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I can't understand?????????......

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Old 05-10-2010, 12:36 AM   #1
ol'cs
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Default I can't understand?????????......

.............Why i keep putting notches in my "PARKINSONS CURE STICK". It's at 10 now. That's graduated in BS units. A BS unit is a five year period from when mankind says "WE" will accomplish things like world peace and other things which are either realized or not; and if not, the clock keeps advancing, into yet another long BS unit, untill it's inevitable "final words are said about it, and it never reverts again It comes to a halt.
If the intervening number of BS units before "our cure" is more than another two or 3, many of us who know each other and have hashed over everything ever said about what PD is all about won't be here anymore, ever. We, the victims of PD have had a lot to say about this malady. I guessed that around 1960 is the first time in history that a serious effort was put forth to "CURE" Parkinson's disease, and thus the start of "our cure" in BS units. So it's 2010, and i'm a runnin out of stick.
It seemed so simple, we knew a lot about

http://www.emc.maricopa.edu/faculty/...obooknerv.html

even in 1960. Isn't it butt stupid obvious that, even knowing very little about brain architecture and function, that all it takes to cure PD is put some new viable tissue that would grow and fill the interstitial areas between the dead neurons, and with proper genetic control just stop growing after a calculable cell number of divisions (not really tough question) and, voila, we've bioengineered a transplant that can grow and not differentiate, a "workable interstitial cellular network of dopaminergic neurons" that actualy do "cure" PD like symptoms. It's highly probable that there exists right now this "holy grail" that we seek, but nobody is willing to be the first to step forward with their inventions, something i call the "Amgen Syndrome". We all know this attempt to stabilize the areas of damage of dopaminergic cells with substances derived from glial cells, which were thought to optimize support and survivability of the remaining neurons. Maybe the pharm Kings have thrown up their hands? Maybe the Kings are quietly sliding into the bioengineering field? Who really knows. I've seen some very encouraging, scientifically elegant work out there on "cell engineering". Me, i've got a good feeling since our new prez took over that great strides are being made toward the "cell therapy" method of a cure for PD. I believe that saving peoples lives who want to live but are cut down by disease and the building of a "New America", are, truthfully and honestly on the heart of the man who received a nobel prize before he really should have. Ten bucks we'll get our cure before two more notches are carved in my stick. That's optimism that I have never "felt" untill lately. And even though i know that in one BS, a few of us will slip away DUE TO PD, and will be greatful to finally be rid of this twisting crawling, extremely visciously uncomfortable torture that you eventually describe as your experience with PD goes beyond 2or 3 BS's. cs
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Old 05-10-2010, 12:52 AM   #2
paula_w
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your hopefulness spilled out so thanks. it's a heartfelt post and as i wrote to someone earlier, i'm almost in the heart to stay.

it's a masterpiece to watch energy fluctuations bounce off each other while in motion...always interesting to glimpse inside your head cs, as you pass through.
p

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Originally Posted by ol'cs View Post
.............Why i keep putting notches in my "PARKINSONS CURE STICK". It's at 10 now. That's graduated in BS units. A BS unit is a five year period from when mankind says "WE" will accomplish things like world peace and other things which are either realized or not; and if not, the clock keeps advancing, into yet another long BS unit, untill it's inevitable "final words are said about it, and it never reverts again It comes to a halt.
If the intervening number of BS units before "our cure" is more than another two or 3, many of us who know each other and have hashed over everything ever said about what PD is all about won't be here anymore, ever. We, the victims of PD have had a lot to say about this malady. I gue\.ssed that around 1960 is the first time in history that a serious effort was put forth to "CURE" Parkinson's disease, and thus the start of "our cure" in BS units. So it's 2010, and i'm a runnin out of stick.
It seemed so simple, we knew a lot about

http://www.emc.maricopa.edu/faculty/...obooknerv.html

even in 1960. Isn't it butt stupid obvious that, even knowing very little about brain architecture and function, that all it takes to cure PD is put some new viable tissue that would grow and fill the interstitial areas between the dead neurons, and with proper genetic control just stop growing after a calculable cell number of divisions (not really tough question) and, voila, we've bioengineered a transplant that can grow and not differentiate, a "workable interstitial cellular network of dopaminergic neurons" that actualy do "cure" PD like symptoms. It's highly probable that there exists right now this "holy grail" that we seek, but nobody is willing to be the first to step forward with their inventions, something i call the "Amgen Syndrome". We all know this attempt to stabilize the areas of damage of dopaminergic cells with substances derived from glial cells, which were thought to optimize support and survivability of the remaining neurons. Maybe the pharm Kings have thrown up their hands? Maybe the Kings are quietly sliding into the bioengineering field? Who really knows. I've seen some very encouraging, scientifically elegant work out there on "cell engineering". Me, i've got a good feeling since our new prez took over that great strides are being made toward the "cell therapy" method of a cure for PD. I believe that saving peoples lives who want to live but are cut down by disease and the building of a "New America", are, truthfully and honestly on the heart of the man who received a nobel prize before he really should have. Ten bucks we'll get our cure before two more notches are carved in my stick. That's optimism that I have never "felt" untill lately. And even though i know that in one BS, a few of us will slip away DUE TO PD, and will be greatful to finally be rid of this twisting crawling, extremely visciously uncomfortable torture that you eventually describe as your experience with PD goes beyond 2or 3 BS's. cs
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"Time is not neutral for those who have pd or for those who will get it."
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Old 05-10-2010, 02:05 AM   #3
ol'cs
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Default Now what........

