SCI News and Events

SCI August Highlight

Resource Highlight: “Adaptive Sports and Recreation” Narrated Slideshow 
The Model Systems Knowledge Translation Center (MSKTC) developed a new narrated slideshow entitled, “Adaptive Sports and Recreation.” Based on the Adaptive Sports and Recreation factsheet, this resource summarizes the important role that adaptive sports and recreation can play after SCI. This presentation shares the importance of adaptive sports and recreation, provides steps for getting involved in these activities, and helps people living with SCI prevent injuries while participating in sports activities. The slideshow may be reproduced and distributed freely with appropriate attribution. It is available on the MSKTC website here

Resource Highlight: “Exercise After Spinal Cord Injury” Narrated Slideshow 
The Model Systems Knowledge Translation Center (MSKTC) developed a new narrated slideshow entitled, “Exercise After Spinal Cord Injury.” Based on the Exercise After Spinal Cord Injury factsheet, this presentation summarizes the importance of exercise after SCI. This resource can help people with SCI understand the importance of regular physical activity, overcome barriers to getting involved, and identify potential health problem as they plan exercise activities. The slideshow may be reproduced and distributed freely with appropriate attribution. It is available on the MSKTC website here

 

No Body Is Expendable: Medical Rationing and Disability Justice During the COVID-19 Pandemic 

Erin  E. Andrews- VA Texas Valley Coastal Bend Health Care System, Harlingen, Texas, and The University of Texas at Austin Dell Medical School

Kara  B. Ayers- Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, and University of Cincinnati

Kathleen S. Brown- Fort Myers, Florida

Dana  S. Dunn- Moravian College

Carrie  R. Pilarski- University  of Michigan

The health threat posed by the novel coronavirus that caused the COVID-19 pandemic has particular implications for people with disabilities, including vulnerability to exposure and complications, and concerns about the role of ableism in access to treatment and medical rationing decisions. Shortages of necessary medical equipment to treat COVID-19 have prompted triage guidelines outlining the ways in which lifesaving equipment, such as mechanical ventilators and intensive care unit beds, may need to be rationed among affected individuals. In this article, we explore the realities of medical rationing, and various ap- proaches to triage and prioritization. We discuss the psychology of ableism, perceptions about quality of life, social determinants of health, and how attitudes toward disability can affect rationing decisions and access to care. In addition to the grassroots advocacy and activism undertaken by the disability community, psychology is rich in its contributions to the role of attitudes, prejudice, and discriminatory behavior on the social fabric of society. We call on psychologists to advocate for social justice in pandemic preparedness, promote disability justice in health care settings, call for transparency and accountability in rationing ap- proaches, and support policy changes for macro- and microallocation strategies to proactively reduce the need for rationing.

Public Significance Statement

This article explains barriers faced by disabled people in obtaining access to healthcare, including lifesaving treatment during the COVID-19 pandemic. Ableism can affect quality of life determina- tions and result in discriminatory behavior, unfairly costing disabled lives. Psychologists are positioned to advocate for social justice alongside the disability community by including disability in research, promoting meaningful inclusion in training and education, and leveraging roles in health care practice and leadership.

To read the full publication, please click below. 

No Body is Expendable; Medical Rationing and Disability Justice during COVID-19. 2020-54103-001.pdf

Craig H Neilsen Foundation Provides a Grant for Emergency Relief Following COVID-19 for Persons with Spinal Cord Injury

The CHN Foundation provided the University Of Michigan Department of PMR with a $10,000 grant to assist with the needs of persons with spinal cord injury during the current COVID-19 pandemic. Funds will be provided to the Ann Arbor Center for Independent Living (AACIL) and their staff to service those in need of basic assistance and support services. Tom Hoatlin and collaborators plan to make available support group activities for those interested in discussing with peers and mentors how they are being affected by this pandemic and their needs. The AACIL will make referrals to resources available in the community. Funds will also be used for those in need of purchasing cleaning and sanitization supplies, masks, medical supplies, transportation and other immediate needs for those living alone or with limited resources during this crisis. For more information please contact Tom Hoatlin at the AACIL: tom@aacil.org

SCI July Highlight

Kindness and Gratitude

Obituary for Carl Peter Hypio | Stone Funeral Home, Inc.

These are the two words that come to my mind when I think of Pete Hypio. Mr Hypio passed away on July 3 of this year. He and his wife, Shirley, have made continuous contributions and gifts to our University of Michigan Spinal Cord Injury Research program throughout the past 30 years. With their assistance, we have been able to provide our patients with educational materials needed after being discharged from our inpatient rehabilitation unit, therapeutic devices needed for their care, transportation and caregiver services, research incentives and small honoraria for patients with SCI participating in our studies, and attending our advisory council meetings for our various research projects. Currently we are using their gifts to assist us with the costs of running a clinical trial, primarily funded by the National Institute on Disability, Independent Living and Rehabilitation Research, to evaluate the efficacy of Gentamicin installations in the bladder to prevent the re-occurrence of urinary tract infections after SCI.  Mr. Hypio or Pete was born in Highland Park, Michigan, grew up in the Detroit area, later moving to Indian River in northern Michigan. He was instrumental in forming the Fraternal Order of the Eagles in 1983 and served as Aerie President and State President. During this time, he raised significant amounts of funds for our research project making SCI a priority of his research agenda contributions.   He is survived by his wife Shirley, three daughters and three sons, 19 grandchildren and 23 great grandchildren a brother and a sister and many nieces and nephews.  We will be always very grateful for his kindness and commitment to SCI research.

