Cerebellum Atrophy

@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

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.

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?

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.

@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

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!

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.

Thank you so very much for your empathy!!!

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

@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!