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@raybepko

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.

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Replies to "Thank you for your quick reply. She was diagnosed in March 2023 but it is clear..."

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.