A family member has either Parkinsins or PSP. 4 movement disorder doctors haven't made up their minds. We are now with UPenn and Dr Deik. Happy with him. Carbidopa levadopa has helped with the body pain. Rock steady boxing program has helped with balance. Not sure but think the drug makes him very dizzy which he hates. We have cut back the drug to 2 pills a day cut into quarters. Pain still under control but still dizzy, just less. More isn't always better. This Dr. Very much lowered the dose. Sleep is not bad for him. Rigidity better from the drug. The Doctors don't seem to really know a tremendous amount about these conditions and each person is different! Exercise is your best friend!
I’m 55 diagnosed in October 2020. Your story is pretty much a copy of mine. I also had surgery in my right shoulder after having 3 frozen shoulders. The small handwriting started after the operation even if I did a lot of physiotherapy to improve my mobility. Surgeon said it was normal!!! Anyway it got worst to the point that i stopped handwriting and always use computer to leave notes. Your blog is very helpful.. Thanks
Yes-there is a thin line between taking control of your treatment and yielding to the experts. It is a changing point too. Thanks for sharing that process. It is very helpful and you are very articulate in describing your experience.
We appreciate your vlogs. My husband has been diagnosed with parkinson's for 4 years - has had symptoms for at least 10 years. You sharing your experiences is helping him explain his situation which helps me understand what he is going through. Thanks!
Kim, our symptoms and perceptions are very similar but I ‘think’ I’m more ebullient than you. Damn, Kim, maybe I WAS that but not so much anymore. Thought it was the isolation associated with pandemic but in retrospect..... Bottom line, we’re on the same journey and I enjoy your reflections....take care
I'm not an expert on medications but I do recommend you read the book, "The New Parkinson's Disease Treatment Book: Partnering with Your Doctor To Get the Most from Your Medications" by J. Eric Ahlskog PhD MD He goes into great detail on medications and he definitively says that carbidopa levodopa can definitely help you sleep, If you have Parkinson's, and he explains exactly why that is.
You mentioned in an earlier video that you have some facial masking, It's more obvious in this particular video. I think I do too and I just have a question for you about it? Does it feel like your face from your upper lip up is swollen stiff and numb almost like you had novocaine? And yet it is not swollen? That's pretty much how I feel. I'm not diagnosed yet but I think I have it. Other symptoms as well.
I love that you are so focused on treatment and what you can do and don't get bogged down by the not-do-good specialists!
A family member has either Parkinsins or PSP. 4 movement disorder doctors haven't made up their minds. We are now with UPenn and Dr Deik. Happy with him. Carbidopa levadopa has helped with the body pain. Rock steady boxing program has helped with balance. Not sure but think the drug makes him very dizzy which he hates. We have cut back the drug to 2 pills a day cut into quarters. Pain still under control but still dizzy, just less. More isn't always better. This Dr. Very much lowered the dose. Sleep is not bad for him. Rigidity better from the drug. The Doctors don't seem to really know a tremendous amount about these conditions and each person is different! Exercise is your best friend!
I’m 55 diagnosed in October 2020. Your story is pretty much a copy of mine. I also had surgery in my right shoulder after having 3 frozen shoulders. The small handwriting started after the operation even if I did a lot of physiotherapy to improve my mobility. Surgeon said it was normal!!! Anyway it got worst to the point that i stopped handwriting and always use computer to leave notes. Your blog is very helpful.. Thanks
Yes-there is a thin line between taking control of your treatment and yielding to the experts. It is a changing point too. Thanks for sharing that process. It is very helpful and you are very articulate in describing your experience.
We appreciate your vlogs. My husband has been diagnosed with parkinson's for 4 years - has had symptoms for at least 10 years. You sharing your experiences is helping him explain his situation which helps me understand what he is going through. Thanks!
Kim, our symptoms and perceptions are very similar but I ‘think’ I’m more ebullient than you. Damn, Kim, maybe I WAS that but not so much anymore. Thought it was the isolation associated with pandemic but in retrospect.....
Bottom line, we’re on the same journey and I enjoy your reflections....take care
I'm not an expert on medications but I do recommend you read the book, "The New Parkinson's Disease Treatment Book: Partnering with Your Doctor To Get the Most from Your Medications" by J. Eric Ahlskog PhD MD
He goes into great detail on medications and he definitively says that carbidopa levodopa can definitely help you sleep, If you have Parkinson's, and he explains exactly why that is.
Yes I have referred to that book frequently
You mentioned in an earlier video that you have some facial masking, It's more obvious in this particular video. I think I do too and I just have a question for you about it? Does it feel like your face from your upper lip up is swollen stiff and numb almost like you had novocaine? And yet it is not swollen? That's pretty much how I feel. I'm not diagnosed yet but I think I have it. Other symptoms as well.
I don’t have that feeling but everyone’s symptoms are different