Wednesday, March 31, 2010

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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 Pokie

Sunday, March 28, 2010

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There is occasion when even I must stop and say some things that have not been said to some one who is always the strong one, and sadly has always been. At the age of eleven, I remember her listening to a conversation I was having with my doctors nurse, "When she said almost to her self, oh no not again, please!". At age nine she had been thrust into having to take care of children while still a child herself, when her brother was born and it was only mom to take after him when mom went to didn't do such things and as the plan worked out that little brother was sick for most of his childhood. Then there was divorce and that left my daughter and I , mothers to small kids five and three Even at that time she worked harder than most , stacking wood and cleaning house plus keeping her studies at A and being in sports. All of these things and many more were a part of her world and what was her mom doing but bringing her unwanted babysitting jobs that didn't go away. She was a second mom and soon learned how to make and carry out the large decisions as an at home project manager.

Now She is grown and her family of two are Brendan, age nine and Haley age sixteen. She is a very good mother...much better than me. Sometimes we neglect to tell our daughters and sons this . Just when her life could be no fuller with family in full swing, her job becomes mobile and traveling is a big part of what she does......She does seating for stadiums, the Pittsburgh Penguins, the Orlando Magic, The Kansas City Sprint Dome, and many more. In this field she is one of a kind just as she was in early sister and brother motherhood and later actual motherhood and being a balancing wife.

All this would be enough, but in her prime she is presented with a new problem....a social mom, one who quite often can not drive to her destination. There's Walks and conferences and doctor appointments not to mention all the little things missed like a loaf of bread or a bag of dog food. She delivers these promptly and never says a word. She always reminds me that she's not a hugger and emotion is not her thing.

Well Heidi , My rock of Gibraltar, what can I say. I have loved you since long before you were born, when in Germany your life began.....And though those hugs are few and far between.... when they do come how ever so special they are and how honored I am to enter a room in this our small town and everyone knows you and truly honors and respects you. My alpha female, in this household you'll always be and just know that your mother will love you and thanks you from the bottom of my heart.......Maybe these travel times will allow us to see the times from before when we didn't rush so much.....Step up to the front my dear and take the applause. Your doing a fine job much better than me and when ever you might need me I hope always to be here beside you in every good way , because as I realized this morning how blessed I am that you were born a PROJECT MANAGER AND I'M IN YOUR CREW..... love ya Pokie Mom. Nee, Nay and such

Saturday, March 27, 2010
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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.

Wednesday, March 24, 2010

Imagine the World......
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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 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 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

Monday, March 22, 2010

Help Purple Day
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Conceived by three smart cupcakes at the Anita Kaufman Foundation (AKF), Three Great Purple Cupcake Project is a sweet epilepsy awareness initiative supporting Purple the Day (March 26th) . During the week of March 26th AKF is inviting bakeries and cupcakeries across the United States to feature PURPLE CUPCAKES in an effort to promote awareness of a condition that effects over 3 million Americans.

Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people from around the globe wear purple to promote awareness about epilepsy. Purple Day was founded in 2008, by nine year old Cassidy Megan of Nova Scotia, Canada. Motivated by her own struggles with epilepsy, Cassidy started a day in an effort to get people talking about the disorder and reassure those with seizures that they are not alone. she named the day Purple Day after the international recognized color for epilepsy, lavender.

How can I help? Giving back has never been so simple.......for the week of March 26th NOW...go to your bakery and have them feature some purple cucpakes................these are the links for information on donations and display and

AFF also invites schools and businesses to host purple bake sales. Sell sweets and raise funds for Purple Day.

To join the Great Purple Cupcake Project, contact:
Michelle Caplan, Partnership Executive
The AnitaKaufmann Foundation - US Sponsor of Purple Day

Purple cupcakes + Epilepsy awareness + Helping a deserving cause = SWEET!

Sunday, March 21, 2010

Purple Day Photo Gallery - Purple Day Everywhere!/Awesome T-Shirt design developed by Chris at Epilepsy Support Centre in London, Ontario, Canada

Purple Day Photo Gallery - Purple Day Everywhere!/Awesome T-Shirt design developed by Chris at Epilepsy Support Centre in London, Ontario, Canada
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Purple Day Photo Gallery - Home

Purple Day Photo Gallery - Home
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

