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Pokie's Journey
Wednesday August 4, 2010
Posted by: charlene pryor at 5:03AM CST on August 4, 2010
It's been an already maddening week, and things don't look like they are going to let up until maybe next week for me. This is such an exciting time in the Parkinson's community, unlike anything I have witnessed in four years of advocacy. The big thing event, at the moment, is the Parkinson's Global Congress in Scotland this Fall. I have been working with The Parkinson's Disease Foundation and Patientslikeme.com to produce sixteen 2ft x 2ft panels to be joined together to make a large display quilt for Parkinson's Awareness, much as the Aids Quilts were used years ago. I have been serving on their production committee since it's beginning last October and now we have over 600 entries submitted for display. My decision was to join Patientslikme patients together on one quilt. not only to promote our web site, but to show the close net community which thrives there in the form of patients and caregivers posting on the forum. The finished product was amazing. So often the general public believes Parkinson's patients have no creative abilities once diagnosed with the disease and this is so wrong. In PD the mind is the last to go. We may become slower, but possibly more percise and more meaningful. Things the ordinary person takes for granted, is concidered dear to us. We are a vital and productive part of society We are your past and your future......because through research, we are the link to the cure. love Pokie
... (more) Saturday July 31, 2010
Posted by: charlene pryor at 4:47AM CST on July 31, 2010
Look what showed up in the Vandalia Leader Union Yesterday. It's a national release and the town is quite the buzz.Vandalia resident, Charlene Pryor, recently used her talents to contribute to the Parkinson's Quilt, a project of the Parkinson's Disease Foundation(PDF) seeking to raise awareness of Parkinson's disease (PD) and the need for a cure.
Pryor, 63, was diagnosed with Parkinson's in1995 and took up quiltiung as a hobby in 1980. Among the many quilts she's created over the years, one of her favorites is a piece she made about her experience living with Parkinson's So when she heard about Parkinson's Quilt Project, which will bring together quilts from all over the world, she was eager to get involved. She not only seed a panel for the quilt, she also serves on the project's volunteer advisory committee. In this capacity, she performs outreach to other people affected by Parkinson's letting them know that they too can play a part Pryor's own quilt panel, entitled "Thanks" is a tribute to the various Parkinson's organizations, including PDF, hat provide important services and information for those with PD. Her panel, which she sewed in one week, features logos of each charity, which Pryor calls "lifelines" for those with Parkinson's Pryor said of her effors, "I am grateful that PDF was able to provide me with this opportunity and that they're bringing together quilters ho have the same goal in mind: to let others know about Parkinson's. "I also hope that my contribution to the quilt project lets others see that they too can help make a difference by becoming involved, whether by quilting or any ohert means." Robin Elliott, executive director of the Parkinson's Disease Foundation, the organization that is leading the quilt project, said, "The true power of the Parkinson's Quilt Project comes from 600 individuals such as Pryor, who actually create the pieces that we assemble. when the quilt is displayed for the first time at the World Parkinson's Disease Congress in Glasgow, Scotland in September, it will radiate her contributions and those of hundreds of others aound the world who, like her, are touched by Parkinson's. "It will also remind the wold that we need increased awareness and funds to find a cure for Parkinson's. We applaud Ms. Pryor's efforts to help make all this happen." Those interested in learning more or requesting an image of Ms. Pryor's panel can o so by calling PDF at (800) 457-6676, emailing info@pdf.org or visiting http://support.pdf.org/quilt About Parkinson's Disease: Parkinson's disease is a progressive neurological disorder that affects nearly one million people in the U.S. Although promising research is being conducted, there is currently no cure for Parkinson's About the Parkinson's Disease Foundation: (PDF) is a leading national presence in Parkinson's disease research, education and public advocacy. It is working for the nearly one million people living in the U.S. with Parkinson's by funding promising scientific research to find the causes of and a cure for Parkinson's while supporting people with Parkinson's, their families and caregivers through educational programs and support services. Since its founding in 1957 , PDF has funded more than $85 million worth of scientific research in Parkinson's disease, supporting the work of leading scientists throughout the world.
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Sunday July 25, 2010
Posted by: charlene pryor at 5:14AM CST on July 25, 2010
Coffee would be good and maybe I should fix another cup before venturing on. My question is..What is going on and is it just seniors that are having trouble coping at this minute, or is everyone? I open my Facebook and the questions start coming in on chat. What should I do about insurance or SSDI, or ..."All our funds or going for medicine and we cannot afford food." Where are the family support factor for these patients and caregivers? Does America know or care that it's seniors are slipping through the cracks and BECAUSE they are extremely proud and not accustom to begging or following they are being blind sided by multiple needs at a time when all of this is way to complicated for them to handle.
