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.

@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.

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@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

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@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.

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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

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@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.

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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.

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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

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@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

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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?

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@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

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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

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Hi @howardjames . I have just written a reply to you but in the wrong page. Maybe it will come up somewhere. Nice to be in touch again. I do take some vitamins as well. It was recommended that I have Bit B12 injections every 3 months and take one Folic Acid a day. Off my own bat I am taking enzyme Q10 as well. The last two over the counter vits.
Liz

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Hi Noreen,
You were looking for Liz Horne (@pec2884). This is the discussion where the two of you were talking. Simply post a reply here and she will get your message.
How is your husband doing, Noreen?

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@colleenyoung

Hi Noreen,
You were looking for Liz Horne (@pec2884). This is the discussion where the two of you were talking. Simply post a reply here and she will get your message.
How is your husband doing, Noreen?

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Dear Colleen, thank you for your reply! My husband is progressing as the doctor at Mayo said he would. He is now walking with a walker as the cane was not enough. And he has trouble with speaking, so it’s affecting his voice, and I have a hard time understanding him. He saw his local doctor and he said he thought he had about two years left. ( the doctor also said he had outlived the national average for the USA by two years) I am just amazed that the doctor at Mayo Clinic knew the process so accurately.
I want to continue to converse with Liz Horne so I hope she will read this. Thanks for having this forum. I feel so sorry for the people who have peripheral neuropathy and are in pain. At least Howard has no pain!!
Noreen (wife of Howard)

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@colleenyoung

Hi Noreen,
You were looking for Liz Horne (@pec2884). This is the discussion where the two of you were talking. Simply post a reply here and she will get your message.
How is your husband doing, Noreen?

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@howardjames Dear Noreen: I just read the update on your husband’s condition. How difficult it must be for him not to be able to communicate so that you can understand him. I see that you have a reason to be grateful in that he has no pain. How wonderful that you can find a positive in the middle of a trying time. Best wishes to you and your husband during 2017. Teresa

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@howardjames – Dear Noreen, I can relate to your husband’s inability to communicate. This has been my husband for the past 3-4 years. Like your guy, he doesn’t have much pain but with my Tom, his anger is increasing and his ability to deal with things is declining. I was forced to send my Tom for respite care today as I blacked out a night or two ago and ended up with a concussion and a injured tail bone. They tell me he is doing OK but I surely am worried and I can’t move enough to go see him tonight. Hope things improve for all of us in 2017. Trish

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Thanks for sharing with us, @tntredhead I hope for improvement as well. Take care and be well. I’m glad that you were able to get some respite care, I’m sure you needed it!

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