gave me the idea that you, Paula would be the first to know that I don;t like my posts taken to where i can't erase 'em?
You even probably see deeply enough to feel the disbelief and sarcasm in my post, since you are probably worse off with this beast than i am.
Well. after 13 years of head scan DX, i'm still not in a wheelchair but my knees and elbows get smashed on the floor daily. i'm covered in large bruises and serious cuts, but i couldn't give a **** because my doc is kind enough to keep me pharmacologically at ease, sorta.
I've lost my job, my wife and my kids, my home (i gave it to my wife and kids to live in without having to have a parkie around) and now live in a basement, but god loves me 'cause i still got a pension to burn, on drugs and alcohol. Truthfully, i don't know how some people can go to the end of this disease sober !!!!!!
PS- it's a nice basement, i don't have to earn over 100k to pay for it anymore, just 50k for meds. HAWHAW!!!!
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Old 05-10-2010, 01:35 PM   #4
lillehunen
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I don't want to sound overly simplistic, but are you doing anything for the PD besides drugs? I am too new to this to rule anything out at this point. I keep hearing that some foods and exercises might be "neuroprotective." I saw a video recently of a man in Holland who was pretty bad off, but was doing amazing things on a bike. Then another video of a guy in Canada who claimed learning to ride his bike again made him stronger and reduced some of his pd symptoms. Has anyone tried food and exercise instead of or in addition to drugs for relief?
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Old 05-10-2010, 02:58 PM   #5
paula_w
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cs, if you want the thread deleted, i will ask to have it removed if the edit no longer functions . I didn't copy it for that reason, I copied it to give others a chance to respond to you.

i know exactly how you feel, I've done all of that too. Living apart from my grandson almost killed me. this illness sucks the life out of you and it takes a long time. But think ahead, if at all possible. You probably think you have no strength for a grandchild....I didn't. But i held that baby for two years and now am his personal homework tutor. It's as good as a med- better.

I'm still suffering - don't think i'm trying to trivialize it. But I have a reason to get up in the morning.

take care of yourself, you never know who might really need you, pd or no pd
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Old 05-10-2010, 07:12 PM   #6
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CS, You don't know how good it is to hear your voice here again. You probably don't remember me at all, but I remember you!!! One of the things that kept me going in the early days was your responses among others...... please pass through more often, when you can....

Take care and keep going,
Lindylanka
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Old 05-10-2010, 10:14 PM   #7
pegleg
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ol'cs
We've hung around this place since Mike Fox first went public - maybe even before then. I may be considered one of the "fortunate" ones, but nobody knows what goes on in my daily walk (sometimes crawl) with PD.

Yep, I was there when Michael J. Fox testified before the Senate , and the big researcher who has made major breakthroughs with stem cells said "Yes, if funded Parkinson's can be cured in five years!" That was 10 years ago. And Fox Foundation has poured over $93 million alone into research for PD.

You and I both know Parkinson's is more than a deficiency in dopamine; and it will take more than simple dopamine replacement to cure it.

I still have family, but they don't always understand me - I guess I put on a good front. I overhear "plans" about me and my future that I don't like - but I am at the mercy of this disease - EXCEPT for this: hope. If you give up hope you may as welll throw it all away. and we (the PD community) NEED you! You have a science background, you're smart enough to help fight this battle, and you can help others cope who are just stepping over the threshhold of "advanced PD."

Curse it, pray about it, fight it, or whatever you have to do, but DON'T GIVE IN TO IT!

We're in this TOGETHER - now let's not break our hold. Email me, PM me, call me, whatever you have to do, but don't leave me to fight this all alone.

Peggy
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Old 05-11-2010, 02:55 AM   #8
lou_lou
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Heart dear friend~

dear cs~
I know that you are loved by more than God, however,
God loves us best... because he knows us best, and the awesome part is, he still loves us anyway... ♥

okay - I have an aweful joke of the day for you ...
...r u ready?

Knock, knock.
Who's there?
10 Q
10 Q who?
10 Q very much for always showing up when -I need you!
(((hugs2youcs)))
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lou_lou


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pd documentary - part 2 and 3

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Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant with the weak and the wrong. Sometime in your life you will have been all of these.
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Old 05-11-2010, 05:17 PM   #9
Thelma
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Chuck

I don't love you nor do I hate you. I don't need you nor do i want to need you. But somewhere in my inner being something says to me every so often.

Jeez I wish I knew how Chuck was doing.

I need to hear the anger I feel and the hurts I feel and know someone out there understands where I have been and am coming from.

I need that someone who understands that Parkinson's, Cancer, Als and whatever else binds us can and does share this need for empathy in our good times and in particularly our bad times and know somewhere out there Chuck will pop in

Just wait .............................................thank you once again
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