There are many situations that we have to adjust to as our Parkinson's wends it way through us physically, and I, like the rest of you, deal with them as they emerge and do so to the best of my ability.

What I cannot bear is the over solicitous approaches from friends and acquaintances, especially in a social situation. It is downright unnerving to enter a room and have people scurrying about to get me a chair, a drink, a stuffed mushroom, etc. Then one by one they "visit" me at my assigned (by them) location, engage in some perfunctory small talk, and then walk away. I sit haplessly balancing everything they have bombarded me with, looking like that token elderly lady you see invited to parties out of respect and stashed in a spot away from of the social interaction. I have Parkinson's, not leprosy. I have not lost my mind, at least not yet. I still have ideas, reactions, contributions, etc.

I do not know how to handle this. How do you do it?

AnnT2

Ann, do you need to sit in a chair? Maybe you could move from chair to chair. Or if you can stand for awhile, come late and leave early? I would hate being fussed over like that. I get more fussing because I'm so thin, so if people say something about it, I snort and ask them if they'd like to arm wrestle. I think sometimes we almost have to be rude to get the message across, that we don't need or want any help, and I'm not a rude person normally. But they're making us uncomfortable, and if they can't take a hint, what can you do. If you don't need the chair or the help, a blank stare and a simple "No" would probably prevent another attempt at marginalizing you.

If you do need the help and the chair, I guess you'll have to become an amazing conversationalist that everyone wants to spend time with! Or choose your chair very carefully. I have a friend who is very sociable and has lots of get togethers. Everyone tends to gather in the kitchen while she finishes cooking, and I try to get one of the stools at the breakfast bar since I don't really like standing around with a drink in my hand, it's one of the few times I'll have a bit of tremor. The chair on the edge is the most central one, and I try to get there first!

If possible, I speak to my host/hostess ahead of time to point out what works for me, which eliminates their need to dance around the issues and guess. I explain to guests that my reaction time in conversation is a bit longer than normal but if they will be patient, I will respond to comments. I find it is difficult to juggle several conversations at once so I often try to talk with either one person or several people on one topic. "No thank you." serves me well. I also try to avoid just talking about PD as that gets tiresome for me and them. For about 1.5 years I was unable to use my right arm and hand. I asked people to be my designated food cutters, asked for forks in lieu of chopsticks, sat before holding my newborn grandson and avoided soup. We had a lot of laughs and, amazingly enough, with the combination of Sinemet, PD Dance and cycling, I regained the use of the arm and hand about 6 months ago. I still ask for early boarding on planes and don't hesitate to tell people what works for me. They seem grateful for the directions.

As my mother would have said, "AnnT, you'd complain if you were hung with a new rope." I say this with a great deal of affection, and I hope that you understand that the fact that the rope is new doesn't make the hanging any more comfortable.

I don't know what made me log onto Neurotalk today, but it is fortuitous indeed. I got your email about the PAN Forum. The short answer is we very much hope to go, but 2013 and 2014 have not been the kindest of years for us PD-wise. AJ's survived four months in the hospital in 2013 (June to October) with a C-difficile infection resulting from an ill-advised prolonged course of antibiotics to cure a PD – related infection in one of her toes. The hospital experience was an unbelievable nightmare which I think I wrote you about (but I’m not certain), and we have spent most of 2014 totaling up the losses and trying to recover as much of our former capacities as we can. I spent almost the entire four months battling (successfully, thank God) with doctors, nurses, and hospital administrators to be allowed to determine AJ's Parkinson's medications needs. After screwing up her medication schedule so badly that she fell into a full-blown psychotic episode, AJ was strapped into a hospital bed for three days with wrist and ankle restraints and a chest vest (that amantadine can be one mean drug). It took the intercession of Dr. Carolyn Tanner of the Parkinson’s Institute on AJ's behalf as a personal favor (Dr. Tanner had no admitting privileges there and our own doc was away so she just plunged in and read them the Riot Act based on her reputation and sheer nerve and got them to cooperate), to correct her medications and restore her sanity.

That was only the most dramatic example of the incompetence of the staff at what I had always assumed was a first-class hospital. When Ann was finally discharged last October 2013, I had spent nearly all my waking hours at the hospital or a rehab facility to make sure that future errors (and there were many) were quickly spotted and corrected. Unfortunately, the schedule was necessarily punishing, and my own PD progress was substantially accelerated along with AJ’s.

Which brings me to the question that you asked in your email about the Forum. Our plan is to go. We have made travel and transportation reservations and taken scholarship money, figuring that if people with NO legs can travel successfully, then two people with serious gait and balance problems can as well.

Plus, I'm still on the board of directors, and there'll be a board meeting to coincide with the Forum, which makes it that much more important to be in DC at the end of March.

Sorry to seize your thread as an opportunity for personal communication, but I seen my chances I took ‘em. Besides, I think AJ's hospital horror story may be instructive to readers of this site that have not yet have the opportunity to experience a hospital stay post-DX.

