My Way Out
 

MY WAY OUT


After at least 25 years with Parkinson disease, one expects to slowly become less functional in every way.

Communication becomes slurred, muscles freeze, swallowing becomes difficult and- last but not least -there is a constant danger of falling. All of these symptoms can lead to other health conditions that are also life threatening.

Our insides are sluggish and backed up also. Inside tremors are not always visible to the eye but they reveal themselves on machines. The internal tremor alarms doctors who are not familiar with pd and they learn from the experience. I have demonstrated this learning experience to at least three doctors and a paramedic team. My gastroenterologist sent for my husband before putting me under with anesthesia because of monitor irregularities due to internal activity.

Pwp have a high tolerance for discomfort.

How will our lives conclude with this illness? So many possibilities, but mine was revealed to me with an esophageal cancer diagnosis after what seems like a lifetime of painful food backup, bloating, and heartburn. I don’t know or care if it was the pd that caused it. I used to smoke and drink, but I suspect the sludge that ferments and creeps through my digestive system wore out my esophagus.

When I woke up from the endoscopy my doctor said, “you have a tumor,” I asked ‘is it cancer?” He said ‘I think it is; you will need chemo and radiation.”I looked at my friend and said “I finally got a way out.”

It doesn’t stop there. Lymph nodes are next and now it’s just cancer as it is beyond the esophagus. Little sprinkles of it scattered on the PET SCAN – some here and some there.
"If you have symptoms,” explained a very well respected oncologist, “you are already past stage 1 where there is a 90% survival rate. This is almost always found accidentally. This quickly drops to 30 per cent if it’s in the muscles and down to 10 if it’s in the lymph nodes, and of course I have a spot on my lung. Not identified yet but it is likely going to contribute to what is indeed a way out - like it or not.

That brings me to the reason for writing to you all. I’m going to list the rest for brevity and clarity.

I am not afraid. Whether you realize it or not, Parkinson prepares you for death, especially as the years go by and you suffer losses all along the way that you can’t get back - like carrying my new grandson while standing up-no balance.

I am not depressed, I’m relieved. I basically haven’t felt well since I was 35.

I have become pretty cynical about the medical community and seem to see more waste, competition, repetition and dishonesty than success and compassion.

I am not going to fight it. It will only destroy all the gains I’ve made from exercising. The oncologist said I have no cogwheeling and he’s never seen someone as “normal” as me after 23 yrs. After reading an article called “Doctors Die Differently” I learned that doctors don’t take as much treatment as they prescribe. I decided to do what the writer suggested in the article and ask what each of my doctors would do?

The general practitioner hugged me and took my shoulders and said “YOU MUST FIGHT THIS.” The gastroenterologist said take the chemo and radiation, it may buy you some time. He's a sweetie but his job is to keep me alive.

The oncologist said, “I probably wouldn’t take the treatment. I think we have the same view about death. It will make your pd much worse and it’s too far advanced.” God bless him . He said he might suggest a little radiation to shrink the tumor to enable me to swallow. Therefore that’s our goal. Attempt to shrink the esophageal tumor so I can eat and travel.
Here are two statements made by my oncologist that I have never heard before from a doctor:

“Hey where are you going? We aren’t finished yet!”
and
When asked if I should go into a rehab center for treatment, he said,
“Good Heavens No! You’ll never get your meds on time there!!”

My faith guides me everyday – one at a time. “Fear no evil for thou art with me.” I believe I am in the right hands.

Paula,
Just want to let you know you're one of my favourite posters in this group and that you're in my thoughts.
Lee

numb
 

Paula, I understand your post but am still so very sorry to hear this. You have touched more lives than you can know and are a shining spirit in so many ways.

And I thought PWP never got cancer. As if the PD weren't enough. Hugs to you, lfac

Just want to ditto what Lee said about your postings, Paula. You have my best thoughts and prayers.
Robert

Paula,

Really, really sorry about your misfortunes. Wishing you strength, peace and love in the challenging times ahead.

