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.

Come Walk With Me......

COME WALK WITH ME

Come Walk With me along life's path
And I will walk with you.
We will share our joys and sorrows
the way good friends shall do.

I'll take your hand and you'll take mine
We'll walk together on life's path.
There is no gift more precious than
A true and life long friend.

And when the sun is setting
and we pause to watch the sky,
I thank you Lord for the pleasure
that my friend has brought me by......

Friends wander in and out of our lives these days as the whole world seems to be moving at way to fast a speed and yet out of nowhere came a special friend to lighten my mental load just by holding my hand. My guardian angel was really looking out for me on this day when out of nowhere appeared someone I had not seen for decades and the amazing thing is the beauty in the sincerity of the thoughts and words that flow from this chance meeting. Just a small writing in thank you for what you have given me back in my life...My Friend love Pokie

Fairies at Play

REALITY

Reality came to play in my yard today.
I watched her with wonder from my room with a bay.
She danced and she sang and she chased butterflies.
I sat and I stared and I wanted to cry.

How dare her come to my yard and bring such glee.
Where roses grow in colors and bunches of three.

She ran in between and merrily she flew.
My life's been trespassed......
For Free.

Odd my mind would go here yesterday, when in the Midwest the temperatures soared past a hundred and rain came by buckets, but, I guess, it was the sight of butterflies dancing around every available flower in the yard that sent my mind to wander this path. So many uninvited things have been entering my life since I started to battle Parkinson's. Usually I don't dwell on losses and try to go on, but I see now, because I thought I had dotted all the "i's" and crossed all the "t's" as I went along and never was one to look back that I was eventually have to face facts. Then along comes something or someone who you cannot ignore and they are not considered a trespass but as they wonder into your life you are forced to acknowledge the times you have had taken away leaving so little to respond to life with. You look back and so want to be the person of before, agile and carefree but know that your bones will never leave you painless for a romp in your past. One thing I am so fortunate to have realized today,is that while the taking away was in process, some things were left behind. My heart and my mind hid quietly away as my mobility was stolen and gone. Once my body could no longer move, my figure soon drifted to places that were impossible to enter and at this point my mind sought solace and declared,"Enough." I have since realized, my heart and my mind took over for what was taken away and that was fine until yesterday and I dreamed of years gone past and freedom of flight. May it be possible, we will only see, if my mind might be stronger than all of me and gain me this one last chance at life that had slipped away only to be saved for another day. love always Pokie

Hard To Dance Without Music

As most who follow me know by now, I am an avid supporter of the website Patientslikeme.com and have been for years. Our forum posters range in age from early twenties to late seventies. We band together as a very tight knit community who care deeply and sincerely for each others welfare BUT as we meet virtually every morning for coffee on the Internet, it becomes ever more evident that this country, MY UNITED STATES OF AMERICA is letting it's seniors and particularly it's disabled seniors slip through the cracks. What is America thinking? These men and women are not only our past but in their genes and minds hold all the answers to the future. All of a sudden no one wants to see or hear of the plight of the disabled senior. I have copied some comments and stories from the sight and with their permission I am passing their stories on to you. read with an open mind and heart and tell me if this is fare in any way.

"I don't post in the 'negative' range, but i think I need to for now. If you ever read my comments in the past year you know I am the type of person who sees the glass not 1/2 empty, but 1/2 full and that means there is room for tequila, ice and a party. However, somewhere, someone turned off the music. Some know that my wife is also ill (something worse than PD) which is easy to deal with in comparison. Last year, the PD got to a point where I could no longer work at a job which I've loved for 25 years and that, too, I have adjusted to. I've come to terms with the facts that some days I can't drive, type, work a button, tie a shoe, or go swimming by my self...such is life.This is where the problem lies; since I was 16 years old I have worked every day that I could put my feet on the ground and felt that was the right thing to do. During that time I have paid my fair portion into a system which was to be a safety net for those in need, BUT...with cobra insurance no longer available because the premiums went to $1400.00 per month, I find my self uninsured. no one will sell me a policy and every state mandated continuation policy seems to require that I run out of Cobra first. The DCF states my unemployment income is too much to get help, but they did offer my wife (who has medicare and the same resources) medical assistance. I am trying to get SSDI and even with all the doctors agreeing that I shouldn't be working, "The process can still take a couple of years" I Have called the SS Office, my lawyer, my congressman, senator, paperboy......The only one that has called me back is my paperboy because I owe him money.

