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  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 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 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'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 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 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. 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  Check it out be you male or female and see what you can do to bring awarness to this terrible 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 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 Pokie

Saturday, November 28, 2009

E is for Epileptic
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I will have enough information to become a doctor if I live through all this. I am a Epileptic that has Parkinson's, and a diabetic that has blood pressure issues, and a 62 year old grandmother that is over weight.  But believe it or not I really don't feel all that bad.  The support around me is incredible. has opened a new Elliptic site and it is in beta stage with almost a hundred in it already.  The things I have learned there in only one week are huge. Charts to track your seizures, information to know just what kind of seizures you are having, friends in your bracket to talk to and support behind the screen for anything you want.  I have been a member of the Parkinson's site since 2007 and believe me I would not be here now without their help.  As it turned out, the odd feelings I have been having for six months were the Epilepcy not the Parkinson's.....I would strongly advice anyone with either of these diseases to contact the web site and check them out...They really Pokie

Monday, November 23, 2009

Happy Thanksgiving 2009
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I wish I could travel from door to door and greet each of my friends with a Thanksgiving basket of good wishes.  It seems somewhere between Halloween and Christmas, Thanksgiving gets lost.  Thanksgiving should take so much more power over Halloween, especially this year.  My thought is, and I do realize that many may not agree, that there is so much to be grateful for and especially this year.  My list of friends would force me to start traveling in the summer if I were to visit all with a basket and what would the baskets hold?  Some would hold books of poems and stories to fill those empty hours when no one is with them.  Some would be filled to the breem with fancy foods they should not eat but they could break into and cherish just one day. Some would have packages of  hope to be opened each day and held tight until the next day came.  Some would have snuggle blankets and warm sunshine to warm the aches and pains away.  And some would have hugs and kisses and smiles in abundance.   I know I am a dreamer and a dreamer I will stay because thease are the things tht get me to the next day. My Thanksgiving will be spent with my kids and grandkids and I will  tell stories because that who I am in this family "The story teller".  We will eat too much and drink some hot chocolate with a little kick and thoughts will wonder through each of the kids heads about my condition and they will wonder why this had to happen and I.....will think how blessed I am to be here in their presence with them knowing how close their mom is to her Lord and how pleased I am with my life.  Today and tomorrow are more special than yesterday and the past.  My smiles get bigger and my happiness grows daily. The days are so full and I am never alone. Thanksgiving is all it could ever be and when we set down to our table at my daughters house we will all know the key has been past. The next oldest child has taken over for mom.  The groceries are bought and HER kitchen will be warmed and her family will learn first hand what the holidays mean. I have enjoyed and looked forward to the all day all night ritual on Wednesday and the dressing of the table with each glass in its special place. Each bowl fixed just so and the antique bowls from generations past holding only cold dishes so as not to suffer cracks.  For you see, previous generations eat with us through their cut glass surving bowls and some like my dad will be their through his apple salad and oyster dressing.  I apolagize for the rambling but in all this I hope you have felt the warmth and love and maybe if I didn't make it to your door I made it to your heart...Happy Thanksgiving...Love Pokie

Monday, November 16, 2009

"I love you, too.........
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What does it take to make a good friend and do the requirements change with time?  In early life it is some one who plays with you in the sand box and though you have spats always comes back on another day, with all things forgotten and ready for a new episode to start.  Mid life is the same with bigger stakes, and one is always distracted by life's hassles and tragedies . At this point in time, one usually turns to their family. Friends are there but not to the intensity that comes with age.  Like a good wine these friendships are the best by far.  Any emotion that makes it past the passion of the early stage and moves on or endures to the clear thinking stage is worth its weight in gold. I have reunited with high school friends recently and that set my heart off and running.  I got very sick and woke up to my best friend at the end of my bed. I have gotten letters from strangers from all parts of the world wanting to be my friend.  I have friends I have never met but who warm my heart by simply stating,"I love you too"......As I have stated before.  When I came down with Parkinson's Disease, I would have had trouble finding eleven people to send a chain letter to.  I had people I had relationships with but few had went deep into my life.  This was either by their choice or mine.  My children occupied most of my life and my love life occupied the other.  I traveled from one day to the next at a lightning pace not realizing that God had only allotted so many days to each of us and we should be cherishing each sunrise and sunset and all between. With Parkinson's you can travel through many diagnoses before they land on a firm opinion.  You may start at Parkinson's, travel through MSA and end up in Lymes or  vis versa.  Maybe it is the tragedy of all this or just our maturity, but these friendships seem to me to be the best.  Maybe it is the whole ora of emails instead of letters. All I can say is that in the past three years I have made friends that are so precious to me.  I have continued with old friends in a new light that truely shines.  I look forward to new relationships daily from places I will never see. Yes I believe in a higher power.  To me it seems to be a given, and as I battle life these are the things that keep me going and smiling. No matter how tired I am, there comes a ,"I love you too, Pokie" that is just like God pulling a snuggle blanket over me so I can take a good nap.....thank you Lord and one and all,     Pokie

Thursday, November 12, 2009

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Pokie on a Soap Box
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You would never know that it's been a month since I had a seizure.  I am feeling great and the things that are happening in the part of the medical field I touch are just beyond belief.  I have waited for three years for some of the things that are happening now as you read this. People are contacting me that have arthritis, Parkinson's, Epilepsy, diabetes and more and wanting information and I can provide them with reading material.  Patients from all over the world...Kenya, Israel, Canada  and all over the U.S. The "One on One" belief is spreading.... and fast. Who would have thought that three years ago such communities would be springing up that benefit the patient?  Finally the patient has come to the forefront, where he should have been all along.  The patient is the one with the disease and he should be in control of his treatment and records....He should be given every bit of information and showed every test result.  He should not be treated as a number but a person with a heart and soul. As we get these diseases the opportunity for research increases.  Many diseases have cross similarities and can be studied for the benefit of all. If you have Parkinson's, you have symptoms similar to Ms, ALS and many more.You should have the right to find other patients and form a community for the benefit of all and have that information researched for a cure.....because one cure will no doubt affect all of us.  As we as patients reach out into cyberspace to other patients to find out what works and what does not, drugs that don't work are left behind and treatments are required to be improved.  The diseases that were concidered hopeless and  therefore best treated by medicating (often over medicating) and hiding that patient from the public, are coming to the forefront.  We are funtioning , productive members of society.  True there are things we can not do for ourselves and yes we need help in some areas but the mind is the last thing to go and we are the senior survivors.  We are the people who know the ropes. All we need is someone let us use their legs to spread the word and help us find a cure.  Parkinson's is being diagnosed at eighteen...It is no longer an old persons disease.....Can you help us out and let us use your bodies and legs to get our knowledge to the public and the medical field?...As always, Pokie

