No worries Bob. Stay as you are a great contributor to this forum. I don't post as often as I like because my dyskinesias are bad and I get frustrated with my lack of typing skills. This from someone who used to type 90 wpm.

and no two alike. interally, it's completely individual.

Bob,

i truly enjoy your posts because they are witty. Blue Dahlia has been thru that ringer and breast cancer too, so sensitivity is there. that is to be expected when the stakes are as high as turning away from your loved ones and becoming unable to get enjoyment or satisfaction [relief?] from things we can no longer do..

so now we are sitting here with voices that need to be heard, not hidden. I'm sorry but i didn't understand your post about anuket.the last one. could you explain it i enjoy your humor - it is sophisticated - like jingle's poem about GDNF. Actually Bob, i've already quoted you in the book but there is another reason i hope you and others post

I developed the computer habit while on mirapex, but so did the rest of the globe [ go on the computer] that had access. it never occurred to me that mirapex was causing it and i truly don't think it was the reason that i got so hooked.

we have a story to tell right here right now.

we are really quite heavily invested [not financially] in the neurotalk book and want to spend more time in the present. THere is so much going on now and everyone is trying and many read and mock because we spill our guts. they operate in a different dimension. They[pd medical and academic community] have tried with us some and I'm grateful, but we are at arms length. not enough.

thanks,
paula

Paula,
Thank you. The last comment about Anuket: two PWP (JimmyBear and Madman Marty) told me about the YouTube from the Mayo Clinic and they were quite agitated about it so I asked Anuket to do what she always does- she does not just read the abstract, she gets the whole science report and often tears it to shreds, showing that they do not have nearly as much evidence as they claim, and asking the scientists to show her where she is wrong.
YouTube's have a comments section, so I posted there, and Anuket posted 6 times in their comments section, with details about the research, showing it is shaky. And they deleted her posts entirely! Because of that, I came here and started this thread - and lo and behold, Anuket posted again on the Mayo YouTube, and this time they did not dare to delete her. Your website cannot be ignored by them. They can't have a comments section about PD and then delete what PWP say.
And the response here makes me very proud of all of you. We can all agree or disagree with Anuket, but NOBODY gets to delete any of us when it is the comments section of a report about Parkinson's. I am still angry about Amgen, where it's as if they wanted to delete 48 life stories. Whenever they expect silence, we stir up the debate instead. And we would do that for each other, even if among ourselves we have different stories to tell.
The apparent attempt to silence one of us created this thread, which a thousand people have now read.
We are not whispering any more.

We all want our lives to be remembered. To know we will be remembered with kindness and love with fond memories. To believe we made a difference in someone's life.

For years (about 30) I have been apart of a family of friends based on music. I have played with the same individuals for several different theatre groups around the city. I think of the people I play with as extended family. They have been supportive by giving me rides, helping carry my junk, and accepting who I am. Last year, the calls to play unexpectedly stopped. I was devastated. My husband was still called to play drums but I was not called. The show required a person with my talents, but another person was asked to play the part I usually would play. I lost my support group in one show.

The director of the pit and I have been best buddies. I never asked him why he didn't ask me but replaced me without giving me the opportunity to do the show. Last week my husband was asked to fill in for another show. He was given two comp tickets (free) and I came to see the show. It used a rock band. One person was there whom I used to believe was a close friend. I was sitting in the lobby waiting for the house to open up, and she was standing directly in front talking to someone I didn't know. After about fifteen minutes, I stood up from the bench I was sitting on and stood next to her. She kept talking and looked annoyed because I was obviously listening in. She finally directly looked at me and said Oh hi, I didn't recognize you, and then continued to talk avout a show she was currently doing with the unknown person for about 10 more minutes. Turns out the other person was a French Horn player also in the same show.

I sat by the two of them and felt like an outsider. I didn't enjoy the show and afterwords asked the director why he never called me to play. He looked embarrassed and mentioned the replacement player by name and I left feeling ashamed and angry. As I rattled on on the drive home about my anger and hurt, my husband reminded me that the last couple of shows I had participated in, I had unexpectedly quit playing and once did not show.
After sitting in schock and silence as the pain of his truth shot through me. I was so hurt I couldn't even cry. We got home I took my pills with a generous amount of rum and crashed for the night, my husband crying and praying in the other room. It took him alot of courage to be honest with me.

