[indigogo]

I made this request 7 years ago in the BrainTalk forum; Lindylanka found it and posted it in the book forum. I'm posting it here for two reasons:

1. It would be great to get more answers
2. It shines a light on our history; what has changed; what is different

My initial observation: many of the posters are still posting; some, I know, are still around but otherwise engaged; many have, incredibly, died. But I imagine that coping remains much the same.

http://web.archive.org/web/200304112...ML/007138.html

this is the original first post in the thread; Dr. Troster has since left the UW for UNC-Chapel Hill; I should check up on him and send these latest results! Thank you -
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Today several of us (Greg Wasson, AJ Campbell, Dennis Wright, and Judi Baker) were fortunate to meet with Dr. Alexander Troster, Associate Professor of Psychiatry and Behavioral Sciences at the University of Washington in Seattle. Dr. Troster’s research is devoted to how PD is related to depression, cognitive impairment, quality of life, and coping.
Our discussion was lively and lengthy. We asked what we could do to help promote his research efforts in these areas that are not nearly as well funded as basic research, but, it would seem, just as important as we strive to live well with PD as new therapies and perhaps a cure are found.

He said two things would be valuable:

1. Volunteer for studies available near you – psychiatric researchers need more human subjects.

2. Help identify those things that make coping with PD easier and your quality of life higher.

So, request number 2 is open for your input. We will keep the thread open ended and alive for two weeks to solicit your suggestions, then compile the results and post again asking you to rank them. The final ranking will be given to Dr. Troster as an aid in his research on coping mechanisms and PD.

This is not scientific, just anecdotal, and an interesting exercise.

I’ll start. . .

The one thing that makes coping with PD easier and my quality of life higher is access to the internet that gives me access to all of you.

Thanks for participating!

Carey

[bluedahlia]

Pure force of will. An unwavering stubbornness. Too much living to do.

[girija]

Originally Posted by bluedahlia

Pure force of will. An unwavering stubbornness. Too much living to do.

Bluedahlia,
Excellent way to put it!
Yes, strong will, stubborn and too many things to live for.... describes my attitude too. Love the way you put it together!

girija

[paula_w]

Stay busy! i'm trying to get some movement in - just loaded some michael jackson into IPOD.

paula

[Stitcher]

It would be great to get more answers

So many on BT are not around (or posting) anymore, Toad, AnnT, Carol (pwnkle), ScottandCE, boilerman, Barbarb Davidson...

It shines a light on our history; what has changed; what is different?

Having a busy, knowledgeable online community makes quality of life better. Just knowing there is someone outside of my personal space is helpful.

What is different: The Internet has grown. And with it, our ability as patients is enhanced by being able to learned from the bounty of information found on the Internet. BT was not like NT in many ways. Yes, there was discussion about research and important topics, but I think these two items have evolved beyond what many of us "old-timers" had expected. This is a great thing.

I think I am correct in saying that 15 years ago, maybe just 10 years ago, there was no community, at least not as it is today. PLWP and the Dumpster Gang got things rolling. If BT had not been around in the late 1990s I would not have met all the PWPs I know today. I wasn't there, but I remember the talk about the group of Dumpsters (I think it was Dumpsters...someone correct me) who had never met one another and went to a gathering in the East (NC maybe.) I think it was the first such meeting ever and PAN was not formalized yet.

The love of a family is an important one.

As Paula said, keep busy!!
Keeping busy fosters good self-esteem, value of self while living with a disease that can (and does) steal this from many people. Also, depression is sinister and can grip anyone so quickly, before one knows it has happened. Without this to keep it moving, the mind can turn to mush...for lack of a better description. So, keeping busy, physically and mentally is paramount.

[chasmo]

Originally Posted by bluedahlia

Pure force of will. An unwavering stubbornness. Too much living to do.

yup!! being stubborn is VERY important! I think also, not expending energy (energy conservation) on things you realistically have no hope of doing is important too. Having said that, it is important to "push the envelope" occasionally so we know where the "cost/benefit" graph crosses!

Charlie

[stevem53]

I accept the things I cant change..I look at what pd has given me, instead of what it has taken away from me

And thats not the Prozac talkin' either

[AnnT2]

I try not to let the dark cloud PD brings shadow my whole life. I am at my best when I am involved in a project and, at least for a time, forget that I have PD. I try to keep my personality and not become a sad sack. I time my medicine so that I am at my best when I am out and with others. I quell my panic when I start imagining the future by telling myself rescue is on the horizon. I look at people who are paralyzed and tell myself that they wish they could be me. I steer my thinking away from total immersion in Parkinson's. Often these ploys work; other times they do not.

Sometimes when I read the forum, I wonder what each of you was like before PD. I try to be that before person to the best of my abilities.

Ann

[Conductor71]

Originally Posted by AnnT2

Sometimes when I read the forum, I wonder what each of you was like before PD. I try to be that before person to the best of my abilities.

Ann

Ann,

Thank you- You very eloquently express the profound sense of loss we might feel over losing our everyday, normal, run of the mill capabilities. Who would have ever thought that one hand swiftly buttoning a blouse could be one of the most beautiful movements in the world? We can never let this condition define us, it will never be our essence.

My son who is 4 and a 1/2 months has begun to notice my hand tremor when it emerges. I'm sad that he will never know me before PD but hopeful that he will know me with cured or halted PD. He also helps me realize that love is all that's ever really mattered anyway.

Laura

[dbiker2]

I have been asking myself that question alot lately. I continue to fall multiple times per day and each time I ask myself what is the use in trying,,, | will just fall again so why get up....why not just lay here and give up...but something in my little pea brain says.....No, you cant give up..you have to remain positive....so I get up..sometimes only to fall right back down....my body is sore and bruised from falling but I continue to get up......so I ask.....Why?.....I dont know why.