Friday, November 6, 2009

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Miracles happen in so many ways to so many people.  I'm sure so many are happening each day and no one takes notice.  Yesterday was one of my big days, though I believe miracles are happening to me all the time.  I have posted on for three years and laughed forever about the elves on the other side of the screen that made magical things happen, like things I could not find pop up and much more. I would literally fall asleep at the key board and my problem was solved. Yesterday I opened my Facebook and the owner of  the site ask to be my friend.  I could not even breath.  Me a retired goat farmer from the Midwest and he an MIT graduate..WOW. This is someone who is changing the way the medical world thinks about and treats patients and he has personified an untouchable force running a site I dearly love. He is making steps I could never make but together we can be heard on a much wider plane.  This pretty well took my morning to an unknown high.
Then came the afternoon and an email asking for support on a national tee shirt contest for PDF and I knew someone to refer and did.  She is a very close friend and talented artist that just happens to have Parkinson's.
Emails were flying and thoughts were just being produced faster than I could write them down and then came an post from a very close friend who has the ability to find all the most pertinent articles to Parkinson's and send them my way. She is a genius at what she does and I have admired her ever since my first day on . She posted a story of a crew of doctors in Ohio State (The Midwest) who had found an enzyme that attacked the human braincells producing dopamine and was able to not stop the progression of Parkinson's but cure it. Now my days to not get any better than this....The awareness sturred by this article alone is huge.  The cure gets ever closer and my spirits continue to climb.
So many miracles, for me in one day and you would have thought this enough but, I am walking much better too.  after believing I was wheel chair bound and soon, here I am walking, not perfect but better and my endurance is increasing..  I am sure the seizure meds are playing a huge roll in this and it is a miracle at least for me. No day is perfect with Parkinson's Disease but yesterday was close Pokie

Tuesday, November 3, 2009

A John Deere Deluxe Wagon for Me......
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Who says you can't have fun and have Parkinson's?  No not me.  Early today my son picked me up with my youngest grandson Ayden. The three of us plus grandma headed off  to Bucheitt's, something like a Rural King in our area.  Our mission was Matthew (my son) a birthday present and me a wagon.....not just any wagon.  I wanted a John Deere deluxe, with tall wooden sides and special tires for ruff terrane..This would be the top of the top of wagons and I knew I would know it when I saw it.  Ayden and I set off me in my power chair and he in his three wheel stroller.  Every so often we would stop for kisses and a little hand holding.  Then we rounded the corner to end our jouney.  I watched his face and knew I was in the right place.  His eyes were huge when the clerk got the ladder out and pulled it down.  He would look at me and look at the wagon.  My point rating as a grandma went off the charts.  He has this thing he does when he is really happy.  He has done it every since he was born.  I call it "singing with the angels" and he started in singing and his thought was WOW....Now you might wonder why me at 62 needed a wagon and that fancy a wagon,  The reason is because I can put my groceries in and get them to the front door after shopping. When we got home, his dad loaded him in and my purchases and off we went.  The special tires let me roll right over the drive way and up to the porch.  He and I singing the whole way.  Who would have thought life could be so grand with Parkinson, Epilepcy and is and I can only say Pokie
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A Quarter To Three

It cannot be a quarter to three;
I've piddled all night and can hardly see.
Don't I know what the doctor said?
"You sleep seven hours in that bed!"
I shower and I change and I get all quite ready
and go visit dreamland and stay there a plenty.
Somehow I know that seven is just too many
So after two my eyes fly wide open.
I shut them but realize a curse it must be,
No sleep, No sleep, No sleep for me.

Sunday, November 1, 2009

Yes I Can.....
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For over three years now, my mind has allowed me to rest for two or three hours and then either dream or force me out of a dream onto the computer and typing.  To some this would seem torture but to me it is a passion pouring forth.  My thoughts seem never ending and constant about Parkinson's Disease and how it effects my daily life.  No matter how I feel, be it weak or in pain, my first thought is to get to the computer and type in some form or fashion. My whole life has always centered around my family.  My three kids and later five grandkids have always been all I seemed to be able to live for and then came this disease. Oddly enough I seem to be granted these short periods where my family is allowed to make me laugh and then back to here to type all I feel.  Yesterday my youngest grandchild graced me with a visit.  I can no longer just take off and visit him at my every wim.  My mother at 84 and can not be left alone and now my Epilepcy prevents my driving long distances. I did not realize how much I missed the laughing. That little face brought a whole different world to me.  He turned and looked me straight in the eye and  for a moment. I did not have a care in the world..  Parkinson's was not a part of me.  It was only me and Ayden....laughing.
Here he was at eighteen months in all his Halloween glory  and he had total command of me and every thing around me.  Those beautiful blue eyes surrounded by that most gorgeous white blond hair knew me only as "Nee Nay" and my home was a treasure trove of buttons to push with a kitten to follow along behind  My eyes never left his the whole time he was here.  I litterly was in a trance. He sat on my lap and I can only say I visited heaven.  I went to bed with a smile on my face and still have that smile on my face. He gave me the strenghth to fight through a hug.  When my resorces were running so low God sent me prescious Andyen to shore me up for another fight.  Wow.... what a gift!  I see now it was their way of saying, " Can you remember this hug and pass it on?"  "Can you hug someone who really needs it tomorrow?" "Can you make them smile?""Can you write one more word to let them know they are important?"..... YES I Pokie

