T., Skrivanova, K., Dolan, I., Zamecnik, L., Sramkova, K., Kriz, J., ... & Fajtova, R. (2017). Women's sex life after spinal cord injury. Sexual medicine, 5(4), e255-e259. https://doi.org/10.1016/j.esxm.2017.07.003

Continence: Bladder

• Anderson, K. D., Borisoff, J. F., Johnson, R. D., Stiens, S. A., & Elliott, S. L. (2007). Spinal cord injury influences psychogenic as well as physical components of female sexual ability. Spinal Cord, 45(5), 349-359. https://doi.org/10.1038/sj.sc.3101979

• Chapple, A., Prinjha, S., & Salisbury, H. (2014). How users of indwelling urinary catheters talk about sex and sexuality: a qualitative study. British Journal of General Practice, 64(623), e364-e371. https://doi.org/10.3399/bjgp14X680149

• Cramp, J. D., Courtois, F. J., & Ditor, D. S. (2015). Sexuality for women with spinal cord injury. Journal of sex & marital therapy, 41(3), 238-253. https://doi.org/10.1080/0092623X.2013.869777

• Kreuter, M., Taft, C., Siösteen, A., & Biering-Sørensen, F. (2011). Women's sexual functioning and sex life after spinal cord injury. Spinal cord, 49(1), 154-160. https://doig.org/10.1038/sc.2010.51

Continence: Bowel

• Benevento, B. T., & Sipski, M. L. (2002). Neurogenic bladder, neurogenic bowel, and sexual dysfunction in people with spinal cord injury. Physical therapy, 82(6), 601-612. https://doi.org/10.1093/ptj/82.6.601

• Coggrave, M. J., Ingram, R. M., Gardner, B. P., & Norton, C. S. (2012). The impact of stoma for bowel management after spinal cord injury. Spinal Cord, 50(11), 848–52. https://doi.org/10.1038/sc.2012.66

• ConvaTec. (2020). Intimacy with an ostomy. 
  https://www.convatec.ca/ostomy/living-with-an-ostomy/intimacy/

• Francis, K. (2007). Physiology and management of bladder and bowel continence following spinal cord injury. Ostomy Wound Management, 53(12), 18.
  
  
• Hollister. (2018). Sex after ostomy surgery: Do’s and don’ts. https://www.hollister.com/en/ostomycare/ostomylearningcenter/livingwithanostomy/sexafterostomysurgerydosanddonts

• Hughes, M. (2014). Bowel management in spinal cord injury patients. Clinics in Colon and Rectal Surgery, 27(3), 113–115. https://doi.org/10.1055/s-0034-1383904

• Krassioukov, A., Eng, J. J., Claxton, G., Sakakibara, B. M., & Shum, S. (2010). Neurogenic bowel management after spinal cord injury: a systematic review of the evidence. Spinal Cord, 48(10), 718–33. https://doi.org/10.1038/sc.2010.14

• Skye, V. (2018, Feb 1). Relationship Baggage: Dating with a Colostomy. New Mobility. https://www.newmobility.com/2018/02/dating-with-colostomy/

• Sprunk, E., & Alteneder, R. R. (2000). The impact of an ostomy on sexuality. Clinical Journal of Oncology Nursing, 4(2), 85–8.
  
  
• VeganOstomy. (2018, September 25). Sex with an ostomy: Tips for better intimacy (W/ video). https://www.veganostomy.ca/sex-intimacy-ostomy/

Spasticity & Pain

• Elliott, S., & McBride, K. (2014). Sexual and reproductive health following spinal cord injury. Spinal cord injury rehabilitation evidence, Version 5, 1-84.
  
  
• Hess, M. J., & Hough, S. (2012). Impact of spinal cord injury on sexuality: broad-based clinical practice intervention and practical application. The journal of spinal cord medicine, 35(4), 211-218. https://doi.org/10.1179/2045772312Y.0000000025

• Jones, M. L., Leslie, D. P., Bilsky, G., & Bowman, B. (2008). Effects of intrathecal baclofen on perceived sexual functioning in men with spinal cord injury. The journal of spinal cord medicine, 31(1), 97-102. https://doi.org/10.1080/10790268.2008.11753988

• Kreuter, M., Taft, C., Siösteen, A., & Biering-Sørensen, F. (2011). Women's sexual functioning and sex life after spinal cord injury. Spinal cord, 49(1), 154-160. https://doi.org/10.1038/sc.2010.51

Respiratory

• Model Systems Knowledge Translation Center (MSKTC). (2015, August). Respiratory health and spinal cord injury. https://msktc.org/sci/factsheets/respiratory

• Schönhofer B., Von, S. K., Bucher, T., Nietsch, M., Suchi, S., Köhler D, & Jones, P. W. (2001). Sexuality in patients with noninvasive mechanical ventilation due to chronic respiratory failure. American Journal of Respiratory and Critical Care Medicine, 164(9), 1612–7. https://doi.org/10.1164/ajrccm.164.9.2103020

Functional Mobility & Positioning page

• Anderson, K. D., Borisoff, J. F., Johnson, R. D., Stiens, S. A., & Elliott, S. L. (2007). The impact of spinal cord injury on sexual function: concerns of the general population. Spinal Cord, 45(5), 328–37. https://doi.org/10.1038/sj.sc.3101977
  
  
• Elliott, S., Hocaloski, S., & Carlson, M. (2017). A multidisciplinary approach to sexual and fertility rehabilitation: the sexual rehabilitation framework. Topics in Spinal Cord Injury Rehabilitation, 23(1), 49–56. https://doi.org/10.1310/sci2301-49

• Hess, M. J., & Hough, S. (2012). Impact of spinal cord injury on sexuality: broad-based clinical practice intervention and practical application. The journal of spinal cord medicine, 35(4), 211-218. https://doi.org/10.1179/2045772312Y.0000000025

• Hattjar, B. (2017). Addressing sexual activity: A structured method for assisting clients with intimacy. OT Practice, 22(19), 8–10, 12.
  
  
• Model Systems Knowledge Translation Center (MSKTC). (2020, January). Understanding spinal cord injury: Part 2—Recovery and rehabilitation. https://msktc.org/sci/factsheets/understanding_sci_part_2

• Naphtali, K., MacHattie, E., Krassioukov, A., & Elliott, S. L. (2009). Pleasure ABLE: sexual device manual for persons with disabilities. Disabilities Health Research Network.
  
  
• Rowen, T. S., Stein, S., & Tepper, M. (2015). Sexual health care for people with physical disabilities. The journal of sexual medicine, 12(3), 584-589. https://doi.org/10.1111/jsm.12810
  
  
• Spinal Cord Injury BC. (2020, January 23). Mobility - SCI sexual health site. SCI Sexual Health. https://scisexualhealth.ca/mobility/

• Tepper, M. (2015, July 8). Sex and paralysis video series. Dr. Mitchell Tepper. https://www.drmitchelltepper.com/sex_and_paralysis_video_series

Sexual Aids Page

• Naphtali, K., MacHattie, E., Krassioukov, A., & Elliott, S. L. (2009). Pleasure ABLE: sexual device manual for persons with disabilities. Disabilities Health Research Network.