Local Woman Joins in on Parkinson's Quilt Project

Look what showed up in my home town paper in the middle of nowhere today...the town was buzzing!
LOCAL WOMAN JOINS IN ON PARKINSON'S QUILT PROJECT

Vandalia resident Charlene Pryor recently used her talents to contribute to the Parkinson's Quilt 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 in 1995 and took up quilting 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 experiences living with Parkinson's.

So when she heard about the Parkinson's quilt Project, which will bring quilts together from all over the world, she was eager to get involved.

She not only sewed a panel for the quilt, she also serves on the project's advisory committee. In this capacity, she performs outreach to other people affected by Parkinson's, letting them know they too can play a part.

Pryor's own quilt panel, entitled "Thanks" is a tribute to the various Parkinson's organizations, including PDF, that 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 efforts, "I am grateful that PDF was able to provide me with an opportunity and that they are bringing together quilters who 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 other means."

Robin Elliott, executive director of the Parkinson Disease Foundation, the organization that is leading the quilt project, said,"The true power of the Parkinson's Quilt Project comes from the 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 Congress in Glasglow, Scotland in September, it will radiate her contributions and those of hundreds of others around the world who, like her, are touched by Parkinson's.

"It will also remind the world that we need increased awareness and funds to find a cure for Parkinson's. We applauded Ms. Pryor's efforts to help make all of this happen." Those interested in learning more or requesting an image of Ms. Pryor's panel can do so by calling PDF at (800) 457-6676, emailing info@pdf.org or visiting http://supportpdf.org/quilt.

About Parkinson's Disease

Parkinson's disease is a progressive neurological disorder that effects nearly1 million people in the US. Although promising research is being conducted, there is currently no cure for Parkinson's
About the Parkinson's Disease Foundation

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 1 million people in the U.S. who live 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 and 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.

The Little Team From Nowhere

http://blogger.com/blog-formatting.g?blogID=7105864728904284820
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

January 1, 2010, we did not exist. Though somewhere in the hallways of Patientslikeme.com, there is always a new idea just waiting to be recognized and tried. First we were a team of four then we were more . This year we have team members and then friends just stopping by to " talk and walk."....Friends we have made over the years on the site and no matter what they do or where they go,, when they enter the Walk area and you see them, all time fades away. Pain and sorrow is exchanged for a hug and the world is OK for another day. I have always commented on the diversity of our group on the site, and yet we all get along. We have farmers, poets and authors, travelers and lawyers, doctors and business men and women BUT we all have Parkinson's or know someone who has Parkinson's and we know that pain like no one else. Our community on and off the internet in something so special and one the World should take notice of, for this, in it's own little way, is just what is needed to keep the World going today. We stick together no matter what. We give what we have and more to stay together. We always think of the other person and we pay forward. In our giving and paying forward, the World notices and they pay forward, hence our Team total this morning $10,961.00. That is in three months. This speaks volumes for my friends and their families and friends. Everyone is in a pinch these days, but they gave and I so appreciate every penny. The reason I support the Parkinson Unity Walk so vigorously is just that. Every penny goes to research, every penny! This morning how many of those pennies have they collected? $over 900,000.00. As I have said before and will keep saying, the unique combination of groups like PUW and Patientslikme.com and Parkinson's Patients is what will find this cure. No fancy, no overhead, just listening and following through. Pulling those brains that can help together with the patient that knows and helping them find the money to find that cure. My belief has been for the last three years that one discovery in one field will help the next, MS, ALS, MSA, PD Epilepsy and more.....they (doctors and big business) just needs to start listening to us.
I am the captain of TEAM PATIENTSLIKEME and a proud captain I am. It has been my pleasure to serve you and now the fun begins. I am about to go into "down mode" as I pack up all the electrical things I need to travel. Tomorrow is my day to fly to NYC.......Let the games Begin. Thank you all for the memories so far and thank you in advance for the memories to come. love always, Pokie

Favorites PUW 2008

http://blogger.com/blog-formatting.g?blogID=7105864728904284820
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