Friday, October 30, 2009

The Lady Hits the Road
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Almost a year ago today I posted on the question,"Would you guys like to make a quilt?" and the answers started rolling in. I bought  material and cut three 26 inch squares for each person who answered. This was a sizable leap of faith for each person answering because they had to give me their address and sometimes their phone numbers. As the year moved on the trust and feeling of community progressed on to regular correspondence between us. She was ready in time for the walk only due to the quilting done and donated by Barb Marfell, a cancer survivor in a nearby town.  As our friendship grew, I found out her brother in law and father in law had had Parkinson's and are no longer with us. With this I began to feel the personality build in the quilt.
I ask each person to write a small story about what "She" meant to them when hey were done and in April off she and I went to Central Park and our PLM team of 37 walkers.  We raised almost $20,000.00 for Parkinson's Research and most of us had never met each other. Our plan was to aution her off later for research.  Little did I know how attached we would become to her and what a sick road I wass ready to set out on.
I came home on a Sunday and the following Saturday had a symposium for the town and since then have gotten sicker and sicker until the 7th when I finally had a seizure and was diagnosed with not only Parkinson's but Arthritis and Epilepsy.
Today I sent her on her way.  Unprotected.  I would have never dreamed I would become so attached to anything made by strangers.  But, as she travels around they will feel her spirit also and contribute to an ever widening cause and her job will be Pokie

Saturday, October 24, 2009

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A very close friend who I have never met is behind this.  As a matter of fact many close friends some I have met and some I haven't are responsible for me finding this site and I would like very much for you to get involved.  Please if you believe in your rights as a patient, if your a caregiver in need of support, if your just someone interested in the health field and your interaction with it. read about this and get involved. Only through our personal passions can you make a change in this world.  Let me tell you a little story about what happened to me Friday.  I met a miracle doctor in my home town.  I don't think I am suppose to mention his name and I won't but this is how the story goes.

I had appointments at our hospital early Friday morning.  I had blood work down and an appointment with a specialist in thyroids and their functions and malfunctions.  It would have been very easy for him to come in and tell me I needed a biopsy and we would go from there and after much time and money tell me it was a false scare and come back in a year.  This doctor made a special effort to pull up my sonogram and find a computer that he AND I could view it on and he told me," You can do what you want with this but I would let it go." There were some abnormalities but so slight and I am 62 and nothing is normal anymore.  Do you have any idea how much I appreciated his honesty.  In this time of everyone needing money, a lot could have been made but a lot was saved and we are friends for ever.

When the viewing was done we went back to the office and what did we talk about?  We talked about my blogging and how much it meant to me.  I gave him one of my cards and he told me a Parkinson's joke and we shook hands and as I went down the hall, I thought to myself, "This is the way it is suppose to be."

Make this difference for yourself  find this blog site.http://www.HealthDataRights,org and make a difference for you and for me and maybe the Pokie

Thursday, October 22, 2009
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It cannot be a quarter to three
I've piddled all night and can hardly see.
Don't I know what the doctor said?
"You sleep seven hours in your own bed."

I shower and I change
and get all quite ready,
and go off to dream land
For what seems a plenty.

BUT, ....
Somehow I know seven is just too many.
So after 2 my eyes fly wide open.
I shut  and realize the curse could be..
No sleep, No sleep, No sleep for me!
                                                                                  Pokie Too

So many of my friends can not sleep at night and as I tried to sleep this verse popped into my brain. I hope you will all know you are not alone in your troubles.I am here traveling with you experiencing as you do the ups and downs of not only Parkinson's but RA. Epilepsy, diabetes and high blood pressure.  This promise I have made to me .I WILL CHANGE THIS YEAR.  I will travel and I will make you proud of me as your spokesperson.  With Gods help we can find a Pokie

Wednesday, October 21, 2009
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Isn't it amazing how God leads us through?
He gives and he takes, to keep us so true.
I can only speak for this life he has given me
and it has appeared in stages of three.

First as a kid, footloose and free,
I fished with my dad not a care did I see.
I mothered my brother and tended the house,
A child in the fifties,the neighborhood mouse.

Then came the teens which went by too fast,
Young Elvis's crept in and out of my past.
Young love, old love, no day was the same.
Adventure, adventure just playing the game
Then came my children, the number was three.
Each so different and a delight to me.
I could have not survived had this present not been sent
To need me and want me and hold me.....
I'm Content.

Now are the adventures of Old Life and pain.
I wanted in this life to make the big gains.
But these are the Works that God put me here for.
To help my fellow man to light a new star.
To help him to smile on a bad day.
To make the pain less and maybe go away.

I feel God smiling, and listen to him say,
"Poke, the world is much better for just one day.
One on one we have slipped through the night
One on one we will be alright"
                          Charlene"Pokie Too"Pryor

Monday, October 19, 2009

What am I Battling Now?
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I am not going to dwell on this but I things have once again changed for me.  After my seizure last week, I'm dizzy and the anti-convulsion medication really knocks me out.  They have cut the requip to twice a day and today I slept from 12:00 to 4:00  and probably would have slept longer if my mom had not woke me up to see how I was doing. But as before, thirteen years ago, I am calm and peaceful inside.  Only one thing has changed since then, now the one thing I had left is gone .... my right hand.  It now shakes right along with the left and takes me to  unexpected places on the computer. I look up and I am on the wrong line or wrong page all together.  Why don't I just give up?  I have wrote enough lines to fill several books.  I have made my point with more than enough people.  I have traveled enough miles for Parkinson's.  Or have I?  Is there a stopping point?  I don.t think so.  Is there someone interested that this seizure has set my right hand off ? If there is not there should be.  Some researcher should be calling me in to investigate what is going on with me.  Why is my right hand unable to rest when I am typing?  This is almost like starting over with PD except the symptoms are much worse.  This is my diagnoses Pd, RA, Epilepsy, Diabetes, Fluctuating Blood Pressure, and Cysts in my Carotid Artery.  The Heart is good. With these I am a medical wonder or disaster waiting to happen, so I am just going to continue as I have, writing things from the heart, because I know it cares. Writing things from the mind. as long as it holds out and I can remember.  And writing things from my soul forever......Love Pokie

