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Pokie's Journey to 2009
September 2008
Tuesday September 23, 2008
Posted by: pokie too at 8:13PM CST on September 23, 2008
Parkinson's is a neurodegeneratie disease that affects more than one million Americans. We are not just in nursing homes pushed to the side in a wheel chair and and left to sleep the day through. There are people in their late twenties or early thirties that have this debilitating disease and more are showing up every year. It knows no boundries, be you young or old , or rich or poor, You stand a chancre to have Parkinson's Disease and though you do not die from Parkinson's you will die with it.. The first walk was 14 years ago and with their 200 supporters they raised $16,000 for research. Last year there were over 10.000 people there and we collected $1.8 million dollars. God touched me that day in oh, so many ways and I made friends for life. I found myself happier than I had been for years. The smiles and tears just kept on coming and there was no project too extreme. So this is my challenge to you. visit the site www.unitywalk.org or info@unitywalk.org. Call them @1-866-789-9255 ..Check it out and find my team.Patientslikeme. Make a donation and follow us to the end which is really a beginning.... love pokie Thursday September 18, 2008
Posted by: pokie too at 3:30AM CST on September 18, 2008
I'm going to break stride for awhile and give you a little insight into what is going on on my home base which is Paientslikeme.com. My idea has been to tell you about some of the interesting people who come to the site daily as friends and sometimes neighbors joined together by he need to find someone or something that can help them fight this disease we call Parkinson's..As the story unraveles, you must know that nothing is ever written that is not discussed first with that patient and permission is given.
The site is a buzz right now. We are organizing a quilt project and hope to have it ready for display at next year Parkinson's Unity Walk in NYC. This is a huge undertaking and one that will show the world just how close we are. Each patient, who desires, will submit a square which will be transposed by one of our members to show the final quilt before we even start. The MS side of the site just finished one and had it on display in Martha's Vineyard this weekend at a MS Marathon. You cannot believe the enthusiasum that is flowing from people who are chronically ill. The more of these projects I can come up with, the more I look for, because people who have not had a friend to talk to, or an event to look forward to, or something to be proud of tend to be lonily and depressed and their pain becomes more than they can bare. With something to focus on besides the pain, the pain takes a back seat for awhile and they can rest. That's what we do on Patientslikeme.com, furnish a home for patients in need, help them with their medical experience by teaching them how to monitor their symptoms and doctor visits, and in return they open up about most anything involved with this disease and the site researchers document and cross reference this responses. Right now we have the quilt, a campaign to get the red cane recognized as our national symbol as is the tulip. Trips are being planned to conventions and just yesterday a new site opened for MSA patients. Along with all this we are in contact with our members in the path of IKE and trying to cheer them just a little. I, Pokie Too, and over two thousand other posters have found and continually guard a place we call home and thank Our Maker for providing us with a place to endure our pain and all it's side effects with someone who understands because they have been their too.......Pokie Too So you see, I just had to tell yo of the happiness that is flowing and the friendships that are being made in the face of pain and extreme illness.. .
Monday September 8, 2008
Posted by: pokie too at 8:03AM CST on September 8, 2008
I woke up this morning and I could not wait to get my coffee and head for the computer to tell you about this guiet little lady that I have known for a year and it seems like I have loved for a lifetime. She lives in upper New England and just recently past her one year anniversary for being diagnosed with Parkinson's. Our relationship started on Patientslikeme.com about the same time.It continues to amaze me that God could gather so many in one place from all over the world at one time When confusion is confronting you on all sides and you need a sense of direction , there is Marla. She always presents a calm collected side whether she feels that or not. We have prayed and cried together and I love her deeply. She has a daughter who she just got of to college in the last month and is surrounded by an adoring family at home. She was the lady who came on site last winter and mentioned that they were viewing a solar ecilse in New England and how beautiful it was which triggered and all night vigual of the solar activity from most states in the union. I can remember how cold and clear it was and yet I had the basement window open, wrapped up in a blanket, typing as fast as I could to tell the whole story from my corner of the world. In sixty some odd years, I had never watched an eclipse let alone wrote a poem about it and it all went on line. We played like a bunch of litle kids that night and Marla was our leader.Our own Ladyhawk.
