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howardjames (@howardjames)

Cerebellum Brain Atrophy

Stroke & Cerebrovascular Diseases | Last Active: May 25 11:28am | Replies (206)

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@howardjames

My husband has been diagnosed with Cerebral Brain Atrophy. He was diagnosed at Mayo Clinic. He was given 3 to 4 years to live. At that time he was walking with no problems. It effects the balance and speech, and swallowing . He is now in his 4th year. He is wheelchair bound and has more trouble with swallowing. The doctor at Mayo said he would probably die of
Aspiration pneumonia as he has trouble swallowing.
I am so sorry about your son. My husband is 79 and at least this did not happen while he had a job and child in college. We are very grateful for that!
Please keep me informed. We have only found one other person who has this and she is in South Africa. I wrote to Colleen why there weren't more with this diagnosis and she said that it's very rare.
Noreen (wife of Howard James)

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Replies to "My husband has been diagnosed with Cerebral Brain Atrophy. He was diagnosed at Mayo Clinic. He..."

Hi Noreen. I have been reading about your husband. How is he doing now? Is all very sad and my thoughts are with you both. My mum is 70 next year and has just been diagnosed with this. It's taken a long time (3 years) for diagnoses. She started swaying around 4 years ago, jump to today and she can't even walk with a frame. Her body goes into spasms, even freezes. Her right side is effected more, her arm and leg feeling dead. She has had a stair lift fitted and next few weeks a wet room too. She gets so angry and it's heart breaking to see her like this at all. We have been told of life expectancy at all. She has other conditions including conduction disease and needs something fitted. We know it's a rare condition and here in the UK the doctors are very vague. She recently had a DNA test done to determine if it's Genetic (she was adopted and didn't ever know her real parents) so awaiting results. Her speech is sometimes a little slurry but when she is tired. We don't know how long or how bad this gets but the more research I do, the more heart breaking the reality becomes. Thinking of you and your husband, hope you are ok x