Sunday, October 18, 2009

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Have you ever wondered, when you taking that next dose of pills, have they got the right disease? Do I really have Parkinson's Disease? Have they made a wrong call and I am wasting time taking meds for something I don't have. This has happened lately to several of my friends who were in the Parkinson's community and now or MSA or Lymes. What a shock to know a disease you have been told will go on for twenty or more years has only given you three to five. You cry and ask, "Why Me?" and go into shock. But if it is Lymes you go "Yes, I knew I was different" and start the grueling task of trying to stop this ugly disease. So many of the symptoms of Lymes are the same as Parkinson's.  No one should be treated for Parkinson's without being tested for Lymes and that testing should go through Igx Labs. It is not an easy community to live in because of the huge amounts of antibiotics you must go on and stay on, most of the medical practitioners shy away from you. Fourteen days is the recommended duration on antibiotics, not possibly a life time. And this treatment is not cheap...As you travel this road everything is against you....the food you eat, the stairs you climb,and even the bed you sleep in.  You hurt all over.  Your specialist costs a small fortune and every state has different laws concerning disability and treatment of Lymes. Lymes is called the siffliss of this generation and rightly so. This is a true hidden epidemic.Because of the treatment, many doctors are in danger of loosing their license for treatment and so skirt around the meds so as not to cure but make life easier for the patient. If you have Parkinson's please be tested for Lymes  and fight for your right to be treated. Surely an investigation will be made into this disease and how it is effecting the United States.  How many hunters do we have here? Did you know this can be passed on to your children at birth? Did you know it can be carried until it kills you? Maybe you don't remember being bitten and maybe you were not and still have the disease. You ache all over and just generally feel bad.  Did you know  that every time you eat sugar, or anything that breaks down to sugar, you are feeding the disease? I know Parkinson's wears you down and you DO get to the point where you say no more.  No more pills, no more reading, no more doctors, but read up on this.  It is a true epidemic and you may be part of it.................Love Pokie

Friday, October 16, 2009

Devine Intervention
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I have had some interesting conversations lately and as I mull them over in what is left of my brain.  I thought I might pass my thoughts on to you. At the beginning of last week I had a seizure.  I have Parkinson's and was not really expecting to return to Epilepsy.  In 1996 I had two grand mal seizures and had no more.  this led me to belive I did not have Epilepsy but only Parkinson's.  Wrong.   I have sense learned that once you have Epilepsy, you always have Epilepsy.  I was preparing for my big day at the Health 2.0 Conference and had a phone call at 12:30 and went down. At 2:30 my much frightened mother was trying to wake me up. I ask her to hand me the phone and I dialed a phone number I did not know to get help.  Now in telling you I did not know this number you may be confused.  The number was to my daughter's work office and I only know her cell phone number. I got right through to the receptionist who hurriedly got my daughter and off she came to get me.  If you do not believe in a higher being, I am so sorry, because this was definitely divine intervention.  I have never used this number and do not know it now.  Thank you Lord. I now have two general practitioners and a neurologist among my many doctors.  These three are immediate and functioning and the give and take has been amazing.  My medications have been completely revamped.  I have had Sonagrams, Xrays, EEG's, EKG.s, blood work and stress tests and to this one of my doctors calls me his "medical encyclopidia."  One doctor just keeps saying, "Amazing" and the neurologist redid my whole life in a language I did not always understand but always answered, "Yes."
I am not sure where God is taking me this time but am totally amazed at his technic.  As I sit in my recliner and try to get some of my strength back, my mind knows better than to question too much but as is normal with some humans, I question every turn...... knowing there are no answers.
I decided tonight to go back to stories. Small treasures to be left behind for my grandkids.  Pictures of a past that no longer exists. Told as only my mind remembers it and saved for another day.  Those that read my ramblings often say that is my best shot and I hope you continue to Pokie

Thursday, October 15, 2009

Lord, Make me Worthy of my Friends
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Life is just so much fun.  I wonder if there is just so many diseases you can have.  I now am a known patient for Parkinson's, Epilepsy. Diabetes, high blood pressure, pneumonia, and a urinary tract infection.  My pharmacy is working overtime on interactions.  One med they took me off of yesterday because it was just too hard to follow.  I go in Friday for Sleep Apnea and a test and the end of next week get the coradid artery taken care of. I can say I have an excellent health crew, doing all they can to get me feeling better. The slightest exertion and I have a head ache.  This leaves me and my kitten in the recliner with PBS tv. He must sense a problem because he never leaves my side.  He's sleeping on my computer as I type along.  With all of these malfunctions, I still feel very blessed, indeed. I have so many friends who support me all the way.  I can only imagine what this would be like without them.

If I could have but just one plea,
I think that that one prayer would be,
With all that such a prayer portends...
"Lord, make me worthy of my friends"

Give me the courage under stress
That they expect me to possess;
And when they smile and look at me,
Oh, let me be Lord, what they see!

And if, sometimes, I may have erred,
In any thought or deed or word,
Then help me, Lord, to make amends...
Lord, make me worthy of my friends.
             H.L.Marshall                      Love, Pokie

Sunday, October 11, 2009

Dreams or Nightmares?
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Well that was an interesting morning, to say the least.  I got Facebook all set up to monitor the Health 2.0 Conference and thought maybe I should go get something for lunch in the kitchen before I got really busy.  Two hours later my mom was waking me up on the kitchen floor and I was off to the hospital for several days.  It seems I had pneumonia and a urinary tract infection which triggered a seizure.  This was the first seizure I have had in thirteen years.  The doctors now feel the epilepsy is back and have put me back on depakote.  I never got to enjoy one minute of air time.  Oh well, I learned a lot by setting the site up and really had a good time before the seizure. Monday I will head back in to the doctor and hash all my meds over again and have a sleep test for apnea. There seems to be no end to this road once you start on it. I will all more tomorrow when I have had a chance to check all the sites pokie

Wednesday, October 7, 2009

I am Set Up and Ready to Go
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I  have barely slept I am so excited.  I must take this opportunity to thank everyone for the ride of a lifetime. I have set everyone up on with a place to watch live and was so excited about the Quicken site an info from yesterday. Can the cure be far off with this storehouse of information available?

