My Way Out

[paula_w]

Originally Posted by pegleg

OK, i love these memories, but not sure I can take t hem. Paula, you are so fun-loving. Would you be offended if I wrote up some of the funny encounters we have had?

Luv you.
Peg

you can draw them so well. thanks, peg.

[toadie]

my dad had cardio-myopathy and mom had am aneurysm and morbid hypertension. my brother died at 39 from 2 (aneuryrysma) one the size of a golf ball the other the size of a lime (avms)

my parents were very non display type folks, little to no emotion and little to no physical display.

at any rate, i was always a rebel without a pause, lol

i said "i love you" if and when i meant it and hugged if and when i meant it.

live hard, work hard, play hard, love hard and laugh harder, without regert, like there is no tomorrow and forgive the same way.

find and keep the best of everyone, it's not always easy, but it is easier to live that way in the long run, so to speak.

at any rate, i ain't telling you anything new.

i do love and miss you a lot paula.
tam

[michael7733]

Most of us have not reached the age of retirement yet, and we are dependent upon one or more forms of disability income, There are literally millions of us across the globe who fit into this category. Ha ve you ever asked yourself what you will do for income when a cure is found? We will probably be asked to give up our disability incomes and rejoin the workforce. I know that most of yu do not believe that a cure will come in your lifetime, and you could be right...or...you could be wrong.
Five days ago I added a supplement to my daily regimen of Sinemet and Requip. On day one, July 29, 2012, I took 2 capsules of Mega Hydrate. I think I had a little more energy that day, but it didn't seem t o be a significant amount. On day 2 I forgot to take them. I remembered on days 3, 4 and 5. Today is July 3rd, 2012, day 5. I have divided my medication into 5 doses during the day, and I usually get 2 to 3 hours of "ON" time from each dose. I usually go "OFF" about an hour to an hour and a half before my next dose is due. There is a 9 hour space of time between my last dose of the day and the first dose of the next day. During my "OFF" times, I am pretty much dependent on my motorized scooter to get around. Shuffling, rigidity and freezing are in control during those times. As of right now, 2:40 PM, July 3rd, 2012, I have been "ON" for 29 straight hours with no rigidity, no freezing and no shuffling. I consider this to be significant.
I am not saying that this is a cure or even a new area to look in for a treatment. I am not even saying that this supplement caused this to happen. I am say ing that , to me, this is significant.
michael

Paula, I just can't seem to give up trying. Honestly, I don't know what or Who is giving me so much "ON" Time, but as I am typing I have now had 37 1/2 continual hours of "ON" time with absolutely no parkinson symptoms.I haven't had that much continual on time in 23 years. You know, healing coud be an option. Oh, here is an article that a friend of mine wrote: http://www.theloanfactor.net/MyVictory.htm

michael

[pegleg]

Can you post an update since chemo is over"
Peg

[paula_w]

even though my "chemo" was actually hydration. I finished radiation on monday, to shrink the tumor. i am going to continue hydration, and actually feel pretty lousy right now because the radiation is still at work and it hurts.

they say i did very well, avoiding a tube. now to sleep for a week and pray for energy.

michael, imad- i'm getting exactly what imad predicted from the oncolgist. he said you are within a range of ph or you are dead;he said linus pauling was "mad".

toadie you have had it tougher than most. i very much apppreciate how you lift me up.

[aj04]

Paula,

People here have written a lot about how your faith, your belief in God’s will, sustains you. You know I am a long-time unbeliever. Long ago, it seems, some of us used to discuss serious issues such as our faith openly on the Forum (when we were allowed), in chatrooms, on late night messaging or phone calls (when we couldn’t type), and when we got together. We grew to care about each other first in spite of and then because of our differences.
_______________________________
Lurkingforacure wrote:

Paula, I've never even had what I know would be a privilege and honor to meet you but from your posts alone love you. I grieve for the pain and suffering everyone here endures because of PD and feel a strong bond with them all. In a bizarre way PD unites us, strangers who might never speak to each other under different circumstances, perhaps thousands of miles away, but now, so close as we share information, support, and a zealous desire to help each other.
____________________________________________

So true. If not for PD, and Braintalk/Neurotalk, I would never have met, gotten to know, and visit and love you, Nan, Brenda, or Michael7733, or Peg, or Toadie or Mo—or Greg! Or the hundreds of other pwp and plwp (and PLWP) I have met, befriended, and worked with around the country/world. Bear with me here, I am coming to a point.

Finding Braintalk, as it was then in the late 90’s, was an amazing breakthrough, finding an online community, all these people connected by PD. And then one day the Braintalk chatrooms collapsed and suddenly the Forum (for “posters”) was “flooded” by chatroom people. And how we (I) “posters” hated the disruption. Chatting seemed so trivial.

Until we started to interact and connect. Then Braintalk got exciting. Getting involved was the key. First online, then face-to-face (what we used to call “real time.”) You see where I am going.

I am writing this so that this huge part of your PD life—the multi-faceted work you have done in and for the PD community beyond Neurotalk and Braintalk—gets folded into the mix with the rest of these posts. It is important to recognize how central your work has been and how much you have accomplished for the PD community. Hopefully a little understanding of your history apart from Neurotalk will inspire others to pick up and carry on the torch you are forced to lay down.