Now once again we are calling on Marla to pull our efforts together for the 2009 Unity walk for Parkinson's in New York City. And once again she is out in the front yelling , "come on guys, we can do it. I know we can!" New tee shirts are being designed, projects are being planned and we are off to New York to find a cure. If I shut my eyes, as I often do, I can see Marla running in front of us with that beautiful smile lighting the way. How could we not win?
"We should be glad for distant things, For beauty" round the ben:d. For highways that lead on and on With never any end. Be glad for goals just out of reach, The challenge of a star, The glory of a distant light that beacons from afar. For hopes and dreams are built on That enchanted distant mile, And far of bright horizons Make the road today wothwhile." H.L.Marshall
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\ Friday September 5, 2008
Posted by: pokie too at 4:05AM CST on September 5, 2008
Jack was one of the first patients to enter my life from Patientslikeme.com.....An out spoken little guy from the state of New York who was a chemist by profession and married his childhood sweetheart who died several years ago leaving Jack behind and very alone. He has been battling many things for the past 27 years and one of them is Parkinson's Disease. Jack suffers from something called retrupulsion which causes him to walk backwards until he falls. The last fall iIknow of landed him in the ER with 7 stiches in his head.. Jack and I have had our ups and downs on the site. He is a buddist or hindu and I am Christian. He was a realist and I am a dreamer. Often we clashed because of religous interpretation be it good or bad.
..One night early this spring I blogged this story about Jack on my blog site http://justmeantiques.blogspot.com . ...I went to one of my favorite places tonight and a very special friend had left a poem behind for me to read. Ordinarily I would have said, "That's nice," and went on to something else but as friends often do, he caught me off guard and this is the result: Jack is a very intelligent, well educated man and his emotions run very deep, yet he has the aura of simplicity amidst extreme turmoil. His question was this, "If only I was content with how things are." and it set forth a flood of emotions within me. Just two words had caught me at one of those rare moments when I knew just exactly what he was saying and my answer was,"me too Jack!"
I went to my granddaughters track meet today, no big thing for most but you either sit or stand at these events and since standing was out of the question, sit I must in the bleachers. They motioned me on and I took a deep breath and grabbed an arm and made it up to the seventh row only to sit there the whole time and wonder how I would get back down. When the time came, I had someone on both sides and we very caustiously went back down the stairs while all around me I could hear the thought, "Gosh she has gotten worse,"and you know what ,Jack., She has. You never know when start into one of these moods if it will be a free fall or just a stumble. But for the first time I envied those who walked normal. I could feel every step those runners took and I wanted to run too. I wanted youth and all it's unabandoned freedom. I did not want the responsibility of this disease. I wanted to fly. I can only hope that when my time comes my Lord let's me fly....thanks for coming back Jack. Now several month later it is almost fall and my friend Jack has disappeared in cyberspace. He called me unexpectantly one Saturday afternoon and I have never heard from him since. My emails do not come back but they are never answered and I can only wonder if his family has stepped in to his life very strongly......Hang in there Jack, I miss you.......Pokie . ..
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About This Blog
A description of my journey to the 2009 Parkinson's Unity Walk in 2009, including interesting stories and bio's on our team members, our thoughts on our goals and dreams as we work toward our goal. We will be and currently are Team Patientslikeme.com. Our home is this website where we post daily. Our goal is to raise at least $25,000.00 this year for the cure.
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• Jessus, prayer, pain
• Christmas, rebirth • hope • support • caring • washington U • Parkinson's • PAN FORUM-2 • pokie too • Fayette Co, Ill • pokie too-3 • brother
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