Tuesday, October 6, 2009

Hello San Francisco......
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This has been a blast today and almost as good as being there...just almost.  I have been in touch with so many that I would have never had the opportunity to meet and spread the word with.  My original home, long before blogging came into my life was  I have been there since October 2006 when there were only 10-20 people posting and 267 on profile.  Now there are over 4000 in the Parkinson's division alone.  With Parkinson's and MS joining forces on the registry, look at the data base that is being formed.  I am so thrilled  a  to be a part  of  this adventure for the cure.  Turn around and wink at the camera if you read this or post to pokie

Live At The Health2.0 Conference
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There surely could be nothing to top this.  If I ever get it all running smooth and my brain doesn't give out on me it will be a day to remember.  I have not got a clue as to what I am pokie

This is the Day
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I am so excited.  The tremors are big time today.  I really hope I have enough brain cells left to get through this.  At sixty three and stage three or four Parkinson's this is a lot to take on.  My computer skills are so minimal and time is of the essence now. It still strikes me as hilarious that I was never on the computer before I gained Parkinson's in my resume.  I never just threw all common sense to the wind and told every thing that wandered through my brain to complete strangers.  I can only say the internet has been my salvation with this disease.  It has given me a purpose and made me feel like I had something to offer, at this late stage in life, to the world.  It has brought me friends from all over the world who have held me up on bad days. Wellsphere and have been a God send in my time of need. This connection to the outside is vital when you are facing a cronic illness. With so many of these disease the patient begins to withdraw from society.  It is only natural to want interaction without ridacule or judgement and be able to ask for help and get it 24/7. This has saved my life. In the last two years I have preached the need to take healthcare to a "one on one" plan.  One person helping one other person expands in twos. The word then gets out in multiples and twice as fast.  If we are ever going to beat these diseases, it must resort to the grassroots.  If you give the patient a sense of security and caring, he will tell you what he needs.  If he believes you are listening, he can be helped and will tell you things no one else has heard.  These small things are huge in healing these diseases.  Only the patient knows how he feels on a daily bases and what he has learned to do to make him feel better.  We as patients have our own networks to work through.  If we do not know how to do something we have resources to help.  Call this social networking or friendships it works.  Thanks Charlene"Pokie Too"Pryor

Saturday, October 3, 2009

I am So Honored.....
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This week I received the thrill of my life. notified me that I had been chosen to have my blog displayed at the Health 2.0 Conference in San Francisco next week.  This is one of the largest health venue in the United States this year.  It seems they will have two large screens and be displaying blogs on them both days.  One screen is in the main venue and the other in the lounge.  As if this was not enough to send me into orbit., they also let me know I will be entered in the 2010 Top Health Blogger of the Year at the Conference. My blog will receive a badge so followers of my blog can vote for me as they wish. This is just totally unreal once you realize that I never wrote a thing before October 2007 when I ventured into, while looking for my email on yahoo.
One night in 2008 I could not sleep and decided to check out and before I knew it, the clock struck 7:oo am and I had given birth to a blog.  I hurried back to Patienslikeme and announced my invention only to find out I had actually invented two blogs neither of which anyone could view.  The site worked with me and got one canceled and the url straight on the one I saved, and I was off.  Most people would have stopped there but not me.....Now I write three blogs and truely love it.
One of my favorite and oldest blog posts was called:


In approximately 60 some odd hours the sum essence of an entire life has come full circle.  I once told my very dearest friend on PLM that I was more comfortable as Pokie than I ever was as Charlene.  When I came to this friend, I was losing another dear friend to cancer and it seemed that absolutely nothing was going my way.  The more I poured my heart out the more likely it was that those were the things and people who left me stranded in pain here on earth.  The night I found this friend was like so many at that point in my life....empty, self-pitying, pain raging through out my body and my life was shrouded in dispare.  The odd part was, no one seemed to notice are maybe just did not care to notice the desperate shape I was in, and what makes it even sadder...... neither did I.
 I am looking for my mail, all the while praying I would just wake up in another place in another time where Parkinson's did not exist, and out of the blue, there it was  I logged in and messed around with the profile a little and thought to myself, "Are you crazy?  I'm not putting all this stuff on the street."   I bypassed it and went on to the forum.  For a day or so, I just read and very ackwardly found  my way around the site from 1:00 AM to 5:00 AM.  Sometimes I would be having trouble with something and would nod out only to wake up and find the problem solved.  And then one night I was talking about the pain of losing a child in a post.  When I was done a post said, "I know Pokie I lost my son."  A bond was formed that I hope will never end.
Over the span of time until March this friend would just let me enter my virtual world when most were asleep and wander here and there reading everything I could find.  People say I have a big heart but this persons heart is HUMONGOUS.  My friend took me from almost total seclusion to the person I am today. With ever so much tender care, my friend allowed me to play and joke and write poetry and do really nothing that had been done there before.  Soon others began to laugh as I had and the pain was not so bad anymore,  One time in a post I made the statement,"You inspire me to be better." and my friend came back with, "No Pokie you inspire me." and with that my friend went to super status and I found a home at Pokie

Thursday, October 1, 2009

This I Know
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I have read too much lately and filled my dopamine starved brain with many very disturbing thoughts.  The news has gang wars, senseless killings and stories too gruesome to imagine.  Small, small children going hungry as their parents panic from job loss.  Houses made a home where in a family dwelled, taken away with not a bat of the eye, leaving two or three generations homeless.  Is it any doubt that people you come in contact with are not trusting or long for another reason in your deeds?  What seemed so effortless two years ago now is a struggle.  I have always tried to live in the path of my Lord, hoping to comfort along the way the needy.  Maybe it's my disease and maybe the times but winter scares me this year. I have had the dream of finding the cure.  I walked the miles toward awareness but now I have stopped to focus.  Which way is the right way on this journey and will I know before I step into the path?  Have I become hard in my fatigue?  I seem to be wandering from side to side on a path I once traveled with a light heart. I have always met the world as a challenge and tried to give it my very best but now I seem to doubt if I can do enough to make my world right. I can only feel so happy that I have my faith in these times of trial. My faith, I know will somehow replace doubt with peace. THIS I KNOW:
Grief has it's rhythm....first the wild,
Swift tide of dark dispair;
The time of bleak aloneness,
When even God's not there.

