Does anybody else have the problem of having difficulty putting others at ease or just coming off flat out awkward. My wife sometimes says, "why are you starting at me like that" when I'm genuinely just interested in what she is telling me. I don't know how many times people have told me helpfully, "cheer up!", when I am perfectly happy. Then of course I feel obligated to put extra effort into looking cheerful, which I think comes off looking a little weird and I feel silly. It's the worst when I'm tired (which is often). During those times I can definitely see that my "stone face" is a little off putting. There's something about those times too...like I don't have the energy to have any expression but I try anyway and it just looks slightly unnatural and well....awkward. Anybody can relate?
Parkinson's Awkwardness: Does anybody else... - Cure Parkinson's
Parkinson's Awkwardness
My guess is that everybody here can relate to what you describe, pretty precisely by the way.
Sometimes its just nice to know I'm not the only one!
Unless they have been in our shoes maybe they just cant understand it.People are so mean sometimes!
Yes people can definitely be very mean. Even if it's intended to be "all in good fun" its still embarrassing, and makes you feel uneasy in your own skin. Like you just can't be yourself you have to look cheerful enough for everyone. Not to mention, move at everyone else's speed.
Boy, can I relate! I used to enjoy having my friends come over for a visit. Now I find it very tiring and not really rewarding. I am very conscious around people of my dyskinesia but God forbid I let my meds drop out because then I am just like the tin man in the Wizard of Oz physically and mentally kaput. Being alone is hard too in many ways but is also more relaxing. This is why I enjoy my support groups... The only people that could even begin to understand. I am trying very hard to let myself be just as I am and not feel the rush to do things quickly and self consciously in public. Like when I pay at the cash register being overly aware of being slow and awkward. Oh, to be comfortable in my own skin. I think that’s one of the things we lose along with that overriding sense of well-being. I miss that.
You said that so eliquitely and spot on. I try so hard to hide some of my dystonia and my new tremors that started —- the more you try to hide it , the worse it becomes . 😬 I too get the stone face at times , mostly late afternoon and I try to be conscious of it bc I know I look like a raving bitch lol and try to make my mouth smile . When meds are on , I’m ‘normal ‘ but if they start to go off ...... well it all goes . It’s hard work trying to be in control . We are all in this together . Karen
Enidah, that is exactly the way I feel, and have expressed my feelings, when asked, to others. I've never heard any other "Parkie" mention that they feel like the tin man in the "Wizard of Oz". I'm always telling people that, as a way of explaining what Parkinson's does to me. When I feel stiffened up, expressionless, because of the PD, I do feel awkward. I purposely go out of my way to smile and show an expression on my face, and I purposely try to walk more like a normal person would walk, when I'm out, especially in social situations. It helps me to feel better, when I feel that I don't have to give an explanation of why I look expressionless, or walk stiff like, and slow, somewhat. I just let myself be the way it is around my wife and daughter, and they commented, that I walked stiff and slow, and both of them thought I was angry at them because of my expressionless face, due to numbness. It's not easy to keep on forcing a smile, and pretending to be in a good mood, and try to walk more normally. Apathy can be a problem for me sometimes. So yes, when the meds drop out, then it's even harder to fake it, and the dyskinesia and sad like face really take over. You are right, the people that understand the best, are the ones in the support groups. I really enjoy the time with others, who have similar problems to mine, where we can assimilate, and help each other out. The support is so important to me! There are times when I've felt that the Docs only understand, to an extent, of what I am going through, and that family and friends understand to a point, and then, after a while, most of them don't want to discuss medical problems, and some feel uncomfortable with being around chronically sick people, or hearing about their problems. Mostly, I miss the overriding sense of well being that I used to have. After about 8 years of living with PD, and now seeing it progressing more to my autonomic system, it is becoming harder and harder to disguise that I have a debilitating disease. Thanks for your post!
So DDmagee1 do you feel like your dyskenesia is worse when meds wear off or when you are at your peak?
When the meds wear off it starts and stays, until I take more meds.
hi limpmaster well one think to do is stand in front of the mirror and make faces as it relaxes the face muscles i do it every morning it helps a lot if you go walking do it as you walk puff your face cheeks out when u walk you will get used to it regards john
I don't know about you but sometimes I feel I should carry a banner saying I have parkinsons to excuse all the impatient ignorant idiots who make no desire to try and understand
I concur with just about every reply above. Luckily I have the best husband ever who supports me no matter what.
He must be related to my. husband. I thought I had the best!
They can share the title! He’s generous.😉
Play a game called make six other people smile per day. Try it every day and soon will become a habit. Practice in front of mirror makes good sense too.
Best 🌞
I always explain what is happening. I tell people that I have Parkinsons. Usually I get a very positive response & understanding. I also answer any questions that people have. I think being open is the answer. Good luck.
Thanks for all the posts! Sometimes I just like to hear that I'm not the only one who struggles with this. I agree that sometimes just telling people I have Parkinson's seems to make things easier but sometimes I'm not sure if people believe me and then it's just even more awkward. I'm stiffness and rigidity dominant so I don't have a tremor to point to and say "see, what did I tell you!" And of course the fact that my symptoms at times are fairly mild so I'm on the fence sometimes on if I should even bring it up. I just come off as this slightly strange unfriendly looking, somewhat robotic guy with a mild limp. Awesome.
What led to my husbands diagnosis @ 62yr was the rigidity when walking, and the frozen expressionless face I was noticing. I would often ask “ what’s wrong ? Are you mad at me ? Of course he was not. He didn’t even know he looked like that.
That was almost 10 years ago. His progression has been slow and with various medications he including the newest Gocovri he has extended his on time and reduced his off times. He’s never really felt awkward, and prefers to discuss his Parkinsons rather than have it linger in the background. When we meet someone we will be interacting with more than once, he makes a point of telling them he has Parkinson’s and that if they notice he stares, doesn’t smile often , or has hesitation in his speech it’s because of PD . That usually makes everyone feel more comfortable.
On a lighter note: on One occasion early in his diagnosis , my husband was contacted by a headhunter wanting him to work for another company. After the interview he was given a job offer ; after a couple of minutes of silence from my husband , the interviewer who had no idea my husband had PD said “Wow you have a poker face “ and increased the offer by 10,000.
My husband likes to tell the story as it is one of the few humorous aspects of his PD. Lol
Finn3, this is the best thing I've heard in a while. PD as a negotiating strategy!
Hell yeah! I think I over think/ monitor myself often around othres and in doing so exagerate even the most mild of symptoms. You are not alone my friend.
My husband found b1 helped with his facial expressions. Getting anxiety under control helped too. See my profile for his protocol. It has made such a difference to to face! Before he was diagnosed I would ask if he was listening all the time as I would get a blank stare if I spoke to him. Now he is smily and it makes such a difference to the way people treat him.
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