Denise Tate PhD

Professor of Physical Medicine and Rehabilitation, Past Director of the University of Michigan SCI Model System.

A new study on Sleep Apnea from the Veterans Affairs Medical Center in Detroit

Please note that this study is not sponsored by the University of Michigan and if interested you need to contact the investigator at the VAMC in Detroit directly.

  • Title of the study: Intermittent hypoxia initiated plasticity in humans: A multi-pronged therapeutic approach to treat sleep apnea and overlapping co-morbidities
  • All studies will be completed in the Respiratory Physiology Laboratory at the Veterans Affairs Medical Center (VAMC).
  • We are looking for 20 spinal cord injured individuals between the ages of 18-60 with motor incomplete injuries above T12, who have or suspect they have sleep apnea.
  • Additionally, we are looking for individuals currently not using a CPAP machine or on medication; not including medications specific to spinal cord injury.
  • You will be asked to visit the VAMC on 21 occasions, 5 of which are sleep studies (i.e. overnight), and the remaining visits occur during the daytime (duration of 2-4 hours). Scheduling is flexible to accommodate the participant’s availability.
  • Compensation details to be discussed over the phone.
  • Call (313) 576 -4414 for more information

Another Research Opportunity

Please note that this is not a University of Michigan Research Study. As such we are not responsible for your participation in this study. If interested we urge you to investigate it by contacting the investigators directly and speaking to your doctor if you have any concerns.

Investigators at the Veterans Affairs Hospital in Detroit are currently investigating if a breathing therapy can improve heart, lung, metabolic, cognitive function, and motor function in patients with a motor incomplete spinal cord injury and sleep apnea (or suspect they have sleep apnea). They are looking for study participants that are between the ages of 18-60, with a motor incomplete spinal cord injury above T12, and have elevated blood pressure (120/80 or higher), but are not taking any medications for other health conditions (for example, metformin, statins etc). Potential participants should be able to stand and initiate leg movement with or without an assistive device. If you are unsure of your blood pressure or presence of sleep apnea, you can be screened by lab personnel to determine potential involvement in the study. This is a paid research opportunity and compensation can be discussed over the phone. All study visits are completed at the Veteran Affairs Hospital in Detroit, Michigan. Please contact Dr. Gino Panza at 313.576.4414 for more information.

RESEARCH OPPORTUNITY for Veterans living with Spinal Cord Injuries

Please note that this is not a University of Michigan Research Study. As such we are not responsible for your participation in this study. If interested we urge you to investigate it by contacting the investigators directly and speaking to your doctor if you have any concerns.

Study Title: Striving to Work and Overcoming Employment Barriers Among Veterans with Spinal Cord Injury

Principal Investigator: John O'Neill, PhD- Director, Employment & Disability Research Kessler Foundation

Are you a Veteran living with a SCI?
Have you worked or looked for a job since the onset of your SCI?

THEN KESSLER NEEDS YOU FOR A NEW RESEARCH STUDY!
The purpose of this project is to identify 1) specific baniers to employment and 2) effective strategies used to overcome these barriers that Veterans with spinal cord injuries (SCis) encounter when striving to work,
that is, when trying to find a job or while on the job.

Who can participate? Veterans living with SCIs who...

  • Are between 18 and 64 years old
  • Have worked or looked for work since the year 2000 and after onset of SCI
  • Receive care or have participated in research at Kessler or an SCI Model System Center

What will happen?

  • Answer questionnaires about yourself (45 to 60 minutes)
  • Participate in an interview (up to 1 hour) to talk about experiences you've had while looking for a job or while working. 
  • Receive $50 compensation for your time. 

For More Information Contact:

Conner Clark

Research Assistant, Kessler Foundation

(973) 508-9953 

cclark@kesslerfoundation.org

 

SCI June Highlight

Fighting COVID Loneliness from a Wheelchair

https://facingdisability.com/blog/fighting-covid-loneliness-from-a-wheelchair

“How’s Your COVID Quarantine Experience Been?”

Terry, James and Barb Talk About Life During Lockdown

In May, we interviewed three individuals who experience life with a spinal cord injury (SCI). They, like the rest of us, have had to deal with the challenges of self-isolation during the pandemic. Currently living in different parts of the US, they thoughtfully and candidly answered our questions about their quarantine experience.  Terry Chase is from Colorado. James Murtha lives in Michigan. Barb Schoen resides in Texas. Their personal introductions follow.

Terry Chase

I have been injured since April 1988 with a T-12 incomplete SCI. I use a wheelchair most of the time and can walk short distances with braces and crutches.

I hold a doctorate in Nursing and am an Assistant Professor of Nursing-Mental Health/Leadership at Colorado Mesa University, Grand Junction, Colorado. In addition, I am working as a professional coach offering individual and group experiences for growth and transformation. I served as the Patient & Family Education Program Coordinator for 18 years at Craig Hospital. I am a person who has lived fully with spinal cord injury for 29 years and have been active in all things outdoors; including kayaking, cross-country skiing, hand-cycling and whenever possible, horseback riding.

James Murtha

I had a spinal cord injury on October 5, 2014 and am paralyzed tetraplegic C-4/5 incomplete.

I have a Master’s degree in Social Work and work in the mental health field as well as volunteer in political advocacy and creating adaptive products to make my life easier. Before Corona, I was living in my own one-bedroom apartment with my service dog, Phoenix.