These are some of my many favorite photos from the 2008 Unity Walk. After this I was sure to return every year. The one one just above is from the LeGuardia Marriott. I ask for a view and this is it my first night in NYC. I kept getting up all night looking out the window to watch it change. The second one was taken by my daughter as I left St Louis not knowing what was in the background and that I would come out a shadow and It , as always, would stand out. "Turn to God" and"He doesn't just wish for peace he works for it"
Above that is my first buddies on Patientslikeme.com, Tom, Little Dixie and Tom's wife. What a time we had and afterward New York Pizza.
AND THE TOP....BUT NOT LAST...For as far as I could see in all directions were patients and families, survivors and friends, walkers and riders, smilers and criers, yet we all held hands and hearts and we walked two miles on a beautiful day for a cure for Parkinson's.
Thank you Parkinson's Unity Walk for a life time of experiences in three years...love ya Pokie

From April To April

http://blogger.com/blog-formatting.g?blogID=7105864728904284820
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

Most ordinary people gauge their year in twelve months starting with January and ending with December. No not this silly lady.... My year starts the day after I get home from NYC. Well that is not totally true. Usually I just almost collapse for a week and then revamp and start again. So lets say April 31sth I start planning for the third weekend in April of the next year when I can go back to NYC and a new Unity Walk and a new set of challenges. I really believe it is just those challenges that keep me going. Paying rent for this life I have been given the opportunity to live. I still wander around in wide eyed amazement at the people I meet and the conversations I am able to have. At times I amaze myself with what comes out of my mouth to total strangers and yet they seem to understand.

The funniest part of all this is my children. The first year they were so against me going. They fussed and cried and fussed some more. I went by myself and had, as God wanted, a wonderful time out of harms way. I do realie not everyone can do this....but I do. The second year my oldest daughter went along saying she had a job she needed to check on in the area. She may have had one but her main jo b was checking out my friends and my behavior. Now this year both my daughters are going and my son would have came also but has to work....Why are they coming? Mainly because they are suffering from a huge case of denial as to what all their mother is into. Darn those moms. You give them an inch and they take a yard. Well regardless I am determined to show them a good time in the BIG APPLE and on Saturday I hope my Team has a once in a life time experience that cannot be topped. Who said PD patients could show no emotion and needed to be isolated in a nursing home? I would really like to have a little talk with him.....and also Colon Cancer Alliance and Epilepsy Foundation look out. I'm starting on you next..love Pokie

Just When You Give Up......

http://blogger.com/blog-formatting.g?blogID=7105864728904284820
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

Just when you think there is not another email to be sent, another person to beg, another door to knock on, another person to humble yourself too, another donation comes in. This time from such a sweet guy in New York who I have never met and next week end he will be at the beach when I arrive in NYC but he has sent me his book and I will read it and pass it on to you because that is what God did to me....When it seemed my little team had found the well dry along came Ed and saved my spirits. Thank you so much Ed and I just cannot wait to get my mail.

Next Thursday morning early is when I leave for New York City. Things are starting to creep into my always overloaded bag and lists are stuck to everything. The girls are coming over this weekend to give everything the once over to see if mom can still pull this off. Mom herself is beginning to wonder as the recliner looks better and better every minute. I have heard that Starbucks has backed out this year........this makes me so sad. I was and still will be an early arriver at the Walk and they would give me endless free coffee as I sat and took in Central Park's early morning Glory about 7AM......There is a set of rocks that stick out of the ground close to where we use to meet and I would get my coffee and crawl up there , out of the way, and watch for limos and just imagine who was inside. greet joggers and the weirdest assortment of dogs, and just generally saw why John Lennon loved Central Park so. These are some of the best memories of my life, for sure. I can never explain to anyone my feelings and in some ways I will not even try, but the first year I as so enthused that the second year my oldest daughter went along to check it out and now this year two of my daughters are going.