And then the slow receding
Till quiet calms the sea,
And bare, washed sand is everywhere
Where castles used to be.

The gentle lapping of the waves
Upon the shore.....and then
The pearl-lined shells of memories
To help us smile again.

Thank you H.L. Marshall for in your day and time knowing how to quiet my storm in this day and time.  The killings must stop and we must give of every thing we have.  This is the greatest nation on earth and we have come on much harder times than we are being told.  If it is just taking something warm to a neighbor in need, then do it.  If it's heading a fund raiser for your food bank, then do it.  If it's touching someones hand as you speak or a hug from out of the blue, what have you lost?  Please set a better example for our young and love with all your heart. Our nation is so precious, dour families so dear.  Together we can do this, through trust in ourselves and the Pokie

Wednesday, September 30, 2009

Computer Savvy
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Today was quite the day for me on the computer.  I usually just stumble in and out of sites and always spend way too much time wandering around and going back and forth.  I have vowed to change this in the coming year.  This may be harder than I think but today I attended my first webcast on the computer at and it was excellent.  Melissa J Niremberg M.D,, PhD. from Weill Cornell Medical College, New York, N.Y. was the guest speaker .  Her topic was Myths and Truths with Parkinson's.  The site was easily accessible and extremely well formed.  I took four pages of notes and felt like she was hitting all the things I had always wondered about.  The webcast will be archived October 5th for continual viewing.  November 17th will be the next webcast and it will be on Caregivers.  This may turn out to bee the safest way to get information this winter.  You can get your beverage of choice and snuggle down with your computer with no exposure to the flu.
Some of the highlights where that Parkinson's is a disease you can take on and still have quality of life.  One of the statements she made particularly hit home with me."Parkinson's cannot get suddenly worse without a cause." Be it infection, another illness or medication changes, look for the underlying cause and do not stand for the statement,"It's just your PD."Another myth is that Sinemet stops working after five years.  Wrong.  Huge on the scale of things to look for is Urinary Tract Infections. These are very common in PD patients and can set up a lowgrade infection before you know it.
Movement disorder is only a part of PD.  Non motor symptoms rank high.
1. shoulder pain...misdiagnosed as rotter cuff when increased sinemet can improve it.
2. lose of smell may come on many years before actual diagnoses
3 .corpule tunnel misdiagnosed  and is actually PD.
4 .Rem disorder may start 2 or more years in advance of diagnoses.
5  Cognitive issues.
6.  Blood pressure drop when standing.
7.  Fatigue...fatigue...fatigue.
8.  Intestinal and bladder problems.
9.  Depression and anxiety.
people and doctors tend to notice what they see and do not know about the motor skill problems if you do not tell them and be hard headed about it.  Don't just take a simple answer as the gospel.  Do your research..Good luck  love Pokie

Tuesday, September 29, 2009

Changes in the Air
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This is and has always been my favorite time of year.  As a farmer the crops come in and the gardens are put up in anticipation of a hard winter.  No matter what my circumstances, I have always put vegetables up and laid in supplies for the winter.  It may be really important this year to be prepared because of our condition and the threats of flu.  I plan to stay on the farm as much as I can stand it and be exposed to illness at a minimum.
Mom and I visited the garden today for the last of the peppers, tomatoes and watermelons.  Tomorrow we will harvest some sweet potatoes and regular potatoes.  This activity really makes my mom feel good.  She lived through the depression in a family of twelve and the present economy scares her terribly.  The more she sees me putting up the better she feels.  Nothing must go to waste because throwing away is not in her being.  It's funny how she can remember that time so well and yet her daily tasks are so frustrating.  We co-hab in a split level from the sixties and if she needs something upstairs, by the time she gets there she has forgotten what she wanted.  God bless her she tries and works entirely too hard for someone her age.  I see the fear in her eyes at what is going on around her and it makes me so sad.  We passed our doctor of thirty years the other day at the hospital.  It was me with Parkinson's and my mom with Alzheimers and my eight year old granddaughter.  As he passed he started laughing.  I looked at him and my reply was, "What?"  He answered,  "It's hard to tell who is taking care of who."  Some days I wonder the same thing.  I know we are just beginning on the journey through the real changes.  She has always had someone to take care of her.  First her older brothers and then my dad and now me. She does not understand what is wrong with me and why I am so tired all the time and even if I explained whe wouldn't understand.  I am becoming the mother and she the child except I cannot walk.....Oh, well thank God we are farmers because there is always something for her to watch or piddle with out here and life goes on regardless of Pokie

Tuesday, September 22, 2009

What Is Going On?
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Just when I needed to be picked up and refurbished, along comes this awesome summer. Nothing like this have I ever seen in Illinois but I am loving it to the last minute. Some of my favorite things are really simple and one of them is feeling the breeze and watching the curtains billow in the wind through an open window, absence of heat and humidity, sunshine, fireworks and lunar eclipses. All of these I have experienced this summer and loved it. How great it must be to be in the new stadium watching the Cardinals going all the way. I am pretty home bound now but the idea and dream are almost as good as the real thing.With all the rain and the size of the weeds in the country, possibly one would think there was no beauty to be found in an overground yard but they are wrong. One particular patch of weeds in my yard are at least twelve feet tall, much to the dismay of my kids until yesterday. As I was eating lunch the Monarch Butterflies came in in groves landing on top of these ugly weeds transforming them to works of art. The power of the mind to find a better place in times of strife is amazing and should be given attention by all. Even New York City has learned the benefits of down time with their second hand lawn chairs in Time Square. People are just taking a chair and watching the world go by on their lunch cool. New York is one of my favorite cities and finally it's great people are learning to slow up, rest and watch the people around you...and it's free...try pokie

Friday, September 18, 2009

What a Game Parkinson's Is......
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This Parkinson's Disease really keeps one on their toes, if you have any hope of keeping up. Everyday is a whole new ball game but there are no time outs to regroup. Every inning is intense and suspense activated. If Joe Parker is the Pitcher, (Parkinson's) he is the best the coach can send in. I pray for a slow ball and he pitches a curve. I pray to just hit the ball and maybe make it to first . He pitches that curve....I strike and I am out for the inning. Now if I am a good player, which I am, I square off my shoulders and walk proudly away. When my next time at bat comes up, I give him my evil face and hope I will scare him. I keep my Parkinson's eye on him and my good eye on God and swing with everything I have. I am not a Albert P. but somewhere in my brain I think I might be if given half a chance and me and the ball connect. I cannot run but I head for first and they fumble the ball somewhere in left field. With my head down and one arm swinging, I am repeating. "I think I can, I think I can." Hell has no fury like a sixty three year old grandmother on a mission and I make it to first base huffing and puffing all the way.

