Cerebellum Atrophy

Thank you for your help. I have been diagnosed with cerebellum atrophy fir several years; one neurologist after another. Oh well, no help there, nor doses PT help. Life is full of surprises, isn't it. Alex

Hi @alexgoldman2 sorry to hear there is no known treatment for your diagnosis. What are the symptoms you are experiencing and trying to resolve? In your previous posts you stated you have remained physically active. Great to hear. I think it is important for your rehabilitation. Have you noticed any improvement by being physically active?

He is already83, so we would take 3 to 4 years. It does not seem to be getting worse . Has probably had it at least 4 years.

Thx, for your advice. dr says PT will measure him for walker. He is tall 6’3 , so I think it will help

Thx, we will try the Keto diet, but he loves carbs so dont know how it will go. He no longer drinks alcohol. dr told him to stop. He does not seem to miss it. Has good days and bad days. Has to eat frequently , I think low blood sugar affects his walking.

I've learned to love my walker, after rejecting the idea at first. The main saving grace for using it is to save us from falling. Even indoors. I hope your husband will give it a try soon. It's mostly a matter of getting used to it and just accepting it as a helpful tool in our journey. I always tell myself, "It is what it is." Just grateful to be alive most days! Wishing you and your husband warmest wishes.

Hello, Have had cerebellum ataxia for years now. There is no known treatment or medication. i've seen neurologists galore; PT is the only recommendation and it has not helped. Living with the condition is the only solution. Alex

Just checked this site ,again,after a long time. Have had 2 appointments with a new doctor. One I wanted no longer takes new patients, I think he is head of department.. new one is a movement disorder specialist. We were told my husband does not Parkinson’s. He has cerebellum ataxia. Stopped the sinemet and it made no difference.Dr saw him twice, one month apart. Tapered him off the sinemet and he had not taken it for 2 weeks before the appointment. Exam was unchanged from 1st appontment. will start PT again and get a Walker for bad times. He is very reluctant to use one. Have noticed that he is much worse in am , needs to eat frequently, I think he is having hypoglycemic periods, his walking is terrible when this happens. Will try keto diet n and see if it helps.

Hi @oldsuzanne55 Sorry it was such a disappointment for you. I agree with the accents. I sometimes have trouble understanding. I don’t know if going in person would have made it any better. Do you think increasing the Sinemet will help. I don’t have a diagnosis of Parkinson Disease. It is a neurological disorder. I do have a neurological disorder and benefited from a Keto diet. The body learns to get its energy from the consumption of fat and NOT carbohydrates. Perhaps you can discuss this with your doctor if it can help your husband. This diet was developed back in the early 1900s to decrease the occurrence of seizures. It became very successful and popular until medications were developed. It was easier to “pop” a pill than to follow the diet. I know a friend you had complained of tremors. Someone else in the family had also gotten the tremors. My friend had gone on the diet to lose weight in preparation for his wedding. After losing 25lbs he had stopped the diet. Shortly after his tremors came back. He told me he was tremor free while on the Keto diet. It may be worth a shot to ask your physician. Hope you are doing well with the internet technology. Toni

Thx for following up with me. Appointment was very disappointing. My husband is very hard of hearing and the Dr. has an accent , so I had to keep repeating what he said to my husband. 15 minute appt. and all he asked him to do was to raise hands out in front of him to see if he had a tremor. Only his right thumb shook a little bit. He did not ask him to walk, which is his big problem. I asked for a referral to a movement disorder specialist, he said there was a 9 month wait for the dr. I asked him for. Told him that was ok, so we will see. He increased his sinemet to 4x a day from 3