I may not make the goals I set for myself and my team but it will not be for lack of trying. Each of my team, small and large has brought their own spice to the pot and we will definitely set NYC on fire. I plan to take my laptop along and blog daily so look out for Team Patientslikeme...love Pokie

HATS

http://blogger.com/blog-formatting.g?blogID=7105864728904284820

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

I am a person who travels with many hats. Not physical hats but hats that drive my family crazy. At 63 and because I have trouble walking because of Parkinson's and because I have Arthritis and Epilepsy, they, for some reason think I would be better off staying at home. I really think if that were to happen and I had not my dreams and the internet I would go quite peacefully insane. There are some hats I can not wear anymore and one of them is farmer and I cannot garden which I loved, but as God took these things away he left the good memories and opened doors to other things. Travel and the internet, research and poetry, writing and many,many friends. The hats just keep changing. The Parkinson's Foundation started my list of foundations and then there was the Arthritis Foundation and then the Epilepsy Foundation and Colon Cancer Alliance and then the Christopher Reeves Foundation, all of which I am active in and love with all my heart but one stands strong and wears the biggest red hat with tulips on the brim and that's the Parkinson's Unity Walk. This year is the 16th Annual. I am so ready to head to NYC. All my reservations are made and I am starting on my bags....and then I just sit and wait til that day when I fly.

My Team is Team Patientslike and there is no one prouder of their team than me. I realize, as captain, that is natural, but please, this little team has performed miracles. $6300.00 Dollars and still going and no corporate sponsor to double our total. Somehow I will find a way to thank them for all there time and consideration to the cause. Just in case someone reading this does not know every cent of this money goes to research.....no overhead red tape...every penny! Think about it and donate. Fill up one of your hats and send it our way.....Love ya Pokie
and remember:

Yes You Can

No matter what the task may be,
How hard the course you face;
Believe that you have what it takes
To run life's toughest race.

YES YOU CAN.....

http://blogger.com/blog-formatting.g?blogID=7105864728904284820
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

When I get tired and start to loose my way this little verse starts playing in my head......

No matter what the task may be,

How hard the course you face,

Believe that you have what it takes

To run life's toughest race.

I dream and it seems to happen and I wonder when I developed this ability in life. Did it take this last calamity in my life to bring it out or was it always there? I can remember telling my son this when school became almost too hard to bear. I would always say,"Matt, God would not put you through this unless he was getting you ready for bigger and better things." and as time went on he was there for Matt in so many ways. The last race is never run. The highest hill is never climbed. I sleep for a while and and when I start to wake up ideas are already forming in my head. Is this compulsion or passion? I just took a nap for about an hour in the middle of the day. This is something I do everyday after my noon medication and today I woke up thinking, "I wonder if the Christopher Reeves Foundation knows about the Annual Parkinson's Unity Walk? Shouldn't someone invite them? I guess that someone would be me......and that is the way my mind works. Please do not think me over worked or put on in any way. I truly love what I do in every way. And as I wake up from that nap, I never forget that God gave me time to raise my support group in the years before Parkinson's. He gave me some warning signs in the later years to get ready and I took no heed. But when the time came for this Disease, there was never any questioning his path for me. When the doctor would ask do you have vivid dreams, I would always smile......My dreams are the best and yes, very vivid, but they always lead me to something I never believed I could do, no matter what. God has taught me a vital lesson in my older years...BELIEVE THAT YOU CAN AND YOU CAN.......love Pokie

Imagine the World......

http://blogger.com/blog-formatting.g?blogID=7105864728904284820
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

I decided to dream for just a little while and take you along with me. Three years ago, almost to the day a New York taxi cab driver let me off at Central Park at just after seven in the morning on the big Saturday. The Saturday of my first Unity Walk. I had arrived the day before and the walk did not start for three more hours but I could wait no longer at the hotel. I had to venture out. So from La Guardia Marriott to Central Park I rode with eyes as big as half dollars and when he let me out I had absolutely no idea where I was going except I must be in heaven and then I topped the first hill and was convinced. ...Every old hippies dream John Lennon's memorial. I just could not believe that this was the first thing I saw "Strawberry Fields". My mind would not let me stay long but after four pictures and a prayer I was off just following the flow until I saw the Unity Walk sign. No one was there except Starbucks and coffee was free. Two cups of coffee and a quick tour of the site and I crawled up on the rocks to watch the World. Everyone in the World was there.....exercising, running their dogs, reading their papers, just walking and me up on the rocks like a true tourist taking pictures that no one else would take. I have copied and copied those pictures in the past three years and still smile every time I see them...The energy in New York is just unbelievable, especially to a goat farmer from Illinois.