 

Barb Schoen

I acquired my C-5/C-7 spinal cord injury in December 1997 in a motor vehicle accident and have benefits through no-fault insurance. These benefits have kept me healthy and helped me maximize my life as an individual with a severe disability.

After my injury I acquired a Master’s and (after a bit of arm twisting from Drs. Tate and Kalpakjian) a PhD in Rehabilitation Counseling from Michigan State University.

I currently live in Mission, Texas, and work as an Associate Professor at the University of Texas Rio Grande Valley (UTRGV). I spent the first seven years of my academic career at the University of Texas at El Paso (UTEP) where during part of that time I served as the Program Director for the Master of Rehabilitation Counseling Program. In 2017, I made the decision to relocate to UTRGV to focus on my true passions, teaching and research.

During my 10 years in Texas I have lived in border communities near some of the most dangerous cities in Mexico. Despite insurmountable challenges, both El Paso and Rio Grande Valley have a collective spirit of community and determination to work together to overcome the significant health and service disparities they encounter. I am proud that I’m able to help make a difference.

 

Each of our interviewees answered the same questions about their quarantine experience. Their answers follow.

Interviewer: Please describe your living circumstances during the lockdown months.

Terry: I live in my own home with my married partner. I am independent in all activities except picking up dog poop along my yard’s rough terrain. I have continued to work from home as a professor and coach. The one thing that has changed is that I’m not driving all over town with students since the lockdown orders were issued.

James: Since Corona, I have been living with my parents at their house in Saline, Michigan. For a brief period, I had my usual care agency personal attendants coming over to my apartment. Then once the stay-at-home order was enacted, my parents volunteered to take on all my care to keep the three of us safe. Typical daily activities have changed throughout the quarantine. At first, I was kind of blowing in the wind, jumping from activity to activity, days unplanned.  Recently, though, I have created a not-too-overextending daily schedule and added little time management techniques including the Pomodoro strategy which involves taking pre-planned breaks.  I’ve also set new goals, which have helped me to keep my mind active and to not dwell on the current global situation too much.

Barb: I currently live in an accessible house in a gated community about 10 minutes from the university. I am blessed to have 24-hour nursing and share my home with four cats (two 13-year old’s and two recent rescues).

I telecommute to work and have kept surprisingly busy with teaching, research, and service activities. I keep a regular schedule, getting up in the morning and heading to my home office where I spend most of my day and quite a few evenings. I've never been good about separating work from home so not a lot has changed for me in this area. Because I have 24-hour nursing services, I do have people around so I’m not totally self-isolating. Still, I’m not engaging with colleagues and friends in a personal way. In this quarantine, I miss the occasional play or dinner out with friends.

Interviewer: What has been the most difficult stuff to deal with during the lockdown?

Terry: I miss seeing my students and assisting with their development in becoming good nurses.

James: The most difficult thing to deal with during the lockdown has been taking care of my mental health, particularly with wondering if I am spending my time wisely. I see this time as a possible gift, or opportunity, and don’t want to look back wishing I had done something more useful. It has also been challenging having my parents take over all my care because I get concerned about asking them to do too much. I don’t want them to either physically hurt themselves and/or burn out. I have missed getting out and around town.

Barb:  

  • The fear of catching COVID-19.

I recognize with my diminished lung capacity and age that If I acquire the virus it will be a challenge and likely a fight for my life.

  • Not being able to control my environment 100%.

While I have personally self-quarantined for over two months my caregivers do not have that luxury. So, I am only as healthy as they are. We practice safe techniques, (e.g., wear masks and clean surfacesdown twice a day). Still with the estimate of 70% of the population ultimately catching the virus I constantly live in fear every time I have a sore throat, headache, or slight temperature.

  • Long term access to food and personal protective equipment (PPE). 

While I currently have a decent supply of masks and PPE for my nurses and food in my freezer, I am concerned that this pandemic will get worse and these items will become in short or no supply. Three of my orders through Amazon for medical supplies have not made it to my doorstep (they appear to have been intercepted along the way).

  • People not taking this pandemic seriously.

I fear this will result in limited access to food and PPE as noted above.

I miss shopping and eating out. Every Sunday was my day to put work aside and get out and enjoy a great meal and the joy of shopping. I never really bought much. It was just the opportunity to look around at pretty things. I think it was an escape from my everyday life, endlessly running round and round in the proverbial hamster wheel of frantic monotony. Occasionally I still enjoy a nice to-go meal and shop online, but it's not the same.

Interviewer: What has sustained you throughout this time of self-isolation?

Terry:  I have many personal and spiritual practices that have helped me during this time. I have had more time to meditate, play guitar, and do creative projects.

James: When it comes to what has sustained me during this time, I think it would come down to staying busy in ways that feel valuable and staying connected. During this lockdown, I’ve made it a goal to really work on myself and take care of many things I have been neglecting. I have been reading a lot of books and taking some free online classes; trying to work on my reading speed and my own efficiency with personal management. Like I alluded to before, scheduling, and other techniques have helped because routine is important. Journaling has also been valuable.  Video chatting with friends and family members has been reassuring.  I shamefully admit I often don’t have the desire or energy to talk to other people, but then I know it is very important for my health and wellness.  I usually feel better after I decide to connect; so good conversations keep me going.

