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A MyParkinsonsTeam Member asked a question 💭
Churubusco, IN

I have friends and people say you don't like you have Parkinson disease. You look good. I was diagnosed in 2018 by a couple of doctors that both agreed I had it. People think I don't have it. But my hands are shakie and sometimes I lose my balance I walk with a cane. Plus other small things that come with having the disease. I don't understand what I am supposed to look like or act like.

December 2, 2025
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A MyParkinsonsTeam Member

They don't know what you go through behind the scenes, and people with PD have different symptoms depending on the stage of the disease. Just keep working on exercise and keeping your mind sharp. Don't worry about what others may say.

December 5, 2025
A MyParkinsonsTeam Member

I think Les has it right. The most well-known person with PD is Michael Fox. Everyone has seen him. Or Muhammed Ali, with his brain damage and shakes. Others may have known people with advanced PD who either had obvious tremors and dyskinesia or who looked frail and shaky. People may not understand that you don't start that way. It comes with time, and not the same way for everyone.

December 2, 2025
A MyParkinsonsTeam Member

I JUST had this very conversation 😏
I have pain and rem sleep, temperature control, blood pressure, digestion, urinary and spend an inordinate amount of time ground surfing, gravity testing and vertical challenge. I have fallen while kneeling 😟 and I actually had to go to the ER and had to explain that. The upside was that the nurses got a really good laugh as I told them the story....and how a ceramic squirrel tried to take me out. They love me.
My doctor told me that I don't have Parkinson's because I don't have a masked face but I couldn't have MSA-C because it is rare 🤔 I know I am no genius but rare is not none. "Can you explain why this is becoming more difficult to manage? No body talks to one another and connect the dots. I will say that my Gastro doctor is the only doctor I have ever had that said "I always believe my patients because nobody wants to feel sick or in pain. "
I will always love you Dr Brown ♥ you are the ONLY one who listened to me and respected my research and hypothesis. You maintained curiosity and open minded. So far we are the only two that see what the dots say when they are connected.

December 4, 2025
A MyParkinsonsTeam Member

I had a person ask me about 5 years ago say you don't look like you have Parkinson so I asked them what does Parkinson look like and they said you know like Michael JFox that's what they think Parkinson looks like I tell everyone today live in my body for 24 hours and you'll know

December 2, 2025
A MyParkinsonsTeam Member

My husband doesn't have a masked face, but he definitely has PD.

December 4, 2025

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hollister_d@yahoo.com