Hugs,

Muireann

For those of you who are new here, know this:

Paula W is one of the pioneers of Parkinson's patients' activism. With fierce energy, faith, love, hope and truth, she rattled many cages and inspired many souls. Just reading her posts often pulled me out of "Off" and sent me vigorously back to "On".

Hearts and prayers go with you Paula.

(((Paula)))

My prayers are lifted for you.

if not for yourself - for your loved ones....
 

Dear Paula,

PD may indeed "prepare" us for death.....but does it really ?

remember barbara streisands' song "People"....? who need people...are the luckiest people in the world...you bring such grace to this community and i see how you choose life in so many ways ( exercise and humor for starters) - don't stop now girlfriend - keep going.
sharilyn

Dear Paula
 

I have you in my thoughts and prayers.
You are a great lady and great fighter and you have always inspired us along our journies with PD. You have not reached the end of the road. Only God and not the doctors would know or decide that. I know you will fight cancer as well as you fought PD.
With love.
Imad

Paula,
You have inspired and helped us all on this difficult journey with your advice and kind words. I'm so sorry to hear about your current condition. We all care about you and wish for many more sunny days to Enjoy life the best way you can.
My heart goes out to you.

Max

Thanks
 

Paula

Of course I already knew about this news, but it is obvious that you are highly respected and loved ,by the followers of this forum (note that nearly 300 have read your post and within 30 minutes of its posting you have nearly a dozen replies.)

But remember to never, be er give up hope, even with something as knowingly "terminal" as cancer. I can imagine the first patients who were diagnosed with polio and thinking that it was all over. Yet, we wiped out that disease with Salk's discovery of a vaccine. In the 1950's, I remember standing in line with the masses of children to receive my first anti-polio vaccine, which by the way was administered orally on a lump of sugar, and it was pink! Today, polio has ivirtually been eradicated from the list of serious childhood illnesses. But those who were not fortunate enough to get this help in time had a milder case. But thos.e same children (baby boomers) that contracted polio are suffering now from post polio syndrome.

What I am saying is that wherever you go in the afterlife, you can watch your efforts being replayed, and it will be apparent that you gave it your best shot in attempts to harness Parkinson's like Salk did polio. You were definitely one
Who "went down with the ship."

Who knows? Maybe some of the research efforts will come to fruition before we all have to call it quits. We love you, girl! Remember what Joan Snyder would say, who suffered a stroke during her second pallidotomy, "No way to it but through it," a borrowed quote from the old TV series, "Northern Exposure."

My thoughts and prayers go with you.
Peggy

Thoughts and prayers for you and your family.
:grouphug:

[quote=pegleg;881865]Paula

Of course I already knew about this news, but it is obvious that you are highly respected and loved ,by the followers of this forum (note that nearly 300 have read your post and within 30 minutes of its posting you have nearly a dozen replies.)

But remember to never, be er give up hope, even with something as knowingly "terminal" as cancer. I can imagine the first patients who were diagnosed with polio and thinking that it was all over. Yet, we wiped out that disease with Salk's discovery of a vaccine. In the 1950's, I remember standing in line with the masses of children to receive my first anti-polio vaccine, which by the way was administered orally on a lump of sugar, and it was pink! Today, polio has ivirtually been eradicated from the list of serious childhood illnesses. But those who were not fortunate enough to get this help in time had a milder case. But thos.e same children (baby boomers) that contracted polio are suffering now from post polio syndrome.

What I am saying is that wherever you go in the afterlife, you can watch your efforts being replayed, and it will be apparent that you gave it your best shot in attempts to harness Parkinson's like Salk did polio. You were definitely one
Who "went down with the ship."

Who knows? Maybe some of the research efforts will come to fruition before we all have to call it quits. We love you, girl! Remember what Joan Snyder would say, who suffered a stroke during her second pallidotomy, "No way to it but through it," a borrowed quote from the old TV series, "Northern Exposure."

