Tena,

You need to relax some. Take a break from the board here. For me it acts a a reminder of what we're fighting rather than lettimg me fight my own cause. That's one of the reasons why I don't poke in here as much anymore. This becomes too depressing for me to contemplate; Almost overwhelming in some cases.

I'll be honest with you and everyone here. I put up a good front at home and at work. I try my absolute best to act as though nothing is wrong, and I can continue to persue my dreams. I practice the piano nearly every day, with my chin up and a smile on my face, even as my technique declines with some days so bad I want to cut the piano up for firewood.

But sadly as everyone knows here, deal old Mr. Parkie likes come knocking on the door when we feel our best as though to remind us that he's still around. The only thing that's different for many of you from me is you've been at this a lot longer so Mr. Parkie visits for a lot longer time.

On my good days I can conquer the world as I tell other people. Yet on my worse days, when I'm so sore, crampy, and stiff that I can't get out of my own way. It's on these days that I want to "give in" and let Mr. Parkie have his way and stay around. What the H E double hockeystick, do I care because I get tired of fighting to stay "normal". Then I stiffen my upper lip and continue to march on like nothing is happening.

John

John,

I read several of your posts last week and I completely agree with you (probably most PWPS would). what you say about putting up a goo front is so true for me. I could be writing the same, just replace piano with lab work......"I put up a good front at home and at work. I try my absolute best to act as though nothing is wrong, and I can continue to persue my dreams. I practice the piano nearly every day, with my chin up and a smile on my face, even as my technique declines with some days so bad I want to cut the piano up for firewood. "

Some days I wonder if I am fooling myself and still not accepting that I have PD. It has been 5 years since my diagnosis and symptoms are noticable, I see a change in all walks of my life (one of your other posts talks about it). Though I have a lot of support at home, at times I am lonely and feel I am alone in this battle with PD. The next day, just as you described, I try to act "normal". I donot want to accept defeat in this battle.
This makes me wonder if I am running away from reality and living in a fantasy land? Is science my escape and anchor to go on? I dont want to bring in religion and God to this post, but certainly my "faith" has been in science. Is it bordering on stupidity to think I can do something about PD and change its course? I donot know........
Anyone with similar thoughts?

Girija

I don't disagree with anything that's been said here, just want to add my perspective to the mix...

I abhor profiteering as much as the next gal, whether it's wall street, war or pharma. And I won't pretend to understand pharma business models. But I want to add that some of my best friends work in pharma. My neighbor and devoted kids' basketball coach is a top lawyer for Pfizer and an internal advocate for drug assistance programs. Another dad, whom I know from my boys' preschool, is a director of cooperative research for an Ivy-League University that partners w/ pharma. His wife is a scientist and writes clinical trial protocols. Other neighbors put 70+ hours a week in the University labs while trying to parent and hold marriages together. Yet another friend, who was the Director of Cancer Research at Bayer, now works as Chief Scientific Officer at a cancer-focused foundation. Both of our sisters died of cancer within months of one other.

ALL of these people are motivated by a love of science and the desire to help people through innovation and discovery. I used to laugh to myself about how driven and workaholic they were in comparison to myself. I don't laugh now; I am so grateful for their intelligence, passion and hard work. All of these people also contribute to charity and, while not all of them are "rich," one recently gave me $50,000 to serve people with disabilities. Just sayin'...there are lots of people in our corner.

I do not even try to "pretend" everything is all right. It's obvious that it is not. At 45, PD has ended my career and income, depleted my boys' college fund, destroyed my hobbies (flute, illustration, calligraphy, performing), devastated my body, complicated my sexuality, and frightened my children. Nor do I have faith that science or God will come to the rescue in time to restore my health. That said, I do hope that they will. So as not to go mad with worry, I also choose to believe that there will be a cure before my children are my age lest they have the mutation I do.

But here's what I do have. I have loving and generous friends. I have my adoring partner and my little boys. I have the seasons and beauty and poetry and time to enjoy them. I have a heightened awareness of the suffering of others and our connection and responsibility to one another. I have restored trust in the inherent kindness of strangers. I have faith that our doctors and scientists, while they will not always succeed in delivering on our hopes, do care profoundly and are trying their best.

I also believe that, for me, this is better looked at not as a battle to be won but as a small reflection of the universal dance between life and death, creation and destruction. On a good day (which equals peace more than mobility) I just want to dance it as beautifully and consciously as I can. We all will die one way or the other; it's how fully we live and love that matter. On a bad day, my faith is based in the knowledge that this day, or hour, or moment, shall pass. I just need to be patient. And, while I am not rushing my demise, I am comforted by my sister's final words to me, "Don't hold me back, sister. It's all spirit now."

Live to love if you truly love to live!
-Rose

Dear Rose and Girija,
thank you for the very heartfelt and beautiful posts. Rose, it's very good to hear the other side of the equation, the human side of pharmaceutical workers and scientists, which I know exist, and many, many well-intentioned people there.

