I happen to think last night that with all the articles I have written for the other panels and walks and teams I have not wrote a thing explaining my panels and their beginnings and endings. The first was the "Christmas in Parkinsonville" which started much, much simpler and smaller in January when I was very much snowed in on top of a very steep hill with no hope of getting out for a month or so. As cabin fever crept in, I decided on my panel theme and started tearing an old vest apart for material. At this point it was hanging on the wall in my study an I would pin things to the material as I found something that interested me BUT soon I began getting up in the middle of the night and gluing and stitching. I knew I was exibiting true excessive compulsive behavior but since the panel was to be about me I let it run rampant. Next things began appearing on top of other things. Something would fall off and I would have to hand stitch it on again.....Colors clashed and appeared non perfect. Stitches changed from night to day in size and beauty but when it was finally done and in all of it's imperfection I realized I had really grasped the idea of Parkinson's Disease at Christmas or any other time of the year....an adult mind allowing the child mind inside to come out and play for a day and then at night the adult and child minds to be able to settle down and smile at the resulting accomplishments. This was my first square in January......
Then I stopped all sewing in preparation for the 2010 Parkinson Unity Walk in New York City. In my life nothing ranks higher and all focus heads there most of the year. As our team developed and contributions came in my enthusiasm just usually goes of the charts and leaves room for nothing else in my life. With Team Patientslikeme reaching $14,000.00 Dollars for research and the trip of a lifetime lived, I was back home to sew and realized I was several panels short of 16 for a full quilt.......so you know me. I shut down everything else and sewed for almost a month.
From that sewing came "To All PD Heroes Who Have Fallen", "A Walk in the Park for Parkinson's Disease" "One on One"and the one I am working on to finish now "Thanks" and I loved every minute of it.
Several people along the way sent me belongings or pictures and I made squares for them, V Wig and Peter and next Saturday they will leave my care for New York and the world. It will be much like sending your children off to college for me and leaves me to wonder what next, Who Knows love ya Pokie
Showing posts with label 2010 PUW. Show all posts
Showing posts with label 2010 PUW. Show all posts
Tuesday, June 1, 2010
Tuesday, April 20, 2010
Yes You Can
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Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings
Where am I going, and how do I get there, and what is the best I can expect? Three such special questions that I waited until last year to ask myself. About the same time as the 2.0 Health Conference in California last year, I was terribly sick and could not figure out why, nor could the doctors. My PDR's were running in the 50's and everyday was a total struggle. I felt terrible. I felt bad enough I ask my favorite doctor, "Is this the end? Are you sure I have PD and not ALS....this is terrible?" I kept plugging along though my endurance and strength was zero. I never put it on the internet except to take it to the researchers on PLM. I said, "These are my symptoms and lab results, xray readings and anything else I can find can you help me and article that I needed to read started popping up on my Facebook homepage. The word got across and I did not give up. I was setting up my live feed for Q&A on my blogs at the 2.0 Conference and stepped into the kitchen for water and God sent me the reason for my problems. I had a grand mal seizure and laid on the floor for three hours before my mom found me...Ah, I now have Epilepsy AGAIN or still....No seizures that I knew of since 1996 and now..BUT I have a different kind of EP, Absence and Nocturnal are my thing.....This day I was just way too over stressed and on no medication. My brain was firing in all directions and not connecting.
After a week in the hospital and loosing the opportunity of a lifetime at the conference, I heard Jamie Haywood from Patientslikeme.com had also been a speaker at the conference and his speech just resonated in my head everytime I heard it, which was many. That passion that had lit a fire three years before now was fanned into a full blown bomb fire. I have never looked back and don't plan to. For what time I have, I will fight for the patient but more importantly I will encourage the patient to fight for himself. He is truly the only one who knows how he feels, in his bones, in his mind, and in his heart.
Focus, Focus.....I have lost this somewhere in the stack of papers on my desk, and because of that I am having a terrible time packing for my NYC trip. I need such a variety of clothing and just cannot seem to concentrate.....and every time my feet hit the floor my mother comes upstairs and sits down to check what I am doing...I do hate this. She asks me also where I am going...some times 20 times a day.....then who is going with me.....then when will I be back? By then I have forgotten what I was wanting to put in my suit case. I tried tiptoeing but that is not some thing PD patients do very well, especially this PD patient on squeaky floors. Oh well, I have to look forward to this too. She is 84 and has Alzheimer's. I hope when I get to this stage I live by myself so I can enjoy it.....