I have traveled this country from end to end. It is an AWE inspiring gift from GOD and I feel grateful that I have been allowed to see so many places and people in the country I was born in. I LOVE MY COUNTRY very much, but I DESPISE the leaders of this country for the continuous joke they perpetuate on her people wrapped in the lie of health and social compassion.

Someone turn that damn music back up, will ya?!!!!!

This is the third time I have encountered this type of situation in some form this week. From phone calls to the Internet to people at the grocery store. This is dead serious and some one somewhere better be listening or it will be the sixties all over again..... love Pokie

TIME IS NOT NEUTRAL FOR US ..... World Parkinson's Congress video entry

I want to hurry up and get this on line. You may have noticed last week on my newsfeed on Facebook, a very close friend of mine gave me a sneak peek at what him and ten other Parkinson's patients have been working on for the Global Congress. Please view this and listen. The information in here is huge. Send me a reply or check in at http://parkinsonscreativecollective.org More to come soon and thanks Bob and Peggy..love and good luck Pokie

Jamie Heywood: The big idea my brother inspired

It's three am and here I am with part of my family. October 7th of last year I had just finished my live setup for the 2.o Med conference in California when I went down with a grand mal seizure and once again I was in the Epilepsy World. After 13 years of dormancy, it was acting up again. Scary , huh? Yes, but what was different this time...The gentlemen setting on this stage, some of the men from PatientsLikeMe.com., were and are my backup family. After four years on their site and so few days without me logging in multiple times all day, they know me better than I know myself. I have often joked that when it is my time to pass on, Ben will know months in advance. The most important part of this family, is their heart...always there, always caring. I trust them above all else. Some day I will have to sit down and write about my experiences on PLM. There probably is enough for a very funny book. I have clowned around at night when no one else was posting or even up, just me and Mr.T, the moderator. When I have had questions about outside Parkinson's advocacy, I can and could always drop a letter to Jamie and the response would be, "What can I do to help. Pokie" After the seizure in October, I returned to the site from the hospital a week later to find an invitation to join a beta testing on their new Epilepsy site. I've Beta'ed the Moods Community which they launched on my Birthday and waited for me to sign on and surprised me with a picture of a rocket blasting off and a big on line celebration. When it came time for the 2010 Parkinson's Unity Walk, in NYC they sponsored our team, through me, with a huge donation. When I started with them they were just starting so we have grown and learned together and as I was talking to someone today and they said they could see the difference WE are making for chronic illness patients. In the past four years the shift has definitely been from doctor ego to patient needs. That "one on one" interaction is often much more important than medication of any kind. And I don't mean to put doctors down. I have had one of the best Neurologist ever in my estimation and hope to return to him as soon as I can travel to St. Louis for visits. We were, above all else, friends and he would always ask for my input and never over medicate. I neither want or need to be a zombie because of my medication. I have "X" amount of time left in my life and have no intention of spending it sleeping twenty four hours a day. Well, you get the idea, I hope. I am so proud to say I am associated with Patientslikeme.com and the crew there. I thank them for making everyday a new experience for me and showing the World just how important a social health network is towards finding a cure and furnishing a better quality of life as w suffer through......thanks again, Love always Pokie

save a Life

R.E Children's Project

As a grandmother of five this project touches my heart more than you will ever know. Thirteen years ago I lost, what appeared to be, a perfectly healthy grandson to Sids. He was a robust little blond headed boy with these huge blue eyes. The day before I took him to the doctor for his check up ....we laugh and the doctor kidded me about how healthy he was...That night his dad took him back to his home in Missouri and by noon the next day he was gone. He went to sleep and never woke up again. My son was nineteen at the time, and this was the love of his life....He never went anywhere that his son was not there with him. But we lost him to, what was that time a mystery disease...My son said we lost him to the devil.

