Parkinson's Disease Tulip


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Old 10-07-2008, 02:43 PM #11
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Originally Posted by rosebud View Post
A lot of us are becoming old war horses. This weekly checkin thread has new life....hmmm.

Harley, you poetry is beautiful and sensitive. I hope you and Steve have a great visit, and although It looks like I will have to make the journey alone (I was hoping to bring Max19BC with me, he has other committments) I'm going to do my best to make it to the conference in Seattle.

Steve: I am so looking forward to seeing you again. Harley is right...there are still good men out there, and you are one of them.

Love you all...J
Well Thank You!..Same to you!..It will be good to see you again too!..So..you better make it over there!..Thats, an...uhhhh..order!! Thats right..I might have pd...but Im still the Capt

I booked my flight today
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Old 10-07-2008, 03:08 PM #12
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Evonne..I completely understand how you feel..We have all been there, and it still comes up for review on occasion..I got sober in AA almost 19 years ago on Oct 30, 1989..My live went through a profound transformation..Basically, I came out of the darkness and into the light..My belief developed into faith..Life got good..My thinking and my behaviors changed for the better..I reached out to other alcoholics and drug addicts, and helped a few find this unmerited gift of sobriety and life..Then on May 14, 2004 I found out I had Parkinsons Disease..I was taken aback, and scared..and yes..I was angry at God..I felt like it was just another chapter written in my book of failures, penance, punishments, and business as usual, that had been the story of my life..The payoff, but this time for trying to align my will with God's, instead of going against the grain of His will..How #@$%&@* dare He do this to me!!!!..That was my first thought..My second thought was...


That is the very basic principle that sums up the 12 Steps of the AA program..It is the code that I live by to thrive and prosper..When I apply it to my life, I find hope..What happened as a result of applying it to my Parkinsons is..I no longer dwell on what pd has taken from me..I am grateful for what it has given me

Sure it has taken from me..It has weakened me..It had brought disability..I have been a commercial fisherman for 33 years..I love my profession..It was my calling, and pd took it away..I had a 47' wooden fishing trawler, that I had completely rebuilt in 2003-2004..I spent over $30,000 on it, and in Nov of 2006, I sold it for $10,000, because I couldnt take care of it anymore..I couldnt paint the 8 gallons of paint on it that it required every spring anymore..I couldnt deal with tending her during winter storms anymore, walking down icy docks in the middle of the night..And I didnt have the strength or the stamina to fish 12-14 hour days anymore..Being a long time fisherman, I was part of a brotherhood of our fishing community in Rhode Island..I was a fisheries advocate..I took the State and the Fed's almost all the way to the U.S. Supreme Court for violating our Constitutional Rights, and that battle wages on today, as we speak, only without me..Pd took that from me

Pd brought more changes than I could keep up with for a couple of years..SSDI..Financial hardship..getting medicated..change of Drs..fear..Uncertainty

I found this forum in Dec of 2004, and I began posting here..and the people here, through their advise and collective shared experiences, gave me hope..I read about how thier lives went on after pd..They shared their joys, and their sadness..their victories and their defeats..their wisdom and their doubts..their knowledge and their integrity..their understanding and their compassion..their honesty and themseves..their hope and their strengths..their fears and their courage..and their fortitude to dare dream their dreams..and I began to realize that pd was part of a new journey through life, that opened a new chapter to self discovery..compassion, and deeper understanding..Personal and spiritual growth..and a new found wisdom, perspective, and appreciation for life..I made solid friendships here..Real friendships..I have met 12 of the folks who post here during the past two years..I got to met Lonnie Ali last Feb..I got involved in Pd advocacy..I was a PAN Rep for two years..I am a board member of our local chapter of the APDA..I served on the website committee, and on the annual walk committee..I am a member of two local support groups, and treasurer of one of them..As an aqaintance of a fellow board member who happens to be a Professor at URI, I was invited to a class of 6th graders, and a school for poor inner city kids, many of them minorities who live in a state with thousands of miles of coastline, but have never been to the beach, to give a lecture on my life as a fisherman, and share with those kids how fish are caught commercially..The noble job of posting the Weekly Check In thread has been passed down from parkie to parkie for years, and my dear friend Jaye passed it down to me, and I have grown tremedously because of it

And most of all, Harley and I have struck up quite the friendship, and as most of you have probably already figured out, it has developed into more than a friendship, and on the 23rd of this month, I am gonna fly across the country to meet her..And I am more excited than I can put into words!! ..I am going to stay for a couple of weeks and we are going to the Hope Conference on Nov 1st..So I have had pd now for about 6 years since my first symptom..It has taken alot from me..But it hasnt taken my ability to experience excitement..It hasnt left me devoid of hope..It hasnt taken away my right to dream my wildest dream..It hasnt taken away my ability to love and be loved..It has restored a deeped faith, and it has given me the ability to accept life on its own tems, and not as I would have it..Harley and I would have never met without this disease that brought us together out here in cyberspace..Pd will allow us to touch the lives of many, as they will touch ours

Evonne..It is ok to feel the way you feel..Acceptance is a process that begins with many mixed emotions, and it will come to you in time through the experiences of your journey..It is always a joy to read what you contribute to this thread as often as you do, in terms of your courage, and openess to share your journey with us