So to sum up my ramblings, I will do the Unity Walks forever and you should also. The feelings are ones you need to survive today. HOPE, FRIENDSHIP,COMMUNITY, AND THE FEELING YOU CAN.......................YES YOU CAN love ya Pokie
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings
Where am I going, and how do I get there, and what is the best I can expect? Three such special questions that I waited until last year to ask myself. About the same time as the 2.0 Health Conference in California last year, I was terribly sick and could not figure out why, nor could the doctors. My PDR's were running in the 50's and everyday was a total struggle. I felt terrible. I felt bad enough I ask my favorite doctor, "Is this the end? Are you sure I have PD and not ALS....this is terrible?" I kept plugging along though my endurance and strength was zero. I never put it on the internet except to take it to the researchers on PLM. I said, "These are my symptoms and lab results, xray readings and anything else I can find can you help me and article that I needed to read started popping up on my Facebook homepage. The word got across and I did not give up. I was setting up my live feed for Q&A on my blogs at the 2.0 Conference and stepped into the kitchen for water and God sent me the reason for my problems. I had a grand mal seizure and laid on the floor for three hours before my mom found me...Ah, I now have Epilepsy AGAIN or still....No seizures that I knew of since 1996 and now..BUT I have a different kind of EP, Absence and Nocturnal are my thing.....This day I was just way too over stressed and on no medication. My brain was firing in all directions and not connecting.
After a week in the hospital and loosing the opportunity of a lifetime at the conference, I heard Jamie Haywood from Patientslikeme.com had also been a speaker at the conference and his speech just resonated in my head everytime I heard it, which was many. That passion that had lit a fire three years before now was fanned into a full blown bomb fire. I have never looked back and don't plan to. For what time I have, I will fight for the patient but more importantly I will encourage the patient to fight for himself. He is truly the only one who knows how he feels, in his bones, in his mind, and in his heart.
Focus, Focus.....I have lost this somewhere in the stack of papers on my desk, and because of that I am having a terrible time packing for my NYC trip. I need such a variety of clothing and just cannot seem to concentrate.....and every time my feet hit the floor my mother comes upstairs and sits down to check what I am doing...I do hate this. She asks me also where I am going...some times 20 times a day.....then who is going with me.....then when will I be back? By then I have forgotten what I was wanting to put in my suit case. I tried tiptoeing but that is not some thing PD patients do very well, especially this PD patient on squeaky floors. Oh well, I have to look forward to this too. She is 84 and has Alzheimer's. I hope when I get to this stage I live by myself so I can enjoy it.....
So to sum up my ramblings, I will do the Unity Walks forever and you should also. The feelings are ones you need to survive today. HOPE, FRIENDSHIP,COMMUNITY, AND THE FEELING YOU CAN.......................YES YOU CAN love ya Pokie
Thursday, April 1, 2010
"Do you Always Shake Like That?"
