September 29, 2017
Which invisible PD symptom do you wish people would see and understand? We want to hear more about your journey with the unseen difficulties with PD.
September 29, 2017
It would be great if people just knew I had invisible symptoms. People don't even know. There is such a lack of knowledge regarding PD. So I walk around with constant muscle pain acting as if I feel as good as everyone else. If I mention the invisible symptoms then I risk coming across as a complainer or attention seeker. If I don't mention them then I give the impression that all is well. Even with this dilemna, I don't wish to add any invisible symptom to the visible symptoms list-it's long enough.
October 2, 2017
Thanks so much for your input on this topic, Courage. We've heard commentary from other community members stating that they have had similar experiences. Our contributor, Michael, wrote a great article surrounding how he's been told that he "doesn't look sick" here: https://parkinsonsdisease.net/living/but-you-dont-look-sick/. Thanks so much for being part of the community! - Chris, ParkinsonsDisease.net Team Member
October 3, 2017
Invisible symptoms are a problem; others just don't get it. I have been through a realization recently. I finally have come to grips with "I have Parkinson". This has caused me to really look at how OTHERS see me and be more aware of their views and reactions and how I can do things (get a walker, use it, talk to them before u. Others don't see or understand what they see without us explaining it to them, if they'll listen. Knowledge IS power! No one knows when we freeze or start to tremor when were going down a hallway, in an elevator, or trying to get change or cash out to pay for something. They don't understand we have no control and the more we "try" or worry about it, the worse it gets. Stress is a real big invisible symptom we struggle with as well. When friends don't want to give me a ride anymore, it may very well be they are afraid of you falling, and not being able to help you up. Or if you have fallen in a parking, bumped your head and an ambulance has to come and you end up in the hospital (a real story for me!), this person might not be as eager to come and give you a ride, not may your other friends . We meed to acknowledge the possibilities of things happening and help our friends help us with these symptoms.
I hope this helps . . . it has helped me with "keeping" friends! Thanks for "listening"!
October 4, 2017
I agree with everything I just read I've been thru all these situation sometimes I feel it's useless to try to explain what is happening to me because no one really listens,actually I've givi g up on trying to educate people I come in contact with because they really aren't interested so why waste my time
October 4, 2017
Thank you so much for sharing everyone. It makes me feel not not quite dio all alone, in reality I am. This is just the beginning of muy journey and already I can relate. It's hard to explain to family and friends that you're not, and never going to be the person you were ever just a year ago. The organic fatigue, I like to call it, that sleep doesn't help. Then there's the apathy that makes you want to stay in sweats in your recover watching HBO all day when you should get up and do something. How going out to eat or to a party sounds good until the date comes around and you just don't want to go! Then there's how difficult it is just to make a list, get ready and go grocery shop. No one wants to hear it, they don't get it. I fell lime I'm forcing my rigid, sore muscled body through water everywhere I go.