Thursday, December 24, 2009

Merry Christmas to Me

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I very seldom say what I am into behind the scenes, but today I cannot help but get on my soapbox and just yell at the top of my lungs....WOW  MERRY CHRISTMAS TO ME.......Six am. on Christmas Eve and I open my computer to get the current news and find out I am listed in the new Proud Hands Book by Teva....This is the very first book I collected at my first Unity Walk in 2008.  Holly Berry signed my first book and now I will be in the next one. I am literally brought to my knees by this.  I am an ex goat farmer from the Midwest who never wrote anything before 2008.  I have spent my life raising a family of three as a single mother.  Those three produced six grandchildren which turned out to be the joy of my life. Along came Parkinson's in 2005. shortly after I had retired. to take care of my mom after my dad passed away. For some reason I never fell into depression, as most do. I can only attribute this to the fact that almost immediately God put me in touch with http://www.Patientslikeme.com.  Such a small little site for Parkinson's patients at the time and now look at it.  They nurtured me along, a small step at a time.  The amazement is, I never touched a computer before finding PLM.  As a matter of fact I was looking for my email when I found Patientslikeme.com and some how (God) got in there and guided me along.  I didn't  even know what a username was.  I can only say this  to all there and especially Jamie Heywood, one of the owners, for putting up wlth me in the past years and providing me a home away from home. Well now on to the next surprise, as if this was not enough.

I had been ask to compete for HealthBlogger of the Year on http://www.Wellsphere.com some time ago and this morning I found out I came in thirty fourth of the top one hundred this morning. I can only say thank you so much for all that read my blogs and voted for me.  I can only say this and stop to cry.  Thank you friends.  Thank you family.  Thank you Parkinson's and most of all THANK YOU JESUS. on this the eve of your birthday, for bringing your celebration to my house in such a way.  I am forever changed   Merry Christmas and Happy Birthday   Pokie

Thursday, December 17, 2009

Bethlehem town

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I have a favorite poet, as many will know who really read my writing.  Helen Lowrie Marshall would be one hundred or more were she alive now and she was home schooled on the plains yet grew up to write some of the most touching poetry I have ever read.  Maybe I relate so closely because of her farmer roots but I have always thought we were drawn together in some way.  I search the internet for little treasures of her writing and often order books of hers that were exchanged among friends in the sixties.  They often have writings in them that give me insite into friendships that have long since been forgotten or maybe never known.  Memories of two people sharing caring thoughts for each other.  The little book I received today was called "Aim For A Star" and all throughout it were underlineings and notes.  I have read over and over this today and have come to the conclusion that these two friends knew the true meaning of Christmas and I will  try to pass it on to you and rekindle their love......
It starts With Ellen signing the cover to Sharon:  Sharon, it isn't far to Bethlehem Town...it's any place that Christ comes down and finds in someone's shining face a welcome, and abiding place.....A very Merry Christmas   1966
These are the things she underlined in the book:
Failure lies only in not having tried, and don't be afraid to dream.  Your feet on the ground, and our eyes on the sky.
A world with a challenge for each of us to give it our very best.
It is enough that dawn shall follow night.
No miracle..just peace replacing doubt.
And faith is born within the heart from yearning...yes and learning.
So much of life..the best of life are these, the gifts of boundless depth beyond all eathly measure.
There's proof enough.  I know.  I've seen a rose.
Others helped when I was weak, took my hand, helped me stand, Take my hand.
Yes some things must be shared to fully please and our own faith is not the least of these.
But he always came out winner with a twinkle in his eye.
No man can ever stand alone, nor need he so to stand, for love is always very near, and God is close at hand.
And the one who hangs on with a stubborn grip is the fellow I'd pick to win.
Tomorrow is a slow built thing Made up of Yesterdays. and problems, just like mountains, can be conquered if we do our best to reach the point where we can see the other's view.
And dream worth the dreaming deserves a generous chance to come true.
Love goes to work with patient hands to make these dreams come true......A dreamer never grows old.
And a loving there so fierce that it tares the soul apart.......That's Christmas.
Yes, life is measured by inches......We can inch our way up to a star!
This tiny little Hallmark book has made my Christmas.  I have decided to read these underlinings at Christmas dinner in memory of Ellen and Sharon and their understanding of the Christmas Spirit...love Pokie

