Why am I getting weaker again

Published: 01/31/2022 13:39:21 Modified: 01/31/2022 13:37:51 Over a year ago, when I took on the position of columnist and gave my ...



Published: 01/31/2022 13:39:21

Modified: 01/31/2022 13:37:51

Over a year ago, when I took on the position of columnist and gave my heart every month, I made the decision to not only discuss disability issues that I believe were neglected, but also to let my readers into the things that are happening in my life.

Because as I mentioned earlier in my columns, I consider everyone who regularly reads my writings to be my friend, and I’d be a terrible friend if I wasn’t transparent with you about things that currently affect me deeply. .

One issue that has weighed heavily on me for a month and a half is that my body has noticeably weakened – again.

My weakness first showed up the Tuesday before Thanksgiving. Similar to every other time in my life when I started to weaken, my first instinct was to get rid of it. I attributed the increased need to reposition my right hand on the controller I use to maneuver my chair to the slightly thicker sweatshirt I was wearing that day or not sleeping as well as I thought I would at night former. Because a fun fact about me is that I’ve always avoided thicker sweaters and sweatshirts like the plague for this exact reason: this slight change in weight on my spindly arms has the frustrating ability to dramatically decrease my movements and my strength.

This all may sound incredibly trivial, but since I was 15 when my strength began to decline rapidly, I have had to make the conscious choice many times to be cold rather than wear something that would impede more the little movement I have.

It was a decision I had hoped for for a while and would never have to make again, but unfortunately fate had other ideas.

When I started the very first FDA-approved treatment for my condition just over three years ago, it’s sad for me to admit it, but I had little hope that it would m ‘to help. The sobering truth about my disease is that it affects each person who has it differently and the reality of the treatment was the same. My doctors couldn’t predict how my body would react to it. In the three months between finding an access point to deliver the drug in my spine and when I received the first injection, they warned me that people in my age range were going from recovering significant muscle strength to maintaining the current strength they had. .

During those months, I mentally braced myself for the worst outcome while cautiously holding out hope for the best. Because even the worst possible outcome – simply maintaining my current level of functioning – was 10 times better than the trajectory my body was heading towards.

The treatment was approved by the FDA in late 2016 and my doctors said I was not a candidate because I had had my spine fused several years before. They were convinced that they couldn’t introduce the drug to me, other than an invasive procedure where they inserted a hole in my back and threaded a catheter through my spine to administer the drug intrathecally.

Given that I was considerably weaker than the last time I had been placed under anesthesia, I was fairly certain that I would not come out of the operation unscathed. So I declined my only option to receive the treatment at the time, and knowing there was nothing else to help me, I was shattered.

When I was younger, my doctors reiterated at my annual appointments that the weakness of my disease usually came in five-year increments. This was not the case for me however. Throughout my childhood, my strength was constant. It wasn’t until my teenage years that I experienced my first bouts of debilitating weakness. And what made it even more emotionally scarring was how quickly they happened: one day I could reposition my hand independently on the control of my wheelchair and the next day I couldn’t. more. The capacity losses happened more gradually at first, but by the time I reached my 18th birthday they were constant. It got to the point where I could barely cope with the loss of being able to do anything and learn to adapt before anything else happened – which inevitably took a toll on my mental health.

But luckily my brilliant doctors found a way to deliver the drug into my system and the treatment exceeded all of my expectations. It not only stopped the progression of my condition in its tracks, but also allowed me to become much stronger. Late last summer I got a new wheelchair and that, combined with my strength, meant that I didn’t have to reposition my hand on the controller nearly as often. And I enjoyed my newfound independence. I screamed with joy as I ran around my neighborhood while my mom was literally running after me because I had lost the ability to go fast in my chair about 10 years ago and reliving it was like getting a ability that I thought I had lost forever. However, just as quickly as this improvement, it was removed once again.

However, since I started treatment I had heard from others in my disability community that it is something that loss of strength occurs after a number of injections. I was hopeful that I would never experience it since I had responded so well to the treatment. But again, I was not so lucky.

For most of my life, I felt like I was constantly at war with my body that was so doomed. And lately, as I lay awake in the wee hours of the morning, waiting for sleep to come, I can’t help but let my fear take over if this turns out to be the next step in my disease progression.

And if so, I know I’ll get through it in time. Because I’ve been through worse.

Gazette columnist Joanna Buoniconti is a freelance writer and editorial intern at INCLUDAS Publishing. She can be reached at columnist@gazettenet.com.



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