My mission was to find two people that day Michael J. Fox and Tim Horgan(PLM, adm) Neither dream came true but I sure thought it had a couple of times and May May Ali and I talked and my first meeting with the staff of Patientslikeme.com happened. I met Holly Berry that day and Janet Reno and can not believe heaven could be any better. Our team was four that year but I met Marla and her family for the first time and wow...love them so much. I thought $600.00 was so good the first year and then. Last year Marla was co captain and really captain and we made $14,000.00 (13th)......SO GREAT. This year we are standing at 26 members and we started from scratch January 1st and have collected $5000.00 and have a month to go...maybe we have saved the best to last. All I can tell you is my Team Rocks and our enthusiasum could not be higher.....thanks guys love Pokie

THIS IS MY NEW LOOK

http://blogger.com/blog-formatting.g?blogID=7105864728904284820
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

It's not perfect but neither am I. I have tried several things and through going back and forth all night this is the result. It is now one in the morning and after a nap and getting up and the blog was still full page I have accomplished something...A PLUS though a little plus in life's journeys. Speaking of journeys,I am starting on a huge one and taking a rather large crowd with me. Unlike last year when we all showed up on Saturday and then were gone, this year I have choreographed four days in New York City, all the way down to the rental of a wheelchair for three days. I've checked people on my team for tee shirt sizes and made sure they got the right hotel. Planned a get together for this organization and that. Plotted a supper for PLM members for either Friday or Saturday evening and still hopefully left time for me and New York City to embrace as we did last year. It always seems impossible to me that I can love this city as much as I do.I love the energy and availability. Everything is right at hand. Last year one daughter went with me and this year both daughters are going. I hesitate to say this will be my last trip. At one time I thought it might but things are looking up again and I have so much more I would like to see here. But for now let me tell you about my team Team Patientslikeme at the 16th Annual Parkinson's Unity Walk in Central Park on April 24th at 10:00am. We are now up to 27 members and have collected $4000.00 and have a month to go. This may not seem like much to you but this was started from nothing and grows daily from heaven. The team is so excited they can hardly contain their selves on line. Patientslikeme has furnished us with team tee shirts and we will be strutting our stuff for sure. We are bringing our families and inviting friends and crossing communities because......these cures can not be won by just Parkinson's or just ALS or MS but a combined effort from all of us. I have not only Parkinson's but Epilepsy and Acute Arthritis and have invited all groups plus Francesco Clark, Spokesperson for the Chris Reeves Foundation to come. We need to all hold hands in what ever fashion we may to be united in improving our health and well being in this time of health care strife. Wheel chair, to wheelchair, walker to walker, smile to smile......What a day! If your in New York come and visit. We may be slow and some are bent, We may have tremors and speak quite low. We may be very emotional and hug a lot; but our hearts are huge and our minds are good and our ability to be good company is unsurpassed...love Pokie

HAVE YOU HEARD ABOUT THE UNITY WALK?