We are told to keep involved in social groups, but the unstable nature of our disease makes this impossible. For us, it means from diagnosis to death a steady series of mournings as we release the social groups we feel make our self image and keep us happy and involved in the world. We keep opening a new door with some other activity and once more go through the same experience.

Acceptance that it is not our fault, and unfairness is a natural part of life is the only way to keep sane.

Peace to you all,
Vicky

Kate Kelsal at Shake Rattle and Roll got back out there with her accordion.
Thing to do is create a rival music group with supportive people - play on street corners if you have to, play for other PWP to dance, play for school children, play for elderly, play and sing and dance and shout for no reason at all - - but tell people, well i used to play music with those people but with PD they pretended not to know me - you know, the French horn is really elite... play whatever music you can to people everywhere you can. DO NOT GIVE UP THE MUSIC and do not hesitate to tell people about your friends of 30 years who are too important to see you now.
We are not the ones who have to whisper.
We were born to howl.

And like BlueDahlia earlier in this thread,
get really ****** off.
It helps.

From Carl H. at I Has the Parkinson's:
http://www.ihastheparkinsons.com/

PD Causes Disappearing
Yep. It’s a real symptom of Parkinson’s disease. And though it can happen to PwPs themselves if they are not careful (people with Parkinson’s), it usually happens to those who are around us.
I just lost another friend, or at least someone who I thought was going to become a friend, to this symptom of PD. You probably have experienced it yourself if you have Parkinson’s disease: you meet someone, hit it off right away, have some fun together, maybe even find a special connection.
Then WHAM! They disappear.
Yes, they learn you have Parkinson’s disease and before you know it, they are gone. They suddenly go into nothingness, and we do not see them or hear from them any longer.
Not all are new people. Many are old friends. Some go quietly. Others loudly.
But in many cases, or sadly as in my experience, a majority of one’s companions can be struck down by this horrible symptom, and off they go, beyond the range of your voice, the reach of your telephone, the sending of a letter or email. They just go away.
Recently one of these people who caught “disappearing” from my PD actually had the nerve to claim I had created it as an excuse to never see them again.
That’s right, bud. I just invented this entire blog and got some different colored Pez to pretend it was medicine and then arranged so I just look and act like I have Parkinson’s disease because I was really trying to find a way to get rid of you.
Give me a break!
Interestingly enough, of all the symptoms of this terrible disease, this symptom is the most preventable and even curable. If you have Parkinson’s disease there is just so much you can personally do for these once visible friends and companions (it can even affect members of one’s family). But if you find yourself suffering from “disappearing” due to someone else’s PD, there is treatment. It is but a phone call or friend’s door away.

I was ashamed for puting my friend, the music director, on the spot by asking him to explain the obvious. My husband was correct to point out that I could not longer keep up the level of playing required for musicals. I still play in a community band, just not at the level I was accustomed too. I have not given up my love of music.

The flute player, whom I thought was my friend, turned out not to be. The director's and my husbands honesty were to be commended. My reaction was selfish. I can't always be angry with myself, but must accept that this was a situation which was no one's fault, and I was not a victim. I was trying to make the point that we have no control over the results of living with Parkinson's. It is how we deal with the losses and start knocking on other doors to open that will strenthen our character. Not how loud and angry we can get.

It is not about Mirapex, doctors, levadopa or pharmacists. It is about accepting that bad things happen to good people and how to continue to grow as a person and accepting it as a part of yourself.

Peace (I really mean it),
Vicky

Blue Dahlia, I used to type 100+ words a minute with 0 mistakes. Know what you mean.

Peace.
And beauty.
And love.
Believe in its power.
Your faith shines through.
Sometimes I can do that; sometimes I start to growl.

Thank you all.
Don't try to move my mountain; teach me how to climb.

I really must go and deal with some local situations for a bit. I think research would show that right now I have the addiction Paula described. Take care. Peace.

Sometimes Parkinson's does make friends vanish. People who start out caring and supportive but disappear when our symptoms become obvious or we aren't on the fast track at work or our spouses leave or our lives hit a sour note in some other way. The people who are used to seeing us stand tall and walk confidently and succeed in our own little realms suddenly see us differently, and the picture isn't so appealing so they just move on, before they catch it, or catch the feelings about it. It is painful. We don't get to walk away. Crawl maybe, but that is also an unappealing image.

Parkinson's brings many changes and maybe the worst aren't even the disease itself. I have to keep looking for that new door to open, that new future that has some opportunities.