[bandido1]

Girija: Kudos to you! and others (including that nice lady who has been reading our posts-Thanks Debi) who are colllectively and unselfishly trying to help Steve.

You all deserve trple A"s for advocacy,activism and altruism. Bob C

[paula_w]

I attended a luncheon at BIO that had a panel discussion on obama's healthcare plans. the participants were Ted Daschle, former Sen. Fritz, Howard Dean, and Karl Rove. They were sitting in front of a huge room of free market enterprise businessmen and remained friendly and reasonable. i could even agree with Howard Dean...lol.

anyway, they all agreed that we need to keep a combination of private and public options, no one wants all public. Obama is moving quickly, which concerns me. They had different approaches to suggest, for ex. Dean suggested letting everyone opt into medicare or tax gasoline.

The only thing that bothered me and this is a big heads up - is the "threat" to move quickly in the senate, (the house is a majority wins protocol but in the senate you need 60 votes) or the number needed would be dropped to 50. Is that constitutional? Obama wants something in this year.

Anyway, i rely completely on my private insurance for meds and felt better after listening to them.

They all agreed tho that it would be a gradual "ramping" up of change.


As for the state of the board, it is what each individual makes it. if you don't post, well......

excuse me but my doctor actually mentioned a feeding tube yesterday. board posts quickly go into a minor priority but i know everyone isn't where i am. this illness becomes a monster. i asked about a weight lifting program and she said, you are exercising all the time with dyskinesia. i was glad to hear someone say that...always thought so.

i'm vigorously exercising as i type this ,
paula

[Jaye]

I came here in '99 and first met another member in person later that year. Since then I've met, oh, dozens, some of them now very near and dear by now. I'm bad at keeping up email correspondence. I like to visit people, for example, Paula, whom I've made maybe a dozen trips to Florida to visit, not that she lives near a beach or anything. But she hates it when I cry, so I'll say no more about her post above, for now.

So. About the forum. Yes, it comes and goes and will enjoy more peaks and valleys. I think it's healthiest when new people are greeted sincerely and maybe fostered a bit in PMs. The way to have more intimacy, IMNSHO, is to become more involved in caring. I haven't read all the threads yet, but I wonder how many people have welcomed rose or asked her whose heart she refers to. So, rose, who is he, this romantic admirer of yours? I'll look for your reply in the check-in thread, or anywhere else you want to put it.

I've been away, too, traveling and dealing with medical issues and remodeling a kitchen--ack! --difficult but fun. I don't know why I don't post so much any more. I suppose it's that I've just said it all so many times and don't want to spend the rest of my days talking about PD to the exclusion of everything else.

Sleep. Now.
Jaye

[Fiona]

Steve,
I really, really feel the heart of what you're saying, the concern about all the PWP who suffer alone, who need so much. I think about them all the time, and god bless you all who don't feel so overwhelmed that you can find ways to reach out to whoever you can.

I've heard of some societies in other cultures where if somebody in the community is sick, everybody works on it with them every day until they get better. In other words, sickness in one person is not seen as separate from everyone else, but recognized as a problem for all. This is so different from the way that the sick are isolated in our society, and foolish, too. If people are getting ill from pesticides, the sooner everybody looks at that, the better because it's going to hit them or theirs some day. Not to mention the humane quality of embracing the stricken among us. As I said in another thread, I've been trying to read about AIDS activism lately because it offers some very good ways of doing things. I think about many of my friends in NYC who devoted a day a week working for GODS LOVE WE DELIVER, bringing cooked meals to AIDS shut-ins.

My problem is I still feel so overwhelmed about trying to deal with my own life and body, that it seems as though I don't have enough to give. I think this when I think about political activism in general. That's why I've decided that the first and best thing I can do is to get myself better, any way I can. That way I will have the strength to help people. Plus anyone that truly can get this monkey (no offense intended to our primate buds!) off their backs, will truly inspire people. It's great to endure suffering with grace, and that carries its own inspiration, but really overcoming this thing is what will lift people.

So I've come to regard my body as my personal Darfur, as it were, the stage which I have been given to battle darkness, and hopefully whatever I can achieve there will eventually be of great help to somebody, and hopefully I will gain enough energy back to minister directly to others in need.

[jcitron]

I go through fits and phases with the many different forums I belong to.

Neurotalk has been one for inspiration for me. You people here have helped me focus my energy on asking the right questions when going to my neuro, and acting as a soundingboard when I'm frustrated.

