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

early parkinson, wonder what the best stem cell treatment is

How do you find a group in your area?

Our Rec Center has Parkinsons Boxing and Parkinsons Dancing which are great places to get some exercise and to meet others with Parkinsons. These are free and put on by The Parkinsons Association of the Rockies. There are surely other associations out there in different parts of the country. Good luck.

Thanks but my generic online searches have yielded nothing.

Hello @jaybee51

From your post, it looks like you are having difficulty finding some group exercises for your Parkinson's diagnosis. Here are some ideas that might help.

First, contact your neurologist's office and ask them if they know of any places where you might find a PD exercise program. In my area, the local YMCA have programs.

Also, there are physical therapists that help PD patients. The program is called Big and Loud. You might consider asking your doctor for a referral to one of these physical therapists. Here is the website where this program is explained. https://www.lsvtglobal.com/LSVTBIG

There are a lot of YouTube videos (free for your use) for people with PD. Here are some links that you can review. Many of these exercises chair exercises.
https://www.youtube.com/results?search_query=seated+exercises+for+parkinson%27s+disease
--Exercise videos from the Michigan Parkinson's Foundation
https://parkinsonsmi.org/grow/#findaclass
I hope these suggestions are helpful. Will you keep in touch and let me know how you are doing?

Thank you very much for your response and your helpful advice. I will explore all of your links and suggestions. Since my last post, I did find a connection to some in person and virtual support groups thru the APDA NW. They were very helpful but I only made that connection yesterday so haven’t had a chance to use anything yet.
Unfortunately, my neurologist is as unhelpful as possible: handed me a note that said she was diagnosing me with PD and offered no explanation or information: not even a booklet or source of info. Only a prescription and a follow up appointment in 6 months. She even sent the prescription to the wrong pharmacy and the mixup caused a 30 day delay in getting it. I only started it 3 days ago and it is really helping already. I had a bad classic Parkinson’s slow shuffle and I have my normal gait back! Only problem is I’m having serious rashes and hives and I fear that they might take me off of it as a result. This is happening with only 1/2 of a 25/100 dose of C/D taken 3X daily. Has anyone else had this reaction to Carbodoba/Levidopa and if so, did it subside or go away or did you have to stop it? I’m probably getting ahead of myself, but if I’m forced to go off it, are there good alternatives to Carbodoba/Levidopa? I’m feeling very encouraged to get such an early and positive response to the meds. I don’t think it’s just a placebo effect because I would not have thought that fast of a response was possible.
Thanks again for your response and I will definitely post updates. Jim

I do understand what you are saying, @jaybee51. When I started carbidopa/levodopa, I too had an immediate improvement in my gait. I no longer had the stumbling *drop foot" and my balance was definitely better. I told my neurologist that my brain and lower extremities seemed better connected. Is this the way you feel as well?

I'm not sure of the cause of the rash/hives. This is time to contact your doctor's office (by a phone call). There are other meds that can treat PD.

I would encourage you to learn as much as you can about PD through research from reliable websites. The Davis Phinney Foundation has great information as well as videos that might fill up the gaps in your understanding of PD. Here is a link to their website, https://davisphinneyfoundation.org/. Under the "Resources" tab you will find a listing of medications.

Here is a link with a listing of all the Mayo Connect discussions on PD. https://connect.mayoclinic.org/group/parkinsons-disease/

I would encourage you to read through the titles and look at any discussions that might offer you more information about medications.

I look forward to hearing from you again as you search for help.

Thanks Teresa, I can’t believe your description of your gait: it’s almost word for word how I described my gait “my brain doesn’t seem to be connected to my legs”. I told this to 3 different doctors and even suggested possible Parkinson’s and not one made the connection (even though I noted several other non-moter symptoms.
Anyway, after taking Carbodoba/levadopa, my brain seems to be connected to my legs again.
I am now officially enrolled in a Virtual group meeting that starts in January.
My worst problem now is back pain and I have an appointment with my pain specialist tomorrow. Am curious as to how much if any of the pain might be caused by PD. Do you have any thoughts or experience with back pain in PD patients?
Thanks for the additional information sources. I’ll check them out. Jim

@jaybee51,

Unfortunately, pain and stiffness are part of the PD experience. However, you need to have the back pain checked out. I'm sure that your pain specialist will look into different reasons for your back pain and help you find a solution.

I appreciate your comment about mentioning your leg/brain connection to several doctors before the diagnosis of PD. It often takes several years before you come up with the diagnosis of PD. For me, it was about 10 years. Persistence pays off if you stay with the process

Is the back pain a recent problem or have you had it prior to your PD diagnosis?

So sorry it took you 10 years to get a diagnosis. That shouldn’t happen.
My back problems have been going on for several years. Started with a fall off my roof but have been much worse lately. My pain doctor prescribed Pregabalin shortly after my neurologist told me she didn’t treat pain. After I researched Pregabalin, I read that it blocks dopamine production and that long term use can actually cause PD. When I asked my pain doctor if there was an alternative that was more PD friendly, he basically told me that he ‘doesn’t do Parkinson’ and I should go back to the neurologist who told me she doesn’t treat pain!!
Neither would budge from their position but the neurologist agreed to arrange a virtual visit with a pharmacist who is supposed to be well versed in Parkinson’s meds. I’ve been a patient at this medical facility for over 50 years and have never encountered such poor doctors.
In the meantime, I’m left to decide on my own whether to stop taking the pain medication that may actually do harm or discontinue it and be in a lot of pain. I’m choosing the former.