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@hopeful33250

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?

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Replies to "Hello @raybepko and welcome to Mayo Connect. That is great that you are searching for resources..."

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.