Cerebellum 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.

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

@oldsuzanne55

Just found out that our appointment will be a”virtual” appointment with the Dr. at 3 tomorrow . Hate this. Have not seen him since last October,due to COVID.our son is coming over to help set it up.

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Hi @oldsuzanne55 How was the virtual appointement? Toni

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@helenfrances

I do not like it either👎🏼
Everything is on line.
Just learned that our chorus is going to be on line!
Talk about social distancing🧐
Many in our large chorus are not techies, do not even have a computer 👨🏼‍💻
Perhaps some good will come of this?
I am trying to think what that is. Any ideas?

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Hi Ellen @helenfrances for online you need to have access to internet. The computer, Notebooks, Tablets, Ipads, and Cell phones are the devices used to access the internet to get your information. Do yourself a favor and use the Ipad, I feel it is much easier than other devices to manuever. After all it is simple enough for my 90 year old mother to use. I have one as well. It provides for easier visibility with its big screen. Let me know if you have any questions. I help my mother remotely. We video chat daily. Toni

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@oldsuzanne55

Just found out that our appointment will be a”virtual” appointment with the Dr. at 3 tomorrow . Hate this. Have not seen him since last October,due to COVID.our son is coming over to help set it up.

Jump to this post

I do not like it either👎🏼
Everything is on line.
Just learned that our chorus is going to be on line!
Talk about social distancing🧐
Many in our large chorus are not techies, do not even have a computer 👨🏼‍💻
Perhaps some good will come of this?
I am trying to think what that is. Any ideas?

REPLY
@oldsuzanne55

Just found out that our appointment will be a”virtual” appointment with the Dr. at 3 tomorrow . Hate this. Have not seen him since last October,due to COVID.our son is coming over to help set it up.

Jump to this post

@oldsuzanne55, I completely agree with @avmcbellar. If an in-person meeting is required, you and your doctor can determine that during the appointment tomorrow. Nice that your son is coming over to help set things up. At least you won't have to fret about technology.

To help you prepare for a virtual appointment, you might appreciate the tips that fellow Connect members share in this discussion:
– Telemedicine: How to make the most of a virtual doctor visit https://connect.mayoclinic.org/discussion/covid-19-telemedicine-its-a-brave-new-world/

Let us know how it goes.

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Hi @oldsuzanne55, this is unfortunate but get used to the new norm of today. I am sure the doctor will ask you questions to ascertain whether an in person meeting is required. It will spare you the unnecessary risks of contracting the covid virus and perhaps new or exacerbated health issues. I believe, in the long run, it benefits you. I agree. It does make for longer waits and is inconvenient but it is also a precaution for a safer outcome. Hang in there! Toni.

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@hopeful33250

I'm so glad to hear that you have an appointment scheduled later this month, @oldsuzanne55. Yes, a Parkinson's specialist would be a good idea. This type of specialist would be called a Movement Disorder Specialist. It is a specific type of neurologist who specializes in movement disorders, Parkinson's being one of many movement disorders.

It sounds like a change in his meds (either the dosage or the frequency) would be helpful at this point, but the doctor can make that decision.

Here is a discussion group about tips for meeting with a new specialist that you might find helpful,
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
Will you post again after your appointment on the 15th? If you have any other thoughts or questions before then, please post them here.

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Just found out that our appointment will be a”virtual” appointment with the Dr. at 3 tomorrow . Hate this. Have not seen him since last October,due to COVID.our son is coming over to help set it up.

REPLY
@howardjames

This is the first reply to my post. When my husband was seen at Mayo Clinic in Jan.of 2015 they gave him 3 to 4 years to live. They did not say what the cause was. He is now walking with a cane and in the evening with a walker if he is tired. He is progressing. He saw a movement specialist at Mayo Clinic. He said they were doing stem cell research. We will contact him in Aug. to see if there is anything different going on. I'm so sorry for you. My husband is 77 and at least has had a full life. It is hard on him as he was very active. We don't know whether to go back to Mayo Clinic or not. We will let our local doctor contact them.<br> God's blessings on you.<br>

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@howardjames. I do not have cerebellar atrophy but I did have an aneurism affecting the cerebellum, which involves the same part of the brain when one drinks. What are the symptoms? I have a physical deficit i.e. dizziness, motion sickness, and lack of coordination. I too require an assistive device to ambulate due to my balance issues. Have you been able to get help for your husband? Wish you and your husband best of luck!

