Living with Parkinson's Disease - Meet others & come say hi

Hello @joeraleigh, and welcome to the Parkinson's support group on Mayo Clinic Connect. It sounds like you have been dealing with these symptoms for several years now. Have you met with a movement disorder specialist regarding your symptoms?

There are many medications and Physical Therapy programs that can help with PD symptoms. Here is some information about the importance of exercise, from the Parkinson's Foundation website:
--https://www.parkinson.org/living-with-parkinsons/treatment/exercise

The physical therapy program that is effective for treating PD patients is called Big and Loud.

Has any medication or physical therapy been prescribed for you?

I was diagnosed 6 months ago, neurologist felt progress would be slow. In the past 4 months, both my sisters have died and we had to put down our sweet dog. I feel all of this emotional trauma has exacerbated my symptoms. Has anyone else had experience with this?

@hopeful33250
Thanks!! I have not started meds yet, i did have a meeting at Mayo to discuss DaT Scan results and evaluation. Thus far other than the tremor/shake in my right hand (odd only happens when i am not thinking about it??) I have been into physical fitness and annual workout goals for yrs. Currently I get in 3 hrs Zone 2, 600 air sqts, 400 pushups, 200 pullups, 2-Norwegian 4x4s,/wk plus flat/seated bench 2x/wk. trying to work my VO2Max above 50. Been reading about building mitochondrial function, physical and neurological plasticity and its affects on PD outcomes.

@joeraleigh
movement disorder specialist is a great idea. I had my first meeting with one yesterday and have a follow up in 4 weeks. from everything I've been told exercise is key and it sounds like you do more than people without PD so keep it up. I would also look into Beech band just google it and do your own research. it has helped me greatly with my tremors.

Hi @hopeful33250 @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth:

I'd like to invite you to the new group on Connect dedicated to discussions about Parkinson's disease. It's a space where we can ask questions, share tips and learn about living with Parkinson's from each other. Whether you live with Parkinson's or care for someone with Parkinson's, please join us. Pull up a chair and tell us a bit about yourself.

@colleenyoung
I am 65 and was diagnosed with Parkinson's at the age of 32. I had my DBS surgery at the Mayo Clinic in Minnesota. I'm at the point that the DBS helps somewhat but now have a lot of falls, my feet freeze up when I want to move forward and my legs don't. I am taking my carbidopa-levodopa every 3 hours now. My tremors are all the the lower extremity and it is getting more exhausting as I age. I feel so useless as I don't get much off time anymore. The Mayo Clinic says my Parkinson's was environmental as we lived on the farm with well water. My younger brother also had it but ended up committing suicide because he could no longer deal with it. My other two brothers are fine with no Parkinson's. I feel all alone with the constant dyskinesia and tremors. My husband of 23 years tries to be helpful but when I get dyskinesia he says just change your settings and I try but at this point it doesn't work as well and it makes me sad when I see the look of disappointment on his face. My Neurologist at Strong Memorial is the best but he had just told me that the disease is progressing. He really tries to keep me positive but it is getting harder with all my falls. I do use a walker now but it is hard to move through out the house. We have recently moved in with my daughter and her husband as my husband is 77 with 2 heart attacks and my Parkinson's. My daughter is now dealing with severe anxiety and does see a psychiatrist to help her. Everything is just getting so complicated.

I was diagnosed with early stages of Parkinson’s January 2 of this year. I’ve been trying to take the recommended medication (carbidopa/levodopa) but it literally makes me sick to my stomach. And I am very very tired. The doctor said to take with fruit. Did anyone else have this situation? I work part time and it was so bad I quit taking it all together.

@colleenyoung
I am 65 and was diagnosed with Parkinson's at the age of 32. I had my DBS surgery at the Mayo Clinic in Minnesota. I'm at the point that the DBS helps somewhat but now have a lot of falls, my feet freeze up when I want to move forward and my legs don't. I am taking my carbidopa-levodopa every 3 hours now. My tremors are all the the lower extremity and it is getting more exhausting as I age. I feel so useless as I don't get much off time anymore. The Mayo Clinic says my Parkinson's was environmental as we lived on the farm with well water. My younger brother also had it but ended up committing suicide because he could no longer deal with it. My other two brothers are fine with no Parkinson's. I feel all alone with the constant dyskinesia and tremors. My husband of 23 years tries to be helpful but when I get dyskinesia he says just change your settings and I try but at this point it doesn't work as well and it makes me sad when I see the look of disappointment on his face. My Neurologist at Strong Memorial is the best but he had just told me that the disease is progressing. He really tries to keep me positive but it is getting harder with all my falls. I do use a walker now but it is hard to move through out the house. We have recently moved in with my daughter and her husband as my husband is 77 with 2 heart attacks and my Parkinson's. My daughter is now dealing with severe anxiety and does see a psychiatrist to help her. Everything is just getting so complicated.

@brinkmanlc4440 I was diagnosed with early onset PD 17 years ago. The neurologist who diagnosed me recommended I wait until "the last ditch" before starting C/L. I tried it out 10 years ago and had a bad reaction. Tried it again last year and tolerated it better, but still didn't like how it made me feel. I have certainly progressed over the years, but so far, I prefer living without coping with complications of medication on top of an already difficult disease. My path is not for everyone, but I do like to let people know from time to time that it's possible to manage in other ways.