http://blogger.com/blog-formatting.g?blogID=7105864728904284820
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings
10,000 to 20,000 people, united for a cause. all wanting to cure this disease I have. You see I have Parkinson's and I have hereditary Parkinson's. I am soon to be 63 and have five living grandchildren and three children. This is my third year at the walk The first year I had no idea what a life changing event it would be for me..As my mind travels back in time I can still remember the thrill of starting  the walk from the band shell and at that time my team numbered four.  We rounded the first curve and there were people ahead of us and people behind. I stopped with my friend and began to pray and hold each other and when we stopped everyone behind us stopped for a moment of prayer. From that moment on I have been a soldier in this fight. Parkinson's does not command all my attention but a search for the cure does  and that is a totally different endeavor. Whether in pain or not I go on and the pain disappears. This disease is the strangest thing I have ever encountered.  It is not all about the physical but much about the mental.  For me it is lost in goals and in those goals the disease always comes in second. My goals change from day to day and vary in degrees of importance to me and the World..Right at this very moment my goal is to make Patientslikeme proud of our team at the 16th Annual Parkinson's Unity Walk and let the World know what encouragement and direction that site has given me in the past four years. There is no price to be put on the friendships I have made through this site. I would have never believed this goat farmer from Illinois could love New York City as much as I do. Who would have believed that four people could have collected $600.00 dollars the first year and then watched that team grow to thirty-seven last year and collect close to $20,000.00. I'd say our prayer on that first corner worked and has continued to  word everyday since. In the past year I have had a seizure and could hardly walk but my goal was "The Walk" and would you believe it.  I'm walking and really feeling great. Our team is small but growing as is our money contributed.  We are up to $2100.00 and we have backing and we will grow.  Last year we had made the "2009 Parkinson Unity Quilt" on the site and carried it proudly to the walk to show the world how a parkinson community can come together as one.  We called it Our Lady and she was displayed for all to see at the Parkinson's Disease Foundation Pavilion.  In the past year she has traveled with members of the site as they passed the story on from town to town. Now it is time for this year. We have so few weeks left to get your attention. April 24th in Central Park, New York City, New York we will once again band together "One on One" for a cause. You can help us achieve my goal, or at least one of them. You can help this years walk be a success. You can contribute to me (Charlene Pryor), or my team (Team Patientslikeme) or you can become a corporate sponsor.  You can also take advantage of your employees matching gift plan and double your donation through your employer's human resources department. The smallest of gifts will be appreciated with all my heart. Anything you do may save my family from watching one more member suffer from this devastating disease... I have always given this disease a name.."Joe Parker" and through that I could square off and tell him he will not defeat me. So many times, in the last four years, I have doubted my ability to come back from the next pitfall but in the back of my head, right where my brain cells are waning, something says, "Hold on just a little longer, there's one more person who needs to hear your story." If that one person makes a difference every altered step, every tear shed in pain was worth it. If you can't contribute, come to the walk in support.  If you can't contribute read about my disease.  If you can contribute do it with a smile and know you have saved a grandmother from realizing her eighteen month old grandson could walk better than her.  He could crawl when she could not and when she could not open a container, he watched and took it from her hands and opened it and gave it back with a smile and hug. Give if you can, if not think about me.......love Pokie

Seventy Nine Days Untill New York City

http://blogger.com/blog-formatting.g?blogID=7105864728904284820
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

Seventy nine more days and I'll be in New York City.  You wouldn't think I would have any fondness at all for downtown Manhattan, but I am in awe.  I am very sure this will be my last trip to the Walk and yet at this time I am not sad.  I have experienced so much and everyday seems to be just that much more. .. all of which is something I never dreamed of before.  Every morning when I turn on the TV the memories come flooding back. I think gosh I've been there and saw that and loved it.  Maybe I should have never been the old lady off the farm who ventured to the big city.  I can only tell you the city and every one I met along the way were fantastic. From the gentlemen who held my hand and started to cry while I told him my story on the plane.  How about the way he disappeared in the airport? And how about the taxie driver setting me out at the monument to John Lennon.  Common to him, left me awestruck at six in the morning and of all the places to sit an old hippy off in Central Park?. How about on the flight in and we are flying up the Hudson River and the captain is telling us the sights to look for?  We round the Statue of Liberty and line up on Broadway and he says, "and there are the Trump Towers and for the Little Lady in Isle 13, Good Luck at the Walk Tomorrow that is Central Park." That little lady was me and the tears sure fell.
I'm sorry but despite my noticeable handicaps at the moment, I am so lucky for all the places I have seen and the people I have met.  Not scheduled appearances.   God made adventures JUST FOR ME.. Why he singled me out to be so blessed, I have no idea but I am sure it brought a smile to his face when I saw Central Park for the first time....Thank you Lord  Love Pokie 

I Cannot Get Them All In The Boat

http://blogger.com/blog-formatting.g?blogID=7105864728904284820
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

