Muscular Dystrophy

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September 5, 2023

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The Funny Side of Muscular Dystrophy: 911 and Jackets

Part of living with muscular dystrophy for over 20 years has taught me to laugh at myself on more than one occasion. Throughout my academic career I took things extremely seriously and was slightly (tremendously!) competitive. I won’t say that it got to the point of dominating my life, but it factored into my at times overly serious disposition. Luckily, I learned to lighten up eventually!

In 2019, I could see the light at the end of my graduate school tunnel. After years of research, writing, designing, performing experiments and reiterating, I finally set a date for my PhD defense. This still is one of the most nerve-racking experiences I’ve had! Besides the fact that I was presenting and defending all of the research I had done since approximately 2013 to my academic advisors and committee, there were 15 to 20 friends, family, and colleagues there supporting me. While I paced myself during practice sessions to talk for about 45 minutes with 30 to 40 minutes of close door discussion with my committee, it went much quicker unsurprisingly! About halfway through, I felt myself calm down a bit, and I finally got into a flow similar to other presentations in the past. No matter how much you prepare, there’s always going to be nerves for something this significant. Enter my adaptive needs. Part of my graduate school experience was becoming a pioneer. As a power wheelchair user with muscular dystrophy I had to adapt and experiment to complete simple tasks like typing, writing, opening doors, accessing elevators, entering laboratories, and attending meetings. Furthermore, it’s not like there were many examples to follow, which meant I had to blaze my own trail. One of the adaptations, that myself, and a team of students in a design class (Shout Out Team PERCH) came up with was based on an idea by one of my awesome advisors. The device would assist me in making my laptop more portable. For someone in a power chair driving alone is enough of a job. Adding things to carry is an entirely different problem. I always needed someone to pull the laptop out of my backpack and place it on a table or desk in the past. For the first time, I had a stable platform to place my computer. You can’t imagine how liberating and exciting this was! I could drive to a coffee shop, switch rooms in my home during writing sessions, and attend meetings and classes anywhere on campus with my trusty computer at my fingertips. I made use of some industrial grade Velcro to make sure the laptop didn’t fall and end up road kill. I could also attach my phone and the automatic door opener for my office on the platform. Why am I elaborating so much on this platform you ask? Now is the time that I have to remind you electronic devices don’t always behave like you expect… Because I had my laptop open during my dissertation defense, I could not see the screen of my iPhone. But I would periodically make eye contact with my audience and a few faces were looking down at where my phone was attached to my laptop stand. After completing my presentation, I took a quick break, closed my laptop and got a drink (tiny sip IYKYK) of water. When I looked down at my phone, I happened to see a very short phone number that was connected to someone on the other line talking about an emergency. Yep, my phone called 911 during my PhD defense! 😳I can’t imagine what the committee members were thinking watching my phone go into panic mode. Honestly, my phone must’ve been channeling my emotions because there were a couple of moments where I would’ve actually considered dialing 911. This ended up being a minor issue because I did pass my defense and am proud to look at my diploma as the culmination of years of teamwork with friends, mentors and family. I still think back on this as one of my biggest achievements because I was proving that someone with muscular dystrophy could earn a PhD in one of the most challenging fields of study. I will also remember the moment when my phone went rogue and tried to bail me out during the most critical point of earning my PhD!

