One of the biggest obstacles in raising funds and awareness for Ataxia is the fact that the number of people afflicted with the disease is minuscule compared with say, cancer or diabetes. Similarly, drug makers would rather direct their attention to researching cures for cardiovascular diseases than orphan ailments like SCA3. I recently came across an article in the Wall Street Journal that talked about one man's attempt in turning the tide on funding and finding the cure for ALS.
Speaking about spreading awareness of rare diseases, on an episode of House on TV a few weeks ago, a doctor confessed that she might have inherited Huntington's Disease from her mother. She refused to be genetically tested because "not knowing her fate encourages her to live life fuller." Although I do not agree with this character's reasoning, I do applaud her for wanting to live her life to the fullest despite her potential handicap.
On the home front, Richard is keeping up with exercising, eating right and taking various medicines and nutritional supplements prescribed and recommended to him. Lately, he has found a local physical therapist who has experience working with patients who has neurological ailments. In fact, the PT's father has MS so he is intimately familiar with this class of disease. Richard described his weekly 40-minute PT sessions as "brutally intense". Perhaps PT in this case means "physical terrorist"!
Through the MJD discussion group came news of a new nutritional supplement regime that has shown promise in improving ataxia symptoms. A few members on the MJD discussion group, including Richard, have volunteered to be the guinea pigs who will then keep tabs of their experiences and results of the supplement and report back to the group. Richard's initial efforts were hampered by the fact that we ordered the wrong type of Vitamin B. This has been corrected and he will start taking the correct Vitamin B and PhosChol starting next week. Also, we learned that in order to get the optimal results, the supplements cannot be taken in conjunction with any anti-depressants or any drug that affects the CNS (Central Nervous System). Wish us luck!
Subscribe to:
Post Comments (Atom)
4 comments:
hi Richard and Lily:
I am also a ataxian. (I post on ataxia.org's forum often) I am interested to know what kind of "exercise" Richard does everyday.
I am trying to start an exercise regiment, but not sure where to start. I used to life weight before the ataxia onset, and now since the onset, I am having trouble even going outside, not to mention going to the gym. So any advice would be helpful!
Thanks!
Wei
PS: You can leave comments on my blog page, or you can also email me @ turbowei at yahoo dot com.
Hi Richard and Lily,
How is Richard doing on the Vitamin B and PhosChol regime? I'm definately interested any results, good or bad.
Thanks,
Sara
Wei,
I responded directly in email.
- Richard
Sara,
You may want to tap into the "mjdfamily" yahoo group for feedback about Proschol from others as well.
As to my own progress, after weaning off of some prescribed central nervous medications as well as using the "proper" Vitamin B supplement, I've been on the Proschol for about a week.
The effects? Not dramatic. My wife notices a slightly improved energy level. I need to factor in time of day, did I exercise that day, etc. before I make any conclusions.
- Richard
Post a Comment