Cerebellum Atrophy

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

Hi @oldsuzanne55 How was the virtual appointement? Toni

Hi Ellen @helenfrances for online you need to have access to internet. The computer, Notebooks, Tablets, Ipads, and Cell phones are the devices used to access the internet to get your information. Do yourself a favor and use the Ipad, I feel it is much easier than other devices to manuever. After all it is simple enough for my 90 year old mother to use. I have one as well. It provides for easier visibility with its big screen. Let me know if you have any questions. I help my mother remotely. We video chat daily. Toni

I do not like it either👎🏼
Everything is on line.
Just learned that our chorus is going to be on line!
Talk about social distancing🧐
Many in our large chorus are not techies, do not even have a computer 👨🏼‍💻
Perhaps some good will come of this?
I am trying to think what that is. Any ideas?

@oldsuzanne55, I completely agree with @avmcbellar. If an in-person meeting is required, you and your doctor can determine that during the appointment tomorrow. Nice that your son is coming over to help set things up. At least you won't have to fret about technology.

To help you prepare for a virtual appointment, you might appreciate the tips that fellow Connect members share in this discussion:
– Telemedicine: How to make the most of a virtual doctor visit https://connect.mayoclinic.org/discussion/covid-19-telemedicine-its-a-brave-new-world/

Let us know how it goes.

Hi @oldsuzanne55, this is unfortunate but get used to the new norm of today. I am sure the doctor will ask you questions to ascertain whether an in person meeting is required. It will spare you the unnecessary risks of contracting the covid virus and perhaps new or exacerbated health issues. I believe, in the long run, it benefits you. I agree. It does make for longer waits and is inconvenient but it is also a precaution for a safer outcome. Hang in there! Toni.

Just found out that our appointment will be a”virtual” appointment with the Dr. at 3 tomorrow . Hate this. Have not seen him since last October,due to COVID.our son is coming over to help set it up.