Right now, I'm refocussing my energies to a full-time education program, and pulling out of the workforce and online classes. So if I don't post too often, well my little bit of energy I have is put in another direction.

Sadly I have to admit that I'm not as energetic or as pain-free as I was three years ago. I ache miserablely most of the time, and my coordination isn't as good as it was. This aspect is killing my mentally as well. I find that this whole evil thing we call PD eats at the soul as we watch our abilities wither away. It's like saltwater being poured on a statue. As the water trickles down, it eats through the stone structure so there's nothing left in the end.

The summer time too will cut back on number of posts as people spend more time outside and away from their computers.

Even though I am single, and share the house with my siblings and elder parents, I am alone in this journey except for Neurotalk. No one else around here understands what I am going through. My family assumes I will always pay the mortgage and other expenses. They don't seem to get it that my income is now 50% of what it was a year ago. I'm working part-time now, so there's less money. My company was nice enough to continue to pay my medical bills, but for how long? Once the company closes, I'm SOL and will have to pick-up very expensive medical insurance as well.

Anyway, boards morph as time goes on. New members come in and old ones go away as they focus on other things in there life. I know that I'll always poke my head in here and say hello when I get a chance. You are all in with my best friends, which I have very few of.

John

[pegleg]

Hi Steve

I'm pretty sure we met at the World Congress in Washington, DC. I remember you coming straight up to me and saying, "Now there's a familiar face I recognize!." You probably wouldn't recognize me now. I have lost a lot of weight (about 45-50 lbs). The weight loss is probably due to both dyskinesias and a fissure that developed in my throat following cervical spine surgery. And whenever I go "off," swallowing is a very real problelm. I look 10 years older in the face, so I took my "young-looking" headshot off the forum. I suppose I will have to surrender to the fact that I now have to put on make-up with a pallette knife, but I'll wait for a better picture to put out there on the web. lol

I have worked a lot (volunteer "work") with GSK on patient advocacy stuff. I do know that they provide financial assistance in several instances, which can be found here at this link: http://www.gskforyou.com/ . Look it over, and if you have any questions I have a good friend over the Requip product division that can help better explain the programs offered.

Hang in there, my friend. I am truly blessed to have been able to keep supplemental insurance after disanbility. However, my husband has since retired and my premium alone is nearly $400 a month! (That's still a lot less than what my meds would cost). But I thank God that I have it made in comparison to many who come here.

Again, I want to re-emphasize that somebody with the resources and energy needs to step back and look at the "state" of the babyboomers. Not to negate the elderly PD patients, but young onset patients are doomed to horrible side effects due to long-term therapy with our present medication regime. They also are having to leave the workforce much too early and have families to raise, plus fighting this PD battle for twice as long as the later-diagnosed patient. If you were young onset say 15-25 years ago, our problems are really just starting to surface now. We really need to find strong support somewhere and fast (more than just a support group or annual conference)!

[pegleg]

John
I just read what you said:
Sadly I have to admit that I'm not as energetic or as pain-free as I was three years ago. I ache miserablely most of the time, and my coordination isn't as good as it was. This aspect is killing my mentally as well. I find that this whole evil thing we call PD eats at the soul as we watch our abilities wither away. It's like saltwater being poured on a statue. As the water trickles down, it eats through the stone structure so there's nothing left in the end.

Man, can I relate to your pain and enenrgy levels. I just wanted to tell you that your analogy is on the mark, except for the last few words . . . "there's nothing left in the end." My faith has sustained me - my hope that we go on to another place and get new bodies and are pain-free (dyskinesia-free!) and there is no sadness.

Even if some of you don't believe in an afterlife, remember that our attiude is all we have when things are looking down. Unlike MJ Fox, I am NOT "always looking up." But people such as the ones in this forum remind me that I am not in the worst situation, and I am the only one that can change the way I think. And hey, I'm not scolding anyone about negativism. I have had battles with depression for years. And I have come to learn that I cannot point my finger at my alcoholic father for my situation,, nor for the things that happen to me (like losing a career I loved to this #@!$% disease).

