Cerebellum Brain Atrophy

Posted by howardjames @howardjames, Jun 5, 2016

My husband has been diagnosed with cerebral atrophy. Is there anyone with similar diagnosis? In January of 1915 he was given 3 to 4 years to live.

@colleenyoung

@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.

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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.

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@oldsuzanne55

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.

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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

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@oldsuzanne55

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.

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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.

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@avmcbellar

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

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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.

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@artist01

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.

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

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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.

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@alexgoldman2

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

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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?

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@colleenyoung

Welcome to Connect @howardjames. Does your husband have Alzheimer’s disease?

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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

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@oldsuzanne55

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.

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Hi @oldsuzanne55 The Keto diet is not an easy diet to follow especially for me because I do not like fatty foods or meats. My husband and I tried it for several months. My husband loved it. Eating almond flour, cream cheese, and sour cream was not easy but I did it. The desserts and bread did not have the same taste as I expected. For one thing, after getting off the diet, I learned to alter Keto recipes to make my own low carb bread with the regular flour. I use the same dough to make pizza which we enjoy every week. We never buy any bread. I make it in different forms like hamburger or hot dog rolls for sandwiches.
Glad your husband does not consume any alcohol. I stopped that too and caffeine so no regular coffee for me. I drink decaffeinated coffee and tea.
Has he had a fasting blood glucose test? I would advise seeing his regular doctor to see if a low carb diet is right for him. Toni

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Dizziiness is Problem as is mobility; I miss going for walks, now walking from room to room is a victory, with a cane, of course. Alex

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Hi @alexgoldman2 I agree walks are a challenge with imbalance. I have the same issues and use a quad cane mainly for outdoors around the house. It is a tremendous help with walking in the driveway and lawn. I am looking forward to setting up a small garden this year. Have you thought about a transport chair? I have purchased one on amazon. It is different from a wheel chair. I use it for long distances with my husband. He pushes the chair but we can go longer distances like to fairs or trails together. It is easier for him because the chair presents a less chance of me falling. He likes it. We haven’t used it at all during the pandemic. Last year the air show was cancelled as a result but we plan to use it more for future events. Wish you well. Remember where there is a will, there is a way. Toni

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I don't know what a quad cane is or a transport chair I use a wheeled walker. What are those devices? Dizziness is the newest visiter .

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