The Answer to all My Prayers

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If there is one thing Parkinson's patients dream of, it is the acceptance of their family as having a debilitating disease but still being a useful part of society. So many times the family wants to keep you as you have always been, just a mom or dad that's getting old. Parkinson's takes so many things away from us and the first is not our movement it is often our families. In their denial of the severity of our illness they leave us not only trying to survive but trying to make a new place for ourselves. In my instance, when Parkinson's came knocking at my door, I was , I thought, a quite happy senior farmer, retired and happy to live out my life without causing too many problems for anyone. I have never been one to do things the easy way. I have grown up and raised a family for the most part on my own in very humble surroundings. I never worried if we would all make it through, I BELIEVED. Following that same pattern, when Parkinson's came I set out to understand the disease and help those I found with it. Little did I know the road I was on. Now three years later and many, many miles traveled, I can happily say my family is proud of my accomplishments and the help and awareness I have brought to the community.
The hardest one to bring to my side was my oldest daughter who would have had me fade quietly into the background with no uproar or public view. She is my type A child, as I say and very much the leader of the pack. I have spent my whole life trying to make her very proud of me...For some reason I always felt slack in this field though I always knew how much she loved me. When Parkinson's came along, I felt it was the last endurable humiliation for her. In the past three years she has been there for me but really had no idea of the depth of my need to pursue a new life......a very public life.
I have had the feeling that if we showed the world our pain with Parkinson's they would help cure us. For the most part, PD patients are isolated from society and there fore forgotten. I sat out to be seen. I went from not knowing how to turn on my computer to running three blogs. I had never traveled by air and now do it monthly. I have found I have a voice and this weekend , at the 2009 Parkinson's Unity Walk in NYC my daughter saw what two years of daily effort can produce. I was surrounded by friends from all over the world. We hugged and cried as true friends do. I was interviewed and photographed from all sides. With or without the quilt Parkinson's was important and the world was watching. When the quilt made her coming out, she stole the show as I knew she would.
Not to many times in your life time do all your dreams come true, but I can say mine have. I told my daughter "I just wanted you to be proud of me" and she said, "Mom, I am so proud of you". and with that, the fact that I could only walk one mile this year and had walked two last year, was alright and I had once again held Parkinson's at bay.
What will I do in 2010 to fight? I will do more of what I have done this year, but in an even more intense way. I have always said if I didn't believe in this I would not be doing it. I BELIEVE A CURE IS CLOSE!....and we all need to stand up and be counted. Thank you Heidi for being a great daughter to a sometime difficult mom...love pokie

"SUCH A DAY"

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"Such a day" today and it was made even more fantastic because Vandalia, Illinois was visited by the "notorious" quilt angels who we all know have more money than they know what to do with and have very sneaky ways about them. My photographer (meagan) and I had an agreement on pictures of the Unity Quilt, with everyone involved getting a copy and when I was talking to Ladyhawk (Marla), she ask who was doing it and I made up a name knowing if she found out who was doing it she would pay for it. I thought I had handled it well and surely she would never find her. Well you don't mess with quilt angels!They travel in the "Boondocks" in search of things to do that make people cry....I had to be on the radio at 8AM this morning and Meagan was there in a Chamber of Commerce meeting.....just smiling!!!!! Never once did she let on that she had been tracked down and the bill was paid. When I arrived at her shop later in the day, she was all a smile and having "such a day" and she said to pass the word on to the quilt angels how much she enjoyed their visit and that she would stay in touch.....She is a wonderful, young photographer just getting started in hard times and these quilt angels made both her day and mine...I love you all so...POKIE

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ISN'T SHE BEAUTIFUL?

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The last four days have been a world wind of events that would defy only the hardy. Wednesday I will leave with the Parkinson's Unity Quilt in hand for New York City for my second Unity Walk. It seems impossible that a year has passed. Parkinson's Disease and I have walked, stumbled and cried our way down many a road. I have traveled across the United states in all directions listening to the very newest treatments from the foremost clinics and doctors. I have been to some of the best clinics and hospitals that Parkinson's has to offer. A year ago I would have had trouble sending a chain letter to twelve friends because first I would not have known twelve people who could use the Internet and second I would not have known how to attach the chain letter. Now my address book goes on and on. Friday the quilt and I will venture to the TODAY show in hopes of being interviewed for Parkinson's. Saturday my team Pateintslikeme will be interviewed for the web cast. Our team is running in the top ten for donations. Then yesterday Dr. Geoff Rutledge contacted me from Wellsphere and invited me to guest blogger on his website http://Healthbloggers.com. Now really....a year ago I was a sixty two year old goat farmer in the middle of Illinois who was having trouble walking and hurt all over.

I can only say when God decides to change your life and take you on a ride, he does it first class. I have been in such severe pain yet have never had one day in three hundred and sixty five that I have not fought this disease with all I have mentally and physically. There is so much more to PD than the meds. The depression is constantly waiting to get a foothold and drag us down into a bottomless hole. The meds we have to take make us sick and interact with each other, leaving us fatigued and grouchy and feeling useless to ourselves and the outside world. We are not useless and we are not a someone in the corner of the nursing home left to sleep all day. Just as our quilt shows, we are vibrant outgoing people with a story to tell and a smile to send....and willing to hug if you'll come near...No two of us is alike as is our disease and the way it ravages us. A collection of odd shapes and sizes in every color that look by their selves, singled out, like a miss fit.....BUT PUT THEM TOGETHER and look at them shine....Unity just waiting for the world to take notice at how unique and special we are. more to come .... love pokie

ISN'T SHE BEAUTIFUL?

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