Saturday, December 12, 2009

The Story of "Our Lady" The Parkinson's Quilt Project



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If I can do this so can you.  Good thought huh? I have never believed in the word can't and I am very much a dreamer. When my children were small and still to this day, I told them there was nothing they could not do and now I have once again enlarged my family and on patientslikeme.com I am telling each member on the Parkinson site they can become quilters , if they believe.  No matter where their disability lies in this disease, just as long as their choice in material and art supplies is permanent.  I want them to open up their hearts and show the world their feelings about Parkinson's Disease and in doing that prove to the world how productive a patient with this disease can be.  October of 2008 I ask them if they would like to make a quilt and over twenty made me squares which I had quilted into the large quilt you see above.  The square below it is my square. The quilt is she in gender and we refer to her as "Our Lady" When one of us is sick, she travels to encourage us on.  She is now in Texas with VigWig while he has DBS surgery. If we are talking to a group, or just need her hug," She" is there.  It may seem odd that such a diverse group can find beauty and help in such an odd way from the past.  Aquilt has always stood for warmth and comfort, security and best wishes.  These are everything a Parkinson's patient seeks out.  patientslikeme.com gave us the space and encouragement to carry on our quest. We spent hours transfering pictures of our project and when it came time for the 2009 Unity Walk we were ready to show the world who we were and where we came from.  It was a beautiful day for not only me as caretaker of "Her" but all who participated and all who saw her.
My square has a laminated penny stitched into the center of the tulips, for good luck., just as I try to do with each of my squares.  I am a three star member of PLM and have been on the site over three years.  PD's colrs is red and the tulip is our ensignia. God is always with us, hense the cross. I always hand stitch in order for my soul to be a part of the piece.  My grandmother use to say."every quilt needs a finger prick for a drop of blood to give it life". That's my name Pokie Too and has been from my first signing on in October three years ago.
Now I am asking even more people to join in and experience the joy of a project for not only the wellbeing of your heart but the wellbeing of many across the world. We at Parkinson's Disease Foundation are making 2 foot x 2 foot panels to be joined into quilts to be displayed at the Global Conference in Scotland in(once again) October.  October seems to be my lucky month!  Each panel will be registered and numbered and require a $25 fee fpr that registering.  There are scholarships to cover the fee if it is not available. They can be joined together to represent a site or company or made in honor of someone you know with the disease or has passed on. You may know a caregiver you want to recognize.  Just  remember you have to register your square before sending it in.All of the How to Do This are at http://support.pdf.org./quilt  Check it out be you male or female and see what you can do to bring awarness to this terrible disease.......love Pokie

Thursday, December 10, 2009

I am out there on the soap box again......

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I really don't know who to call first, "the geek squad " for my computer or my brain.  I 'm not to sure one isn't handicaping the other.  I go in to the computer and some nights it runs so smooth and other nights I can't even get started.  My printer has totally ignored me for about a month now and a couple of nights ago just up and printed a years worth of one of my other blogs Coffee With Pokie  .  I was tickled to get the printout but for over a month the computer had told me it was not connected to the printer. Maybe it was wrong and was not connected to me.  Everyday I am reminded of the shrinking number of brain cells I have.  I am thinking God thinks this is very funny when I try to manuver around. My inablity to understand or retain what I DO understand seems to be getting larger.  I would think this would be a lot easier if I was not working on so many projects at one time. My diningroom table has a 2 ft. x 2 ft quilt square on it tha cannot be moved until secure.  My desk in the study has books laying around everywhere open to something I think is important to say.  Mix in the idea of Christmas and decorations and presents.  Dress that up with holiday visits and my beloved grandkids.....and my brain sometimes just starts screaming "stop you fool, your not  suppose to be able to understand this" But as I sit here looking around, I cannot think of one of these things I want to give up.  The giiving up would be like giving up a very good friend, and we know I don't do that.  This is my time of year, even though winter has come with a vingence just like the Almanac said it would.  I don't know about your part of the world or country but the wooly worms in my part of the world were totally black this year..meaning when winter started, it would be bad all the way through without stopping..  I didn't get out to get persimmons, but did you know you can split the pit open and there is either a knife, fork or spoon inside and that is a sign wheither the winter will be mainly ice, snow or cutting winds.....Are you getting the picture here?  My brain is a world of useless information....dated back about nineteen hundred and tring to wander out into cyberspace and function...heaven help them and me,

Now if this were not enough I am toying with the idea of loosing alot of weight and how I could document it through my doctor. This maybe more than I can handle, but I will warn you the thought is in the process.

Now just a word on the subject of doctors.  Are you aware of the fact that the US government is trying to leave Neurologists out of the new Medical Plan?  This would mean that Neurologist would be the only physicans who manage and coordinate care that would not be eligible for the bonus. What or THEY thinking?  I cannot function without a Neurologist at any price and Have set a very high standard as to who I see.  What can you do about it?  Please call your congressman or email him and complain.  Get them included.  Why should we have to monitor every inch of the way this bill travels on?  Isn't  it suppose to be in our best interest?  Not hardly if you stab my neurologist in the back. I not only have Parkinson's but Epilepcy, too.  My mom has Alzeheimers, my neighbor has MS. We all need the special care of a Neurologist and the best we can find.  Think about it and call...

There is just one more thing......I wish you the Merriest of Seasons....Be it Christmas or whatever you celebrate.  Just try to remember one thing.  Look what such a small package has done to change the world.  Can't we help out with a series of small deeds. If it be only a hug to someone in need,.Do It.  Everything you do for someone else comes back two fold    Merry Christmas        Love Pokie

Thursday, December 3, 2009

Parkinson's Disease Foundation Quilt Project is Launched

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Something very close to my heart became public today.  The Parkinson Disease Foundation(PDF) has launched a project which I am a party to.  In this project we will attempt to make 100 or more quilts to be shipped to the Global Parkinson's Conference in Scotland in October.I am a part of the planning committee that was founded in July and for the last months have tried to plan the best way to unite the patient community in a project that enables them to project their feelings and views on Parkinson's to the global commnity. A quilt square becomes so personal as does this disease.  Each of us suffers in a different way and each of us will show those feelings through the darks and lights of a quilt square.  If you go to http://support.pdf.org/quilt you can not only register but get all the particulars of making a 2 ft x 2 ft. square.  The square must be registered before it can become a part of a particular quilt...Check this siteParkinsonDisease Foundation Quilt Project and enjoy. It is an excellent way to get YOUR word across and speed a cure that has been way to long in coming...love Pokie

Today With PokieToo and Parkinson's and Acute RA Disease