Tell Your Story

Joan: This was My Bill

This was something I wrote while my husband was still at home. It was therapeutic for me to express what was going on in my life. Thank you.

Bill’s Story

I have thought long and hard about documenting the part of my life living with someone who is ‘physically challenged’ and the difficulties that encompass everything we do. Where we can and cannot go with ease, how accessible will the destination be and the additional time required to get there and home. Everything has to be carefully thought out in advance.

His Ataxia began about 10 years ago with his difficulty to maintain his balance while walking. It’s a little like “woops”…I didn’t know I was going to fall down, and here I am on the floor. At first the subtle signs of weaving around and slurred speech gave the impression that he was drinking at any time of the day or evening. This was quickly dispelled when he was finally diagnosed and able to tell people he no longer drinks; there is still the occasional beer or glass of champagne, but that’s where it ends. I encouraged him to carry a cane so that people would visually understand that his problem was physical and not from anything else. I cannot tell you how many times I’ve explained to people that Bill doesn’t drink at 9 in the morning, or even at 6 at night…it’s a ‘condition’. The usual comment is: “Oh, I’m so sorry”. Well, so am I!

There is a really such fine line between letting Bill maintain as much of his dignity and his ability to function in so many areas. Now, after several years of watching him struggle in so many areas that we just take for granted I just voluntarily cut up his food without asking, open and put out the pills he takes for cholesterol and muscle spasms, help him dress and button his shirts, tuck in his clothes, wash and dry his glasses, pick up anything that is dropped, make sure the shower mats are secure and sundry other little unnoticeable duties. Safety is the #1 issue here. We’ve got Handicapped Bars all over the place. There is a walker upstairs, a walker down stairs, a third walker in the car. Towels everywhere within reach in case the coughing starts which is often followed by repeated sneezing attacks.

I want my old Bill back. I want to be able to walk down the street holding hands, and enjoy the beauty of our earth. I want to dance.

But, we don’t always get what we want. Sometimes we are challenged.

Joan 3/2011
Note: after a 9 month stay in a nursing home, Bill passed away in 2014. His struggles ended.

Debbie: Ataxia and Me

I was diagnosed in 2017 after talking to a co-worker and out of nowhere I just fell back like a tree. My doctor referred me to a neurologist who after an MRI diagnosed me with Cerabellar Ataxia. After getting referred to a new neurologist who did a DNA test found that my ataxia was part of a defective gene for Biotin or Biotindase and a defective gene in the Mitochrondial family. I am currently doing a Biotin supplement and 300 units of COQ10. I go to physical therapy twice a week but since 2017 it is getting progressively worse. I use a cane and when necessary, a wheeled walker. Since this type of ataxia (1 in 120,000) it probably isn’t being investigated enough in the medical community as the numbers to give it importance so I feel left out but I keep plugging away as I can still work part time and my friends and co-workers are supportive. I will be 74 on Halloween and look forward to what comes next in my life.

Richard: Why I support NAF

I specifically donate to NAF because in attending meetings in the past, I saw members who experience much greater difficulties than myself, and I feel it is my responsibility as a member of the Ataxia community to help.

I also believe that I have a responsibility to help the human community. I do have a selfish reason that I contribute concerning my sons. My understanding of genetics is that both of my sons are at risk of inheriting my gene for Ataxia. In my lifetime there have been many advances in the understanding of Ataxia, and I wish this to continue, as it will benefit all those affected by Ataxia and future generations that could be affected. From someone who has Ataxia, thank you to all those people that help us.