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.