my favorite alias was Andrea Rooney. I even studied his speeches!

Paula,

I am stunned. I hope that you know how many lives you have touched and how you lead with a rare blend of grace, wit, and tenacity.

I am angry. This goes beyond comprehension. I admire you for still having faith through all this; I know we persevere and adapt to this nasty life sentence, but really, this was my tipping point. I am having a hard time with this God thing anymore. We are made in His image? Really? If I still thought anyone up there was listening; I would shout "enough" until I lost my voice.

I am also very deeply saddened. No other words...

Laura

faith
 

Laura,


It's natural to feel angry at God. But it isn't God who gave me cancer. We are responsible for all the toxins in the world-we being mankind. Just keep doing the best u can, u are so talented. Without God, the universe would be meaningless. IMHO

Paula,

You have always been an inspiration for me. My thoughts and prayers are with you. May you find peace.

Sharon

Paula,

I registered yesterday and I don't know you ... but still, I feel really sorry for what is happening to you. I really hope one day you will beat both PD and the tumor.

Good Luck !!!

Faizan Sheikh
 

from Facebook today: Faizan Sheikh, director of "My Hero, My Angel", Wall Street banker turned dance and Parkinson's warrior, said:

I thought to make a short video on Paula Wittekind about Parkinson's disease, but with so much information she provides, will be making a short documentary... Working on Paula's doc, thanks for big help from Vishesh Pires and Darryl Pires... kudos to u both.... stay tune!
Like • • 23 minutes ago near New York, NY •
Jin Kyoung Choae likes this.
Jin Kyoung Choae Pls give my hello to Paula!

Dawson Oh, even if it is a little instead of a lot, the combination of you and Paula is dyn-o-mite.
19 minutes ago · Like
Faizan Sheikh haha! that's an awesome comment! LOL Paula Wittekind, is just awesome!!!! she is dyn-o-mite herself... LOVE her :)
17 minutes ago · Like

Faizans doc........
 

Paula is one of the PD worlds great 'connecters', and has managed to keep in touch with so many people, linking them together. She isn't the only one with this talent, but she is one of the best! I'll be staying tuned for more news of this...

Dear Paula,

When my brother was diagnosed with the most rapid acting ALS, he begged me to find a pill, a cure, a study to be part of. When it became clear that nothing would help, he turned his attention to crafting the way he would live the rest of his life and how he would die. Social workers and others decided that his choices did not reflect their version of "death with dignity" despite his repeated statements of what he wanted: to be found sitting in his recliner in front of his TV watching golf. He died on Easter Sunday, two days before he was to be moved, relaxed in his recliner with the Master's Tournament on the YV. His way.

I honor your way, eloquent, surrounded by cyber as well as physical friends, making a difference. Bless you.

Posts like these make me realise ...
 

how the "cyber world" is the antithesis of the "physical world". How long would you have to have known someone in the flesh before feeling able to share such honesty and relevance.

Best wishes Paula and take care everyone,
Neil.

grasssroots connecton
 

neil you get it. together we are better. diego you can feel it. all I can say is how lucky am.

All I really want to say is you are a great lady!

Paula - your words are incredibly moving and obviously I am deeply saddened by your news. In a strange way though I find your words comforting. I don’t feel that you are in any way being defeatist by not fighting cancer in the way that you have fought Parkinson’s. If there is one thing I know about you it is that in all respects you are a lioness – proud as one, fight like one, fierce as one, brave as one and in your words you show that you are as dignified as one. Putting a positive spin on your so called "way out" is an inspiration to us all. Love Tom

lucky i met you
 

Thank you Tom for understanding what I meant. We are being prepared in ways that a "healthy" person isn't. Some of us spend most of our lives trying to solve this incredibly complex jigsaw puzzle and the learning is endless...so interesting. i have had so many opportunities and experiences and you are a major player and responsible for many UK friendships. Stay with it, the community depends on you. And thanks for being my friend.

my dear paula,

you have always strived to bring comfort and support to everyone, you have always done your very best to take care of everyone, tend and acknowledge, your tender sensitive and kind heart and soul shines, despite what can or would be a time of health or crisis for most.

i just can not find the appropriate words to praise your eloquence and poise, i love, admire and respect you a lot dear lady.
tammy

remembered something that reminds me of you, paula
 

"Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That's how the light gets in."

-Leonard Cohen from Anthem

Always yours
 

Paula, dear friend,
over the last 11 or 12 years we have both grown and become stronger,
and so has our friendship. I am enormously blessed to have known you, more of an adult because I have known you, become more loving because I have known you...and watched more movies on TV than I ever thought possible! We always have a good time--all different kinds of "good." And best of all we always laugh.

Who ever thought we'd be comparing radiation therapy experiences? Sharing our beliefs and NOT debating, for a change? Wish I could get to FL to see you again, but I'll see you later, at the Dance--the one on the Other Side.

Love, respect, delight, joy, and laughter,

Jaye

Is anything random?
 

I just randomly logged on to this site. Pain off the top of the charts. Still not diagnosed after being passed around from doctor to doctor since February 2012. They think they have it down to RSD in foot or Charcot Marie Tooth. I feel so alone. Lots of people love me but I'm sure they can't comprehend the level of pain or how it plays with my head.

Anyway......

