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.
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.
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.
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.
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.
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.”
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
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.
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 firstname.lastname@example.org.
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 email@example.com.
SCI December Highlight
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.
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.