Neuropathy Treatment and Leg Braces for Daniel

I have been diagnosed with a genetic neuropathic disease which causes progressive muscle loss, atrophy, and bone deformation in the hands and feet. It’s called Hereditary Motor Sensory Neuropathy (also known as Charcot Marie Tooth Disease). I inherited from my father, who passed away in 2010. The disease begins in the extremities, and works it’s way in towards the center of the body. It was manageable for a few years after Kaiser Permanente found it in my DNA in 2005, but now it has sped up and is progressing rapidly. My feet are badly deformed. My leg muscles have deteriorated, I’m tripping and falling onto hard surfaces (cement, hardwood floors etc) more often. The muscle weakness in the legs prevent you from catching yourself before you hit the ground (a condition known as “drop foot.”)




I have a pair of leg braces, but I need some heavier duty ones. One company in Las Vegas makes incredible braces for this specific disease but they are many thousands of dollars. A Canadian company makes braces that are only a few hundred dollars—they prevent the tripping, which would be good enough for now, depending on the level of funding I can secure. Many of the treatments for muscle atrophy seem to be taking place in Europe and outside the U.S., but this will not be an inexpensive trip once I decide the best options (and once the pandemic dies down and travel restrictions loosen.) 




Unfortunately, due to the recent progression of the disease, I am no longer able to play guitar, bass, or piano in any way near the way I could in the recent past, since I began taking lessons 25 years ago. Playing my instruments are the main activities which have sustained my mental and spiritual health for the bulk of my life. My hands have become steadily weaker and are slowly crimping up, which, I know, by watching my father’s progression, will continue until my fingers are fully curled in and I am unable to straighten my them. I can no longer mountain bike, which was also my favorite thing to do, in terms of exercise and the peace of mind that comes with being out in nature and getting ones endorphins going.




I have adapted to both of these realities, playing music in a much more simple way, with less dexterity and control, and for less time, as my hands fatigue quickly, and riding my bike on flatter surfaces in order to stay safe. But I fear as this disease progresses even these more limited ways of staying active in these pursuits will become more and more limited until they simply can no longer be performed. It is becoming difficult to do simple tasks, such as opening jars, operating can openers, buttoning buttons, and even turning the ignition key in my car. I say this not to sound desperate or sentimental but to give a specificity to what is actually happening to my body. I am also suffering from a worsening of what is called proprioception problems, which is the lack of the brain’s ability to locates where one’s limbs in space. My nerve cells lack a protein called myelin, which enables the muscles to communicate with the brain. So what occurs is the brain has difficulty noticing where one’s limbs are in space, causing one to not be quite sure where the foot will hit the ground with each step forward. And if one closes ones eyes or tries to walk to the restroom in the dark in the middle of the night one can easily lose one’s balance and fall, since a normal brain can keep you upright without having to see with the eyes objects to orient oneself.  




It is very difficult and often embarrassing to ask for help. As any person knows, and as a man it is doubly difficult to admit loss of strength and physical deterioration and dependence on others. There are a number of treatments for muscle loss, but many are outside the general realm of American mainstream medicine, and virtually all are out of pocket and privately administered. Charcot Marie Tooth Disease is not funded as aggressively in terms of research as other diseases that are in the same category as it, such as Multiple Sclerosis and ALS (Lou Gehrig’s Disease.) Most of the time Charcot Marie Tooth does not progress as quickly as these diseases, so it is not as heavily funded. After attending a conference by the CHarcot Marie Tooth Association I learned that any considerable treatment for the disease in the U.S. is quite a few years, perhaps decades out. Which is partly why I am looking overseas.




I have made peace with this disease and accepted the limitations it has and will continue to put on me, but I would like to able to travel And continue my writing (I am working on a collection of essays about my experience). I am fortunate to have a European passport, as my mother was born in the EU. New leg braces and funding for muscle treatments would help me live more safely and have less anxiety about not injuring myself, as well remedy the practical difficulties I’m experiencing in day to day life. I know times are tight right now for many considering the partial shutdown of the economy with the coronavirus, but any help my friends, family, and loved ones can offer would be greatly appreciated. Thank you so much for reading and my best to all of you,

Daniel