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

Hi Noreen. Daughter has been there for 25 yrs. We have often visited and once I remember driving through Swift Current. Having a time line like your husband has is upsetting. Is he aware of it or only you. Liz

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@pec2884

Hi Noreen. Daughter has been there for 25 yrs. We have often visited and once I remember driving through Swift Current. Having a time line like your husband has is upsetting. Is he aware of it or only you. Liz

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He is aware of the timeline. Doctor at Mayo Clinic was very up front with us. He is just getting inpatient with his life and wishes it would be over with. I cried about it when we were at Mayo but now have accepted it. It’s just hard to watch him struggling to talk and walk when he was always such a busy man.
Are you the person in South Africa? Where were you diagnosed? 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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Corticobasal syndrome is similar to what your husband have

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Yes Noreen I am Liz/ pec2884 in South Africa. I was diagnosed locally in Port Elizabeth. I see the neurologist every 6 months. I have many more questions to ask him now as at first I was in complete meltdown and denial. Now I have read up various articles and now I realize just how difficult it is to make a probable diagnosis. It comes after many visits and as different symptoms develop. In MSA the categories are possible, probable and definite. The latter only at postmortem. The timeline I am expecting is 5 -9 years. I sometimes wonder is being on anti-depressants gives one the feeling of living in a happy bubble. I suppose it is better than being morbid. I have not had a decent cry yet and my family don’t ever speak of the MSA so I get very lonely at times with no one to talk to.
Liz

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@pec2884

Yes Noreen I am Liz/ pec2884 in South Africa. I was diagnosed locally in Port Elizabeth. I see the neurologist every 6 months. I have many more questions to ask him now as at first I was in complete meltdown and denial. Now I have read up various articles and now I realize just how difficult it is to make a probable diagnosis. It comes after many visits and as different symptoms develop. In MSA the categories are possible, probable and definite. The latter only at postmortem. The timeline I am expecting is 5 -9 years. I sometimes wonder is being on anti-depressants gives one the feeling of living in a happy bubble. I suppose it is better than being morbid. I have not had a decent cry yet and my family don’t ever speak of the MSA so I get very lonely at times with no one to talk to.
Liz

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Dear Liz,
I am glad that I have connected with the right Liz. My husband Howard is now walking with a walker. The local doctor says he has about two more years to live. He was diagnosed at Mayo Clinic in Rochester, Minnesota about four years ago this month and the Mayo doctor gave him about 3 to 4 years to live. He was right on target with his prognosis. He said they would be checking into stem cell research but his local doctor has had contact with the Mayo Doctor and they are not doing any research. I think that this is a very rare thing that they will not do any research for the few who have it. I have only found you to have this cerebellum brain atrophy. So many have diseases that have great pain and at least there is no pain with this. We are grateful for that. He is 78. We are grateful he is not 50 with a child in college and a job. At least he is retired.
How did your daughter get to Regina, Saskatchewan? We will be driving to Alaska in the Spring when the snow quits. We have a daughter in Soldotna, Alaska and a second small house in Homer, Alaska. We love it up there. How often do you see your daughter? What is the name of the town you live in? My husband was once in Durban, South Africa with a Habitat for Humanity build with ex-president Jimmy Carter. It was long time ago.
Sincerely, Noreen

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@pec2884

Yes Noreen I am Liz/ pec2884 in South Africa. I was diagnosed locally in Port Elizabeth. I see the neurologist every 6 months. I have many more questions to ask him now as at first I was in complete meltdown and denial. Now I have read up various articles and now I realize just how difficult it is to make a probable diagnosis. It comes after many visits and as different symptoms develop. In MSA the categories are possible, probable and definite. The latter only at postmortem. The timeline I am expecting is 5 -9 years. I sometimes wonder is being on anti-depressants gives one the feeling of living in a happy bubble. I suppose it is better than being morbid. I have not had a decent cry yet and my family don’t ever speak of the MSA so I get very lonely at times with no one to talk to.
Liz

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@pec2884 Hi Liz: I was so touched by your story. You express your feelings so well. Are there grief support groups in your locale where you could share your feelings? Perhaps a church? Your loneliness could be lifted a little if you had a place to talk. Best wishes to you for this new year. Teresa

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@hopeful33250. Hi Teresa. Thank you for the wishes. I am a member of a church but I have not told anyone of my MSA. It is a step I must take but then it would be real. I have not quite accepted the diagnosis. I have one special social worker that I speak to. I cant get to see her that often as she is in our nearest city which is about 130 kms. I seem to be waiting until it becomes more obvious to those in the village and I can’t hide it anymore. I know this a problem I must come to grips with. Hopefully soon this year.
Regards
Liz

