My Way Out

[indigogo]

paula and carey = "women in black" for greg; nan in traditional pastel for aj

[paula_w]

Originally Posted by aj04

Your picture sits on my dresser. It was taken of “the wedding party” in Carol’s backyard (eight years ago yesterday): you, eCarey, friend Evan, Brenda, Greg and me, Nan, Holly, and friend Sylvia, with Jaye sitting on the grass. But that was only some of the ”party.” Ann T was there, Mike Vest, Linda, Perry, Patty and Ron, Laura Jane, Peg, Carol’s niece who sang, Carol herself and Toadie too. The gathering was a continuing expression of the first time I met you, back in the summer of 2000 also at Carol’s, and Carl’s, where, amidst a lot of eating and drinking and talking, the gang practiced our “moves” to We Are Family for a performance at the John Lester Award Dinner/Roast in NYC on the Unity Walk weekend. But in my clearest and warmest memory of you at that first meeting you were standing behind me, just having come back inside from having a smoke, weighing in on the rather heated conversation as to the existence of God, a glass of white wine in your hand which you dyskinetically swung to and fro over my head as you declaimed. I have to confess, I began to pay a little less attention to your argument and more to my imminent drenching, but you never spilled that wine on me.

But, those are only a couple of my memory palaces that you inhabit. There’s singing “How does it feeeel?” while cruising around Maui; my warning to be careful of the sunglasses display in the Union, KY, grocery store only to hear a crash and turning to see you walking away, quickly and dyskinetically, laughing—holding a new pair of glasses; and our showing up the day before the World Parkinson’s Conference began halfway around the world in Scotland and to have you be the first person we ran into. And much more.

Many here have used words like strong, witty, smart, inspirational, brave to describe you. I ditto them all. Your mark has been deeply felt here in your steadfast devotion to the Forum(s), your constancy, your commitment to activism, from Grassroots Connection and your years as PAN’s Florida state rep to your work on Pipeliners and GDNF. Perhaps one of your crowning glories is “the book,” and your dedication to preserve the words of your peers. You never received the just recognition for your efforts, but your influence will live on in all the work we continue to do and all the play we can squeeze out of it.

I admire, respect, and love you for who you are as well as for the memories. Once again you are leading the advance and we will all follow, some sooner, some later. It is good to know that the dance will be held on both banks of the River Styx when the day comes.

See you there.

AJ

We are family!

of men's deoderant at walmart, three landed in my cart and i ended up just buying them and for the grandest exit from a store anywhere yet, i knocked down all stacked hand held shopping baskets which were stacked at the exit and well viewed from evey cash register in the busy publix supermarket. a family came to help -after they figured out what i was saying.

aj your post reflects your wonderful ability to paint the picture and reflect on its' good, humorous qualities. we had them jammin to 'we are family" even the owners of the mansion - jack ? and his wife and from whom tony lang receives a fellow. or is jack the fellow? tony? the word fellow belongs in there somewhere.


maui is heaven on earth to me. were you there when the big cockroach crawled out of Nan's purse and ran over the counter at mcdonald's? then we hightailed it out of there and piled into andy's jalopy and drove away. i still laugh out loud at that....it was the funniest thing i've ever seen.

thanks for the special pictures.
i love you for puttin up with my views and i don't come close to writing them as you do. i love you for the writing you have shared. and greg, overcoming your stubbornness and finally having permission from YOU to introduce you to patient #uno was one of the most fun and yes i'll go as far as saying a little powerful things i've ever done. i ran on that power and i think you both did too.

with honesty,

[paula_w]

Originally Posted by imark3000

Although we never met but like others in this forum we got to know you and love you through your posts which are always sincere, informative and funny.
You are a courageous lady and have faith in God and in his infinite power and wisdom. It is God'will that all of us will cross the other world some time and some place only known to God. It may happen in the next hour, day, year or decade. So I sincerely and lovingly refuse to hear you or any body else talking about eminent coming end to your life. I myself believe that you will be with us for a long time and the doctors are committing a great sin claiming to be God, knowing the length of your life. It is true that life and PD prepares us for the end but we continue to live as best as we can , thankful for all the joys we had and accepting without a grudge all the pains we had and this gives us the courage to live in this imperfect world.
Dear Paula: I have recently come across literature which advocate the use of high doses of vitamin C to treat Cancer taking it alone (up 20 to 40 gm a day Intravenously ) or as adjunct to conventional chemotherapy and radiation.
Apparently, two-time Nobel Prize winner Linus Pauling and other researchers and doctors have been shouting, for many years for use of this natural and completely harmless therapy but they were opposed by the medical establishment and pharmacy industry (some argue because it would harm the multi-billion cancer treatment industry). Please check it out for yourself and insist on using it as it is absolutely harmless.
http://acam.typepad.com/blog/2011/05/high-dose-vitamin-c-for-people-with-cancer-a-promising-adjunct-to-mainstream-cancer-treatment.html

Imad

iimad,

if vitamin c is supposed to be taken with chemo and radiation, it likely wouldn't help me as i am not taking treatment for the rest of the cancer.prayer is all i have, but not necessarily to live a life with advanced [and now out of control] pd. i am taking radiation to shrink the tumor to avoid the eating tube. I have completely given it to God and pray that i complete what he wants me to do. he has led me the whole way with outrageous and awesome experiences - i need to get closure. My friendship will go out to you always. i sense your goodness and know you have suffered.

there are many kinds of love; many of which are at play here.
it is a special bond.