Sometimes it’s not the electronics that go rogue and start doing random things. Anyone who has been on painkillers or other medications that alter your mental state will probably relate to the story. I was about halfway through my stay at the UNM hospital neurological ICU in 2021. I had never taken many medications, let alone powerful painkillers. This was the first time in my life when I honestly needed them. When you have muscular dystrophy, your muscles and ligaments are extremely tight to the point of developing contractures that severely limit range of motion. Hyperextensions are one of the most painful things you can endure. Not having my speech at the time, the nurses in the ICU had no choice but to roll me on my side for a number of care needs, including, avoiding pressure sores without my feedback. Once one of my nurses figured out that I was trying to write a note to her, I was able to communicate enough to let them know how much pain I was in during these turns. I started out with painkillers like Tylenol and eventually small doses of oxycodone. While these helped with some of the pain, they did not touch the excruciating shock waves going through my body during side to side turns. Oh, hello fentanyl. I’m sure that many of you know of this addictive opioid. Unfortunately, activities like transfers from bed to gurney and turning on my side were next to impossible without it. Fentanyl, more than any other medication I took over the 45 days in the hospital, played tricks on my mind. I said a couple of things that were interesting and alarming, especially for someone with a PhD in biomedical engineering. In 2021, Covid was still raging and remained embedded in my mind even more so being around more people in the ICU. My mother and father would alternate staying with me, which obviously meant they would leave and come back risking some additional exposure to infection. One wonderfully fugacious (shoutout to my Thermodynamics training!) night after receiving fentanyl, I began stressing about introducing the Covid virus into parts of the hospital that were not infected. I analyzed everything that was entering and leaving my room, including janitor brooms and my father’s JACKET. You can imagine the look on my parent’s faces when I began ranting about getting the contagion out of the hospital! I was adamant that this piece of comforting daily winter-wear was a vile infected monstrosity. At some point the effects wore off and my sanity and reason thankfully returned. There were other instances of fentanyl messing with my mental state, but for some reason this stands out. I’m fortunate now to be able to look back on my most life threatening experience and laugh at my fentanyl influenced self. While there are so many negative and stressful events that happened during that time, memories like this help me cope to this day. However, I will avoid this particular pain medication at all costs moving forward because of the mind altering side effects and more severe, addictive consequences.

The main point of sharing these humorous moments in my life with muscular dystrophy is to highlight that no matter how big or serious an event in your life seems at the time, you can always find a laugh somewhere. I continue to realize this more and more and apply it to my every day life. Laughing at yourself and your situation can sometimes be the best medicine for you and those around you. It can even be better medicine than powerful opioids. Whether you have a disability or not, there will obviously be times where you feel stressed, anxious, embarrassed, or in pain. I hope if you do not already look for humor in the face of adversity, you begin to try. Please feel free to share any of your funny life stories with me and others! Let’s take a roll on the funny side!

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Raya S

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@raya_s

August 31, 2023

Best Interests and the Disability Perception Gap

Part 1 of 2 Warning: Contains Spoilers and also contains references to end of life battles and withdrawal of care

I recently watched the (2023) British drama, Best Interests, about the fictionalized saga of one family’s battle over medical care—and the state’s right to decide to withdrawal care—for their disabled daughter. Over each episode we are introduced to the contours of each character and their position towards the continuation or withdrawal of care for 13-year old Marnie who has a form of Muscular Dystrophy and is ultimately hospitalized for a complication that requires complex interventional care. Despite the critiques I will level against the drama, I do recommend watching the series as it raises important issues around disability in society (e.g., state’s vs. parents’ rights in healthcare decisions, pandemic care-rationing, critiquing notions of normalcy in formulating notions of “quality of life,” etc.), and it also showcases the enormous talents of disabled actors (Niamh Moriarty, Matt Fraser, Lenny Rush, Kiruna Stammel, etc.). Ultimately, I think every show or film that tackles huge issues like Best Interests does is by nature reductionist because no one can cover everything in such a format no matter how talented the writers, yet this show raises incredibly important issues for the audience.

As I watched the first couple episodes of the show, a phrase I read awhile back jumped into my mind: disability perception gap. I originally confronted the phrase in “The Disability Perception Gap Policy Report” [hyperlink] published by Scope a few years ago. The authors of the report use the phrase to summarize their findings, that there is a gap between what the public perceives about disability and the reality of the disability experience, and this gap in perception perpetuates ableist culture and social structures. My critique of the show deals with the disability perception gap amongst medical professionals, which extends from and relates to the more general societal disability perception gap.

Like many people with a disability, I know from personal experience that one of the most important disability perception gaps that exist relates to medical professionals’ perceptions of disability and the quality of disabled life. The Medical Model [hyperlink], which discounts disabled lives and experiences and perceives disability as an automatically negative state, as a “tragedy,” is still the main framework that medical professionals are taught. A recent study in the U.S. demonstrates this physician disability perception gap as the researchers found that over 82% of a group of practicing physicians reported that “people with significant disability have worse quality of life than nondisabled people” and only about 40% of those physicians “were very confident in their ability to provide the same quality of care to patients with disabilities” [hyperlink]. There is, I would argue, a huge gap, a chasm, between how physicians perceive disabled lives and how people with disabilities experience and value their own lives. As mentioned in Best Interests, this particular disability perception gap, was, for example, on full display during the pandemic [hyperlink]. (I find Collin Killick’s poem, “The Quality of Life” particularly poignant on this theme. [hyperlink]) In the end, however, I would argue that the show did not go far enough in challenging this physician disability perception gap and that instead of subverting the gap, it actually reinforced it in fundamental ways.

