Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings
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