My thoughts and prayers go with you.


thanks peg but it's not the numbers, it's what they say that my heart is overflowing with and will help me get through it.

You have the wisdom, fortitude and insight of a survivor living with pd for so many years. Thank you for sharing the knowledge you gained to help others who walk the path of pd understand it a little better. Thank you for your compassion and heartfelt words that hugged those in despair and shed a ray of hope on their day. Thank you for being such a vibrant part of this community. and now, dear friend, please know that we are here for you. whichever path this road you are on goes, know that we are here to hold you, to listen, to support you and to pray for you. We love you Paula

Paula, you are in my thoughts and prayers

I'm sorry to hear about cancer dx, and I can relate to your not being afraid

You are a pd warrior!!.

You have been one of the many voices that have worked so vigilantly and altristiacly through advocacy, to find a cure for pd, and/or better treatments of pd symptoms, so that our lives may become more than what they are or what they could be

God Bless You for always being there for us, with our best interests in heart, and for sharing your life with us!!

I'm so sorry to hear about your condition. My thoughts and prayers go with you.

My way out
 

Paula,
i first met you in person at the world parkinson congress in washington dc where you arranged for me to be your roommate. I will never forget your
courage, and reaction when, I think it was the 2nd or 3rd day, I witnessed you go into dystonia and your reaction was laughter! I had never seen what it does to a person and was horrified and terrified as I tried to get your stiff body up onto the bed. Frozen as it was in a cruel twisted position. Your positive outlook and determination inspired this poem I wrote back then and has my admiration since. You are truly a warrior woman!

To My Courageous Friend

You are the heart inside the candle
Passionate
Jumpy with giggles and laughter
Smoldering after spending
Yourself – selflessly
Bright burning – darkness-defying

You are a flame
Refusing to be doused
Stubborn
In silence loud
You re-iterate
Your refusal to become cold
And though you may seem alone
You entice others
To hold their candles high
And twinkle boldly
Sharing, sizzling
Chipping away – purging the dross
To reveal the pure beauty
of your soul – my friend
In my eyes
You are a hero

by April Curfman copywrite 03/06/06

such kind words
 

Thank you harley and april- for your beautiful and inspirational poetry. April has to explain to me what she means sometimes but it's deep and how she thinks of all that I can't understand, but they flow.
thanks for sharing your inner souls over the years.

Illness
 

Oh Paula, You are in my thoughts and prayers. I have so admired your courage, compassion, curiosity and directness. You still have it. I wish you peace. and a chance for finding what you need. with much fondness, madelyn

Paula, you know my feelings already.

You introduced me to the phrase 'herding cats'. It was new to me.

You've been herding ideas, studies, people, loose ends, and us for years; connecting us together, and moving us on, pulling us out of trees, turfing us out of too comfortable places, demanding that we get on out there and do something, sometimes treading on our tails, reminding us of the urgency and never giving up.

The herd is growing and getting more clamourous, and I can't imagine it without you. Stay on the journey as long as you can, you will be there in our collective fur, paws, claws and whiskers, and you will have gone home. :hug:

Paula
 

Paula,,
You have had such good advice and good wishes, I can only echo them. Unfortunately, I have never met you, but you can tell a person's character from the way they write, and you are trully a warrier, but a compasionate one.
You never know what is round the corner, and the cavalry could come yet. So many cases of peoplr beating the Doc's diagnosis, that it almost seems like the norm rather than the exception.
Carry on beingg an inspiration Paula.
best wishes
Ron

Paula,

You are touching more lives than you know.

Brava to you for your honesty and for thinking of others in this moment of clarity and crisis.

much love to you paula
your gifts of grace, dignity and eloquence means you have more than just survived, you are living well despite or inspite of adversity.
please do let me know if i can be of help to you in any way

wanna see me fly?

http://www.youtube.com/watch?v=K-MwS...&feature=share

Paula,

I was so sorry to read your post. A quote from Steve Jobs came to mind because you always followed your heart:

Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.