I have more to say, but rushing now....hopefully post more later...
Fiona

Lovely posts, and I do seriously consider leaving the board as I'm too advanced to encourage. [Please do not post about my staying or leaving -I'm not looking for sympathy] - I'm wondering if the latter part of this illness should be public. I don't want to discourage people, and yet this is what it is...you can't deny it.

I do agree that there are many good people in pharma, there are many good people everywhere. I don't expect a healing from God, I do think that we have all bought into a lie that it's wrong to talk about our faith. Rather, it's people without faith who shouldn't talk about it publicly with those who do have it. People of faith are labeled perpetrators and silenced one way or another. When you get to where I am, no, take that back, anyone may at times, have a need to draw from others about faith. Ruler slap on the hand. This is not directed at the forum administration. Society has bought into this myth about talking about faith.

So that leaves an advanced patient with limited options. Toss in the paranoia and cognitive impairments that come with meds, and you've got a real problem relating.

I still danced the whole time at the BIO party tho. Music and rhythm, my best friends. I'm still hanging in, but barely. Called Shands, getting my referral, going for the DBS evaluation, but I've already lost much of my ability to speak, so am not sure i will qualify.

I think the people working on this illness, perhaps even more than the patients who dread getting to this point, need to see the whole picture realistically.

Stay active till the end. I still am, but won't pretend it's still easy.

paula

found this very inspiring:

http://www.youtube.com/watch?v=qx--O...eature=related

Girija,Rose,Fiona: Your Posts have chamged my mood for today, Thanks, Bob C

[QUOTE=paula_ I'm wondering if the latter part of this illness should be public. I don't want to discourage people, and yet this is what it is...you can't deny it....Rather, it's people without faith who shouldn't talk about it publicly with those who do have it....When you get to where I am, no, take that back, anyone may at times, have a need to draw from others about faith. Ruler slap on the hand. /QUOTE]

Dear Paula,

Six months ago I came to this site to learn about PD, its treatments and how people who have started on this journey before me have and are coping. I stay because I have come to care about this community and the people in it.

Personally I want to see what I am in for head on. I want the unvarnished truth...the good, the bad and the seemingly unbearable. So I am grateful for your voice here, especially because of your experience, whatever it may be.

Though I may not be able to meaningfully support you or other PD elders, I hope to one day repay the favor by helping someone even newer than I to this surreal world.

Regarding faith, I am sorry if my imprecise words offended you in any way. I actually have more than it may have seemed, and (if you don't mind) will put you in my prayers. Please consider adding me to yours...

Rose

I maintain an attitude of fighting this disorder partly in hopes of stumbling upon a cure in some out of the way corner, partly to encourage others, and partly for my own psyche. But I know that the day may, no, will come if nothing changes when I will lay down the burden or pass it to another. It is the nature of one dying to seek quiet solitude and that must be respected.

Chief Joseph of the Nez Perce said, " I am tired. My heart is sick and sad. From where the sun now stands, I will fight no more forever. " A weary man accepting the inevitable, yes. But he had first fought the US army soldiers over a journey of 1100 miles.

Even without PD we all come to the end of our individual journey and things in my life have assured me that it is the beginning of another. I cannot ask for more than that.

Girija,

Your love of science and the asking of the questions Why? and How? have kept you going. Your curious mind is always open to learning something new. This I found to be one of the best things we can do. Keep the mind working and going. I've been contemplating going back to school full time instead of the one class online bit, which I've done for ages now. I find that I am more active in the day, less brain dead than at night, and less stressed out. We'll see how that goes...

Anyway, I don't think you're in denial anymore than I am. I've accepted what I've got, and there's not much I can do about it. I can't fight it anymore than you or anyone else can. So instead of just letting Mr. Parkin have his way, particularly with the mind, I continue to do what I can while I can.

In the past few years, I've been on a spending spree of sorts. I have purchased a few vey expensive keyboard instruments. A harpshichord, clavichord, and a grand piano. These were instruments that I always wanted, but never got while I was at my peak. I always had an excuse not to. So now I figured that I will get them now while I can still play, although it gets difficult at times, and yes extremely frustrating as my skills are waning, but when I can play I make the most of it.

I've also decided to do some travelling while I am still employed and have vacation time. Last year and this year I went severe storm chasng. This sounds scary and stressful, but it is not at all. In fact it's quite amazing what we have in our world that we take for granted. The storms themselves are unlike anything else in the world, and are fantastically beautiful beyond imagination. There's no way a photograph or film will ever capture what the eye can see. They are very humbling, to put it mildly, and make us see how insignifigant as a species we really are in the scope of things. Yes there are risks involved of course, but this is sometihng I always wanted to do and decided I would do it now while I still can. Unfortunately I may not go out next year because this past trip was really exhausting for me.

So what am I saying here? There's no reason to give up unless you really have to. At 49 years old, and diagnosed 3 years ago offically with an atypical form of Parkinsonism, I did go through the initial denial phase, but in the end I decided that I'll probably live a long time anyway. This journey has only just begun, and I may as well as make the best of the *BEST* times while I can.

John