When one door closes, another one opens
Steve,

As I read what you wrote the tears began streaming down my face. You have been through a lot and your story is very inspiring. Thank you for sharing your story with me and for understanding right where I am at this very moment in time. I have also found this forum to be a great source of support and I truly value that. If you were to ask my hubby he would say that I am addicted to the internet...and probably blame the Mirapex!!! I have been turning to you guys more than I have been turning to him...but you guys understand EXACTLY what it is like because you have been where I am. Don't get me wrong, my hubby is a GEM and I let him know it. I share my feelings with him as well, but he just wants to fix this...and he can't. I just need him to learn to listen, and not try to fix this. I need him to try and understand the sense of urgency about life that I feel. Our 15th Anniversary is on October 9th. We have weathered some storms together and we are sure to weather some more. I am grateful to have him along side as I travel down this road in my life.

I applaud your sobriety, that takes a lot of courage. Many people lack the courage and strength to do what you have done. You are a strong man!

I hope that you and Harley have a wonderful time together. Enjoy the conference!

Love,

Evonne
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stevem53 (10-08-2008)
Old 10-07-2008, 06:10 PM #13
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Originally Posted by Evonne View Post
Steve,

As I read what you wrote the tears began streaming down my face. You have been through a lot and your story is very inspiring. Thank you for sharing your story with me and for understanding right where I am at this very moment in time. I have also found this forum to be a great source of support and I truly value that. If you were to ask my hubby he would say that I am addicted to the internet...and probably blame the Mirapex!!! I have been turning to you guys more than I have been turning to him...but you guys understand EXACTLY what it is like because you have been where I am. Don't get me wrong, my hubby is a GEM and I let him know it. I share my feelings with him as well, but he just wants to fix this...and he can't. I just need him to learn to listen, and not try to fix this. I need him to try and understand the sense of urgency about life that I feel. Our 15th Anniversary is on October 9th. We have weathered some storms together and we are sure to weather some more. I am grateful to have him along side as I travel down this road in my life.

I applaud your sobriety, that takes a lot of courage. Many people lack the courage and strength to do what you have done. You are a strong man!

I hope that you and Harley have a wonderful time together. Enjoy the conference!

Love,

Evonne
you dont live too far, you should try to make it to the conference... here's something for you and your hubby..

My Needs

My days are full of uncertainty and tribulation.
As my companion,
your desire to make life easier for me
is a pillow for my aching body
and a lift to my spirit.
The tireless chivlary you carry
shows wear neath your brow.
Our lives can no longer guess
which course is necessary to take.
When reality calls for the truth,
you look to me and ask
what my needs are.
There is no guideline
informing me of what lies ahead.
The questions you ask echo through my mind
and bounce off walls of perception.
My independancy is a test of my faith.
This is a game I am forced to play.
The rules change continuously,
and are often misleading.
Do not try so hard to understand.
Knowing what the answer is
doesn’t matter
and wont change a thing.
Today
Hold my hand and look into my eyes.
Enjoy the good moments
I ask for nothing more.
God will provide.
He knows my needs.

©Laura J Dean


ps/// yep.. the captain and i are "hooking" up.. pardon the pun
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Last edited by harley; 10-07-2008 at 06:42 PM.
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stevem53 (10-08-2008)
Old 10-08-2008, 10:09 AM #14
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Quote:
Originally Posted by Evonne View Post
Steve,

As I read what you wrote the tears began streaming down my face. You have been through a lot and your story is very inspiring. Thank you for sharing your story with me and for understanding right where I am at this very moment in time. I have also found this forum to be a great source of support and I truly value that.
Thank You!..This forum is the greatest, and you will find as you get to know folks here, and maybe even have the opportunity to meet some of us, the healing process will get on the fast track

I would suggest you try, if you can, to make it to the Hope Conference, and bring your husband with you..Harley and I will be there, Jean B, Rosebud, and I think Indigogo aka Carey, probaby a few others..Just a thought

Quote:
If you were to ask my hubby he would say that I am addicted to the internet...and probably blame the Mirapex!!! I have been turning to you guys more than I have been turning to him...but you guys understand EXACTLY what it is like because you have been where I am. Don't get me wrong, my hubby is a GEM and I let him know it. I share my feelings with him as well, but he just wants to fix this...and he can't. I just need him to learn to listen, and not try to fix this. I need him to try and understand the sense of urgency about life that I feel. Our 15th Anniversary is on October 9th. We have weathered some storms together and we are sure to weather some more. I am grateful to have him along side as I travel down this road in my life.
I can understand that your husband wants to "fix" you..Of course he would..I think that is a natural instinct..He will go through a healing period as well, and I suspect that when you begin to heal and accept, he will too..In my travels to support groups, it has always been an inspiration to witness the unconditional love and support that is given by some of the care partners..Sometimes we seperate into two groups..parkies and carepartners..Sometimes the carepartners need to talk amongst themselves to vent, and/or share their concerns, whatever the case may be

Quote:
I applaud your sobriety, that takes a lot of courage. Many people lack the courage and strength to do what you have done. You are a strong man!
Thank You!..I could not do it without the help of other people..Parkinsons is the same..We never have to be alone

Quote:
I hope that you and Harley have a wonderful time together. Enjoy the conference!

Love,

Evonne
We will
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