Hello, read your message. Sorry to hear about your mum. Sounds like she has gone through a lot. Have the Dr.'s done a Modified Barium Swollow to make sure when she eats/drinks that it doesn't go to the lungs? She could get pnumonia. Have you heard of Paraneoplastic Syndrome? There is some good information on that at International Paraneoplastic Association. They also give differential diagnosis that might be helpful. I have had to do a lot of reading on that. Did the Dr.'s say why your mums Cerebellum has Atrophy/Degeneration? Good Luck hopes this helps you and your mum. Lisa
Hi...I read your note...I am so sorry about your mom., I am just beginning my journey with this condition. I have been recently diagnosed w/cerebellar atrophy. I have seen my own MRI; I have no cells located in the cerebellum. I can't write; type and coordination is a problem; will it progress?
I work; am 58 yrs. old. - female...reading about your mom makes me think I am in her shoes! How unimaginnative. I wish there was something I could do. anne.
Consider yourself lucky!
My symptoms started when I was 37.
Now I am 55 and struggling every moment.
There is no cure for ataxia in the West.
Have you considered the option of Piracetam. I don't say this will have dramatic effects, this particular research article suggests it may be helpful.
"The effect of piracetam on ataxia: clinical observations in a group of autosomal dominant cerebellar ataxia patients." by Ince Gunal D et al, published in J Clin Pharm Ther. 2008 Apr;33(2):175-8
I am so sorry about your mother. My heart is just broken for you, you all are dealing with something very frustrating and life changing (you have already seen that).
I was diagnosed with cerebellar ataxia 4 months ago. I have been having real bad dizzy spells, but the migraines sent me to the doctor.
Since I have been diagnosed, I have gotten tremors when I walk, I have to use a walker. This is getting harder with the tremors, so my doctor is trying to get me a chair through medicare. What scares me though is the choking you mentioned. I have been choking a lot lately and don't know why. You know how you do sometimes when you just kinds inhale wrong? It happens several times a day, especially when I am eating. I have a hard time getting food into my stomach, since it seems to get stuck in my throat. I usually end up getting sick and then I just eat soup.
The reason I am telling you all of this is that I am so frustrated. I can't seem to get a doctor (I have seen 4 now) who will tell me what to look for. These things are happening and I am scared,I am only 38 years old.
I understand!!!! I'm 39 and not drinking etc,,,,, I;m getting stronger but still talk misunderstood....I'm VERY independent and a former marine and a cop!!! Now live w/mt 65 year old mother...Going crazy!! RBG ***@**** me anytime!!!!
I am sorry for everyone here that has been diagnosed with this Ataxia condition. My wife has been diagnosed on her mid 30. The progress is pretty much deteriorated year by year. Tremor and choking while eating or drinking are the common for such condition. She has been seeing the neurologist and working with few different type of medications that help with tremors, but that only help slow down the progress. Choking is something that you can't take medication. I don't mean to scare everyone. I just want to share my experience being with my wife to the end. At some point, the tremors will get pretty bad and the ability to eat will reduce greatly and will start to loose weight. I highly recommend you consider getting G-Tube to help get protein you need in your body to fight off the weigh lost. Unfortunately, as other had mentioned. There is no cure. Enjoy your life and best wishes.