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.

Liked by fastfay

@howardjames I am sorry to hear of your husband’s rare diagnosis. Rare disorders are difficult to face and deal with. I hope that you are able to obtain the information and knowledge about this disorder and find some others who are also walking the path that you are. Best wishes and prayers go with you!

REPLY
@pec2884

@howardjames I have been diagnosed with Multiple System Atrophy which is a degenerative fatal disease with a prognosis of 5 – 9 years. It involves cerebral atrophy. which in turn is due to a protein alpha-syn which has altered its normal state and now formed deposits of non-soluble aggregates which destroy the neurons.Sounds similar to your diagnosis. No cure as yet. Very difficult to come to terms with.
pec2884

Jump to this post

I am so sorry to hear of your rare diagnosis.  Which I could give you a hug.

REPLY
@pec2884

@howardjames I have been diagnosed with Multiple System Atrophy which is a degenerative fatal disease with a prognosis of 5 – 9 years. It involves cerebral atrophy. which in turn is due to a protein alpha-syn which has altered its normal state and now formed deposits of non-soluble aggregates which destroy the neurons.Sounds similar to your diagnosis. No cure as yet. Very difficult to come to terms with.
pec2884

Jump to this post

Thank you so very much for your empathy!!!

REPLY
@hopeful33250

@howardjames I am sorry to hear of your husband’s rare diagnosis. Rare disorders are difficult to face and deal with. I hope that you are able to obtain the information and knowledge about this disorder and find some others who are also walking the path that you are. Best wishes and prayers go with you!

Jump to this post

Thank you for your concern and prayers. They are very much appreciated. I hope that someone that has same diagnosis will see the post and share information.

REPLY
@pec2884

@howardjames I have been diagnosed with Multiple System Atrophy which is a degenerative fatal disease with a prognosis of 5 – 9 years. It involves cerebral atrophy. which in turn is due to a protein alpha-syn which has altered its normal state and now formed deposits of non-soluble aggregates which destroy the neurons.Sounds similar to your diagnosis. No cure as yet. Very difficult to come to terms with.
pec2884

Jump to this post

So sorry about your diagnosis. Wondering if you were diagnosed at Mayo Clinic. Also is the cerebral atrophy affecting your balance? Howard is losing his balance and is walking with a cane. Sometimes has to use the walker (especially in evening). He will eventually be in a wheelchair and Mayo doctor says he will begin to have trouble swallowing and could aspirate into a lung. Just wondering if you are younger than he. He is 77 and is grateful this did not occur when he was younger and holding a job. Please keep us posted. This is a wonderful site!

REPLY
@pec2884

@howardjames I have been diagnosed with Multiple System Atrophy which is a degenerative fatal disease with a prognosis of 5 – 9 years. It involves cerebral atrophy. which in turn is due to a protein alpha-syn which has altered its normal state and now formed deposits of non-soluble aggregates which destroy the neurons.Sounds similar to your diagnosis. No cure as yet. Very difficult to come to terms with.
pec2884

Jump to this post

@howardjames. No I live in South Africa and would love contact with fellow MSA suffers. Yes my balance is affected by the Cerebral Atrophy. I am still in the early stages and only walk with a stick when taking the dogs for a walk. I was diagnosed in March this year with symptoms appearing in 2013. I am 73 yrs old and still athletic, I have been warned about trouble with swallowing, speech and loss of involuntary muscle control. I am due for another visit to my neurologist tomorrow and have many questions for him.

Thank you for your reply. Will keep in touch

pec2884

REPLY

It has been awhile since I posted to this site. My husband was diagnosed with cerebellum brain atrophy in January. of 2015 at Mayo Clinic in Rochester, Minnesota. The movement specialist there gave him 3 to 4 years to live. He is now walking with a cane but will soon progress to a walker and then wheelchair and would probably die of pneumonia. I have not heard from anyone with this diagnosis. He is clear of mind but his speech is getting very hard to understand. This is very hard for him as he was very physically fit and healthy. Is there any one who has the same diagnosis or is this very rare? Should he go somewhere else for diagnosis or is there anything to slow this down? Thank you for any responses.

REPLY

Welcome back @howardjames. I moved your latest message to the forum/discussion that your originally started about cerebellum brain atrophy. That way everyone participating in this forum will receive an email notice that a new message was posted, and the forum moves to the top of the list of discussions in the Brain & Nervous System group. This will attract addition members to join the conversation.

Dmkmom04 and Liz who have posted here, also have conditions that include cerebellum atrophy. You are not alone in seeking answers, although it must feel that way. I wish I had an answer of where to go or how to slow it down.

@pec2884 and @dmkmom04, we look forward to hearing from you again. Any updates?

REPLY
@howardjames

It has been awhile since I posted to this site. My husband was diagnosed with cerebellum brain atrophy in January. of 2015 at Mayo Clinic in Rochester, Minnesota. The movement specialist there gave him 3 to 4 years to live. He is now walking with a cane but will soon progress to a walker and then wheelchair and would probably die of pneumonia. I have not heard from anyone with this diagnosis. He is clear of mind but his speech is getting very hard to understand. This is very hard for him as he was very physically fit and healthy. Is there any one who has the same diagnosis or is this very rare? Should he go somewhere else for diagnosis or is there anything to slow this down? Thank you for any responses.

Jump to this post

Glad you are back. I would like to keep in touch. The news is such a shock in one’s life. Almost incomprehensible to outsiders. I am at a far earlier stage and fighting back with Pilates and Bio kinetics.

