My name is Sanitheya (34 yrs) and my father just recently passed away 8/25/17 with the disease called cerebellar ataxia. He was 74 years old. He began seeing symptoms in his 40’s. He would bump into walls and stumble. He decided to get a cane and then moved on to being wheelchair bound. Eventually, he became bedridden. I personally think my dad could have lived longer but I felt he gave up a lot of times. The disease is a hereditary disease that was passed from his father. Including my dad, there are a total of 4 siblings. The disease skipped his oldest brother and caught the other 2 boys and 1 sister.
I’ve joined the Support group because I am trying to learn as much as I can about this disease that is haunting our family. I initially did a book report back in the mid 90’s when it was only called Ataxia or Frederica Ataxia. Since then, I’ve read there are several strains of the disease and more information than I can comprehend on the National Ataxia website.
If there are any studies, books, research, etc that has useful information, please let me know. While I know there is no cure, I want to be knowledgeable as much as
I can to help my aunt/uncle and anyone else in the family it affects. If you have any questions for me, please don’t hesitate to ask.
Hi Sanitheya, welcome🙂
The best reliable information can be found on www.ataxia.org This gives a basic understanding of the condition, once that’s fully understood, then you can move on to searching the Internet to compare the information that’s out there.
Simply googling ‘ataxia’ can lead to a lot of frustration. The National Ataxia Foundation explains the condition in an easy to understand format. As well as Genetic types, there are Idiopathic and Acquired.
Initially, there was only one support group ‘Friedreichs Ataxia’. As you say, research has since found numerous types of ataxia which are collectively known as SCAs (Spinocerebellar Ataxia), and usually given a number to differentiate the specific type. Currently, well over 60 types have been discovered, but testing is not yet possible for all of them🙂 xB
Hello Sanitheya, Just to say sorry to hear of the recent loss of your Father and glad you have found this group.
I was diagnosed in my late 50’s and am nearly 77 years old. I keep as active as possible although unable to stand without support.
I think keeping active in mind and body, healthy diet and exercise is the best one can do.
Good luck with your research, Patsy
I have SCA 6. I am 65 years old and I was diagnosed when I was 50. I inherited the disordered from my Dad. He died at the age of 67 but not from ataxia. My older sister inherited the disorder approximately the same age as I. She is 2 years older than me. My brother inherited the disorder who is 2 years younger than I. SCA skipped my younger sister who was born in 1956. Patsy and others gave some good advice and info relating to ataxia so I won’t repeat that reply. I will add they number ataxia in the order that they were discovered. Therefore I have SCA #6 which was the 6th to be discovered. SCA6 was discovered in 1992. My Dad died in 1995. He didn’t know he had ataxia.
I have unknown SCA haven’t won the megabucks yet so can’t afford the genetic testing that isn’t covered by medicare anymore. I am 56 started having problems with my walking when I was 40. I do know the name of my Ataxia it’s called 24/7 365/yr lol.
What I really wanted to ask is if anyone on here has tried the new drug that has just been approved for ALS? My friend Lori and I are taking it she has been taking it for seven months. When she say her doctor he said she was walking better. I recently saw my neurologist and he prescribed it for me it’s called RILUZOLE. So far so good I can feel my feet and legs don’t feel like led. Donna lol
My aunt and another brother has the disease as well. Even though her and my dad (siblings) were only 4 years apart, I have learned that it is much slower progression in women than in men. I agree that keeping as active as one can, even if it’s stretching the arms or doing mouth muscles can help in the long run. Thank you for sharing.
James, thank you for sharing. My grandfather (who had the disease as well) had 4 kids. The disease skipped the oldest and caught the last 3.
Unfortunately, I don’t know what specific disease my dad has except cerebellar ataxia. We saw symptoms of balance issues in my dad in his 40’s. We all thought he was drunk. He got tested in the 90’s. I don’t know if has been retested since then to get the specifics. Since his passing, I’m hoping the doctor would be able to provide me his neurological report.
This gives a basic understanding of the condition, once that’s fully understood, then you can move on to searching the Internet to compare the information that’s out there.