I’m not sure what is this disease is. It is remarkably similar to cerebral palsy. However, is caused by the brain injury before or at birth and is non progress.
Multiple schlerosis is another possibility but I don’t fit the profile for that. And I’ve been checked for lesions in my brain. That’s not possible.
Mad cow disease, the human variant, is only contracted if the human eats brain or nervous issue from an infected cow. I was in Europe at the time and that puts me at risk. Although I ate steaks while I was in Germany, it is impossible to contract the disease by eating the flesh. This also is not possible.
I am not even 50 years old. By my calculations I have between 30 and 40 years left on this earth. My sanity and quality of life depended on my being able to cope with this disease.
I am learning how to drive myself around town carrying my wheelchair on the back of my car. The biggest challenge was for me to realize that I need to use a wheelchair when I don’t need it so that they can extend my efficacy during the day. If I only way to use a wheelchair when I need to use it I lose the ability to do anything.
I have just purchased a new coffee pot because the other one was causing me pain when I was trying to serve from the carafe. The new coffee bar, made by Ninja, causes me considerably less pain and grants me a greater degree of independence. I can brew specialty coffees as well as normal coffee. All with greater amounts of liberty.
I am working on a voice recognition system for the house. I have found that linux as a software package called Simon that has a centralized voice server. The difference between Simon and other software packages that enable voice recognition is that it has one server centralizing the voice profiles for all the clients (all the computers) in my house.
My idea is to have microphones on small Raspberry Pi computers throughout the house which listen to my voice and can control things. I have time to develop this project as I feel the disease and the debilitation progress, but at a slower rate. With so long to live with the potentially progressive neurological disorder, it behooves me to develop a system that will augment my personal and biological abilities. Hopefully to achieve a level of independence rivaling that of average abilities.
Another advantage of Simon is that there are packages that I can employ that will hopefully let me program by voice. I enjoy writing, but I enjoy writing programs more.
I have come to realize that I have defined who I am by what I do. With my physical limitations, the “what I do” part is getting less. I have to work and find out who I am and redefine that person. I haven’t a clue about how to accomplish that.