Barb:  Staying in touch with friends and family through phone calls and weekly virtual visits with sisters and extended family has been heartening. My sister and I will record and watch television shows together even though we’re 1400 miles apart. I have also found comfort in the fact that I am financially stable and able to telecommute for work. Finally, the support of my family and caregivers is immeasurable.

Interviewer: Upon reflection, what are three unexpected good things that have come out of this pandemic quarantine experience?

Terry:

  1. I now know I am ready to move toward an independent Personal Coaching Practice and let go of full-time teaching.
  2. I have enjoyed more bike riding miles and more consistent horseback riding sessions.
  3. I have had greater companionship time with my partner and with my dogs, along with more time to read and listen to books on Audible.

James:

  1.  I have reached out to and spent more time with people who were already distant from me (living across the state, country, or globe) than before the pandemic. I hadn’t been giving as much of my attention to many friends and family members before, because of the mindless hustle and bustle which created tunnel vision and disillusionment. Now I feel more connected with important people in my life, at least somewhat. 
  1.  I have learned that, despite not being able to individually move my fingers, I am a decent sketch artist and a great guesser when it comes to figuring out what other people are drawing! I have spent quite a bit of time on apps such as Houseparty with friends and family and have gotten pretty good at “drawing” games.
  1. Third, one of many other things I have learned, has been realizing that life keeps moving on, even during a lockdown. Time waits for nobody and it still flies by. I can’t believe it has already been nearly 2 1/2 months and people do adapt. Those in my circles and I have adapted to the situation and are still moving forward.

Barb:

  1. An appreciation for a time without quarantine.
  2. The hope that this will shine a light on what life is like for many people with disabilities who live a life of quarantine due to lack of transportation and personal assistance.
  3. The generosity and bravery of home health care workers. I had a situation where I needed coverage and asked a nurse who didn't work regularly with me if she could come over. In good conscience I told her she was covering for a nurse who while not diagnosed, was symptomatic for COVID-19 (fortunately she was not positive). Initially the PRN nurse said no because she worried about risk to her children. She called me back within minutes stating, “I’m a nurse and ultimately became one to help people. I'll be there tomorrow and pray for the best”. It brought me to tears.

Interviewer:  Finally, what advice would you pass along to our readers who live with sci and are still forced to shelter in place?

Terry: 

  • Focus on the question: what do you want to create?  Choose to be a creator rather than a victim.
  • Learn something new.
  • Polish an old skill.
  • Call some people; have a conversation.

James: 

  • Figure out what works for you. You may have other priorities and not agree with the way I manage my time; and that’s OK. Figure out what is important to you, hold onto it and pursue it more fervently than you ever have.
  • Journaling and tracking what you are grateful for doesn’t hurt either.

Barb: 

  • Focus on what you can do. I've taken this approach since I first acquired my spinal cord injury over twenty years ago. It has helped keep me busy and relatively content. So, while it may be easy to say, I do think that it's important to find things we love and then focus on those areas.
  • Try to help others when possible. I had some craft kits from Oriental trading for a party I planned before the pandemic put the event on hold. One day I saw the box just sitting there in my spare room and thought I could share it with others. I sent a text to my neighbors with pictures of the crafts and asked if anyone wanted them for the family. The response was instantaneous. At least seven families responded, and I was able to give parents and their children a few hours of fun activity.
  • Reach out for support when you need it. Support comes in many forms. It may be calling a friend or family member to tell them how lonely, sad, or mad you feel. You may also need the help of a professional counselor through an organization or agency that provides tele-counseling.
  • Make lemonade. Make the best of your downtime by cleaning out a closet or a kitchen cupboard. While I’m still working, one of my sisters who is off has taken the opportunity to walk every day and clean her yard and basement. She has made the biggest pitcher of lemonade I've seen.

 

SCI May Highlight

Wheelchair and Assistive Technology Users

ATTENTION: PRECAUTIONS for COVID-19

Greetings from Beneficial Designs. My name is Peter Axelson. I am a wheelchair user, designer, and engineer, and I am reaching out today with important information regarding COVID-19 precautions to be taken by wheelchair users. In the 1970s, James Robb, MD, was one of the first molecular virologists in the world to study coronaviruses. Dr. Robb has shared an important email correspondence on how this virus can spread. According to Robb, the virus spreads in droplets through coughing and sneezing. He cautions that surfaces where these droplets land are infectious for about a week, on average. It is important to remember that direct contact with an infected surface does not guarantee the spread of infection, so long as you continuously wash your hands and keep them away from your face. If you push a manual wheelchair or use other types of assistive technology (AT), there are unique precautions you should take related to hand washing. COVID-19 can survive on the surfaces of your wheelchair or AT which you come in frequent contact with, such as the handrims. Any virus that might be on your hands is transferred to your handrims as you push your wheelchair.

Clean Hands

Washing your hands is incredibly important. Wash your hands with soap for 10-20 seconds and/or use a greater than 60% alcohol-based hand sanitizer whenever you return home from ANY activity that involves locations where other people have been. Using a fingernail brush is a good idea for those of us that have really rough skin from pushing our wheelchairs for so many years. I have been a manual wheelchair user for over 40 years, since I broke my back at the Air Force Academy during a training exercise. Because my hands are always touching the handrims on my wheelchair, I use anti-bacterial wet wipes to clean my hands before eating. Using hand wipes prior to meals, regardless of where I am, has reduced the amount of colds and flu I have contracted over the past 20 years. I generally do not touch the tires on my wheelchair, as I use flexible ergonomic handrims which provide a great grip without requiring hand-to-tire contact.

