Cerebral Brain Atrophy: Anyone else out there?

I was diagnosed about a year ago, MRI's, etc.. My balance is iffy, but am active, physically, mentally and spiritually.

Hello- I am in Chicago. I will be 52 next month. About three weeks ago I thought I was having a stroke (right leg was tingling and wouldn't move as I wanted). That lasted for about 24 hours. Since then I have had a CT and MRI. MRI showed moderate cerebellar atrophy. I have started movement therapy (my idea is that I want to build new neuronal pathways for walking). We are waiting on the results of genetic testing. Now I feel like my arm hangs on by a thread and is blowing in the wind (smile). As the day goes on, my foot drags and I stumble. I have to do a lot of "talking in my head" to get things to move as they should. My leg and arm (right side) muscles ache is if they are always turned on. Saw a neurologist who referred me to a movement neurologist.

I want to read as much as I can about this disorder. Can anyone point me to things to read?

When we are not in isolation- I exercise about 4 times a week and am in pretty good shape. If I sound desperate..I am. I am desperate to learn all I can so I can slow this down. I used to jog and say the reason I work out and eat well is since I was nearly 40 when I had my son (who turned 13 last week_ I had to do those things so I wouldn't be in a walker when he graduates from college. Well now instead of college...my goal is high school (see I am a realistic person, smile)

In addition to readings, what dietary changes have people made in light of their dx.?

Thanks,
Antoinette

Welcome to Connect @howardjames. Does your husband have Alzheimer's disease?

I was diagnosed with cerebellar atrophy about a year ago. I have problems with walking without a walker and have problems with nystagmus and double vision. I play music and I
am also finding that my reaction time and coordination is declining. I am interested in talking
to anyone with the same problems.

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.

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.

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?

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.

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>

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.