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.

Boy what a dead spot for this issue! My cousin has cerebellar ataxia/atrophy. If you have any information that would be awesome!!

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@lupita1407

My wife at 53 years of age was diagnosed with cerebellar atrophy and has severe ataxia and vertical double vision. Cannot walk without a walker. I am wondering if anyone has read any articles about studies that have been done for treatment. I read one stating high doses of vitamin E and another about starting a gluten-free diet. We know there is no cure but am looking for anything to halt the progression or alleviate some of the ataxia

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My cousin has cerebellar ataxia. She is mostly bed-bound but we too use a high dose of Vit E & B and as close to gluten-free as we can. It does seem to help but she still has bad days. I have been doing a lot of research and this particular disease, as so many, could be the result of a vaccine injury. Here is the link that shows there may be a relationship. Something to consider perhaps. I know vaccines awareness is growing and perhaps for a legitimate reason. The ingredients are totally horrible (you can read them on the CDC web site) and Pharmacuetical companies have ZERO liabilty for the vaccines produced thanks to the National Childhood Vaccine Injury Act of 1986 of which takes liability away from the pharma cos. https://www.icandecide.org/wp-content/uploads/2019/09/VaccineSafety-Version-1.0-October-2-2017-1.pdf (pages 7-9 states ataxia and nueroligical diseases for the first time)

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@pookigirle

Boy what a dead spot for this issue! My cousin has cerebellar ataxia/atrophy. If you have any information that would be awesome!!

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Go To:-https://ataxia.org/neurologists-and-specialty-clinics/#AtaxiaClinics

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Hoping to connect with some of you who have talked about cerebellar atrophy and see how things are going lately.

@pookigirle – how is your cousin feeling recently?

@howardjames – when you posted over the summer, Noreen, you mentioned that Howard may be ready to go on to heaven. Wanted to get an update on him and on how you are doing?

@adrenaline – you'd talked about having an MRI and being diagnosed, but feeling in the dark about your cerebral atrophy. Have you learned more about what to expect, or do you have any questions that members here might help with?

@flo1957 – how are you? What has your testing shown about the status of the atrophy?

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I experience atrophy of the cerebellum. I am not sure this the appropriate forum for my issue!

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@lisalucier

Hoping to connect with some of you who have talked about cerebellar atrophy and see how things are going lately.

@pookigirle – how is your cousin feeling recently?

@howardjames – when you posted over the summer, Noreen, you mentioned that Howard may be ready to go on to heaven. Wanted to get an update on him and on how you are doing?

@adrenaline – you'd talked about having an MRI and being diagnosed, but feeling in the dark about your cerebral atrophy. Have you learned more about what to expect, or do you have any questions that members here might help with?

@flo1957 – how are you? What has your testing shown about the status of the atrophy?

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I was diagnosed about a year ago, MRI's, etc.. My balance is iffy, but am active, physically, mentally and spiritually.

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Hello- I am in Chicago. I will be 52 next month. About three weeks ago I thought I was having a stroke (right leg was tingling and wouldn't move as I wanted). That lasted for about 24 hours. Since then I have had a CT and MRI. MRI showed moderate cerebellar atrophy. I have started movement therapy (my idea is that I want to build new neuronal pathways for walking). We are waiting on the results of genetic testing. Now I feel like my arm hangs on by a thread and is blowing in the wind (smile). As the day goes on, my foot drags and I stumble. I have to do a lot of "talking in my head" to get things to move as they should. My leg and arm (right side) muscles ache is if they are always turned on. Saw a neurologist who referred me to a movement neurologist.

I want to read as much as I can about this disorder. Can anyone point me to things to read?

When we are not in isolation- I exercise about 4 times a week and am in pretty good shape. If I sound desperate..I am. I am desperate to learn all I can so I can slow this down. I used to jog and say the reason I work out and eat well is since I was nearly 40 when I had my son (who turned 13 last week_ I had to do those things so I wouldn't be in a walker when he graduates from college. Well now instead of college…my goal is high school (see I am a realistic person, smile)

In addition to readings, what dietary changes have people made in light of their dx.?

Thanks,
Antoinette

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@alexgoldman2

I was diagnosed about a year ago, MRI's, etc.. My balance is iffy, but am active, physically, mentally and spiritually.

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I was diagnosed with cerebellar atrophy about a year ago. I have problems with walking without a walker and have problems with nystagmus and double vision. I play music and I
am also finding that my reaction time and coordination is declining. I am interested in talking
to anyone with the same problems.

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@silverlinning

Hello- I am in Chicago. I will be 52 next month. About three weeks ago I thought I was having a stroke (right leg was tingling and wouldn't move as I wanted). That lasted for about 24 hours. Since then I have had a CT and MRI. MRI showed moderate cerebellar atrophy. I have started movement therapy (my idea is that I want to build new neuronal pathways for walking). We are waiting on the results of genetic testing. Now I feel like my arm hangs on by a thread and is blowing in the wind (smile). As the day goes on, my foot drags and I stumble. I have to do a lot of "talking in my head" to get things to move as they should. My leg and arm (right side) muscles ache is if they are always turned on. Saw a neurologist who referred me to a movement neurologist.

I want to read as much as I can about this disorder. Can anyone point me to things to read?

When we are not in isolation- I exercise about 4 times a week and am in pretty good shape. If I sound desperate..I am. I am desperate to learn all I can so I can slow this down. I used to jog and say the reason I work out and eat well is since I was nearly 40 when I had my son (who turned 13 last week_ I had to do those things so I wouldn't be in a walker when he graduates from college. Well now instead of college…my goal is high school (see I am a realistic person, smile)

In addition to readings, what dietary changes have people made in light of their dx.?

Thanks,
Antoinette

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You are a DETERMINED person! I have no knowledge about this atrophy except for your symptoms.
I am thinking that with your attitude you will greatly improve.

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@colleenyoung

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

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No

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@idfiddler

I was diagnosed with cerebellar atrophy about a year ago. I have problems with walking without a walker and have problems with nystagmus and double vision. I play music and I
am also finding that my reaction time and coordination is declining. I am interested in talking
to anyone with the same problems.

Jump to this post

My husband was diagnosed with cerebelar atrophy last year and Parkinson's. he has great difficulty walking, refuses a walker,and uses a ca. He has fallen and cannot get up without a lot of help. The neurologist says it is from prolonged use of alcohol. Because of covid , he has not been back to see dr. In a year. He takes 1 sinemet tab. 3 times a day, and it does help.

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@oldsuzanne55

My husband was diagnosed with cerebelar atrophy last year and Parkinson's. he has great difficulty walking, refuses a walker,and uses a ca. He has fallen and cannot get up without a lot of help. The neurologist says it is from prolonged use of alcohol. Because of covid , he has not been back to see dr. In a year. He takes 1 sinemet tab. 3 times a day, and it does help.

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Hi @oldsuzanne55, and welcome to Mayo Clinic Connect. I would like to introduce you to @hopeful33250 as I think she can relate to your situation. You may also be interested in following the Parkinson's Disease group https://connect.mayoclinic.org/group/parkinsons-disease/

Are you typically the person who helps your husband to get back up after a fall? Are you able to do this safely? Most medical practices are open again with safely protocols in place. Are you able to schedule an appointment soon?

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