Growing up with a rare condition, I always relied on doctors and specialists to know how best to deal with my troubling body. Like most people, I left it to someone else to decide what I needed to do in order to feel better.
As I’ve gotten older, I’ve had some bad experiences with reactions to medication and surgeries that didn’t go quite as planned. It has become so clear to me that I know my own body better than most doctors. That’s not to say that I don’t sometimes need a doctor’s advice or recommendation, but rather that it’s ultimately up to me which medications I choose to take. It is something that not all disabled people get a right to. I have seen a lot of nonverbal people with disability not getting a choice in which medication they take.
At the end of 2016, I had an adverse reaction to Botox (onabotulinumtoxinA) that was injected into my calves to delay my need for tendon-releasing surgery on both feet. I was injected with quite a bit more than people typically get (usually for cosmetic reasons). When my neurologist was injecting it, my legs wouldn’t stop twitching. I think I even kicked him once or twice. My legs were sore when it was over, but it took at least a week before things started going haywire.
I woke up one day and I didn’t have the energy to do anything. My head was incredibly floppy and I had trouble keeping my eyes open for very long. I couldn’t be bothered to speak because it took energy I didn’t have, and it was coming out garbled anyway. Even my parents were having trouble understanding me.
The most dangerous problems came from my respiratory functions. I was constantly coughing and choking on my own saliva, to the point where I wasn’t able to breathe on my own for a while. Every single choking fit seriously felt like, “This is the end.” During the nights, I had multiple choking fits, which woke up my parents each time — they’d always rush into my room to help me. Somehow, I avoided being hospitalized during this ordeal — which lasted for three months, by the way.
It took me a few weeks to work out why my body was reacting like it was. Eventually, I figured out it was what is referred to as “distant effects by Botox.” I did some more research: Apparently, only about 2 percent of people who get Botox in larger muscles have this reaction.
Since my recovery, I tried a few other muscle relaxants that made me drowsy. I have listened to all the doctors and specialists about how best to treat my condition. I began taking natural supplements because I didn’t like the way medication made me feel, and I was sick of being put on medication after medication.
I have been on these supplements for over a year now and I feel the best I ever have in my life. I haven’t gotten sick at all since I’ve been on them. Most importantly, I’m happy. I haven’t lost my personality or my willpower, which wasn’t the case when on the other meds.
Imagine if I was nonverbal and couldn’t communicate how these medications were making me feel? Imagine if I didn’t even have the authority to decide which medications to take?
I have met doctors who prescribe this kind of medication to nonverbal people with a disability, telling them all it will help them. It does help, I know from firsthand experience, but it also makes you super relaxed to the point where you lose yourself in that not caring about anything at all.
To do that to anyone against their will is wrong, plain and simple. It’s like the 21st century equivalent of “overmedicate and sedate,” the way asylums in the early 20th century operated.
I don’t always rely on expert advice anymore. Some problems are just too big for me alone, and it’s always handy to have a second opinion on any problem. One of the most important things I’ve learned thus far is that in the end, no one knows your body better than you, and no one has the right to do anything other than suggest treatments.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.