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@oldsuzanne55

Thx for your input. We have an appointment with the neurologist on September 15and I have lots of questions. The dr is not a specialist in Parkinson’s and I want one who is , so am going to ask for a referral. I cannot get him up by myself. I call one of our sons or 911 and the police come. He has good days and bad days, in regard to his walking. If he sits door a long time, over an hour on a hard chair, he is terrible. Legs are like spaghetti. Sinemet helps but I keep telling him it only lasts 4 hrs and he has to take it on time.

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I'm so glad to hear that you have an appointment scheduled later this month, @oldsuzanne55. Yes, a Parkinson's specialist would be a good idea. This type of specialist would be called a Movement Disorder Specialist. It is a specific type of neurologist who specializes in movement disorders, Parkinson's being one of many movement disorders.

It sounds like a change in his meds (either the dosage or the frequency) would be helpful at this point, but the doctor can make that decision.

Here is a discussion group about tips for meeting with a new specialist that you might find helpful,
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
Will you post again after your appointment on the 15th? If you have any other thoughts or questions before then, please post them here.

REPLY
@hopeful33250

Hello @oldsuzanne55,

I'm glad that you posted about your husband's problems with falls. This sounds like it must be a difficult problem for both of you. Falling certainly increases his chances for injuries that could put him in a facility, rather than staying at home.

I would agree with @colleenyoung that, you probably need to get him to a doctor's appointment, either in person or virtual visit, and explain the problems with falls. He might make an adjustment in his Sinemet which could be helpful.

When he falls is it several hours after taking a Sinemet? If so, this could represent what is referred to as "off-time." This is the time when the Sinemet isn't working as effectively. Perhaps an increase in the dosage or an increase in the number of meds might be suggested by his doctor.

I understand the problem of getting people to use assistive devices like walkers. It will often be met with resistance. Perhaps his doctor could talk with him about the importance of using a walker so that he does not fall and risk breaking a bone or having a head injury.

Will you try to schedule an appointment where you can both talk to his doctor?

Jump to this post

Thx for your input. We have an appointment with the neurologist on September 15and I have lots of questions. The dr is not a specialist in Parkinson’s and I want one who is , so am going to ask for a referral. I cannot get him up by myself. I call one of our sons or 911 and the police come. He has good days and bad days, in regard to his walking. If he sits door a long time, over an hour on a hard chair, he is terrible. Legs are like spaghetti. Sinemet helps but I keep telling him it only lasts 4 hrs and he has to take it on time.

REPLY
@oldsuzanne55

My husband was diagnosed with cerebelar atrophy last year and Parkinson's. he has great difficulty walking, refuses a walker,and uses a ca. He has fallen and cannot get up without a lot of help. The neurologist says it is from prolonged use of alcohol. Because of covid , he has not been back to see dr. In a year. He takes 1 sinemet tab. 3 times a day, and it does help.

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Hello @oldsuzanne55,

I'm glad that you posted about your husband's problems with falls. This sounds like it must be a difficult problem for both of you. Falling certainly increases his chances for injuries that could put him in a facility, rather than staying at home.

I would agree with @colleenyoung that, you probably need to get him to a doctor's appointment, either in person or virtual visit, and explain the problems with falls. He might make an adjustment in his Sinemet which could be helpful.

When he falls is it several hours after taking a Sinemet? If so, this could represent what is referred to as "off-time." This is the time when the Sinemet isn't working as effectively. Perhaps an increase in the dosage or an increase in the number of meds might be suggested by his doctor.

I understand the problem of getting people to use assistive devices like walkers. It will often be met with resistance. Perhaps his doctor could talk with him about the importance of using a walker so that he does not fall and risk breaking a bone or having a head injury.

Will you try to schedule an appointment where you can both talk to his doctor?

REPLY
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