Recent;y a  close friend of mine and I were talking and she was telling me of a dream her husband  was having the night before. She woke him up while he was thrashing around yelling "I cannot get them all in the Boat."  I know the feeling well. I brought it on myself.  One day I am working on  quilt squares for PDF and the next day I'm working on contributions for my team Team Patientslikeme for the Unity Walk in New York.  Spice in my team I am trying to form for the Colon Cancer Walk in St Louis in March and "Yes I cannot get them all in the Boat."  But to my amazement, they all seem to be holding their own and growing.  Another of my new friends brought it to my attention that he was not into the fund raising side of Parkinson's.  He was only interested in living his life to the fullest each day for as many good days as he had.  He prayed for a cure and did follow the research but did not actively advocate asking for donations or attending walks.  Walks, to me, go somewhere past fund raising .It's the being together for a day that shores us up for another year knowing full well that that might be our last year.  This might be my last year to get everyone in the boat and if it is at this time next year I will be lost.The need to be a part of a community and participate is something Parkinson's tries so hard to take away from us and attending a walks replaces. A heart to heart talk with Janet Reno while holding her hand, a hug from May May Ali, searching the crowd for Michael, these are the things that in the years of Walks 17, 18, and 19 some us will be at home quietly smiling and clutching our tee shirts. At this point in time the money will make no difference only the memory. But to someone we saved the money made a big difference.  Please give just a little and :"climb in the boat."   love ya Pokie

$154,453.00

http://blogger.com/blog-formatting.g?blogID=7105864728904284820
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

I checked in this morning, as I always do, and ..... look at what we have received in donations for Parkinson's Research this Year and it's January!  $154,453.00. You go PARKINSON'S UNITY WALK! One Hundred Percent of all donations go to research....Please, so much has been accomplished in the past year through your help and donations now is crucial to a cure.

This week will be be very important to our team TEAM PATIENTSLIKEME . Emails are ready to go out and letters are being written to ask for team members. I even had interest in my high school alumni newsletter yesterday and hope to will be running a series in our home town paper. PBS TV had a special on the human spark and how it made the difference in our lives.Why do some people faced with adversity go so far and those faced with no adversity do so less? As I watched this I just knew Parkinson's could be one of those sparks for some. For me it is a passion to use all the energy I have to reach that next person that can help Parkinson's. As patients we need personal contact....something that is immediately shut off from us if we have no caregiver.  Transportation stops and home bound begins....NO, NO, NO. We must band together as best we can, and attend these walks.  We must be seen to the World.  This is Parkinson's in All Ages, be it young or old. The whole concept of Parkinson's is assumed that we don't want to go, that we don't want to make new friends.The best way to bring a smile to a PD patients face is a smile and a hug, a walk in the sunshine...a good seat to watch life go by...well here I have wandered off again .  Check this web site out and make a donation out to our team.  Even $5 is accepted http://www.unitywalk.org  love pokie

Old Hippies Walking

http://blogger.com/blog-formatting.g?blogID=7105864728904284820
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

When you travel to the Parkinson's Unity Walk in New York City this is one of the things you will find to mark your day with pride. At the famous Tavern on the Green stands a huge topiary of an elephant surely to bring good luck to all who pass him by.  It also means other things. The first year I walked, I turned to Tom and said, "I made it" and he said, "Nope, Poke you have another mile to go." I grabbed his wheelchair and we were off as fast as I could go before I ran out of steam.  Last year it was over ninety and people were dropping from heat exhaustion. When I saw them at one mile I knew I was done. This year I will be the wise walker and take it slow and easy .Both my daughters are going with me and I would like to make the finish line, again. My tickets are bought, as I said and I am once again making my plans for glorious New York City. Team Patientslikeme .is gaining members everyday as is our donations.  You would never know from the chatter between us on the site that we are considered chronically ill.  These are the things that keep us going. We have to have interaction. For so many years Parkinson's Disease was considered a death sentence. Once diagnosed the patient was shipped off to the nursing home and never heard from again. Did you know we can smile and laugh, sing and sometimes dance.  We can sew and do crafts and we can tell stories in many forms.  We are your history and ancestry.  If we are not cherished and allowed to flousih in our older age, it is the nation that looses.  Our viewpoint as "Old Hippies" was responsible for the end of the Vietnam War.  Could those same hippies have enough to say today to save the World?  My brain is still good but my legs are failing, yet once a year, in April I travel to New York City with all I can muster up and I celebrate Parkinson's and it's Patients.  I clebrate our gains for the year.  I celebrate the friends I have made and the new bonds I have made with my family as they struggle to understand this disease. My worry is the teen generation.  Are they listening?  Do they care that this disease and many others are coming at them with lightning speed?  Everyday someone younger is diagnosed with Parkinson's, or MS or ALS and there is NO CURE....Could grandma have given them some insight as to what was coming and how to handle it,.... had they only listened?.Would they be able to realize that grandmas faith was a detrmining factor in her survivial and theirs?  Would I have listened at their age? I think I did and I think I made a difference at Woodstock and FairAid.  I believed in the Kennedy's and Martin Luther King.  I had a dream and a passion..I had a good life and raised good kids and now have Parkinson's Disease and with that same passion I fight for a cure and pray for the World  love Pokie