 

Tires transfer the virus to the hands and your hands transfer the virus to the handrims.

In addition, if you push on your tires, you are basically touching everywhere you have rolled. Wearinggloves when pushing is another option to keeping your hands cleaner. However, if you wear gloves youmight need to think about where you set them, as they may now be infected with a virus. It is also likelythat the inside of your gloves may become infected unless you always wash your hands before puttingthe gloves on.

Clean Wheelchair

Washing the surfaces on your wheelchair is an important practice. All solid surfaces that we touch could potentially have viruses on them. The handrims and tires on your wheelchair are solid surfaces. At home, when I wash my hands, I have two washcloths or anti-bacterial wipes available. After I wet my hands, apply soap, and then wash my hands, I get two washcloths or paper towels wet with some antibacterial soap and push my wheelchair around the house, sliding the wash cloths on the handrims as I go. I push my chair about 20 ft., or spin around in circles if i am in a public bathroom. Pushing 20 ft. wipes the handrims three times. It can be a bit tricky to learn how to do this. You can have someone slowly push you to make it easier. This allows me to clean the handrims on my wheelchair. I recommend a similar technique for cleaning your wheels; push the wheelchair around with the washcloths on the tires. While I’m at it, I also wipe the other surfaces that I regularly touch on my wheelchair; including the wheel locks, and the frame in front of my seat cushion. If you have arm supports, push handles or removable foot supports they should be cleaned as well. If you use a powered wheelchair, disinfect your joystick and controls and anything else that you regularly touch on your chair. Remember that many plastics could react poorly to a cleaner containing bleach. As long as you wash your hands with sanitizer or wet wipes before getting into your wheelchair, it can be helpful if someone else washes your tires and handrims while you are not using the chair. I also regularly clean grab bars and other surfaces that I touch in my home when making transfers into or out of my wheelchair. If you do not clean your wheelchair or AT after washing your hands you will re-infect your hands with the virus that might be on the handrims or other surfaces that you touch. In case you might have touched part of your uncleaned wheelchair or AT during the cleaning process, it might be a good idea to wash your hands again afterwards.

 

Pushing the chair forward and applying an anti-bacterial soap will clean your handrims. Make sure to wipe down all surfaces on your wheelchair that you or others regularly touch.  

Make sure to wipe down all surfaces on your wheelchair that you or others regularly touch.

Social Distance

There is also the matter of social distancing. Because wheelchair users tend to sit lower than mostpeople that are standing, we can experience more exposure to saliva droplets when talking to people taller than us. Many medical professionals have recommended observing a minimum of 6 ft. of distance to those around you to alleviate this risk. You may also consider wearing some type of face mask toprotect yourself from getting “sprayed” by people talkingto you. Medical face masks are in high demand right now,and not easy to get hold of. I have a face mask that I wearskiing on really cold days; it would catch any unintentionalspraying of saliva from someone’s speech, sneeze or cough.A virus could go through the mask since it is not an N95rated mask, however, my ski mask might be better thanno protection at all. A face mask would also keep me fromtouching my mouth and nose, further preventing infection. Itis important to limit hand-to-face contact as much as possible.Personally, I keep a cup of paint-stir sticks on my deskthat I use to scratch my face when I have an itch.

Wheelchair users sit lower and are more vulnerable to infected saliva droplets and aerosols. 

To Recap:

1. Wash your hands often and wipe them with anti-bacterial wipes just before and after you eat.

2. Wipe down your wheelchair (especially push rims, tires, and joysticks) or other AT with a sanitized cloth or anti-bacterial wipe.

3. Observe a minimum of 6 ft. of distance from others in social interactions, and consider the benefits of wearing a face mask, medical or otherwise.

We have a responsibility to ourselves and others to act in accordance with medical authority suggestions for preventing the spread of disease. By following these additional suggestions, as wheelchair users, we can all do our best to limit the spread of the virus and enable healthier environments for ourselves and those we come in contact with. I hope this advice can be of use and provide additional comfort in knowing the specific precautions that can be taken by wheelchair and AT users. This is an extraordinary trial we are going through. These precautions mean that it will take you much longer to practice appropriate hygiene than it will for everyone else. If you are alive and pushing a manual wheelchair independently, you have already proven to yourself that you have the perseverance to continue living your life. Do not give up because of a virus. Just because you use a wheelchair, and there is a new virus spreading around, you do not need to live your life in fear. Be courageous, and push forward.

Peter Axelson MSME, ATP, RET

 

Spinal Cord Injury Increases Risk for Mental Health Disorders

A new study finds adults with traumatic spinal cord injury are at an increased risk of developing mental health disorders and secondary chronic diseases compared to adults without the condition.

Drawing of brain
Image by Stephanie King

In a new study, published in Mayo Clinic Proceedings, researchers from Michigan Medicine find adults with spinal cord injury are at a higher risk of developing mental health disorders, including depression and anxiety, compared to adults without the condition.

The research team examined insurance claims data for adults, both with traumatic spinal cord injury and those without the condition, enrolled in a health insurance plan for at least three consecutive years and their diagnosis of a mental health disorder. In particular, they found adults with spinal cord injury had a higher incidence of anxiety disorders (19.3% vs 14.1%), depressive disorders (29.3% vs 9.3%), and psychological multimorbidity, or having more than two mental health conditions (37.4% vs 23.9%), as compared to adults without spinal cord injury.