For someone with a chronic disorder such as Parkinson's, everyday is a whole new ball game and you never know your standing because the call was never made whether you won or lost the day before. You just get up and try to survive the best you can with what you can use that day. Some days you can walk and some not. Some days even feeding yourself is an all out struggle physically and mentally and yet your expected to get on the phone and battle endlessly for handouts to which you should be intitled......after all as a senior American, you are the foundation of this country....you are it's legacy it's story. In most foreign countries you would be treated as a treasure yet in America you are left to be in fear of some one realizing how poor you are and moving you to a state nursing home to be pushed into a corner to sleep the rest of your life away in a wheelchair. Who decided we, as seniors, were no longer productive? Why when our hair turns gray, are all the good things in life suppose to stop? I am closer to 64 than 63 and not only have Parkinson's Disease but Epilepsy and various other things. I have traveled this road for fourteen years now and not without a lot of tears but the smiles and good times far out weight the pain and sorrow. My ability to manage is still here. I just move slower and slightly bent forward. When I talk , which is often, I look you straight in the eye as I expect you to do me. I can still see the soul through the eyes and can still feel a lie in my gut. I can still feel loved when a friend from long ago holds me or kisses me and most important of all that friend and I can get together and what one doesn't remember the other does from days in our youth. Do you understand that this is??? America's history..a prized possession? Will the next two generations of today have the memories of the forties, fifties and sixties to tell of? When we are gone will we be missed? We have been unique to our time and now as a treasure for all are being allowed to go into free fall with no net to save us before we are gone...Love always Pokie
Monday July 19, 2010
Posted by: charlene pryor at 7:37PM CST on July 19, 2010
Some may wonder what I am doing by trying to drum up interest in a ALS meeting when I have Parkinson's Disease. For one thing the disease has intrigued me for the past four years. As with most Parkinson's patients, there is always that voice in the back of your mind questioning the doctors every step of the way. When times are bad you wonder if indeed you have Parkinson's and instead have MSA or ALS and then when times are good you wonder if you have anything at all. This is usually when a patient messes around with or stops taking his or her medication and then really gets in trouble. Well to make a very long story short I have done all of the above and followed this group from my beginning as a patient. ask Wen they would post an upcoming meeting, i would write and ask to attend only to find that. all these meetings were for researchers and doctors BUT LOOK OUT ST. LOUIS.....Because August 25th, 2010, at the Doubletree Hotel, Westport. St.Louis Dr.Steven Perrin, ALSTDI's Chief Executive Officer will lead a discussion open to the public upon registration.. To register you need to go to http://www.als.net/als101 or contact Jessica Sullivan at jsullivan@als.net or call 617-441-7238.
Dr. Steve Perrin will present "ALS Research 101" which includes topics on ALS genetics, biomarkers, clinical trials, biogenics, stem cells and more. The seminar will also include an open discussion to answer all of your questions.
Complimentary shuttle service from Creve Coeur Airport will be available.
I will be posting more about this as the date draws near in hope for a standing room only crowd. Love pokie
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Sunday July 18, 2010
Posted by: charlene pryor at 5:04AM CST on July 18, 2010
Months have rolled by while my life has been on semi sleep mode regrouping for yet another push forward. At last talking to you, I was finishing the Colon Cancer Undy 5000 in Forest Park, and loving it. Then off to New York City in April for the Parkinson Unity Walk where my team Team PatientsLikeMe raised $14,000.00 for research....then exhaustion. I am now learning to schedule my time and sleep at regular intervals. One thing I had to cut back on was writing and focus, focus, focus. My new seizure medication kept me extremely tired and I would no more get started on a project and have to go lay down....Ah, but alas...I'm back....and I hope even more informed on all topics...Besides Parkinson's, I now follow Epilepsy, the top 6000 rarest diseases, and Colon Cancer. I am a Member of "Not on My Watch", a program started by Kimberly Clark to stop Hospital Associated Infections, (HAI). and just finished pulling a 16 panel guilt to go to The Global Congress in Scotland in the Fall. Hopefully my scale back and rest that followed will only add new jest and excitement to my writings. So until later...love Pokie Saturday March 27, 2010
Posted by: charlene pryor at 11:50PM CST on March 27, 2010
Thank you St. Louis for welcoming some friends of mine who are at the top of my list. They arrived here Thursday night to usher in the Second Annual Undy 5000 Run for Colon Cancer and though we are not quite up to the Susan P. Koman stage yet, like them we are starting small and hope to grow much, much larger and this weekend was no exception. The weather was a little on the cold side this morning, but Forest Park reminded me of a little Central Park and we were just such a happy crowd. Our numbers were high though I don't have those exact figures yet and I was so proud when I saw all the cars at the Muny Parking Lot. You are so fortunate to have witnessed the work of two very special people, experts both in what they do, set up these fundraisers and in my estimation Stacie cannot be beat. She is no bigger than a minute with every bit of that energy and she knows what she's doing at all times.....and then there is Gary and all the pieces come together....the signs on the road, the tee shirts and extras. As you can tell these two are my friends and thanks to you I will get the privilege of having them visit me again next year for the Third Annual Undy 5000.....Thanks Pokie
Tuesday March 16, 2010
Posted by: charlene pryor at 11:46PM CST on March 16, 2010
This month is Epilepsy month and our color is purple. March 24th is our day....Could you deck out in something purple and wear it all day and remember that maybe your healthy but so many are not. If you are healthy, put that health to a good use and spread the word "One on One." Pick a cause. Go with a passion. I heard recently that if you ignore a passion it is an insult to God. I would never want to insult God. My list of passions is growing daily..It use to be all Parkinson's Disease and then I had a seizure and I added in Epilepsy. Rhuematoid Arthrithis was being presented to me and then all Neurological Disorders. Then came the Komen Race for the Cure and The Undy 5000 for Colon Cancer. My guess is as the world gets in worse shape the causes get worse and appear to need more help. My son brought to my attention yesterday the movie "The Cove" and if you will please research this on the web. Japan is killing dolphins thousands at a time. They harvest show stock and slaughter the rest for food ONLY the catch is they are contaminated with mercury....so in the catch 22 situation.everyone looses. There is a site on Facebook to research this cause and become aware. Help us that fight these wars in our old age to win a battle once in a while...love Pokie
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