And even if you don't subscribe to the Christian "attitude," it's an attempt to live thinking positively. So here are a few quotes just to hopefully get anyone reading in the right frame of mind (I sometimes put them on 3X5" cards where I know I'll look frequently: on the mirror over my sink or on the sunvisor of my car where I can see it every time I look in my rear-view mirror (oh yeah, and on the refrigerator door! lol)

When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us. ~ Helen Keller

What lies behind us and what lies before us are tiny matters compared to what lies within us. ~Walt Emerson

Life is 10% of what happens to me and 90% of how I react to it. ~ John Maxwell
If you don't like something change it; if you can't change it, change the way you think about it. ~Mary Engelbreit

The sun shines and warms and lights us and we have no curiosity to know why this is so; but we ask the reason of all evil, of pain, and hunger, and mosquitoes and silly people. ~Ralph Waldo Emerson

Oh, my friend, it's not what they take away from you that counts. It's what you do with what you have left. ~Hubert Humphrey

To be upset over what you don't have is to waste what you do have. ~Ken S. Keyes, Jr., Handbook to Higher Consciousness

The thing always happens that you really believe in; and the belief in a thing makes it happen. ~Frank Lloyd Wright

(I hope I didn't preach too much - I just empathize with how you guys are feeling).
Peggy

[stevem53]

Originally Posted by pegleg

Hi Steve

I'm pretty sure we met at the World Congress in Washington, DC. I remember you coming straight up to me and saying, "Now there's a familiar face I recognize!." You probably wouldn't recognize me now. I have lost a lot of weight (about 45-50 lbs). The weight loss is probably due to both dyskinesias and a fissure that developed in my throat following cervical spine surgery. And whenever I go "off," swallowing is a very real problelm. I look 10 years older in the face, so I took my "young-looking" headshot off the forum. I suppose I will have to surrender to the fact that I now have to put on make-up with a pallette knife, but I'll wait for a better picture to put out there on the web. lol

I have worked a lot (volunteer "work") with GSK on patient advocacy stuff. I do know that they provide financial assistance in several instances, which can be found here at this link: http://www.gskforyou.com/ . Look it over, and if you have any questions I have a good friend over the Requip product division that can help better explain the programs offered.

Hang in there, my friend. I am truly blessed to have been able to keep supplemental insurance after disanbility. However, my husband has since retired and my premium alone is nearly $400 a month! (That's still a lot less than what my meds would cost). But I thank God that I have it made in comparison to many who come here.

Again, I want to re-emphasize that somebody with the resources and energy needs to step back and look at the "state" of the babyboomers. Not to negate the elderly PD patients, but young onset patients are doomed to horrible side effects due to long-term therapy with our present medication regime. They also are having to leave the workforce much too early and have families to raise, plus fighting this PD battle for twice as long as the later-diagnosed patient. If you were young onset say 15-25 years ago, our problems are really just starting to surface now. We really need to find strong support somewhere and fast (more than just a support group or annual conference)!

Yes, we did meet at the WPC...
It sounds like alot has changed in the progression of your pd since I met you, and I am sorry to hear that..but your spirit sounds good, and that is a good thing

Thank You for the link!!

[rose of his heart]

[QUOTE=paula_w;516176]As for the state of the board, it is what each individual makes it. if you don't post, well......

excuse me but my doctor actually mentioned a feeding tube yesterday. board posts quickly go into a minor priority but i know everyone isn't where i am. this illness becomes a monster. /QUOTE]

At 100 pounds and still losing, I am sad and startled by this, Paula, but grateful for your candor. I have learned so much from your posts...thank you. I know you already have lots of friends here but want you to know that you are in my thoughts and prayers too.

[rose of his heart]

Originally Posted by Jaye

About the forum. Yes, it comes and goes and will enjoy more peaks and valleys. I think it's healthiest when new people are greeted sincerely and maybe fostered a bit in PMs. The way to have more intimacy, IMNSHO, is to become more involved in caring. I haven't read all the threads yet, but I wonder how many people have welcomed rose or asked her whose heart she refers to. So, rose, who is he, this romantic admirer of yours? I'll look for your reply in the check-in thread, or anywhere else you want to put it. Jaye

Thanks for the big welcome, Jaye. You made my day! I am a poet, mama, professional fundraiser and newly dx PWP. My lover of 12 years, who joined our family (myself, boys 7 & 9 and an occasionally present prodigal Papi) last year, is a expatriate South African writer. He has called me the rose of his heart for over a decade. He is loving me through this strange new world; PD has deepened our commitment to one another and his to my boys. The last 12 months have been the hardest yet happiest of my life. This forum, and the people I am meeting, amaze me more each day...