Coping With Charcot-Marie-Tooth Disease

I was diagnosed with CMT when I was 42yr. and this was after I had open heart surgery. This disease has been very life altering for me as I can no longer work, and am now permanently disabled. I have worn leg braces for the past 9 years, and even now they do not seem to do what they used to do for me. They do allow me to walk, and I can drive, but long walks are very difficult. I take medications for this disease, prescribed by my neurologist, and they are neurontin=500mg,+5each day, and amytryptilen, 50mg. I am not sure if they are doing anything or not, as this disease has been very progressive with me, at this stage of my life. My toes have curled and my instep has dropped, in both feet, but my left side seems to be worse than the right. I have numbness in my fingers and my feet (cannot feel anything in my feet) and I must watch what I do as I can no longer tell the difference between cold and hot.

I am now 52, and still batteling this disease, as I call it the disease from hell. I was an active man for 40 yrs and now trying to be active is a chore. This disease is inherited and my mother has passed down the gene. My brother was diagnosed when he was 10, and he is now 46, and he works and has had the time to adjust and make his life a bit better as he got older. My mother had the disease and wore leg braces before her death 11 years ago at the age of 66. I have 2 sisters that have this disease and one is not that bad, but the older she gets, she is discovering that she is getting worse. She has remained active all of her life and still is active at 61. My other sister has this disease and she is bad. she uses a cane, (too stubborn to wear braces) and she has passed this on to her daughter (who is now 32 and getting worse) and she has passed this on to her daughter, who is now 11, and she has just begun to wear braces.

I find this disease painful, my feet feel like I am walking on golf balls, and they are swollen all the time, My hands are very sore, and having arthritis is even worse while having both afflictions at the same time. I have gained weight, as have my siblings, and from what I have read, my family seems to be not the norm for having pain, as we all have arthritis, and 3 have heart disease including me, and my mother too. Sometimes I wonder if it is worth getting up in the morning, but I do and try to make the best of each day. Trust me, after having this for 10 years, it is no picnic, and each day feels like a chore.
Thank you for letting me speak my mind
Sincerely
Danny