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

@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 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.

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

@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.

@barryl

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

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.

@kathy49 Glad to read your encouraging comment.

I find most people’s reaction to be silent. They don’t know what to say. I try to stay focused on acceptance and learning what the disease can teach me. I had prodromal symptoms for many years, diagnosed a year ago. I hope all of you have found or are looking for an exercise group made up of people with Parkinson’s. It helps a lot in many ways. My movement disorder specialist says exercise is the best thing we can do.

I was diagnosed 4 years ago at the age of 68 with a tremor in the left hand which is fairly well controlled with C/L and exercise. My wife was diagnosed 16 years ago at the age of 53 and is doing well following DBS surgery in 2020. Everyone knows my wife's diagnosis but almost no one knows I was diagnosed mainly because I have not told my children yet. I have not shared the diagnosis because I do not want my children to worry about us. We have both been tested and neither have a genetic reason for PD. It is probably environmental, growing up in a planned community built on previous farmland. We are both doing well especially because of daily exercise. We bike, swim, row, do yoga, hike, walk a mile most days, fitness classes and weight train. Exercise like your life depends on it, it's at least as important as the medicine.
In terms of what other people say, educate yourself so you can educate them. Most people die with PD not because of PD. Best wishes, Joe

@jdabb0tt That is good to know. When I first started C/L I also found it to be very helpful.