Ataxia means loss of voluntary muscle control, resulting in lack of balance and coordination. Some people may have ataxia due to an inherited genetic disorder. Others may develop ataxia as a result of another disorder or condition, such as a tumor or stroke.
LivingWithAtaxia.org is an online support group for those living with hereditary or non-hereditary ataxia. The site features a forum, chat, photos, events listing, and blog posts from site members. If you want to know what living with ataxia is like, or want to find other people dealing with ataxia, this site is a great place to start.
And mark your calendar: September 25, 2009, is International Ataxia Awareness Day!
i’m glad that the book has the public awareness to read and learn about ataxia. Having ataxia myself, it seems like nobody has heard of this terrible degenerative neurological disease that robs people of everything (approx. 150,000 people in the US has it)-
loss of balance so i can’t walk without a walker or wheelchair
sometimes my legs don’t move when i want them to
falling and having broken ribs & a fractured tail bone
loss of fine motor skills so I can’t write anymore, so I use my computer for everything-it’s my window to the world
hand tremors
slurred & slower speech
double vision & hard time reading & focusing on an object like watching tv
hard time swallowing
there is more but I’ll stop here.
This is happening because the cerebellum is atropying away. So there is less & less connection between that part of the brain to the spinal cord which gives the signal for the rest of the body to respond.
One good thing is that it does not affect the front part of my brain so I will always have my cognitive thinking. To make sure that I keep what I have, I do sudoku puzzles, play alot of computer games, play the Wii sports and fitness games and I love my hobby of making cards for my family and friends using different techniques.
I’m still able to go grocery shopping and make dinner for my husband & me.
One thing I love to do is to go shopping at the malls for clothes for my grandchildren (6 of them) and myself. And to craft stores. I use my pedal wheelchair to get me around. I’ve accumulated alot of miles on that wheelchair!!
My whole church is praying that Gold will give me strength and protection to go about each day. Without their prayers, I don’t think I can survive.
PRAISE THE LORD!!!!
So PRAY, PRAY, PRAY
There is no cure unfortunately