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@pec2884

Yes Noreen I am Liz/ pec2884 in South Africa. I was diagnosed locally in Port Elizabeth. I see the neurologist every 6 months. I have many more questions to ask him now as at first I was in complete meltdown and denial. Now I have read up various articles and now I realize just how difficult it is to make a probable diagnosis. It comes after many visits and as different symptoms develop. In MSA the categories are possible, probable and definite. The latter only at postmortem. The timeline I am expecting is 5 -9 years. I sometimes wonder is being on anti-depressants gives one the feeling of living in a happy bubble. I suppose it is better than being morbid. I have not had a decent cry yet and my family don’t ever speak of the MSA so I get very lonely at times with no one to talk to.
Liz

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@howardjames. Hi Noreen. It seems I am on a similar course to your husband. I was diagnosed 2 years ago at the age of 72. So I am lagging a little behind him.
I live in a coastal village, St Francis Bay in the Eastern Province of South Africa. A real paradise. Try and google St Francis Tourism and have a look.My daughter married a South African doctor and they have live in Saskatchewan for 25 years. They have one daughter now 20 years old. A true Canadian. I have been to visit them at least 7 times but it is now very expensive for a South African to travel with the poor state of our Rand to Dollar..
How interesting that your husband was part of a group Habitat Humanity Build. I often see news bulletins of groups like that. Do enjoy Alaska. We went on an Inside Passage cruise some years ago in winter. Loved it as we never see snow unless we travel to our highest mountain areas.
I have been investigating rollators for future use and have come across Active Access which allows one to walk on rough terrain and even snow!
Best wishes
Liz

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@pec2884

@hopeful33250. Hi Teresa. Thank you for the wishes. I am a member of a church but I have not told anyone of my MSA. It is a step I must take but then it would be real. I have not quite accepted the diagnosis. I have one special social worker that I speak to. I cant get to see her that often as she is in our nearest city which is about 130 kms. I seem to be waiting until it becomes more obvious to those in the village and I can’t hide it anymore. I know this a problem I must come to grips with. Hopefully soon this year.
Regards
Liz

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@pec2884 Bless you Liz! Thanks for sharing your circumstances. I trust that you will find a way to share your burdens with others.

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Hi Noreen, here is some information about Corticobasal Degeneration https://rarediseases.org/rare-diseases/corticobasal-degeneration/, the syndrome that Tony has.

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I was recently diagnosed with cerebellum atrophy with no known cause. I am 49 yrs old. I refuse to use a cane at this point but I fall frequently, without warning. I don’t know what my prognosis is and I am not sure I want to know. I don’t see activity since January, so I am hoping I get a response.

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@ldrake101

I was recently diagnosed with cerebellum atrophy with no known cause. I am 49 yrs old. I refuse to use a cane at this point but I fall frequently, without warning. I don’t know what my prognosis is and I am not sure I want to know. I don’t see activity since January, so I am hoping I get a response.

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@ldrake101, Welcome to Connect. While I am not informed about your condition, I can identify with your fear of a new diagnosis and questions about the future. (Mine was transplant related) You have come to the right place to seek some answers from the experiences of others who share your diagnosis.
While you are waiting for their responses, I want to encourage you to use that cane. You do not need to fall and cause yourself any avoidable injuries. I had to use a walker and a wheel chair, and although a blow to my ego – it did protect me from falling and tripping.
Rosemary

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Hello @ldrake101,

I can only imagine your worries with such a diagnosis, but I’m so glad you’ve joined the Connect community.
@howardjames, @pec2884 @dmkmom04, @menville, @lindal, @tonyc @tonyc55, @godisnumber1, would you share your experience and insights with @ldrake101?

While we wait for members to join in, you might also wish to to view this Mayo Clinic news article about autoimmune cerebellar ataxia: http://mayocl.in/2mX9Off

@ldrake101, what questions do you have?

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@ldrake101

I was recently diagnosed with cerebellum atrophy with no known cause. I am 49 yrs old. I refuse to use a cane at this point but I fall frequently, without warning. I don’t know what my prognosis is and I am not sure I want to know. I don’t see activity since January, so I am hoping I get a response.

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Rosemary,
I don’t have a cane at this point. I am not sure it will prevent falls but could be a greater hazard in a fall.

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I don’t know what questions I have at this time. I am trying to make sense of it and accept it on some level. I was doing some research on my diagnosis when I came across this chat, decided it might help me.

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