“We also found that individuals with spinal cord injury had an increased risk of developing other chronic diseases, including cardiovascular and pulmonary diseases, diabetes, liver disease, cancer, arthritis, circulatory conditions and electrolyte disorders,” says Mark Peterson, Ph.D., M.S., FACSM, the Charles E. Lytle, Jr. Research Professor in physical medicine and rehabilitation at Michigan Medicine and the lead author of the study. “Which makes sense, as patients with spinal cord injuries have extreme sedentary behavior including prolonged bed rest after injury.”

Denise Tate, Ph.D., ABPP, FACRM, a professor of physical medicine and rehabilitation at Michigan Medicine and the senior author of the study, notes that much of the past research regarding spinal cord injury focuses on physical health outcomes. She says this study highlights the need for understanding this patient population’s mental health and clinical care needs, as they’re critical to overall quality of life and well-being in patients with spinal cord injury.

Peterson agrees, “Clinicians caring for adults with spinal cord injury need to be aware of the increased risk of developing mental health disorders in this patient population. This may be particularly important during these recent times of social distancing due to COVID-19, as these patients often already experience social isolation.”

Paper cited: “Psychological Morbidity and Chronic Disease Among Adults With Traumatic Spinal Cord Injuries,” Mayo Clinic ProceedingsDOI: 10.1016/j.mayocp.2019.11.029

SCI April Highlight

Spinal Cord Injury and Disorders Pressure Injuries Factsheet

People with spinal cord injury and disorders often have skin problems such as pressure injuries that won’t heal and require surgical interventions. The Spinal Cord Injury Model Systems have developed a pressure injuries fact sheet on this issue. The factsheet defines pressure injuries and describes what and where surgical and reconstructive treatments may be applied. The factsheet also discusses the risks of these treatments, along with what a person with pressure injuries can do to assist in their own healing. For more information please go to: https://msktc.org/sci/factsheets/surgical-and-reconstructive-treatment-pressure-injuries

American Association on Health and Disability - COVID-19 Survey on Healthcare and Healthcare Access 

The American Association on Health and Disability (AAHD) is conducting a confidential, real-time online assessment of the impact of the coronavirus pandemic on healthcare and healthcare access among persons with a range of disabilities. We have developed the COVID-19 & Disability Survey to collect and analyze that data. We are asking our colleagues to share the survey broadly amongst your constituents. Please use this link (https://www.surveymonkey.com/r/COVID-19-Disability)  in your listservs, newsletters, social media platforms, and other print and electronic dissemination strategies to help reach the most people. The survey will be open from April 17th, 2020 to May 1st, 2020.

SCI March Highlight

FOR THE LOVE OF THE GAME: ROLLVERINES REFLECT ON ANOTHER SUCCESSFUL SEASON

March 19, 2020  //  FOUND IN: Michigan Medicine News

 

Today, basketball games were originally scheduled to tip-off across the country as part of the NCAA men’s basketball tournament.

But even though the games were canceled, Headlines still has your March Madness fix — as the employee newsletter takes a look back at the successful second season of the Michigan Rollverines, Michigan Medicine’s pediatric wheelchair basketball team!

Crisscrossing the region

Over the past few months, the Rollverines — a team made up of players between the ages of 6 and 18 — traveled to Cincinnati, Ohio, Frankfort, Illinois and Grand Rapids, Michigan, to face other youth programs in three different tournaments. All of the teams are part of the junior division of the National Wheelchair Basketball Association.

“Our games served as great opportunities to teach teamwork and the value of working together,” said Daniel Ellman, a communication specialist at Michigan Medicine and head coach of the Rollverines. “But even more importantly, they were chances for our kids to spend time and compete against hundreds of athletes who they can relate to.”

That’s the basis for the program, which gives players an outlet to spend time each week with their peers.

“Often, kids with disabilities may only have one or two friends like them in their school,” Ellman said. “But when they come to practice, everyone is in the same boat and understands each other. It’s the perfect way to make life-long friendships.”

Open to all

The program, one of multiple adaptive sports provided by the University of Michigan Adaptive and Inclusive Sports Experience (UMAISE), is open to individuals of all ability levels.

“We accept any child who has some sort of disability that prevents them from playing able-bodied basketball,” said Meghan Veiga, a recreational therapist, Rollverines program coordinator and board member of UMAISE. 

Some players were born with Spina bifida, one of the most common birth defects. Others have cerebral palsy or limb differences.

While not all of them use wheelchairs full-time, each player gets to use a sports chair of their own thanks to a generous donation made by Dance Marathon at U-M in 2018.

“We really work to make sure all kids can get out of this program exactly what they need,” Veiga said.

That’s why the team offers two different levels of play — the recreational level, which meets once a week for practices, and the competition level, which has a longer practice each week, along with traveling to tournaments. All practices take place at Peace Lutheran Church in Ann Arbor, which donates gym space to the program.

Serving families

In addition to the players, parents and siblings get a lot of out of the program, as well. The weekly practices serve as an informal support group, where parents can discuss health issues, doctor’s visits or other topics that other parents at their children’s school may not understand.

And siblings of players have forged friendships that they carry with them through long weekends at tournaments.

For a program that began with a single basketball clinic a little more than two years ago, the growth of the Rollverines has been exciting for all to see.

