Reactions when you tell people you have Parkinson's Disease?

@kathy49 Glad to read your encouraging comment.

This disease is like a unwanted friend who never leaves. Sure, you can forget about it for a short while, but it always seems to find ways to hit back harder. I remember the days where I got so concerned if people saw my arm swing or not. Did that arm swing seem normal? Am I walking in a weird way? Look in the mirror, assess, yes, I am all right. What about now? Look at that person to see if they suspect me. Ironically, by looking at them, I am making things weirder.

These are the things this disease makes you consider for years until you get used to just existing and dealing with it. But every day is a battle, and if you don't keep on guard, you will find yourself sitting at a desk or in the bathroom for long periods of time waiting for the medicine to kick in , pretending to be all right.

I wish I knew the secret of what causes you to switch from the "off" state to the "on" state. I think that just laying there and doing nothing doesn't help much. You can't quite exercise, but moving around seems to helps. So does distracting your mind. Sometimes. But stress can delay everything, and unless you figure out what the source of the stress is, you remain in the "off" state. If you have asthma or are generally under the weather, that delays things too. Or if you slept badly. Or if you didn't exercise enough the previous day. Or if you didn't eat enough food. Parkinsons can be an equation that you have to solve every day, with only have a vague notion on how to do it.

I think hearing everyone's perspective has been helpful,. Not that misery loves company, more that I am not a complete outlier. Thanks for reading.

@barryl

Thank you for this as it is a good way to cope

@nova11723
My husband told a friend that I have Parkinson’s. The friend asked, “Is that why she walks funny?” And I have been so proud of my gait improvement with PT! Oh, well.

Yep "oh well". Confirms my opinion not telling anyone except medical doctors.

@kathy49 Well, it's your choice, but telling close friends has its advantages. One person ended up telling they had two in their family with Parkinsons, so it worked out. I wonder many people actually have Parkinsons.

@nova11723
I think way more people have it than are actually diagnosed. Often it can be as you say and you feel not alone and realize it is not that uncommon but so far that has not been the case for me. I also think it depends on how controlled your symptoms are. It is an adventure.

@kathy49 "I also think it depends on how controlled your symptoms are. "

Very true.

When I was a child, my mother, rest her soul, said to me, "If you care what other people think, they will take space in your head and control your thoughts, emotions, and actions for the rest of your life." I was being bullied in school, and this statement made a huge difference in my life. Bottom line, don't care what others think! When it comes to PD, it really is no one's business. For those who can't handle it or criticize it, that is their problem, not yours. Remember, don't let anyone rain on your parade. You are beautiful!

@nova11723
"I wonder many people actually have Parkinsons. "
I think many millions more than have been diagnosed.
Who have symptoms, but never happened to encounter a doctor with the training to recognize them. 🙁