As the inning progresses, two of my team mates are up to bat and strike out and then up steps "Big Albert" to the plate. All eyes are on Albert and I can hardly think for the pounding in my ears. I pray, "Please not the curve ball." but sure enough here it comes BUT Albert goes for it and connects and it's gone! Joe Parker watches as I stumble across home base with Albert in close pursuit yelling, "Go Parkinson's...Go for the Cure." and we win in the ninth Two to Nothing. What a dream, huh? love pokie

Tuesday, September 8, 2009

These are the Days.......
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I have always been an artist in my soul. I always saw the beauty in the smallest things and loved not only sunlight but moonlight, fall and summer. The coldest days and the deepest snow were an amazement to me. I could watch that snow falling at night, glistening like diamonds and almost be in a trance. I once watched an eclipse with all my friends on PLM as it traveled from the East Coast to the West Coast and we posted on the forum all night like kids at play. I've walked in the rain and made snow angels in the snow and now God has chosen me to be blessed with renewed friendships from forty five years ago. Out of nowhere friends have been contacting me from my early years. Next door neighbors, girlfriends from high school and many more people I never expected to ever see or hear from again. God has given me another chance to make it ALL right and let them know how important they always were to me. They will never be taken for granted again. In the past week I have made friends with people I never expected to meet and was given the chance to stand up for my passions and speak my piece. It seems I was taken to the bottom of the bucket in the last six months so I could appreciate now even more.

My favorite poet Helen Lowrie Marshall once wrote in "These Are The Days"......
These are the days.....these autumn days.
When memories haunt us most;
When our Yesterday's Self goes wandering
Like a restless little ghost
Down long forgotten pathways
Of things that use to be,
Vainly trying to fasten leaves
Back on a blaze blown tree.

But oh, these two are golden days,
With beauty unsurpassed...
Days when our life brings forth its yield
Of riches from the past;
Days when the golden wealth of joys
And tears that we have sown
Has reached its ripe fruition....
To strength and beauty sewn.

These are the days...the harvest days
When life is rich and whole...
The spirits golden bounty days
Fulfillment of the soul.

There is one thing I must say............I learned of a dear friends change of plans in life and I pray it's for the better. If I never see her again I would like for her to know she will be greatly missed but her smile and huge heart will never be forgotten and I wish her all the success and happiness that life can bring her because she is one of a kind "Missy I will always love you like my own".....Pokie

Wednesday, August 26, 2009

Senator Kennedy
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I awoke this morning to the news I had once again lost a dear friend.....a friend I had never met. Not many weeks ago his sister and now him passed leaving such legacies for us all to follow. If I were to make a list of the ways he has affected my life it would be endless. He made mistakes in life but was not afraid to come back and show how much he had learned.....He was human and I will miss his true grit in face of loss and that New England humor that brought the light back to a dark day. Heaven must be an interesting place today as all the Kennedy's that have passed join together to compare notes. I'll miss you one and pokie

Another Penny Showed Up....
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People who really know me, know what a huge part pennies have played in my life since January of 1996. That was where most of my medical story begins with two grandmal seizures. They tell me I died twice that day and by the grace of God am still living. The night before I had a dream about a shinny new penny....a very long and detailed dream that I remember in great detail to this day. Seven days later, when I was showering to leave the hospital a shinny new penny appeared in the shower stall between my feet and at every major event or crossroad in my life I have found a penny. They are not always new and sometimes are very tattered. I always pick them up and thank God for remembering me. Yesterday I was seeing a Movement Disorder Specialist for the first time and went to pull out my medical cards and out falls a penny from my cards. After the events of the last three months, I considered this Gods way of letting me know I was on the right track once again and to carry on. I never pass a penny by even though sometimes it is all I can do to bend down and pick it up.....the lowliest of chance making such a difference in someones life.

Friday, August 21, 2009

Where Is Time Going?
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Setting

I cannot believe it is now mid August. Four more months and Christmas will be here...and WINTER. The word winter strikes the fear of God in most people who have Parkinson's. Using me as an example, I can only tell you that cold weather and further isolation are not my thing. This summer has not been like most. Cooler than usual and very wet in our part of the country. This would be bad enough but my friends seem to be having an exceptionally bad time with life right now. One is fighting Lymes and is having more bad days than good. One has spent the summer fighting varicose veins and wonders if she's winning and it goes on and on. My own health has been really scary, to say the least and so this morning I sat a new goal and decided to blog my heart out. When I opened my St. Louis blog, the question was,"What is the best Christmas present you ever received?" PLEASE....I realize I am old by some standards (63) and slow by some standards(Pokie with Parkinson's) but am I missing something here? We have not had Halloween or Thanksgiving and we are wondering about best Christmas. I guess maybe thinking about it is not bad but something here sends up red flags in me. How fast do we have to travel in the life? Everyone around me seems to be going at Warp speed.....Is it just me or as they zoom past, do they have an ability that I no longer have? Can they get Everything done and still enjoy life, or are they just going through the motions? Could I just be too sensitive at this stage and looking for faults? As I am passed by in the slow lane, I can only say this, "I like the slow life in the slow lane." Though my life gets slower and slower, as it will.....the colors seem brighter and the emotions stronger. I heard someone mention yesterday that when once watching people die in a plane crash he saw their Ora's traveling toward heaven and some were brighter than others. He decided then to spend his remaining life making his Ora brighter. ME TOO! Maybe I will just pray for the present of a brighter Ora this Christmas and the time to make it the brightest ever,,,,,,,,love pokie