“We’re thrilled with the direction our program is headed,” Veiga said. “Our kids have worked so hard to improve their skills without losing sight of the No. 1 goal — having fun. We can’t wait to see what lies ahead.”

Want to see what Rollverines players love most about playing basketball? Check out their answers in the video above — and look through photos from this season’s tournaments in the gallery below!

Finally, do you know a child who would be interested in joining the Rollverines? Contact Veiga at mveiga@med.umich.edu.

 

SCI February Highlight

We are pleased to provide an update on our study “Neurogenic Bowel and Bladder Management After Spinal Cord Injury: Examining Factors Involved in Successful Decision-Making Processes”, which has been in progress since Fall 2017. This US Department of Defense SCI Research Program funded study looks to understand how persons living with SCI make decisions regarding neurogenic bowel and bladder, specifically influencing factors, processes utilized by those making decisions and outcomes of those decisions. Now in its final year, the study team has enrolled more than 60 participants, representing both civilians and veterans with SCI all experiencing a variety of neurogenic bowel and bladder issues. We have conducted in-depth interviews and are currently analyzing the wealth of data each of these interviews has generated. As part of our learning, we would like to share with you a very personal video clip, discussing incontinence and its impact. We are curious about your thoughts on this and if you have experienced similar problems.

Although it is too early to discuss research results, the team has learned that persons living with SCI take into account a wide range of factors in the decision-making process. Learning about these can help us design better resources to assist with making an informed decision about bladder and/or bowel. We look forward to sharing more with you in the months to come. Please send us your ideas or questions related to this project to Suzanne Walsh, Project Coordinator, at svwalsh@med.umich.edu.

 

SCI December Highlight

Happy Holidays

As another holiday season approaches, we send you our warmest wishes. May you find the true spirit of the season and may it fill your heart with joy. As we start a new year, we wish to also remember those who have made a difference in the lives of people with spinal cord injury and all who care for them. We remember our friend and colleague and past advisory board member of the Michigan SCI Model System, Charles Beatty, who passed away in 2019. We are also grateful for the continued support from the Fraternal Order of the Eagles for their gifts towards our research. Their additional support has allowed us to continue our clinical trial work to prevent urinary tract infections after SCI. We also congratulate Alex Gossage for becoming the Executive Director for the Monroe and Ann Arbor Centers for Independent Living in the State of Michigan. Lastly, we thank our colleagues from Michigan Paralyzed Veterans of America and their leader Michael Harris, President of MPVA, for keeping us informed of legislative changes that can impact the lives of those living with SCI.  We have a great team of researchers here at Michigan but we could not succeed doing our work without the continued support of our friends and colleagues with SCI living in our community. Warm wishes to all!

 

SCI November Highlight 

Bowel and Bladder Care:

One Woman’s Private Story

By: Vanessa Lavin

 

I awoke with my body silenced. Paralysis of all four limbs… The conversation was simple. My surgeon sat at the side of my bed and gave me my prognosis: permanent and lifelong.

So, today I am writing this as my third year of quadriplegia approaches.Suppressed limbs were now my reality.

 Life can have a funny way of taking a weird turn.

Life can have a funny way of taking a weird turn. In an instant, dramatic life change can strike--even in the midst of some benign everyday activity. For me, it was unexpectedly falling into shallow beach water as we launched our little boat for the first time that summer. We were getting ready for fun in the sun. Then BAM! My life was totally transformed forever. Sure, I had expected at some point to hit a rough spot in my health down the road: signs of aging, aches, pains, maybe even cancer; but never, ever, did I entertain the thought of quadriplegia.

 ...what was spontaneous and free, now is strategically and carefully planned...

Now I do life in a different way. Though so drastically different, I am trying to keep it much the same as I it was before my injury. But what was spontaneous and free now is strategically and carefully planned out. As a woman, I do as much as I possibly can as I continuously adapt to my quadriplegia: parenting my two children, running errands, meeting friends for dinner and a movie. But all of this needs to be planned around my personal care.

My personal care is comparable to the beams and foundation of a home. Each day starts out very early with my bowel routine. The prescribed stool softeners still need the extra assistance of digital stimulation. Without this assistance I would be putting my health in grave danger. The threat of an Autonomic Dysreflexia episode is ever-present, so constipation for me is not an option. Just as proper bowel health and routine are a must, so is keeping my bladder empty (and happy). I do this by having a catheter in place 24/7. I have a nurse remove and replace my catheter weekly to help prevent urinary tract infections. I attach a Foley bag when I am in bed; otherwise I cap my catheter and empty my bladder every one and half to two hours. It’s rare that I have bladder accidents; I have become very aware when I need to urinate, and I empty my bladder when the need arises. My bowels prove to be a bit trickier. Even with strict consistency, my bowels at times let go anyways. These moments are humiliating and difficult as most times I am out of the house. Having good personal support workers or caregivers is critical during these times because prompt attention and clean-up is mandatory for good overall health.

CONSISTENCY AND GOOD PERSONAL CARE ARE KEY...

I know from very personal experience that bowel and bladder care is daunting, sometimes overwhelming, let alone humiliating. Consistency and good personal care are key to me having a fulfilled and active life within my home and my community. Because of these routines I am active and enjoying my life because there is still so much life for me to enjoy.

My life is rich because of my children. Being able to spend time with them and enjoy their company is something that cannot be measured. The fact that I am enjoying my friends and family and life in the community allows me to feel productive and valued as a person. That’s the important stuff.