REPLY
@howardjames

It has been awhile since I posted to this site. My husband was diagnosed with cerebellum brain atrophy in January. of 2015 at Mayo Clinic in Rochester, Minnesota. The movement specialist there gave him 3 to 4 years to live. He is now walking with a cane but will soon progress to a walker and then wheelchair and would probably die of pneumonia. I have not heard from anyone with this diagnosis. He is clear of mind but his speech is getting very hard to understand. This is very hard for him as he was very physically fit and healthy. Is there any one who has the same diagnosis or is this very rare? Should he go somewhere else for diagnosis or is there anything to slow this down? Thank you for any responses.

Jump to this post

@howardjames Hi Noreen: I just noticed your post of a couple of days ago. You mentioned your husband’s speech problem was making it difficult to understand him. Have you talked to anyone regarding seeing a speech therapist? I have a Parkinson’s type disorder and I also have a paralyzed vocal cord for which I have had surgery. I now see a speech therapist for several sessions each year. I also use an EMST 150, it helps strengthen the expiratory muscles. When I use it on a regular basis I have less choking, coughing and better speech. I’m doing this to try to avoid pneumonia as well. In looking over your posts I’m not sure if you live near Mayo, however, you might consider the possibility of speech therapy. I’m sure your life would be richer if you could keep communication going for as long as possible. Once again my best wishes and prayers go with you both. Teresa

REPLY
@howardjames

It has been awhile since I posted to this site. My husband was diagnosed with cerebellum brain atrophy in January. of 2015 at Mayo Clinic in Rochester, Minnesota. The movement specialist there gave him 3 to 4 years to live. He is now walking with a cane but will soon progress to a walker and then wheelchair and would probably die of pneumonia. I have not heard from anyone with this diagnosis. He is clear of mind but his speech is getting very hard to understand. This is very hard for him as he was very physically fit and healthy. Is there any one who has the same diagnosis or is this very rare? Should he go somewhere else for diagnosis or is there anything to slow this down? Thank you for any responses.

Jump to this post

My husband has Parkinsons’ and Demetia and it is very difficult to hear him speak. He was also having problems with aspiration pneumonia – several times per year. The docs at Mayo in Arizona injected Botox into is esphagus . It has not helped with the speech but he hasn’t had aspiration pneumonia since they did it plus he can eat and swallow much better.

The Redhead

REPLY
@howardjames

It has been awhile since I posted to this site. My husband was diagnosed with cerebellum brain atrophy in January. of 2015 at Mayo Clinic in Rochester, Minnesota. The movement specialist there gave him 3 to 4 years to live. He is now walking with a cane but will soon progress to a walker and then wheelchair and would probably die of pneumonia. I have not heard from anyone with this diagnosis. He is clear of mind but his speech is getting very hard to understand. This is very hard for him as he was very physically fit and healthy. Is there any one who has the same diagnosis or is this very rare? Should he go somewhere else for diagnosis or is there anything to slow this down? Thank you for any responses.

Jump to this post

Hi @tntredhead, you mention that your husband has Parkinson’s and dementia. I’d like to invite you to join our Connect group talking about Parkinson’s here: http://mayocl.in/2abXKUs

You may also wish to join the Caregivers group https://connect.mayoclinic.org/group/caregivers/, in particular this discussion Caregiving for dementia sufferers: http://mayocl.in/2ccA0jO

Welcome.

REPLY

Dear Colleen,
This is concerning HowardJames and his diagnosis from Mayo Clinic in Rochester,Mn and his diagnosis of Cerebellum Brian Atrophy with only 3 to 4 years to live. This took place in Feb. of 2015. I have left messages here but I get no response of anyone having this problem. He is now walking with a cane so it is progressing. He will move on to a walker and then be in a wheelchair. This affects his balance and speech. He doesn’t feel dizzy but he will loose his balance and fall. He is very hard to understand.
Is there any one out there who has this diagnosis or is it very rare?
His wife, Noreen

Liked by menville

REPLY
@howardjames

Dear Colleen,
This is concerning HowardJames and his diagnosis from Mayo Clinic in Rochester,Mn and his diagnosis of Cerebellum Brian Atrophy with only 3 to 4 years to live. This took place in Feb. of 2015. I have left messages here but I get no response of anyone having this problem. He is now walking with a cane so it is progressing. He will move on to a walker and then be in a wheelchair. This affects his balance and speech. He doesn’t feel dizzy but he will loose his balance and fall. He is very hard to understand.
Is there any one out there who has this diagnosis or is it very rare?
His wife, Noreen

Jump to this post

Hi Noreen,
Cerebral atrophy is a very rare condition, which is why I’m so grateful that you were able to connect with @dmkmom04 and @pec2884 here on Connect. @dmkmom04 has mild cerebral atrophy and @pec2884 has Multiple System Atrophy which involves cerebral atrophy.

Noreen, what questions would you like to ask them?

REPLY
@howardjames

Dear Colleen,
This is concerning HowardJames and his diagnosis from Mayo Clinic in Rochester,Mn and his diagnosis of Cerebellum Brian Atrophy with only 3 to 4 years to live. This took place in Feb. of 2015. I have left messages here but I get no response of anyone having this problem. He is now walking with a cane so it is progressing. He will move on to a walker and then be in a wheelchair. This affects his balance and speech. He doesn’t feel dizzy but he will loose his balance and fall. He is very hard to understand.
Is there any one out there who has this diagnosis or is it very rare?
His wife, Noreen

Jump to this post

I haven’t contacted dmkmom04, but did contact the lady in South Africa. She sounded as though her diagnosis was similar to my husbands. My husband is grateful that he is 78 and not younger with a job and kids in college.
Thank you for this method of taking to other people with same diagnosis. I give my husband many vitamins as I know after he is deceased they will discover that brain atrophy was caused by a lack of some wierd vitamin.
Noreen

REPLY
Please login or register to post a reply.