Wednesday, August 12, 2009

Wishing on a Star
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

Do you ever get too old to wish on stars? Possibly so....Maybe when you get older not so many stars fall out of the sky for you to wish on because your time is running out for them to come true. I listened to the St.Louis news last night and believed them when they said last night was going to be the biggest of meteor nights from12 to 5 am and so as only a kid at heart would, I fixed my peanut butter sandwich on wheat bread with a small scoop of jelly and filled my thermos with cold milk and grabbed a blanket. It was three am and I was in the car looking for meteors, or wish able stars to me. It's a wonder the Bogey man did not get me, sitting on a deserted country road in the middle of nowhere waiting for this explosion of meteors to grace my view. Well I guess two is better than none and I cannot tell what my wish was because you know it will not come true if you tell. I can tell you it had something to do with a cure for a foxy disease that seems to be playing with me.I sat down there in the dark and ate my sandwich an milk and was able , by the grace of God to find the big dipper and little dipper. I thought this was a remarkable feat considering how long it had been since I had searched them out. As I laid there on my car hood, quite content, I realized just how funny it would have been if someone had been driving home from work and come up on me. It would probably been the determining factor to me being committed to a home. I pondered this thought along with the beauty of the night and the masterpiece God had made for me and decided I would be satisfied with two stars. Why should I get greedy in my old age? One would have really been enough and then one would have to decide whether I still have the patience to wait for my wish to come true. Well as I thought all of this over, I decided the old recliner would feel much better on my back and headed home. Another night another lesson learned.....don't be greedy just take the star you pokie

Saturday, August 8, 2009

Following Old Paths
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A long lost feeling crept into my being today, one that I have not felt for over a year. I went to the garden to pick a few tomatoes and felt that old "farmers rush" for the land. I may have been running from this feeling.....silly me. A farmer I am through and through. Many a good hour has turned into a day tilling a garden and making sure absolutely no weed was left hiding under that special tomato plant I had ordered from so far away. Every row was straight and marked and as volunteer plants appeared, I carefully marked and moved them in new rows. My garden was a show place and I knew it. I had bird baths and windchimes and whirlygigs. I even moved the grass around it and had chairs under the old apple tree so one could sit and survey the surroundings. For two years now I have refused to think about these feelings because I knew I could not do the physical work required for perfection, but did it need to be perfect and did it need to be huge? Would just a simple raised bed in the sunshine had sufficed?
When I left for the birth of my last grandson my kids hauled my goats away.....Sadie and her two kids, Yopn and PD. I had raised Sadie from six weeks old. At age seven she blessed me with twins. She never missed a day of bringing them to the back door to show them off and then they were gone.
My children meant well. The billy goat had broken my leg in the winter out of jealousy and ended up as sausage. Yet, some things that are your life need to be sacred and safe from harm. Today as I picked those tomatoes I missed the smell of the earth and joking with the goats. I missed the feeling of peace in the open spaces. It will no longer be ok for me to take vitamins because I am not in the sunshine, because I will be outside hobbled or not. What fits into the children's schedule may not be good in my schedule. I realize this makes me crazy and hard to handle in their terms, but if they can remember back I have always been a loner. I have worked like a man most of my life...not because I wanted to but because I had to and what has it gotten me? Arthritis and pain but when I was working I was satisfied and healthy and God willing the South will rise again. If it is nothing but a walk to the garden or a morning stroll around the lake I am getting back out where God had me in the first place. God has been right there waiting for me, yet the recliner seemed easier and soon the day was gone.....the devel was in the recliner and fell for it. So all bets are off and I am going back to the old me......slower and older and much more febble but pokie

Monday, July 27, 2009

Never Give Up......
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings.

Well here I am and though I may consolidate all my writings into one site , I am here now and that is all that is important. I have taken time to visit with Friends and watch the Cardinal Baseball Game, read several books and sleep way too much. I needed to rest for one thing but most of all I needed to be sure where my PASSION is and how to pursue it. My passion is writing and in the past three years I have wrote stacks of sometimes meaningless and sometimes meaningful pieces. I turned articles out faithfully every night in three locations and loved it. Friends have advised me that this is overkill and I should cut back or put all the articles in one place. This is hard to do because "Coffee With Pokie" has always been for fun and"Today With Pokie" has been from my heart, where "Pokie Journey" always seemed more commercial. Blending may be hard and maybe I won't but changes are in the air for all the things I have going on right now. I can say I will be more careful with my health this time or my family will not let me continue and that would be devastating to me....Bear with me in my rebirth in the coming months and let me know what you pokie

Friday, July 17, 2009

Scared Me To Death....
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

I have so much I want to say and no way can I get it all out. In the past two months I have been lead to believe I might have had a heart attack and another was just around the corner, I was a diabetic, and probably had cervical cancer. All of this false hood resulted in multiple pre-op tests and one gynecologist said he would not touch me with a ten foot pole.....and I should only have surgery in a center of excellence with a trauma room. Now two months later and four specialists later and four two hour all day trips to Springfield, Illinois and I am now told my heart is fine with blood pressure of 120/70. Yes I am overweight and 63{old} but so far no cancer and for sure no D/C which they were" preoping "me for in the first place.

Could a couple of small town doctors saw a good set of insurances(medicare and Cigna) and decided to put the worst on the results and see if anyone bought it? Check these out
one chest Xray
one lateral xray
one MRI lower lumbar
blood full blood work
one sonogram external
one sonogram internal
one set of bending Xrays
3 pelvic exams
and these specialists, spinal surgeon, 3 gynecologists, heart surgeon, general practitioner and a movement disorder specialist.

I went to the last gynecologist Monday with two sacks of med one a gallon ziploc with meds I use to take and a pint ziploc with what I take now after two months of weening myself of of all my PD meds.....He actually is the second doctor to applaud me for doing this ...I WAS EXTREMELY OVER MEDICATED and exhausted.....

This has been a wild two months and though it is not over almost is and I shudder to think I could have had a D/C for nothing......I would truthfully say the system let me pokie too

Today With PokieToo and Parkinson's and Acute RA Disease