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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.
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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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.
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,
Will you post again after your appointment on the 15th? If you have any other thoughts or questions before then, please post them here.
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. God’s blessings on you.
@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!
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.
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.
@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.
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?
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
Hi @oldsuzanne55 How was the virtual appointement? Toni
Thx for following up with me. Appointment was very disappointing. My husband is very hard of hearing and the Dr. has an accent , so I had to keep repeating what he said to my husband. 15 minute appt. and all he asked him to do was to raise hands out in front of him to see if he had a tremor. Only his right thumb shook a little bit. He did not ask him to walk, which is his big problem. I asked for a referral to a movement disorder specialist, he said there was a 9 month wait for the dr. I asked him for. Told him that was ok, so we will see. He increased his sinemet to 4x a day from 3
Hi @oldsuzanne55 Sorry it was such a disappointment for you. I agree with the accents. I sometimes have trouble understanding. I don’t know if going in person would have made it any better. Do you think increasing the Sinemet will help. I don’t have a diagnosis of Parkinson Disease. It is a neurological disorder. I do have a neurological disorder and benefited from a Keto diet. The body learns to get its energy from the consumption of fat and NOT carbohydrates. Perhaps you can discuss this with your doctor if it can help your husband. This diet was developed back in the early 1900s to decrease the occurrence of seizures. It became very successful and popular until medications were developed. It was easier to “pop” a pill than to follow the diet. I know a friend you had complained of tremors. Someone else in the family had also gotten the tremors. My friend had gone on the diet to lose weight in preparation for his wedding. After losing 25lbs he had stopped the diet. Shortly after his tremors came back. He told me he was tremor free while on the Keto diet. It may be worth a shot to ask your physician. Hope you are doing well with the internet technology. Toni
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