The viewer was mostly introduced to the physician disability perception gap through the character of Marnie’s doctor, Samantha. Much was rightly done by the drama to humanize Samantha and to show that not only does she not take decisions to withdrawal care lightly, but that such decisions take a heavy toll on her. Yet, that very act of the humanization of Samantha is problematic because, I argue, it isn’t reciprocated with the corresponding humanization of her young patients. Given the gravity of the situation outlined for the audience, shouldn’t the physician’s humanity be juxtaposed more clearly with that of the children having their fate decided? But Samantha’s patients are often presented in scenes as merely objects in hospital beds and throughout the episodes the voices of such pediatric patients are virtually silent, even Marnie’s. Marnie is the fundamental object of life or death decisions, but as a character, she has no agency in those decisions (and mainly only appears through fragmented flashbacks—brief and incomplete flashes of her humanity mainly filtered through her family’s eyes). There is only fleeting exchange overall that relates to a disabled child themselves discussing end of life decisions, and that scene is filtered through the child’s mother. There is thus a trap that viewers may very well fall into wh

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MuscularDystrophy August 23, 2023

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13 things about my 45 days in ICU

I’ve been thinking back on my time in the intensive care unit in 2022 after emergency gallbladder surgery. At this point I am able to look back at some of the things that happened. I’ve consolidated several pieces of information that I learned. I hope if you’ve gone through something similar or even if you haven’t, this may help you or someone you care about! Thank you for reading and please share! #MuscularDystrophy #gallbladder #intensivecare

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MuscularDystrophy August 9, 2023

Why flying is “wheelie” difficult with MD

I am 34 years old with a PhD in Biomedical Engineering. I have MD and use a motorized wheelchair. There have been multiple issues in common with every flight I have been on. The airplane seat height was a significant challenge as I have muscle contractures and transfers are difficult, often requiring 2 to 3 people to lift me. Lavatory access was impossible and no alternatives were offered. The time required to board and for airline staff to load/unload my wheelchair in the cargo hold was also substantial.

During my time in academia, I was severely limited by distance when attending scientific research conferences. The longest distance I traveled by plane was New Mexico to Seattle on a nonstop flight with Southwest airline lasting 3 hours. Once the plane landed, the staff brought my chair to the boarding gate after what seemed like an hour of anxiously awaiting an opportunity to get to the airport bathroom. My wheelchair had to be manually pushed all the way from the bottom of the plane to my location. Keep in mind power wheelchairs can weigh 300+ pounds and cost $30,000+. Somehow my wheelchair technician back in New Mexico helped us reset the wheelchair.

On a spontaneous weekend trip to Los Angeles, I flew on a smaller United jet. Unlike the Southwest crew allowing me to load/unload directly from my wheelchair, United brought out what they termed an “aisle chair“ which looked to me like a chair for a 10 year old weighing 50 pounds. I was 21+ years old and about 200 pounds! In order to keep me secure in this tiny chair, I was strapped down head to toe which I have to admit made me extremely anxious and a bit claustrophobic (à la straight jacket). After going through this process again to exit the plane, I found out my joystick was broken off the armrest of my chair. The staff found two screws and somehow reattached the pieces. I then once again motored quickly to the nearest airport bathroom.

The bottom line from these stories (like so many others involving people who use motorized wheelchairs) is that is an exhausting and demoralizing experience. I haven’t traveled by plane since 2012 because of these issues and my disease progression. This means that I have to get someone to drive me out of state to attend any disability summit, research symposium, or visit my new nephew (a 20 hour drive!). Why do people with motorized wheelchairs have to be forced into avoiding flying altogether because they are afraid of injury or wheelchair damage? Airline companies must do better!

#MuscularDystrophy #Wheelchair #Disability

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