Today, September 25, is International Ataxia Awareness Day. I am sharing a blurb that I wrote a while back and sent along with a presss release to some of th local press. I think it describes ataxia and my plight pretty well so thought I would share it with you via this blog. I hope some of you will see fit to share it to increase awareness of ataxia.
Hello, my name is Hazel Freeman. I am a 71 year old grandmother. I have lived in Silsbee since 2003. My husband, Paul, grew up here and. as he says, “graduated from Silsbee High
School in the dark ages. His parents were TC and Minta Freeman.
I expected to be one that climbed on the roof at age 90, I was so healthy for my age. Now, thanks to a neurological disorder called Ataxia, I can’t even walk across the room without help today.
I first noticed the effects of Ataxia 3 years ago, in 2011. I tripped easily and just kept going when I bent over. Corners were difficult. By January, 2012, it had gotten worse and I took some
bad falls. I then went to the doctor. I was diagnosed that summer after MRIs, blood tests, and seeing an ENT to rule out ear problems and other problems. I went from using a cane to walk to using a rollator(walker) that fall. Now it looks like a wheel chair is in my future.
. Paul says I am drunk all the time--even though I do Not drink alcohol. Ataxia affects the cerebellum which is the part of the brain affected by alcohol when someone drinks. It causes staggering gait, slurred speech, bladder incontinence, and peripheral neuropathy, among other things. One concern about Ataxia is that one can choke on water or one’s own spit. I understand that some times a thickener is added to water and other liquids to keep people with Ataxia from choking. So far, this hasn’t been a problem for me.
Also, until recently, my speech wasn’t slurred too bad except when I was tired. It is getting harder and harder to talk, and, especially, to be understood . Probably, the thing that frustrates me
most is not being able to write or print. Apparently, this is common to Ataxia. I like to take notes and make lists--now I can’t do either.
Depression is usual among people who have Ataxia. As my small motor skills have been affected and the disorder progresses, I have been somewhat depressed over not being able to do things I have always done. For instance, I love to cook and recently, we decided that Paul needed to do most of the cooking for us. It’s fortunate that he can.
It is also fortunate for me that he is such a patient caregiver and cares so much, There is no cure or treatment for Ataxia. It is something to be endured, and therapy and life adjustments can
help you cope. Someone on the Living with Ataxia site recently described it as walking on a boat that is going over waves. It makes you tired just to do ordinary things because it requires extra
effort just to keep from falling over.
Ataxia, while it is a rare disease ,affecting 150,000 Americans, or less, is often a hereditary disease affecting young people and children. It can be caused by a stroke or head injury, or be a gluten reaction. Or, as in my case, the cause may be unknown.
Be aware of Ataxia, and remember some people are dealing with it day by day and minute by minute. Do what you can to help researchers find a cure or treatment for this condition!