PLWP; Grassroots Connection; Shake, Rattle, and Roll; Pipeliners; PAN; the GDNF fight; the Book; and much more I know I am leaving out. You are known and respected in all the major PD orgs and outlets. Your experiences and what you learned from them—and are willing to share—are irreplaceable. You are one person I can honestly say worked tirelessly (or as near as a pwp can get) for pwps’ rights in the relationship between the medical field, the national PD orgs, and patients. Your activist/advocacy work, along with that of your fellow activist/advocate colleagues, is reflected at the very heart of the press release issued July 4th by NINDS, “Patient-derived stem cells could improve drug treatment for Parkinson’s.”

I can’t list all you have done for the community. I can’t count the number of times we have met up at forums, meetings, congresses, retreats, get-togethers. How many hotel bars we have met in or cigarettes bummed while standing outside during a break to discuss the serious issues facing our community and what could we do about it all?

My point, for everyone else reading this besides Paula, is that our loss is not only personal, but we are losing a champion of the Parkinson’s community. I remember the loss felt when Senator Paul Wellstone died in a plane crash in 2002. Our loss of Paula will be as great.

So who of you will step-up and get involved, continue Paula’s dedication and efforts? Because “Time is not neutral for people with Parkinson’s disease and those who will get it.”

[Thelma]

Well Lil/Paula

Yes i am still here and look in every day to read about one and all. Wish I could write like many here but the brain still thinks and the words of others say it all. I was not from a family that ever showed any caring or affection and so am at the ripe age of 80 still living in my world of silence but when it comes to you I want the words to say it
But now after all these years they still don't come so sit back and close your eyes and think of all that you want or need or ever thought about and let my vibes give you PEACE

Thelma

[michael7733]

lc_lil
Member Posts: 1695
From: PD1992
Registered: Feb 2000
posted 02-12-2001 05:13 PM Michael,
That's a beautiful message - but I have to say something contrary to what you said. I DON'T know that the cure is coming soon. That's all hearsay right now. Just hear me out and you will hopefully see that this is not a completely negative post.
Right now we are throwing our weight behind a stem cell petition. Stem cells show great promise. But I've heard neurologists say they don't think that'll be it. The same is true of many other avenues - they show great promise, but will one of them be it? Will we ever discover the right avenue? Will it provide permanent relief? temporary? Will the cells stop dying?
We don't know, we only think we can possibly find out eventually. We have bases to go on.

By the time most of us were born, there had already been major cures discovered. Polio, small pox had been defeated through vaccine. Since then, they have made headway with hepatitus, whooping cough, chicken pox, measles, etc. But this is different. And this isn't going to happen without activism. The drug companies are not that motivated. We are going to have to let them know we're here.
It's up to us to make that post PD vacation a reality. We cannot assume that someone else will do it. And don't assume that someone else is responsible for you.
If you have the time, strength, and energy, get involved in a type of advocacy that you are comfortable with. Don't compare yourself to anyone, just yourself.
And thank heavens I have michael, to keep me up.
We're all winners that way,
lil

IP: Logged

michael7733
Member Posts: 3523
From: a midddle-aged, funny looking geezer from baton rouge, louisiana, usa PD since 1990, dx 1997
Registered: Feb 2000
posted 02-12-2001 05:19 PM Well, lil, if "THEY" won't find us a cure, then "I" will. Presumptuous? Nope. Motivated? Yep. God inspired? Definitely. just me prayin' for you.

I just want YOU to know that I have done my best to find us a cure. Even 12 years ago, as aj has said so wonderfully well, you were active in getting our plight known and acted upon by those who could help. You have been an inspiration. Sometimes I feel that I am more spiritual than I am physical, and so I have cried out to my God to allow me to participate in finding a cure or better treatment for us all. I am trying to not get carried away here, but I have to t ell you , Paula, I have been symptom free for 77 of t he past 80 hours. I feel that I have turned the corner on this and have the goal in sight, but don't tell anybody. Thank you for all you have done and will do.

love you

michael

[paula_w]

of course the same could be said about yo tu and greg and the californians and your stem cell pioneering. you even attended a meeting with Arnold and were so impressed with his commanding presence. actually, we know now why he was in such good shape and perhaps had to do a little running and hiding before he got there on one of his near miss nanny adventures. meeting not just him but in attendance at his meeting had to be thrilling.

i am concerned that there will be starting all over. competition, and much more. I hope someone makes it his/her purpose to watch over and prevent these things. so glad you brought that up Ann.

Thelma, You don't have to think of words. I think i know how you feel. Did you ever picture this forum when it first started writing a thread about love? your presence is enough for me...thank you lady.


and michael,not sure why you are on but i know you have special spiritual gifts. remember the night in the resetaurant when you got this vision. i knew you were telling the truth because you had a look of fear on your face that was unmistakable. Peg, Carol, my daughter pregnant with my first grandson. and you and me. you siad you had this awful feeling that one of us[ from my family]was going to go away or disappear.

i love you too michael

[michael7733]

http://www.braincrumbs.org/AmazingGrace.htm i hope you have sound