New Projects For a New Year.....

http://blogger.com/blog-formatting.g?blogID=7105864728904284820
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

 My plate is pretty full at the moment as I have found is normal for a "Parkie" this time of year.  Most seem to go into hibernation when it gets cold but if you are an advocate for Parkinson's, January 1, you start preparing for April and Parkinson's Awareness Month.  My mail box is crammed full each day with news letters and new ways to help find a cure for this dreadful disease. Since last year I have added several more causes.  Epilepsy is one and Colon Cancer is another.  Not to dwell in the past, but, last year I went full out and when April got here and I was in New York City, I was exhausted and could barely walk.  I have learned my lesson and hope everyone keeps reminding me that there are only so many days in a month and hours in a day and rest is needed to survive and enjoy.....Yes, Lord I am listening.

This year, of course is our Team Patientslikeme at the 16th Annual Parkinson's Unity Walk in NYC.  This will be our third year and hope to have 50 to a 100 walkers.  Last year we had around 35 and the year before we had four.http://patientslikeme.com.  We are hoping to have a fantastic wekend in NYC from all over the U.S. and for donations ...we raised almost $20,000.00 last year  for research and hope to do that again or double it....Mark this on your calendar if you are going to be in NYC April 24, 2010..16th Annual Parkinson's Unity Walk  http://UnityWalk.org  100% of all donations go to research and we have received $125,873.00 already .  Thank you, thank you, thank you..

Next on my agenda is the Parkinson's Quilt Project,  http://support.pdf.org/quilt. This is close to my heart also but in another way.  This is tangible to the patient.  His pride is touched as a panel is made to venture to Scotland in October 2010 for the Global Parkinson's Conference.  Individuals, groups, survivors and loved ones are banding together to make quilt panels from anything permanent to be on display there much as the AIDS quilts were displayed in the seventies. Contributions can be made through PDF an deach panel costs $25 to register...My personal page is listed under Charlene Pryor and I will be previewing pictures of the panels as they come through.  Wish us luck, this is a huge project.

Next is my concern for the colon cancer community.  We are looseing patients to this disease in alarming rates and the patients like Parkinson's get younger and younger.  This coming year there will be 5KWalks all across the U.S. for reearch and awareness and I am so happy to announce  these walks will be directed by a dear friend of mine for the Colon Society. In St.Louis Missouri, March 27, 2010, is one of these get togethers....If you are down in this area please come and spend the day.  We are expecting big things in this area.  St.Louis always comes through for Cancer.

Now las but not least I would like to thank all who have followed and nurtured me in the past year.  Thanks to the countless numbeer of friends and aquaintances I have made.  Thanks for the knowledge and direction you have sent my way and the donations to research you have made in my honor.  I am so humbled that God has presented me with this challenge and showed me how to handle it....Gandi once wrote: "It matters not how strait the gate, How charged with punishment the scroll.  I am the master of my fate:   I am the aptain of my soul."  God gives us the gift of life and what we do with it is our doing.....Make Him proud...love Pokie

Pokie and Pokie Jr.      Blessings are everywhere!!!