Cerebellum Atrophy

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.

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?

@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

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.

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

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

@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

@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

@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

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