What does this have to do with Seth and Grace? I read Seth's blog this morning and then I read it many more times and then I dropped him a line and told him how I would like to write, as best I could. about Grace and her disease and Seth and his battle to save her. You see Grace has Rasmussen's encephalitis. Less than 200.000 people world wide have this disease. "It 's a rare neurological condition that impacts children primarily under the age of 13 rendering them paralyzed on one side and experiencing incurable epilepsy. In many cases 1/2 the brain is the only solution to the uncontrollable seizures" According to The National Organization for Rare Disorders. (NORD) http://www.rarediseases.org/ only 200 out of 7000 rare diseases have drugs approved by the FDA for treatment. Well what do the other 6800 do? I am afraid to ask. Yes, our federal government has provided us with the Orphan Drug Act in 1983 but the success rate is doubtful and more needs to be done.

I urge you to check this disease and Seth and Graces' journey for help and a cure all documented beautifully by her dad on his blog. Check him out in Facebook and No, you have not heard the last from me on this. I just have to do some additional research to send it your way....My prayers are with you two, keep up the good work. Those smiles are worth a million. Love Pokie

R.E Childens

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

Feeling Good.....

I feel a little leery about saying just how good I feel today and have felt for several days. Why? Because all around me people on PLM and around me in general seem to be so sad and lonely. I feel guilty. Usually when this happens and you run a string of days in really good humor, look out because the bottom will drop out of everything. My dad being the eternal "Optimist (??)" that he was would always say, "Look out for that light at the end of the tunnel. It might not be daylight it might be another train." Slowly but surely things are coming together here and I look forward to scrap booking next week...all the things I have collected on trips in the past three years and pictures of and from http://Patientslikeme.com . I have a couple of sewing projects I would like to do while I am in an up swing. A friend of mine sent me this prayer yesterday that I would like to pass it on to you:

THE KNOTS PRAYER

Dear God:

Please untie the knots

that are in my mind,

my heart and my life.

Remove the have nots,

the canots and the do nots,

that I have in my mind.

Erase the will nots,

may nots,

might nots that may find

a home in my heart.

Release me from the could nots,

would nots and

should nots that obstruct my life.

And most of all,

Dear God,

I ask that you remove from my mind,

my heart and my life all of the "am nots"

that I have allowed to hold me back,

especially the thought

that I am not good enough

Amen.

Author Known to God

Well it's about time for coffee and medication for a new day.....I wish you peace and contentment today and as few "NOTS" as you can handle love always Pokie

Looking Up Instead of Down

No matter what you say to some people, they seem to believe they have to shy and moan and groan and pick the worst thing possible to think of . Then they grab their cup of coffee and no breakfast and start the day with that thought. They don't stand a chance of making it to noon without wanting to take someones head off or committing Harry Carrie. You know the saying, "be careful what you wish for, because you just might get it?" Well my wishes have a habit of coming true...seriously!!!! I sure am glad I think so positive all the time. Just in the past weeks negative thoughts would have robed me of millions of good times that laid the foundation for more good times. Happiness and contentment is there if you keep your chin UP not DOWN. Researchers have to think positive or a cure would not be in the offing. I also have discovered that "old" only plays a part in the scheme of things if you let it. Sure I would love to be twenty and pain free and offered the chance to start an adventure too good to be true.....yes, I know they usually are but what if it's the real deal and you missed it because YOU THOUGHT you were to old, too sick, too down instead of too up. I don't want to nag or brag but some times you just have to go for the gusto and forget all else. As long as God is your walking partner, the path will lead to somewhere and it beats the heck out of sitting at home moaning and groaning...love ya Pokie

"NOT ON MY WATCH'

In a short amount of time I am facing right hip surgery and the surgery does not worry me as much as the chance of catching an HAI (Hospital Associated Infection) while having surgery or afterwards.....It's not an unusual worry, I'm sorry to say, according to World Health Organizations 1.4 million people worldwide suffer from infections acquired in hospitals. THAT'S MILLION. The deaths associated to this is believed to have been 99,000 in 2002 and in under developed countries the numbers are two - twenty time larger. All of this results in an additional burden on health care facilities of $6.7 billion or higher. To check these fugues and learn more about them go to http://www.haiwatch.com
We very much need to realize one thing when entering a hospital. Never be left alone. Have a member of your family or friend keep a vigil on you constantly. All Doctors and Nurses must wash their hands before attending you same as housekeeping. Sandi wipes should be used constantly everyday to keep your area as germ free as possible.A little protection will carry you a long way and believe me protection is what you need. Strep, Staff, flu, parvovirus, TB sars, mrsa just to name a few you might have heard from and believe me there are many more lurking there that you have not heard of and what is even more frightening is some have no cure and are instantly deadly.
Kimberly-Clark Health care has launched an aggressive program to teach ALL concerned the dangers and better preventative procedure's of HAI's. The program is called "Not On My Watch" There are several upcoming events you might want to follow on HAI's in the upcoming months:
18th Annual Health Forum/ American Hospital Assn.
San Diego, Ca.
July 22-July 24 2010

