Cerebellum atrophy: No known cause. What do we do?

Posted by nhawse @nhawse, Wed, May 22 1:21pm

My husband was diagnosed in February. We still don’t know the cause. The doctors are leaning towards genetic. We still do not know the prognosis or how fast it will go. He is 48. Use to be a police officer. He is taking it hard. We have only been married for 2.5 months. Some days he does fine or days he can hardly walk. We just don’t know what to do if anything.

Liked by Leonard

Hello nhawse,

I'm so sorry you and your husband are going through this scary and difficult time. I say scary because you still don't know exactly what's causing the atrophy. I hope you have some solid answers soon. The waiting can be just as hard. This site is a safe place to vent your feelings and it might be helpful for your husband to do the same. In the meantime, I'll be wishomg you both the very best outcome. Please keep posting about his progress.
Take good care, Lin

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Our son bought his father an electric wheel chair which is run by batteries. He moves around with that. He just sits and watches TV. We are in an assisted living facility. We have a setting room and a bedroom and it costs is $10,000 a month😠 but he has a lot of help with getting to bed and bathroom. I would not been able to do it on my own . We also get three meals a day! I lost my driving privileges,so cannot go to the store or church. Noreen

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@nhawse Boy, this sounds tough. Not knowing what happened, what caused it, and what will happen. Please take care of yourself so you can take care of him! Has anyone suggested physical therapy? They can do wonders. And occupational therapy. They can teach him how to do most everything and maybe give him some independence. They can also suggest ways to make the home safer and easier to get around. Ask your doctor for a referral and let us know how things are going. Becky

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@becsbuddy

@nhawse Boy, this sounds tough. Not knowing what happened, what caused it, and what will happen. Please take care of yourself so you can take care of him! Has anyone suggested physical therapy? They can do wonders. And occupational therapy. They can teach him how to do most everything and maybe give him some independence. They can also suggest ways to make the home safer and easier to get around. Ask your doctor for a referral and let us know how things are going. Becky

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He has had occupational therapy. But all they did for him was give a i of silverware that had fat grips.

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@howardjames

He has had occupational therapy. But all they did for him was give a i of silverware that had fat grips.

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By the way, my name is Noreen and I am married to Howard. We have been married for 59 years this Dec. I think that he is ready to to go on to heaven as he does not complain or become anxious about the dianosis.. I cried and cried about diagnosis but I'm cried out and don't get morose about it all. I just pray that his passing will he peaceful.
Noreen

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@nhawse and @namaste88, welcome to Connect. You'll notice that I moved your discussion to the Stroke & Cerebrovascular Diseases group (https://connect.mayoclinic.org/group/cerebrovascular-diseases/) You'll find members talking about discussions about cerebellum atrophy in these discussions:

– Cerebellum Brain Atrophy https://connect.mayoclinic.org/discussion/cerebellum-atrophy/
– Cerebral Brain Atrophy https://connect.mayoclinic.org/discussion/cerebral-brain-atrophy-yet/

You'll notice that I also changed the title of the discussion you started to distinguish it from the other two. It is impossible to know exactly what to expect and a challenge to prepare for. I'm glad that you found us to have people to lean on as you navigate the unknown. You and your husband are so young and so early in your relationship to be facing this. Are you able to take moments during the good days to talk frankly about the situation or is it still too raw?

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@howardjames

By the way, my name is Noreen and I am married to Howard. We have been married for 59 years this Dec. I think that he is ready to to go on to heaven as he does not complain or become anxious about the dianosis.. I cried and cried about diagnosis but I'm cried out and don't get morose about it all. I just pray that his passing will he peaceful.
Noreen

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@howardjames Hi Noreen. I remember how I felt the day my dad told me he didn't want to live anymore. He was disabled and bed ridden, and he was ready to go. It was difficult for me to hear that, but I had to accept his decision. I cried a lot more during those difficult days before he passed. After, I was busy with the arrangements and had already done most of my grieving and it made that easier for me to be able to see all the relatives and help them with their grief. It really is a beautiful thing to be able to give your support and care to a person who is dying, and to make them as comfortable as possible. After my dad died, I read the love letters he had written to my mom years ago before they were married and that gave me a lot of comfort.

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@colleenyoung

@nhawse and @namaste88, welcome to Connect. You'll notice that I moved your discussion to the Stroke & Cerebrovascular Diseases group (https://connect.mayoclinic.org/group/cerebrovascular-diseases/) You'll find members talking about discussions about cerebellum atrophy in these discussions:

– Cerebellum Brain Atrophy https://connect.mayoclinic.org/discussion/cerebellum-atrophy/
– Cerebral Brain Atrophy https://connect.mayoclinic.org/discussion/cerebral-brain-atrophy-yet/

You'll notice that I also changed the title of the discussion you started to distinguish it from the other two. It is impossible to know exactly what to expect and a challenge to prepare for. I'm glad that you found us to have people to lean on as you navigate the unknown. You and your husband are so young and so early in your relationship to be facing this. Are you able to take moments during the good days to talk frankly about the situation or is it still too raw?

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Colleen, yes we talk about a lot. I am a RN. We are very open about what is going on. We are learning a lot of things about CBA. Things I would rather not learn but need too. It’s been hard dealing with my emotions. We also joke around about it all. I feel laughter takes the edge off. We are also very scared of the future. We are just trying to live every day to the fullest. Thanks for reply to me.

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@howardjames

By the way, my name is Noreen and I am married to Howard. We have been married for 59 years this Dec. I think that he is ready to to go on to heaven as he does not complain or become anxious about the dianosis.. I cried and cried about diagnosis but I'm cried out and don't get morose about it all. I just pray that his passing will he peaceful.
Noreen

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Noreen, I am sorry. We are praying for you and your husband. It’s hard to see the changes. It’s stocking to see someone so strong change. My husband tries to make me laugh. He doesn’t want me to worry. He to has had Physical therapy. He doesn’t think it has been working. So he quit going. He also works out a lot. Thanks for your response.

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@howardjames Hello Noreen,

I'm so glad that you posted about your ability to begin the letting-go process. This is such a tough place, but a place that we all must face for ourselves and our loved ones. You and your husband have shown remarkable love and courage for each other. This love and courage will undoubtedly stand the test of time. Stay strong and continue to be of good courage.

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Thank you for the letters of encouragement and prauers for us. He see!s resigned to his fate and we are so grateful that this did not happen when he was still working or when we had kids in college!!!

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@howardjames

Thank you for the letters of encouragement and prauers for us. He see!s resigned to his fate and we are so grateful that this did not happen when he was still working or when we had kids in college!!!

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@howardjames
Hello Noreen,
Your continued strength, as well as perspective, will see you and your husband through this time. Prayers are going your way!

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Hello, @howardjames and @nhawse – thinking of you both today and wondering how things are going.

@howardjames – how is Howard? How are you doing?

@nhawse – have you and your husband been able to learn any more about the cause of his cerebellum atrophy or prognosis? How is his walking going?

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@lisalucier

Hello, @howardjames and @nhawse – thinking of you both today and wondering how things are going.

@howardjames – how is Howard? How are you doing?

@nhawse – have you and your husband been able to learn any more about the cause of his cerebellum atrophy or prognosis? How is his walking going?

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We are doing fine? No we have not found the cause of his atrophy. His walking is becoming more difficult. He is using cane more often.

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