[toadie]

love ya a lot paula

[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

[Bob Dawson]

Paula,
You know I wear these earphones and listen to music most of the time? And when I put my I-pod on "random", it chooses the soundtrack for me, out of a list of many thousands of songs.

I just finished reading Pegleg's post above, and then in my earphones I heard:

I’ve been broken, shattered like an empty cup

I’m just waiting on the Lord to rebuild and fill me up

And I know He will do it ’cause He’s faithful and He’s true

He must have loved me so much to send me someone as fine as you

[paula_w]

It wasn't long ago that we friends started telling each other. "i love yu." I won't name them -this thread isn't to make other people feel left out. I first had to learn how to hug - my family didn't display open emotion like that and i usually considered it just a rote habit with little sincereity when my friends told their family members l love yu before hanging up from a phone call.

Further more,touching was just not done. i told my early internet friends that i was pretty sure i was tactilely defensive. we each had sound to identify our signing online and mine was 'don't touch me." The first time I met anyone from online was in NYC in this order1- nan abraham at the airport, Brenda Tucker- at the chelsea pier where pwp #3 came over to us and hugged us all during his audience visit during the taping of Spin City. mike is a hugger of the highest degree and repeatedly hugs everyone,that's how i realized how short he really is ...lol....but what he lacks in stature he makes up for in charm and word wizardry. i told him several times I loved him and he knew what i meant....it was a love tied into compassin, pain, the unknown anger - so i have to say that mike helped me feel comfortable hugging just about anyone.

To progress to saying I love you was longer in coming,I find that people of fairh seem to sometimes manipulate the congregations into turning to their neighbor and saying phrases like,"l love you and will remember to pray for you." OR we are -"we don't have to except illness and i don't accept mine." This one disturbs me particularly because what is missing is the infamous "we are all different and there is an plan for us if you believe that."

[paula_w]

I want to give an example of divine guidance that truly touches me deeply. i don't attend church anymore for many reasons [just too sick]. I never felt close to the Pastor - it was a large church and didn't know how to go about getting one. there were several pastors tho and i lived across the street from the main pastors son's family for some years.

one day at the cancer center i saw one of the pastors and knew that he was a patientcause he was getting checked in by a nurse. i quickly turned away and kept going but a couple days later i found myself sitting beside him in chemo room where i go for hydration. i kept praying about what to do but it was a no brainer , so i spoke to him I didn't know him personally at church. He doesn't go to that church anymore and is no longer a pastor. he is a chaplin for a hospice service. he is a casual and warm person ...i am looking forward to getting to know him. He believes the Lord enabled our meeting and we both have cancer. he will do my service.

the love word is no longer missing from my vocabulary. divine guidance will come to you; just wait and learn how to recognize it.


p a

[imark3000]

Originally Posted by paula_w

iimad,

if vitamin c is supposed to be taken with chemo and radiation, it likely wouldn't help me as i am not taking treatment for the rest of the cancer.prayer is all i have, but not necessarily to live a life with advanced [and now out of control] pd. i am taking radiation to shrink the tumor to avoid the eating tube. I have completely given it to God and pray that i complete what he wants me to do. he has led me the whole way with outrageous and awesome experiences - i need to get closure. My friendship will go out to you always. i sense your goodness and know you have suffered.

there are many kinds of love; many of which are at play here.
it is a special bond.

Thank you so much, Paula, for your kind words and I am truly humbled by them.
My understanding is that cancerous cells are regularly present in our bodies and they are eliminated by our immune system. Mega doses of vitamin C given through IV will boost the immune system so that it can fight cancer.
Please talk to your Doctor and I know you cannot be dismissed easily.

Paula, I have not met any body like you keeping balance and humor while facing an eminent danger. We all will surrender to the will of God but not to the will of doctors who know nothing about the human spirit and almost nothing about cancer.
Life is a miracle .. Say it that you will overcome cancer with God blessing.
Do it, not for your self but for the sake of all the people who love you and need you. Do it, just to prove that the human spirit will never surrender.
sincerely
Imad

[lurkingforacure]

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.

I obviously come from a family where love and hugs were freely and frequently exchanged and feelings readily shared, so I apologize if this freaks some people out.

Much love and hugs to you, Paula.