What's it Like to Have Ataxia?
If you are looking for information on ataxia, you've probably already come across plenty of information which reads like gobbledygook. Either it is full of medical-technical jargon, or it is written by people who think ataxia patients can't handle the truth. At our website, you are going to get the truth.
Like its more famous cousin ALS (Lou Gehrig's disease), ataxia is a disease that robs you of life a little at a time, leaving your mind fully intact to watch the disaster your body is becoming. Luckily, one of the portions of the brain that is left untouched by ataxia is the important "sense of humor" center!
We don't want to sugarcoat the truth. Ataxia is not a lot of fun.
For most people with ataxia, the first symptom is that they walk funny, using the wide-based stance that drunks unconsciously adopt in order not to fall over.
For people who use their bodies to earn a living (and think about it -- who doesn't?) this lack of balance is the worst symptom because it robs you of the ability to walk. First you buy a cane or walker to "help you out," but eventually you may end up with a wheelchair or scooter. Those long, romantic walks on the beach (or golf course) will probably not seem worth it anymore, and jobs liking climbing utility poles or walking circus high-wires are probably not your best bet.
We certainly don't claim that ataxia is the worst disease anyone could ever get. There is no way to properly measure such a thing. Nevertheless, a few of the facts about ataxia make it uniquely unpleasant:
* As of today, it is incurable and there is really not much in the way of
treatment
* Because it is a hereditary disease, your kids may be at risk, too
* While there's no reason to assume the worst, ataxia is capable
of ending a person's life
THE UPSIDE
The upside is that we are here! We are alive and kicking, and happily combating the ups and downs of ataxia with good cheer and comradeship.
We rely on each other for moral support.
We laugh and we talk and we eat (boy, we love to eat).
Maybe most important of all, we get it. If you have ataxia, you know what we mean. We understand how frustrating it was to not have a diagnosis for so long. We know what it was like to be mis-diagnosed. We know how exasperating it is to spend a fortune on "adaptive equipment" when you wanted to spend it on a good set of golf clubs or new kitchen cabinets.
We are spouses, parents and friends, too, who know the helpless feeling of watching our loved ones change before our eyes.
If you are in the area and are an ataxia patient, or the parent, spouse, sibling, significant other, or friend of a person with ataxia, we invite you to stop by and join us.