Peace to you and your loved ones, Jean
http://www.pdplan4life.com/pdtulips/tulip-1inchweb.gif

Well, I'm not coming to your funeral. I refuse to make a memory of you in a box when for the 12 years I have known you you have lived outside the box, a rebel of sorts, drawing life just outside the lines. Then this wry little smile would pop out on your face signifying that you had accomplished your goal of getting someone's attention. What? You don't think we are aware of that WRY little smile...hmmmm.

Well, what now, Mirapex Maiden" I'm not going to try to talk you out of dying. I might, however try to t alk you into living just a bit longer. Of course, you know that life's path is full of bumps, lumps, dumps, jumps and those Forest Gumps whose moms seemingly know what that next piece of chocolate holds in store for you. We, on the other hand, seldom know what might be waiting for us just around the next corner.

I know y ou said that you aren't going to fight it, but...(here it comes...are you ready) can't you just show us one of your upper cuts or a jab or two or a one-two punch followed by a left hook. Now really, is that too much to ask. Wouldn't you expect me to do the same on my way out? Now, I am required to leave you a link here, so don't bellyache...just go to it and read the material. Love you, Paula.

http://hedgeek.hubpages.com/hub/The_...edical_Miracle

[quote=jeanb;882274]Paula,

I was so sorry to read your post. A quote from Steve Jobs came to mind because you always followed your heart:

Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.

Peace to you and your loved ones, Jean
http://www.pdplan4life.com/pdtulips/tulip-1inchweb.gif[/quote


beautiful words but especially coming from you Jean.

thank you .

urn not box
 

you'll never catch me inside the box. haha i would need a miracle not a gamma knife. i do beliee in them. love you too michael. [and i have no idea what you are talking about "getting peoples attention"?] :cool::cool:

flying
 

thanks tammy. i'm hoping we can fly when we cross over. it's a major wish. there's lots of universe.....u are quite brave. with love.

Sad
 

I am so saddened by this information that I hardley know what to say. At first I am selfish, thinking that I don't want any one I depend upon - and I as well as others do depend upon you in many ways - to leave this world. Then I think about you and how you must feel. I am sure your faith will help you though this.

I remember once a television documentary about a woman who was told her condition was terminal. She was questioned on how she could bear this information. She replied that every one must die, that even the adorable baby you see in your travels, once born must eventually face dying.

Yes, dying is part of living, but I just wish it wasn't so. I will be thinking of you.

Ann

Tears for you, my dear friend whom i have never met. Wise woman, elder, teacher --- now please teach us how to proceed out of here with grace---still believe in miracles, praying for your peace and illumination, and thanking you for sharing your soul with this profoundly strange fellowship that has drifted together here

With gratitude, respect and love

Paula, this can't be happening. You're why I fight so hard. You are so strong.

I don't know what to say Paula ...
 

although we have never met, I just know you are a nice person and your good nature reaches out. You have always made myself and others welcome on "the board" and I cannot help but feel angry that you have such bad luck with your health.

For the first time I really don't know what to say.

Take real good care,
Neil.

Paula, this post is from Joan Snyder (jes123)...
 

lovely words
 

What a beautiful post. thank you.

joan
 

i have not seen any pwp suffer as you do. and yet you make me laugh. that's the trick. i love you.

be strong and honest
 

and you are.
love, paula

paula
 

i type this because my voice fails me. your passion, compassion, wisdom, sense of humor and strength have taught, comforted, and inspired us for years, and continue to do so. thank you.

kate

I think you know
 

...that you are one of my favorites. you were not judgemental when i was insane on the wrong medicines. i have lived my life pretty openly here - it's like home and you are a family member. thanks for being my friend.

hey lower case lil,
i love ya paula, make your best peace.
ya know i'm from another culture, as they say.
make the very best of your gift of time, no one is given a guarantee for tomorow.
tammy