Originally Posted by paula_w

not to be morbid but it is an advantage to be able to plan your own service. then it will go as you dictate. All I need is this thread.

it flows with creativity, understanding. warmth, and beauty; this is a place of harmony and caring. my family is printing it out; they don't need to search for words. They are all here and expressed with honesty. Each worded from individual perspectives; Ann T does your post mean you are not still afraid of me? lol...so long ago and u had a right to be. this forum developed kind of like a volcanic eruption that has settled but humming with information.

we are inside each other's head. many years of that is like carving a sculpture. we have to leave some time, but at this point death is a release for me. it will set me free from what is now poorly controlled pd and my only chance would have been gene therapy - a trial with GDNF. At one per month......well.....so this timing is perhaps a good one for me although i believe as Imad that only God determines the day, but knowing it's coming enables me to tie up many loose ends.

it's a time to forgive and be at peace. family squabbles are over unimportant things and slowly go away.

we already lost bandido bob in the book group. i hope i get to see it published and if faizan is doing a documentary you will see my aqua zumba class....lol......it was one of the last i attended. i hope to get back after radiation [to shrink the tumor]. radiation exhausts u in ways that are much harder to overcome than pd.

it's the only treatment i'm taking and i'm trying to avoid a feeding tube. at the end of radiation, i'm hoping for energy again to go back to class. meds aren't working well and i'm getting a nuisance of a dyskinetic right leg. i finally look good from behind in my bathing suit as the bulges that stick out over the top of the back are gone. Unfortunately, i only weigh 110 lb. and if i lose more will probably have to get a peg tube. i get hydrated a few times a week. It' not fun.

this thread helps my family, with 2 daughters who are in their 20s and quickly putting past resentments to rest and now are with me everyday they have off. my 9 yr old grandson is a little angry and impatient with me and sadly, i couldn't manage him alone for more that a day. my other grandson is 5 months old and so chubby i can barely lift him. but he is mellow and plays......i love them dearly. i guess i won't see either daughter wed. the mother is engaged but wants to lose the weight she gained and wait for the baby to be more independent before wedding. my youngest daughter just went to europe alone and is now communicating with Orville. from Austria. He has a farm and competes in horse shows. i said "farm? two words: animal poop". I asked if she would be picking cherries and baking pies in the kitchen,she said, "what would be wrong with that?" Indeed. I was in Hawaii at age 23 and didn't come back for almost 11 years. but she has one more year of school left before she should go cherry picking and clean up animal poop in Austria.

ok this is now too long but it is therapuetic and this situation, tho sad, is setting me free as life has poor quality now. when you ask yourself, as laura did,"what about the God thing?" how many times have u heard mike fox say if he had to do it over again he wouldn't change it? i agree but from a different perspective. God [in my opinion] wants us to be prepared, tested, refined,and he works through people. He doesn't wave a magic wand. In spite of it all, i feel nothing but love. Isn't that the way it's supposed to be..isn't that all anyone wants?with love and peace

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

Originally Posted by indigogo

Paula - I reached out into the great expanse of the internet in 2002, and you grasped my hand. "Join us at Braintalk!" That was in March; in May I met you in DC at the PAN Forum (along with Jaye, Peg, Greg, AJ, Linda, Carol, Carl, Nan, Brenda, Perry, et al) We hung out at the Senate hearing and cheered Michael, Ali, Joan, and Milly. We tricked Bill Bell into getting our picture taken with Ole Isacson. And I believe we changed history.

You were my first comrade in advocacy; I learned so much from you - and we had so much fun! (Drinking Friday night wine while talking on the phone; peeing our pants at conferences; gatherings at Carol's house - Greg & AJ's wedding! watching Eddie Izzard! - scouting gators in an airboat when I visited you in Florida; eating Thai food with Bill when you came to Seattle) I always thought it was significant that we became friends from the opposite ends of the country; that we represented PD patients everywhere. You've been a huge influence in my life - and, I am certain, a huge influence in the lives of many, many others. Your life and the way you lived it made a difference. We are better off because of you.

It makes me both mad and sad that we don't have a cure; it makes no sense that this can be happening to you.

I know your faith is deep; that is a comfort to me as well as it is for you. I know without a doubt that I will see you again. The courage of the choices you are making now inspire me completely. I can't imagine the world without you.

I love you!

Originally Posted by paula_w

GOD: "i knew i should have clipped their wings; now where are those two ?
GOD ROARS: " Thelma"? "Louise? Come out of the black hole -it's getting dark."
Thelma: after recuperatin from the roar, said, " let's go or we might get our wings clipped and miss out on the safety and love 'hover' over our families."
Louise: still wobbling from head to toe from the roar, just nodded and fluttered and wobbled with Thelma all the way home.
GOD:always watching= allowed himself a smile. Children, he chuckled. God love them - you can count on it.

Originally Posted by paula_w

when you write i pay attention so i will take vitamin C. i can't wait till the book comes out with what you call "not poetry". You have had major events occur to you, including loss of your home country. You have explained it to me once and it was never mentiioned again. Peace and forgiveness are so much more everlasting.