In Memoriam

By: Pat Zuba, Occupational Therapist Clinical Specialist and Cindy Douglas, Physical Therapy Supervisor

Vanessa was one of the most inspirational patients we have ever treated in our 30 years at Michigan Medicine. She had a zest for life. Even when she was suffering from constant autonomic hyperreflexia, she was still able to see others in need and made every attempt to brighten their day. She taught yoga to fellow patients-it was the first time I ever actually felt relaxed following yoga and she achieved it all with her voice.

Her life remained full when she left Michigan Medicine. She attended her children’s school functions and sports and built a barrier free house to allow her access to all areas. Amazingly, she continued painting, which was a hobby for her, after she learned how to use a mouth stick. See:  https://www.pinterest.ie/jigipink/art/?autologin=true

Early in January 2018 Vanessa developed severe pneumonia and was admitted to the hospital. She had been off the ventilator using a phrenic pacemaker to breath since her injury. The pneumonia made it necessary to go back on the ventilator. She compromised with her doctors and agreed to 1 week on the ventilator. She had difficult conversations with her children, her close friends and family concerning her end of life decision. After one week, the ventilator was removed, and her lungs were not strong enough to sustain her mighty spirit. At the age of 49, surrounded by her family and loved ones, she passed away peacefully.

 

SCI October Highlight

PM&R Research Associate Attends Mary Free Bed SCI Symposium

Lynn Charara, a research associate working on various studies on quality of life after SCI, presented a research exhibition table at the Mary Free Bed Spinal Cord Injury Symposium in Grand Rapids on September 26, 2019.

The aim of the symposium was to discuss topics such as the latest SCI research, the nurse’s role in rehabilitation, specialized equipment for people with disabilities, and sexual function, parenting, and family communication for persons living with spinal cord injuries. Especially intriguing was Dr. Wise Young’s presentation on intensive walking training for persons with chronic complete SCI. In this session, Dr. Young discussed his human clinical trials in China, using umbilical cord blood mononuclear cells and lithium for regeneration. He displayed videos and pictures of patients with complete injuries regaining their ability to walk using a rolling walker as a result of the intensive training which included nurses walking the patients six hours a day, six days a week, for six weeks. After the great success of this trial, Dr. Young established a similar trial in the United States.

Several attendees, including nurses, social workers, community peer mentors, and other exhibitors expressed interest in the SCI research studies being conducted at Michigan Medicine PM&R.

 

SCI September Highlight

From Injury to Jewelry to Jurisprudence:
Dan Banda Shares His Journey of Physical and Professional Reinvention

Dan Banda was 23 when he sustained a T-2 injury from a motorcycle accident in 1986. When asked about his initial recovery from the acute spinal cord injury (SCI), Dan, now 55, says he feels fortunate that the only injury was to his spine, so he was able to begin rehabilitation as soon as he could sit upright.

He recalls being frustrated with his progress: “It seemed that a new limitation became obvious every day, and it took some effort to focus on what I could do, instead of what I couldn't do. After my injury, I found myself being exasperated with my inability to accomplish tasks. Everything was more difficult as a paraplegic. I was continually thinking about how much easier things would be if I were still able-bodied.” Looking back, he credits his family and friends with giving him the confidence to achieve what he has.

Within a year of his injury, Banda graduated from the University of Michigan with a fine arts degree in graphic design and a second degree in industrial engineering. After completing school, he worked as a freelance graphic designer and sign maker for local businesses, but, as he recounts, soon began “searching for a real job.”

Dan had kept in touch with his sculpture professor who recommended him to Matthew Hoffman, a well-known custom jeweler in Ann Arbor. Quickly joining the Hoffman business, Dan spent several years creating high-end jewelry under Matthew’s artistic guidance. When the business was unexpectedly forced to close a few years later, Dan was out of a job and suddenly challenged to reinvent the source of his earning power.

Dan currently works for a group of attorneys that specialize in antitrust and commercial trials, as well as tax litigation. He’s assisted with a few law suits, which can involve 100-hour work weeks. He remarks, “working as a custom jeweler at Christmas actually prepared me for these long hours of trial preparation! It has been interesting to learn about the intricacies of high finance in the corporate world and the operations of a wide array of industries--including gas and oil exploration, cranberry farming, and college athletics.”As he faced yet another challenge to creatively reinvent his career, he realized that he had been interested in law since he was young.  While surveying his friends for advice, one suggested that he look for a job as a paralegal and another recommended him to a couple of law firms in Ann Arbor. So, 22 years after his injury, Dan took on a new profession as a paralegal in 2008.

Over the years, Dan Banda has successfully traversed through a series of unexpected life circumstances. After adjusting to his SCI, he has repeatedly tapped into his creativity, social networking skills, ability to learn, and quiet sense of self-confidence to reinvent his role as a successful wage earner. From injury to jewelry to jurisprudence, Dan’s journey fascinates those who listen to his story.

When asked what advice he would give to others with SCI, he reveals, “I've been married (with no kids and a dog) for 22 years. I've also been very fortunate to have a loving and supportive family all my life, and this has helped me considerably.Over the years, my memory of being fully functional has faded, and I don't find myself making the before and after comparison as often. I was asked recently to rate my 'quality of life.' When I thought about it, I realized that my quality of life is much higher if I assess what I now have, instead of what I used to have.”

Today, Banda enjoys jewelry-making as a hobby.