Looking For Online Live Support Meetings for Patients and Care Partner

Hello @raybepko and welcome to Mayo Connect. That is great that you are searching for resources that might help you and your wife. It is important to find support when you are dealing with a difficult diagnosis like PD. There are a couple of national organizations, devoted to helping people with PD. Here is some information regarding them.

The Davis Phinney organization has great teaching videos. If you contact them, they may be able to assist you with an in-person or an online support group. Here is their website,
--Davis Phinney Foundation
https://davisphinneyfoundation.org/
If you look at the bottom of the website page, you will see a toll-free phone number. If you call them, they may be able to help you find some additional support.

The Parkinson's Foundation might also be able to help you. Here is a link to their website,
--The Parkinson's Foundation
https://www.parkinson.org/
If you click on the tab that says, "Resources and Support," you might be able to find some information.

Regarding finding a therapist or counselor, perhaps your wife's neurologist might be able to give you a referral to a therapist that could help her.

I'm glad that you are seeking help. Is PD a new diagnosis for your wife? What are her most troublesome symptoms right now?

Thank you for your quick reply. She was diagnosed in March 2023 but it is clear the disease started about three years earlier. She was misdagnosed - and Parkinson's specifically ruled out - in January, 2022 so she went without any treatment for over a year. The current medication regimen helps a bit but there is more off time now. Motor symptom and non-motor symptoms are increasing, particulary cognition and memory deficits, benign hallucinations and some de-realization. There is extreme fatigue and some breathing and urinary and gastrointestinal problems as well. I am a clinical psychologist with 45 years experience and a neuropsychological and health psychology background but she obviously needs someone to work with other than me. There are no therapists in our area who would fit what she needs. Believe me, we have looked and I've used every resource I have. Our neurologist is of no help. He is largely unavailable, reactive rather than proactive in management of the illness, and it is almost impossible to get an appointment between his standard 4-5 month follow-ups, often with his PA. They are both competent and I don't blame them for the poor care; it is an insane health care system that is at fault. We are looking for a new neurologist as part of a team that would be both proactive and follow up frequently and consistently but so far, no luck.

You are in a difficult situation. I'm sorry that your doctor isn't more helpful. Being misdiagnosed seems to be quite common with PD. There really aren't any definitive tests that can diagnose it.

My symptoms started in my late 40's and I saw numerous neurologists who thought perhaps it was early-stage MS or some other neurological disorder. It took about 10 years before I began falling and then I met a neurologist who suggested I try Sinemet to see if it would help. When it did make a difference in my symptoms, it was decided that I had PD.

Just a thought: Can you travel to a Parkinson's Center of Excellence? It might be worth a one-time consultation to be sure that everything that needs to be tried has been tried. After the initial consultation, perhaps virtual visits might be an option.

Mayo Clinic has three locations, in AZ, MN as well as FL and they treat PD. If you look at the websites that I suggested, you will see other Parkinson's Centers of Excellence as well.

I look forward to hearing from you again. I hope that you are able to find some help for your wife.

Thank you. I'm looking at the Mayo Clinic and others in the Northeast. Travel is a concern but not an absolute barrier.

Definitely try “Parkinson’s Resource Organization.” They have Zoom meetings online several times a week. My husband and I go on whenever possible. In our case, our youngest son has early onset Parkinson’s for 8 years now. You’ll feel like “family.” Everyone is very nice. God bless you. I believe in miracles!!! GOD IS ON THE MOVE! TRUST & BELIEVE!

Thank you so much!

Does your state have a Parkinson's Foundation. They may be able to help you locate a Zoom group locally. I joined 2 in- person groups in my community but a 3rd person offered an on-line support group.. I know you are looking into Mayo Clinic which would be good. I would recommend a referral to a movement disorders specialist. It sounds like your wife might benefit from Speach therapy. I learned recently that many hallucinations & delusions may be drug related. I understand PD may also cause thoses problems. Good Luck,