Photo by Julian Wan on Unsplash
Probably the best advice I could give someone is for them to learn about Charcot-Marie-Tooth (CMT) and to learn about themselves. Know yourself! Two very important factors to be successful in caring for yourself.
There are many ways to treat Charcot-Marie-Tooth (CMT) but, only one way to treat you! What do I mean by that? Well, CMT is often different for everyone, even within the same family. My brother often said his pain was worse than mine how he knew that I don’t know. Why he ever thought that I don’t know. I never really shared the pain or problems that I have with CMT because I never really saw a need to do so.
Several of my family members had CMT. However, it was decided in my younger years that I have the most severe case in the family. Ok. That’s fine. I wasn’t sure what the point of that was nor how they really came to the conclusion that I was the most severe. As the years went by, I learned they were right as the doctors stood in front of me using terms like “most severe” and “more severe” when I was contemplating foot surgery for the second or third time. Hey, I gotta be good at something! Right?
As the years progressed from the early days, I had a few opportunities to learn more about the disease. A guy I knew was researching at the National Institutes of Health (NIH) which enabled me the opportunity to go too. I did some research about CMT. I gathered a notebook of information which I still have somewhere in my library. I learned a lot but I focused on the “learning” and didn’t allow myself to get too upset about what it said would happen to me. Today, we have the internet with a few websites like CMTA-USA and the Hereditary Neuropathy Foundation to name a few. A search will bring up others and a wealth of information you may be able to use.
My uncle decided to join some of the clinical trials for medications that could be used to treat Muscular Dystrophy and CMT. While I wasn’t privy to the information about the trials nor the results, it seemed to me that they didn’t benefit him that much. Now, I say that as an opinion and not a comment against clinical trials. I know clinical trials of all sorts must be done to find medications that work. However, I decided that it wasn’t for me. I wasn’t comfortable experimenting with my health and medications. But, that’s me! And, I am still that way.
In my 30’s I got married and we found us a primary care doctor. Before I met her, I hadn’t met any doctors who would really listen to what I had to say. This doctor not only listened to what I had to say, but shared some great ideas which ended up leading to me being healthier and the happiest I have ever been. From this doctor, I learned that there are holistic means and forms of physical therapy which can help before I would begin using medications.
For myself, the information I learned from that doctor has benefitted me for nearly twenty -five years. She opened a whole new world for me which I subsequently explored. Based on what I learned, when a “new” problem starts, I try to use a form of physical therapy first or find a vitamin supplement or herb to help. I wish I could say I have never used medications. However, I have had to take medication for nerve pain as it became too uncomfortable.
While I am not criticizing medications and doctors. They have their place. What I am saying is to understand the disease, which type you have, and the treatments available. Make the decisions best for you.