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or unknown at this minute, because it can change in the blink of an eye. That part of the disease can change very fast—just a thought.

May 6
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A MyParkinsonsTeam Member

No, if I had insomnia until 2:00am, there are many days, I have weakness, no energy and loose my balance. It’s these days I am more apt to fall or faint. Besides the day walkers are half way through with work and it’s very hard to leave home.

May 10
A MyParkinsonsTeam Member

I agree- I even felt this way pre diagnosis. I mean what really constitutes as a bad day? Aren't we just dooming ourselves if we say that it's bad day at 11am?

May 7
A MyParkinsonsTeam Member

Paul,
You are exactly correct. I share with my neurologist any and all new developments; however, the new symptoms may or may not present in the doctors office. Parkinson’s controls us. I have tried to control it, especially during dystonia’s. They hurt! I got up this morning to find myself with very weak and with tired muscles.

I thought to myself, I am getting my rollator and start to make my coffee. The same routine I have every morning. It took me a little longer, but I did get my coffee. I have started talking to my Parkinson’s; hoping no one will hear me!🤫 I said,” P” I win this time, 😂 Well, I’m continuing my day, waiting to discover what Parkinson’s has for me, next time it shows its ugly uncontrollable face.

May 6
A MyParkinsonsTeam Member

MY days are like a major roller coaster with peaks and deep valleys, just like life. I'm sure everyone has them. My vision and my focus are all over the spectrum; there is no consistency in my world; it's extremes, Moment to moment. I'm sure others feel this way too.

May 6
MyParkinsonsTeam

That is such a valid and thoughtful point! Living with Parkinson's means that how you feel can shift dramatically from one moment to the next — what feels "okay" at 10am might be a completely different story by noon.

The fluctuating nature of Parkinson's symptoms, like motor fluctuations and "on/off" periods, makes a Show Full Answer

That is such a valid and thoughtful point! Living with Parkinson's means that how you feel can shift dramatically from one moment to the next — what feels "okay" at 10am might be a completely different story by noon.

The fluctuating nature of Parkinson's symptoms, like motor fluctuations and "on/off" periods, makes a simple "Good" or "Bad" label feel almost too rigid for the reality many people experience daily.

An option like:

- "It's complicated right now"
- "Ask me again in 5 minutes 😄"
- "Unknown / Changing"

...would genuinely reflect what so many people go through.

This kind of feedback is really valuable and worth sharing with the MyParkinsonsTeam team directly. There is a way to submit suggestions — look for a feedback or "let us know" option on the site. Your lived experience is exactly the kind of insight that helps improve tools for everyone in the community.

May 6

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