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Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings
Isn't it odd how things happen? When I had a seizure in October of last year, most people including me thought what else? Parkinson's Disease has racked me with pain for four years and nothing they seemed to give me would help. My sleep was impossible to find and my Neurologist finally sent me to a Rheumatologist who decided I had Rheumatoid Arthritis., and more medicine was sent my way, but nothing could keep me out of the wheel chair. One doctor called me a "Neurological Mess" and another said,"You Walk like an Old Lady". I felt like an Old Lady too. But God would not let me lay down. My nights were spent on the couch or in the recliner and in two hour spurts I would sleep, then write, sleep then write, until exhaustion set in and I finally passed out, back on the couch. If I was lucky, my 85 year old mother would not catch me sleeping during the day because if she did she would get right in my face and say"Are you ok?" which proved only one thing I had a good heart if nothing else because the fright from being awakened from a sound sleep didn't kill me. Then came a Neurologist in this area who insisted on heavy seizure meds and the muscle pain from the Parkinson has just about went away.....Now I have a hip that needs to be replaced but that is a totally different pain than Parkinson's....Parkinson's pulls on every muscle and bone in your body. If the pulling and spasms from the pulling didn't wear you out the pain would. Thus I have arrived at a new split in the road and wonder what I will find when I have my hip done. I would jump at this BUT in three weeks I am on my way to something I plan for all year.....The Unity Walk in Central Park. If I have compulsive behavior it is centered around this. everyday and every hour seems to be consumed by visions of NYC and people I have met there. If this wasn't enough there is the book with people to call and books I want people to sign. I walked into the doctors office the other day and a lady said."Oh, dear, do you always shake like that?" "Yes" I said. "I have Parkinson's" and she ducked her head. I just walked off laughing and thought to myself, "I've never been happier in all my life, to which she probably thought,"yes, and she's crazy too." love Pokie
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings
Isn't it odd how things happen? When I had a seizure in October of last year, most people including me thought what else? Parkinson's Disease has racked me with pain for four years and nothing they seemed to give me would help. My sleep was impossible to find and my Neurologist finally sent me to a Rheumatologist who decided I had Rheumatoid Arthritis., and more medicine was sent my way, but nothing could keep me out of the wheel chair. One doctor called me a "Neurological Mess" and another said,"You Walk like an Old Lady". I felt like an Old Lady too. But God would not let me lay down. My nights were spent on the couch or in the recliner and in two hour spurts I would sleep, then write, sleep then write, until exhaustion set in and I finally passed out, back on the couch. If I was lucky, my 85 year old mother would not catch me sleeping during the day because if she did she would get right in my face and say"Are you ok?" which proved only one thing I had a good heart if nothing else because the fright from being awakened from a sound sleep didn't kill me. Then came a Neurologist in this area who insisted on heavy seizure meds and the muscle pain from the Parkinson has just about went away.....Now I have a hip that needs to be replaced but that is a totally different pain than Parkinson's....Parkinson's pulls on every muscle and bone in your body. If the pulling and spasms from the pulling didn't wear you out the pain would. Thus I have arrived at a new split in the road and wonder what I will find when I have my hip done. I would jump at this BUT in three weeks I am on my way to something I plan for all year.....The Unity Walk in Central Park. If I have compulsive behavior it is centered around this. everyday and every hour seems to be consumed by visions of NYC and people I have met there. If this wasn't enough there is the book with people to call and books I want people to sign. I walked into the doctors office the other day and a lady said."Oh, dear, do you always shake like that?" "Yes" I said. "I have Parkinson's" and she ducked her head. I just walked off laughing and thought to myself, "I've never been happier in all my life, to which she probably thought,"yes, and she's crazy too." love Pokie
Saturday, March 27, 2010
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Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings
I had the pleasure of being a part of the St.Louis Undy 5000 Today and thorough that once again got to spend time with someone so special to me and her field and after we went out to eat last night and I returned to the hotel room this series of words just kept bouncing around in my brain until I put it to paper: STACIE AND ME
We travel our miles just friends her and me.
she's off to Michigan and me off to New York you see.
we're looking for answers, her cancer me PD,
So we travel the miles my Stacie and me.
She sets up Walks, I set up Teams but
regardless of the money it comes in in streams.
For people in pain and once left behind,
For knowledge and caring and hope for better times.
See Stacie and me, we never give up,
Her for Colon Cancer and me for PD.
But not just for those two but so many more
who stand in the wings and wait for our score.
There's Ms and ALS and so many more
just waiting for Stacie and I to open the door
So we travel the miles my Stacie and me
Together as friends we always will be...
Always Pokie.
she's off to Michigan and me off to New York you see.
we're looking for answers, her cancer me PD,
So we travel the miles my Stacie and me.
She sets up Walks, I set up Teams but
regardless of the money it comes in in streams.
For people in pain and once left behind,
For knowledge and caring and hope for better times.
See Stacie and me, we never give up,
Her for Colon Cancer and me for PD.
But not just for those two but so many more
who stand in the wings and wait for our score.
There's Ms and ALS and so many more
just waiting for Stacie and I to open the door
So we travel the miles my Stacie and me
Together as friends we always will be...
Always Pokie.
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