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 Pokie

Saturday, March 20, 2010

Saturday Mornings
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Is Saturday the lost Day? The Day you waited all week for and then Saturday evening realize you had just spent the day rushing around in a different way and it was gone for another week. Do you sit at the office on Wednesday and pray that God helps you make it to Saturday morning so you can sleep in, watch tv, or read a good book. Did you ever think about taking a walk or getting in the car and driving out to the park and just sitting and thinking? As I typed this I realized there are those in the inner city who cannot do this safely. These neighbors are always under lock and key of some sort or another. Sooner or later the spirit must fly. You must go to the top of the mountain and breath deeply. Go to the window and let the sunshine in... feel the wind on your face and feel life as it is. The life you have may not be perfect but it is there and within it's confines it has a lot to offer. We are coming to Spring in my part of the country and yet some of my friends are still getting snow everyday. What a blessing to open my window last night, just a little, and hear the frogs on the pond. If the time comes that I can not go to that pond, they will come to me in full voice. God allows me to dream of summer days when I walked the farm and tended my animals in peace and contentment. My garden was perfect and my yard was a park and I worked from dawn to dust and then some, but I never enjoyed the smells and the sounds of farming as much as I have when God allows me to dream of days gone by. My thought is on this lost day..... save it. See something you haven't taken time to notice. Hug someone you thought you might just put off till tomorrow. Open that window just a little while and take a deep breath and save it.......God's Day is coming tomorrow and he knows how to spend his Peace love Pokie

Friday, March 19, 2010

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This morning I received an email from a very dear friend who has very early Alzheimer's Disease and has such a great attitude. I had my morning coffee and read this and thought,. "How true and funny this is of so many of us and not necessarily old and golden citizens of this fine land. We rush until our brain really does not know which way to go...... open or close:

I'm writing to say I'm living'
That I'm not among the dead,
Though I'm getting more forgetful
And mixed up in the head.
I got use to my arthritis,
To my dentures I'm resigned.
I can manage my bifocals
But gosh, I miss my mind!
For sometimes I can't remember
When I stand at the foot of the stairs
If I must go up for something
Or have I just come down from there?
And before the fridge so often,
My poor mind is filled with doubt.
Have I just put the food away
Or have I come to take some out?
So if it's my turn to write you
There's no need for getting sore;
I may think I have written
And I don't want to be a bore.
Just remember that I love you
And wish that you were near.
Now it's nearly time
So I must say goodbye, my dear.
Here I stand beside my mailbox
With a face so very red!
Instead of mailing you my letter
I have opened it instead!

I promptly called her up and we had a great time laughing at just how we had become and silently in the back of our minds prayed for the calming of today's generation of speeding ya Pokie

Tuesday, March 16, 2010 | Ending dolphin slaughter in Taiji | Ending dolphin slaughter in Taiji
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Sunday, March 14, 2010

There are no Excuses
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Today is my 63rd birthday and as my days go a day filled with new experiences and wandering from place to place.  I have no time for depression because there is a never ending supply of uplifting things being supplied to my brain. Early this moring the Birthday wishes started coming in on Facebook and all of a sudden a message pops up on messenger from Concepcion, Chili.  That's right from Patty, who I have tried desperately to stay in touch with through the quakes. She has Parkinson's and is in a support group called Grupha Concepcion. As we were talking on chat she mentioned she had Skype as do I. Though I have never used it,. off I went to learn rapidly and for the first time we viewed each other face to face.  As we stumbled through our differences in language, we laughed and cried at the closeness we had achieved.  Her world of terror and pain was helped by my world of affluence.Patty and I will be friends for ever because God said so and made it possible.  It is a wonderful feeling for sure.  I am putting a package together for her of dried food and necessities and I can not tell you what it means to me to know she is safe. I hope my appearance to be in better shape the next meeting since I had just gotten out of the shower and my hair was totally wet and hanging in curls all around my round, no makeup face,

There are no excuses as Wayne Dyer says for not living your life to the fullest and anything less is an insult to God.  I had never really thought of it that way and sometimes slip into feeling sorry for myself just because I am.......sick, poor, hurt, tired, uneducated, and so on......  NO MORE ..... To live with a passion is ok for anyone, no matter if they be suffering from a disease or just suffering from life.

My 63 rd birthday has been fantastic as was my 62nd when we took on The Hill in Washington, D.C. to lobby for the PAN Forum.  I was surprised the night before with a party and the events of today have struck my heart and will stick in my mind  for ever. All participants in my birthday...Thank You......all people with a birthday today....Happy Pokie

Thursday, March 11, 2010

Recognized as a Parkinson's Community Leader
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I am so humbled to say that today I received these kind words from some people doing some very fine work in research for not only Parkinson's patients but all of us in this boat of Nuerological Disorders. The email read as follows:
"You have been identified as a leader in this Parkinson's community.  By sharing your personal, first hand experiences with this disorder on your blog you have helped others.  Access DNA's mission is to help increase the awareness of both  rare and common genetic disorders by creating accessible and reliable information on genetic conditions.  We respect your efforts and are privileged to distinguish your blog with  the following award."
I can only say how proud I am of this recognition and hope that our joint efforts can help find a cure to some of this dreadful diseases....thanks Pokie

Monday, March 8, 2010

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 Pokie

Today With PokieToo and Parkinson's and Acute RA Disease