As to your actual question about experiences at social events, yes, I have found that on occasion other attendees or the host will be uncomfortably solicitous for five or 10 minutes, and then compound their faux pas by deserting myself or AJ. But as you and I have since we first got to know each other on this site some 15 years ago, I think we still have a fundamental disagreement concerning the treatment of the disabled by the healthy public. I love and admire your insistence on not being treated as an object of pity and incapacity. I have been in those kind of situations and find them embarrassing and insulting. But I have also found myself grateful when the flight attendants at the end of an Air France flight stayed with us when we couldn't disembark because the jetways were all taken and we couldn't descend the steps of the push-up stairs wheeled out for the passengers because PD-impaired depth perception made it impossible to use them. Maybe they had nothing better to do, but the fact that several attendants sat with us for 40 minutes while the flight crew ordered a food service truck with a variable level loading platform to be driven up to the rear exit door to allow us to deplane without using the steps was a true kindness. AJ was so frustrated by our not being able to walk down the same steps as everyone else after a long flight that she began to cry (something she rarely does), and it touched me to see three flight attendants comfort her and hug and reassure her.

But as I have since the beginning off our acquaintance, I admire your refusal to give an inch to this disease until it is ripped from your bleeding hands. May you continue to rage against the dying of the light until well past that time when all the candles have been blown out.

I will write you. One reason I put so much information on this post response is because I'm not certain that my last few emails to have been received. So I'm going to send you one today or tomorrow. It will contain info and news more appropriate to personal correspondence.

With great affection and admiration,

Greg

Wendy, Nan, and Greg - Thank you for your replies. I did gain some helpful and practical ideas on how to deal with social sitations.

The thing is that Parkinson's has taken a lot away from all of us, but I refuse to let it define me one inch more than I have to allow. I am more than a person with Parkinson's. I won't allow people to forget the person I really am, the good, the bad, the indifferent. Pre-PD, people at a party would not hasten to find me a seat and that portrays me as helpless. I can find my own seat and I will sit in it only if I want to. And please, don't interrupt me to ask about my health. How am I supposed to answer that? Seriously! Just let me be like all the others in the room, a person who is not perfect but is given equal treatment.

I know this might come off as harsh, but so be it. We are all a courageous lot to put up with this disease.

So many times everyone has a tendency to think that what they are going through is a personal fight to the finish and they waste time in theeir lives dwelling on what others see and think.Why care if anyone thinks you need help just be gratefull they do for as with us all someday we will. accept their kindness as it is and not as an interference in your personal space.

i have as well as AJ come through hxxl in the last few years which now sees me for going out in a wheel chair. I loath it. I am old as well and sit and listen as those around me talk to my daughter about me as if I am not there. My health and my walking has reduced me to the unseen of this world,

Shall i now say i am sorry for what you all are going thru or should i say get off the pot and worry about what is really important, your health and your friends and your loved ones.

Over xmas this year I learned that a man who I have loved since i was in my twenties has died and that has left me as lost as I will ever be. If he were here I would smother him with help and care and to hxxl with worrying whether it was too much and today I would let him carry me without a care in the world. Value yourself and whatever is beyond let it be and now we will have Greg play it for us.

Like you, Thelma, many oi us have other troubles we have to bear. My mother used to say (when I complained) , "If that is the worse thing that ever happens to you (regarding whatever I was complaining about), then you will be lucky in life." Parkinson's is not the worse thing that has happened in my life, but it does rank up there with authority.

There are many scholarly posters who are investigating the various possible causes of and solutions to what makes Parkinson's what it is and what it does. I am grateful to them for that. However, I also need help with the emotional and social aspects of this disease, and that is where my vulnerability comes is.

Perhaps I am a complainer, but I must say that if I can not come to the forum with some of these frustrations and worries, then I don't know where I can vent them. I do know that the "Snap out of it" approach does not help.

Ann

I personally feel that you should feel free to come and vent and share whatever about PD you are dealing with or wondering about. If someone does not want to read or respond to your post, they can ignore it. Venting is therapeutic for you and may help others feel that they are not alone. Someone may learn something helpful, too, and that is always a good thing.

I would hate to think that someone would be fearful or reluctant to come here and share/participate. That is so isolating and I doubt this forum was ever meant to be like that. So please feel welcome to be open with your posts: this is the one place of all places I know where one should feel free to throw out there anything about PD they are dealing with.....and hopefully someone may have a helpful post, even if it is nothing more than "Me too, you are not alone"

Ann
I have been on thlis site almost as long as Greg and while I don't have PD I have a lot of contact with those who do. What i said is for you to attain relief in my way of wording things. Things hapening in our llives can drive us to despair as it did with so many others here and elsewhere. Some from here and Braintalk has gone that route and will be forever in my mind.

I called john Lester once and told him that I had received a call from a woman and she was so upset I feared for her and she died that night of what her emotions were doing to her. There was an uproar of anger directed at john and some of us members and I too.

so I just mean that finding a way to eleviate all the hurst and worries has to be found for us all or we are lost.

This site for me and others is too valuable to ever loose as we learn to cope and fight this plague Parkinson's.

The world doesn't see thils as a plague but I do and today in the Vancouver Sun are 2 more decent caring wonderfull human beings that have died of Parkinson's

Parkinson's kills Say it loud and say it proud

And remind everyone you meet that that is the true fact

Ann for what it is worth may i be your friend