Randomly hit your posts just now. You've given me a lot to think about. I'm not a religious person so have to get through this the hard way. You are going through so much more than I and are handling it with such grace. Don't know if I can do that. I'll keep reading and trying.

Thanks for your thoughts.:Ponder:

Have you tried the Cleveland Clinic?

I love that madelyn
 

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

Jaye
 

it's not more than I can bear thanks to your help. i feel as you do ...neither of us has the energy to visit one another. we have different aspirations now but in the end we will be dancing. keep up the fight; you are making it.

Paula & Jaye
 

Now newcomers,
Let me introduce you to two self- taught ladies, educated through experience and masters at the gift of gab, and comforting words, and respect. Gosh, how I wish this fairy tale Had a better ending!

I love you both - keep teaching and remember that your written words can never fade away! and so many have been helped because of your willingness to share. :)
Peg

Dear Paula
 

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
:hug:
Imad

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!


http://www.indigoroads.com/PanPic.jpg

Paula
 

I love you as a comrade and a friend. I have the most profound respect for you as an advocate and as a person of tremendous strength. You are among a very small circle of persons about whom I would say that. From Braintalk chat rooms, to important introductions to which you had to drag me kicking and screaming, to meeting you in person on an early summer evening on Carol's back porch in Kentucky, to a decade of fighting and winning a place at the table for PWP, you figure in thousands of snippets of my memory over the last 12 years. I can't believe that you are being taken away from us.

Life is a treasure and a precious gift and a joy, even or especially with a chronic disease that can, as the condemned man said as he stepped up to the executioner, greatly focus the mind. But sometimes it is also a swindle, and a lie, and a broken promise that breaks your heart. For me, right now, it feels like the latter. But I know that for you at least life has not broken your spirit. You are as brave now as I have ever known you to be, and I've watched you stand up to some of the most famous blowhards and blockheads that the medical and pharmaceutical establishments have to offer. So I'm going to try to take a page from your book, and make this a reminiscence rather than a eulogy.

There are so many things that I remember when I think of you now. My wedding day and you among the wedding party. You and others had traveled so many miles to see AJ and me get married. What a glorious day. Thank you for helping to make it the perfect thing that it was.

Of course I remember the GDNF fight with Amgen. I remember you and me and some of the gang facing off against the clinical trial doctors who supported the decision to stop the trials. We held our own that day, a fact which was made clear when we discovered that sponsor of the meeting “accidentally” turned off the tape recorder, preventing any trail that might harm those arrogant know-it-all neurologists.

I remember you and Jaye traveling to Washington to cover the Senate hearing for Grassroots Connection.

I remember (and it still exists on Carol's website) the film of you and Carol surfing the web when you were “off.” You were a stitch, your eyes half closed and barely moving. That is one of the things that sets you apart – your capacity for humor in the worst moments with PD. It is a testament to your determination to gut-out the bad times.

Bumming cigarettes from you on the sidewalks outside of PAN forums in DC.

You know, a guy you introduced me to gave me a pack of smokes outside his apartment in NYC. I thought about keeping them as a souvenir, but they got stale and I tossed them. I didn't know it then, but I already had a friend who would lend them to me far into the future.

Love,

Greg

you have been through the fire
 

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.

Where are carrie and paula?
 

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.

It's a Wonderful Life
 

It's been one sweet and bitter wild ride, hasn't it? Truly an adventure - one that I wouldn't have missed for the world -- the one glorious blessing of Parkinson's disease. A life of purpose shared with wonderful friends - lucky us!

greg ......way out of the box
 

i was happy and honored to be asked to be in greg's wedding. my thrill turned to surprise as this was not going to be an ordinary wedding. i was asked to be on greg's side. brenda was 'best man' and carey and evan rounded out greg's side. i did my job as an escort for the groom's mother.

nan abraham was the matron and holly from peoria. i am sorry i can't remember who else was a bridesmaid. we wore black dresses on the groom's side but brenda rented the suit and went all out. AJ was radiant in her formal gown and we tried to ignore the kentucky heat.

greg's father performed the ceremony = a nice touch and special.

them when the wedding was finished we had to skip in a line with parasols and turn around for awhile up to the house. luckily.no one fell but Mike Vest's wife and she doesn't have pd, she fell off her chair.

This is one of a kind experience and one that will always be different. We all met at mgh.

memories are good but most all we laughed. and laughed..i can remember jaye was in the wedding and your friend from caliifornia. i forget carol's role =flowergirl?

i hope readers can smile now. love to you all and more heaped upon it.

Thank you Paula. I wish that you show the linked article to as many of your doctors as possible. Doctors have no time to read research but you can show it to them. The vitamin C cancer therapy requires dose of 20 to 40 gm daily given by IV.
love and regards.

Aloha, Paula,
 

Your picture sits on my dresser. It was taken of “the wedding party” in Carol’s backyard (eight years ago yesterday): you, Carey, 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
http://neurotalk.psychcentral.com/at...1&d=1340244804
We are family!

what a day
 

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

most recent crashes included a display
 

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,

to get back to the point
 

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.

love ya a lot paula

In tears
 

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

to send us someone as fine as you
 

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

the L word
 

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."

oops hit too soon
 

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

Dear Paula
 

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

add me to the list
 

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.