No matter who you are or where you live at some point you will become the whipping post/scapegoat for everyone's insecurities around you. When you are known to have Parkinson's people google it and get the impression were all nuts or going nuts. In all situations of memory and anger , sadness...none of it is real to outsiders they just chalk it up to PD dementia or confusion, real or not. Even our abnormal movements and loss of micro expressions conspire against us unwittingly and create a bias environment wherever we go. I always say......if enough people believe something then it becomes reality for them. People use the disabled often to blame them for things the disabled person did not do. THIS IS ONE REASON WHY WE ISOLATE. My advice is tell no-one about your symptoms except your dr lest ye be pre judged. Cheers.
Parkinson's Bias: No matter who you are or... - Cure Parkinson's
Parkinson's Bias
I don't agree. All my friends and family know I have Parkinson's, as do about half of my clients. Nobody treats me any differently and I certainly don't isolate (although I socially distance due to the covid epidemic)
You are lucky. Im glad you dont have that. cheers
how long have you had severe symptoms in public?
so sorry you are experiencing this. We were very lucky to be surrounded by helpful friends and family
now i can live vicariously through you........where i am PD is a posession by the devil to be excorcised. cheers.
how long have you had severe symptoms in public?
My husband passed away in 2012 but not from PD. He had good days and bad ones. Our plans were made based on how he felt. He was meticulous with taking his meds, exercised daily and since he tired quickly, we didn't over schedule.
Do you have a Movement Disorder Specialist supervising your care? My husband's symptoms improved dramatically when we switched from a general neurologist to a specialist.
i have had Mvmnt. at university colorado hospital for at least 15 yrs along with neur-physical therapist, cardio....and pulmo both neuro focused.
here is my Dr...............until he moved...youtube.com/watch?v=zWqZPbs...
youtube.com/watch?v=7PfIz6S...
sorry you lost your doc. Is his replacement not helping you?
working on it but at certain point there is no "help"
If people are so ignorant of our dailly battles then tell them to do one
I so agree!! I tell only a few people about my PD, and living with it! I have gotten blamed, inadvertently, before, just because I, supposedly, have a disability. This occurred a few times, in the first couple years, since my diagnosis. I didn’t tell more than about 10 people about my PD, but my daughter told quite a few people. That was ok, because she didn’t mean any harm, in the respect that some people, would criticize me etc. She eventually got the message that I didn’t want the “World”, só to speak, know my ailments. In the 3 years since, I’ve practiced hiding any indications that I have PD, as best I can, and try to downplay that I have any problems. An advantage that I have, is that, since I’m elderly, when I am slow getting around, if anybody says anything, I just tell them that I have typical old people’s ailments, like arthritis, and that I’m not quite as sharp as I used to be. The resting tremor, I get, is a dead giveaway, so I always keep my left hand, which has the tremor, sort of out of the way, I want to make it clear, that I do that, not because I’m ashamed or embarrassed, rather because I don’t like being fussed over. Sometimes, people make concessionary remarks about diseases, ailments, etc., and I’d rather not make a big deal over any physical limitations, or problems, that I may have. Unfortunately, the judgmental attitudes, of some people, who lack understanding, compassion, and etiquette, can become very upsetting, for someone who has an obvious, and/or known disability! I try to disassociate myself from negativity, and criticism, because it’s just not necessary, and I don’t need to put up with it!! Hang in there, and try not to let some people’s judgmental attitudes, and snipes, discourage you! You can always communicate with others, in this forum, who are supportive of you, and care about you, and can identify, with the struggles of having PD!
beehive23 I watched the videos! You are so lucky to have had such a knowledgeable, wonderful Doctor, like this! It’s really hard to find a neurologist, who is enthusiastic, and wants to help , as much as this Doctor! Too bad he moved. Thanks for sharing!!
This will only work while you have mild symptoms I did that at first now 10 years in I can barely walk fall over regularly and have a bad tremor it catches us all
I have also experienced some of my family and friends blaming the disease rather than seeing ME. I believe my emotions are still completely valid and that in an argument, I should still be heard. But many of my friends and family treat me like my true self. I am so thankful for these people who are able to see beyond the disease. I hope you find those people who see you.
im glad you have some trusted folks, thanks for answering. cheers!
"if enough people believe something then it becomes reality for them. "
"My" nursing home has taken a turn for the worse. Too many aides Nd nurses have begun espousing, I don't need meds, just have faith and walk.
Thats a rough spot. I wish i could help. Hang tough. Ill think good thoughts for you.
Thank you. Your words helped.
i just flew a guy with pd from texas to my home in colorado to spare him what was going on in his nursing home..............its working out good but now im caregiver with pd heheheh..........cheers!
All my family and friends know I have PD and are very supportive. I definitely do not isolate and keep very active.
I didn’t isolated myself and have told everyone because symptoms are so bad. I Am always light headed and speech is getting worse and I fall down a lot and if everyone didn’t know they would think I’m drunk 🥴. Everyone has been really great
Excellant!
I've had PD for 3 and a half years , and everybody who knows me also knows I have PD. I do not hide my tremor, if I notice someone staring at my tremoring hand I tell them that I have PD! I have never been victimized or treated as a disabled person. I have Parkinson's, Parkinson's does NOT have me.
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