i remember getting stares in my pre-DBS days. I really don't care if people stared. I REFUSE to let others have power over me. IF some one was overtly staring at me I'd usually stare back, with my "half-crazed" look, or tell them that "I have PD". IF someone cared enough to ask me, I'd give them the short Young Onset spiel.

You do not owe a waiter an explanation, that's what they are there for.

I find that if you tell people whats wrong and that you could use some help, they will go out of their way to help you. I guess having a radar for who's nice and who's not doesn't hurt either.
On my way back from YOPN US Air's Airbus lost pressurization and had to divert to Denver. I was parked for 45 minutes and totally ignored. I was reduced to tears.

I called my wife and she told me to hand my cellphone to the first employee I saw.
I handed to phone to a lady baggage handler from another airline. SHE was GREAT!! She was SO kind! SHE got US Air to take care of me. She even got me some lunch.
My struggles with US Air did not stop there, but that's another story. I'd still be on the airplane at Burbank if the pilot had not helped me off. You almost need climbing gear to rappel down the airstairs of a commuter jet!!

So what I am saying is to look for a kind face and don't be afraid to ask for help. Most people want to help, they just don't know how, and they do not want to invade your space without permission. Screw the rest of humanity!!!


Charlie

Ok I think I understand what you are thinking and want to clarify something. I do not feel anything but empathy with people who are disabled. I learned teaching them that they have a special bond, they don't sweat all the small stuff because it's such a struggle to get through their day.
They spend much of their time in pain.

But Ken, I have to say, that if the kids who are old enough to possibly want to discuss feelings of being embarassed or socially isolated, I would let them release those feelings. That's different from having the attitude you are suggesting....it sounds like you are taking it as "looking down on them" "feeling pity".

When I knock over a pitcher of orange juice at a restaurant table and people look at my facial grimacing or involuntary movements as I scramble to minimize the mess, I feel kinda humiliated.

And as Carolyn said, and it applies to me too, I can look and sound drunk from either being off balance, dyskinesia, or dry mouth.

OK I'm not going to prolong this but wanted to make sure you understood.

paula

Socially embarrassing I understand ,but i'm only embarrassed if I get lazy. When I begin to expect others to do for me. This isn't their charge in ife. It's mine. I was knocking over drinks long before I had PD, so to that extent I'm embarrassed. I came out of a 7-11 and stumbled the fine man parked next to me didnt ask if I was Ok. he pulled out his cell phone. 1.5 miles later 3 troopers boxed me in an intersection asking me for a field sobriety test, at which I politely declined. I explained my neuroligist gets my chicken dance card. I went to see the rolling Stones. As it ended I went "off" I passed on elevators and wheel chairs and walked that 10 minutes journey in 56 minutes My friends and family and I told jokes the whole way. BTW the tortuse and hare story is true. Yesterday my meds hadnt quite kicked in when the sprinkler kicked on I was still soaked when I got to work. So I am not embarrassed i plan my day so If I get any assistance great if not it may look like Im standing but Im really walking. If i knock it over, fall in it or play mr freeze I remain proud of my efforts.s I'm saying as much a I understnd your feelings dont become imprisoned because of what someone may think. When they comment on th drink just say 'oops were a couple" knock over another and leave a good tip. I see nothing but inspiration from this great group Thank gain you just make me think how lucky I am Im playing in a PD golf event Monday. Those course rangers will have their hands full speeding us up
18 holes in 7.5 hours. Only PD could allow me to do that
Bob

...sitting on the fence here cos I see both sides of the coin and have had the worst day of my entire PD life SO DON`T ANYONE HOLLER AT ME...OK?

Firstly Ken...Paula is right.PD can be a publically humiliating disease.By its very nature it is not a quiet discreet illness. Hmmm Let`s see...broken leg...arms flying about....broken leg in pot....arms socking somethng off the shelf...broken leg in pot in wheelchair....mega dyskenesia,incontinence,slurred speech blah blah blah.
I know which I`d sooner have. BUT...I didn`t take Paula`s statement to mean anything other than an observation,certainly not a deflammatory remark against anyone witih a disability.

Now to balance this opener out....or else I will be shot down in flames.Ken...your attitude is terrific,really.Much the same as most folk here,Paula included.As humiliating as this illness can be...I agree..it is the way we handle public situations,and we can try to turn any potentially ground swallowing situations into a light hearted moment if we are quick witted enough,feeling smiley that day,or strong enough to laugh at ourselves.
Some days we can...some days we can`t...

But just to wind up...how`s this for a list of humiliating moments/ no...actually..we are all due for a laugh...will open a new thread.
Thanks Paula
Thanks Ken
hugs
x

Thank you Steffi that made sense; Ken and I problably agree more than disagree in the end. Bob T ,humor is a must for me..it's who I am. Thanks for your post. I will say that I have added a fair amount of self deprecation to my personality; it's that or cry. I'll take a laugh anyday.

paula