BIT 1st World Congress of Virus and Infections
Busan, South Korea
July 31 - Aug 3 2010
Never forget or let someone else convince you that you do not deserve the best. And don't ashamed to ask them to wash their hands in front of you, regardless.You paying good money for the chance to go home healthy love ya Pokie

Celerating the Fourth of July

My family and I pulled all the plugs out, this year to experience what living in rural America is, especially on the 4th of July. Living in the United States in this day and time is not the easiest , with economy and unemployment and general mistrust of all government officials. In Illinois this has been compounded by continual downpours making the fields impossible to plant or even work up. Some corn did make it to tassle stage thus the seed for the 4th was laid, corn on the cob. Several weeks ago my oldest daughter started stockpiling fireworks in the trunk of her car until last night when she and a few assistants pulled off a two hours display that matched any in the nearby towns and beckoned neighbors from all around. Our pond had a new batch of ducks sailing proudly back and forth and the grand kids had received and new load of sand which we left piled so THEY could spread it. Food and drink of all kind graced two picnic tables. Our pond is stocked with hybrid red ear perch which are just good eating size so dads and kids fished and my son-in-law grilled them with the before mentioned corn on the cob. The kids swam and moms floated on rafts while our three dogs ran back and forth after them. It really was a true Norman Rockwell picture and how lucky we were. You see we live in America a one of a kind land of opportunity. Even when the economy is bad and unemployment reaching double digits, it is still better than most and for me and my family it is heaven. Hopefully on the Forth in later years, the party will grow to fifty as the kids marry and their families expand. Twenty was nice but the more the merrier is my thought. With this story, I have tried to give you a small glimpse into my life in the middle of the United States on the Fourth. I hope your hoiday was as nice.....if not start planning now for next year and don't let it slip by.....This is OUR AMERICA...BE PROUD and SHOW IT......Pokie

It's A Real Special Day...

Were you aware of the fact that today is "Holy Crap,Your Hot Day". Your probably not and really don't care but think about it if your over fifty or sixty. How often does some one look at you, or treat you like your hot? If your me, and most women my age, things like that don't happen very often. This has nothing, evidently, to do with Parkinson's or Epilepsy or maybe even Arthritis because I have all and spent the weekend feeling "Not Hot" BUT "Maybe Special" for the whole weekend. I came home just absolutely on the top of the world due to two gentlemen at my 45th class reunion. Kent and Jimmy brought memories back to me that I had stored away to review in heaven. Their smiles and hugs were better than all the medication that could have ever come my way. Some might ask why I waited so long to go back. fear I am sure but I am glad I waited. My kids are grown. My grand kids are older. My life is settled ,if not in a rut..............Thoughts of times in the sixties and seventies seem to no longer dance in my head but haunt me. The life I could follow then I can no longer follow.This is not because I am older and suppose to have grown up but because the World does not believe in that life style anymore. If you want to be safe, all the fun seems to have to go down the drain. This has nothing to do with feeling "Hot"except when you feel that high you have to glow and you DO feel better and nothing is more important than that moment...Nothing before or and surely nothing that might come later, because later is no longer counted in large increments like ever it's more like tomorrow and tomorrow is ok. During this span of living life to it's fullest, Bette Milder made a movie called the "Rose" and the words from the poem it was based on changed my life Here's a little of it.

"It's the heart afraid of breaking that never learns to dance. It's the dream afraid of waking, that never seeks a chance. It's the one that won't be taken who cannot seem to give. And the soul afraid of dyin' who never see,s to live...." Loving you always Pokie