Hi Charlie, you sound so loving and mellow following my post where I sound like a ranting socialist. Pretty funny.

Bonnie

PD makes us grouchy. One cannot be in pain 24/7 and not be. I tried not to inflict my pain on others, especially may family. Luckily for me my wife and kids were understanding. (my wife is named Bonnie, incidentally)
I did not precieve your post as a rant. Just a frustrated parkie, voicing her opinion!!

Charlie

Thank you, all of you, because it does help to share the worst of times with others.

BUT... I can't stay there. This is just for myself I am saying this. I know that even sharing on this forum still leaves us feeling mostly alone. Believe me, I know the despair you are all talking about. How many times have I tried to hail a taxi, and as I lurch towards it they pull away because they think I'm drunk? How many times have people threatened, intimidated, or humiliated me on the street because they also think I'm drunk? Or don't even think that, but just think I'm crippled and want to mug me? How did it feel this year, while my students were performing brilliantly in the dance concert I directed for them, to be carried out of the auditorium writhing with dystonia in front of all the parents and headmaster of the school I still teach at? How did it feel to have my husband start screaming at me each time I had severe dystonia and ask him to help me get to my pills? How did it feel when I was in the hospital and writhed for three hours in agony, while a doctor looked on smirking, unwilling to even get me a benadryl, sure that I was faking it?

I won't go on. What I am left with:
Many people in this world are suffering more deeply than I am.
Reaching out to others and trying to use what I have learned from my experience makes me feel less self-pity, and I think increases my dopamine levels.
Making a practice of being grateful and appreciative every single day for all the good that life has given me makes me feel so much happiness.
Clinging - no, insisting on focusing on my body's strengths allows me to focus on exactly those instead of of my deficits. I danced on stage professionally this month for the first time in years.
Recognizing despair but also recognizing that it is only one lens on reality is to me the essence of a scientific approach.

Some of my heroes? Those, like John Milton and Beethoven, who created their greatest work while in great pain or disability. This is how I survive. There is work to be done, and my prayers every day are that I can see my way clearly enough to however I can contribute to that work, even if I can only lie there and send my good wishes especially to those who feel weak and sad. Sometimes I don't have that to give, and it helps to be recognized (although practically impossible!) for the suffering and fear that I am in mortal combat with daily. And I appreciate that.

But then I move my focus beyond my own concerns. It's how I stay alive.

I have had mixed feelings about how I am perceived by the world of the healthy..My family supports me, but I think my daughter is in a bit of denial about it, so I dont unload on her when Im not feeling well..When she asks me how Im feeling, Im honest about it, but I dont go into a long explanation

My friends..They all support me, but most dont understand what it feels like to have pd..How could they?..Some think I am in a serious jam, and others seem to think I can do more than I can..I had one close friend who treated me like an illegal immigrant for a while, but all of a sudden lately, he cant do enough for me..The guys I fish with, the guys that tie up at the town commercial fishermans dock where I keep my boat, are extremely helpful..If anyone of them is around when Im either loading, or unloading my boat, they will carry my stuff to or from the boat..For some odd reason, they seem to understand what Im up against more than anyone else..Maybe because they can see what I can, and cannot do

Nobody has abandoned me, but I must say that although Ive been able to maintain as positve an attitude as I can, I do feel somewhat seperate, and apart from the world of the healthy, like I live in my own little world..I relate more to people with illnesses, especially pd..No matter how you cut it, you go through a personal transition when you get dx..Reality hits home hard..Major lifes changes come quickly, and inevitably..We are akin to terminal cancer patients in one respect..They are preparing to die..while we are getting prepared to live, and to ride out the storm..and like a fierce storm, pd leaves wreackage in its wake, and after each storm, it becames harder, and harder to rebuild without help..Finances are the toughest for those of us like me, who chose to live life on the edge without the security of company benefits, insurances, 401 K's, etc..And then once I get on SSDI, and find that I can barely live on it, I have to continue working, doing the best I can without making over a certain amount so I dont get booted of SSDI..A double edged sword

When I broke up with my girlfriend I thought to myself..Who will want me now?..If I were to meet someone who didnt know me I would have to say, I have pd, and BTW Im a recovering alcoholic too..There has always felt to me like theres a stigma that comes with having pd, just like theres a stigma that comes with being a recovering alcoholic..I feel like having pd is my baggage..I often wonder how much of that is all in my head, and how much of it is fact?..I guess it is all in the eyes of the beholder

I have been getting anxiety at anytime when I have to be in the spotlight, like I did when I was a PAN Rep, and had to attend a couple of press conferences, and one reporter started asking me trick questions, that completely caught me off guard..Then I was sharing my experience, as a fisherman at a school in the city which was made up of poor, and minority kids, and I had a hard time getting through that because I stutter so much when Im trying to explain something, even when I know what Im talking about..So I choose to stay out of the lime light now, because it makes me emotionally sick, and symptomatic

On the other hand, pd has made me a better person personally and spiritually..For every weakness, it has given me back two fold in strength..For everything it has taken, it has given something in its place..I firmly believe that when one door closes, another one opens if I am able to let go of the outcome, and trust God

Lord, Thank You for what you have given me
For what you have taken from me
And for what you have left me with
Thank You for the times you've watched over me
For the times you have walked beside me
And for the times when there was but one set of footprints in the sand
Amen

You made me think of a funny line from a movie, (can't recall the name of it)

what the actress said was "either you are really rude or you are from New York".........

My friend Toby started on sinemet partly because she was getting run over on the stairs to the subway. New York is like EAstern cultures. In Hong KOng for instance they are very rude on the subway, won't give up their seats, run over you getting on and off. BEing 6'4" 220 lbs was a BIG help there!!!
HAVing said that, we had no worries putting our two 12 year olds on a bus from downtown to our apartment on the Gold Coast. The driver chided us for not having an umbrella for them. (it was raining) if you can get past the anonimity of the big city people are nice and helpful. My friend Toby talks to people on the subway all the time. IN fact she has a by-line in the metro section of the NY Times today I think!!
This has been my (pre-Parkinsons admittedly) experience in NYC.
Perhaps Fiona, you should carry a cane to give a visual signal to cabbies that you are not drunk. I sympmathize with you and wish I had an answer for you.


your friend;
Charlie

Charlie, sweetie, thank you. I try to use these instances, if I can, to do some education to others about PD. I only really mentioned them because I think I might seem like the stiff upper lip type or whatever, but I just wanted to say that I really do know what it means to suffer with this...neurological situation.

Meanwhile, I try to avoid a cane whenever possible, because if I have it with me, I start using it. I want to get my body as used to not having it as possible. It sure ain't EZ sometimes...but I do pity the poor fool who tries to mug me. He will see the Parkie Modern Dance Panda at the height of indignation and fury. It will not be pretty.

Steve said:
My friends..They all support me, but most dont understand what it feels like to have pd..How could they?..

I have to second that. Most of the time I look pretty normal. Even when I use my cane, it isn't always obvious that I really need it. Sometimes when others are around, I don't use my cane when I really should. Then, when everyone goes home, I regret it because my leg aches so much.

Last week was the recital for my students. One of the parents who didn't know I have PD came up to me when I was using my cane after the recital and said "Do you really need that cane?" My thought was, "Would anyone use a cane if they didn't need one?"

During the recital and during the refreshments afterwards I am sure I looked very normal. Only one family offered to help me load all the stools and music stands, etc. into my car. I had had my husband help me take everything I needed to the church where the recital was and I thought I would have plenty of helpers after the recital, but it seemed like everyone had left before I knew it. Once I got home and changed clothes, I collapsed on the couch and was useless the rest of the evening. I left the flowers I had been given on the kitchen counter and my husband had to put them in a vase for me. I told him to go get take-out because I knew I did not have the strength to cook dinner. How could anyone understand that the recital would take so much out of me? I am sure they went home and had normal evenings. Next time I should tell people I have PD and it is hard for me to do all this. I know they don't realize you have to hold the cane with your good arm, and it is hard to carry anything with any weight with your weak arm. It is hard to ask for help when you are used to doing everything yourself.