"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

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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

Miracles.....

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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 patientslikeme.com 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 http://patientslikeme.com . She posted a story  http://.phyorg.com/news176464812.html 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 ......love Pokie

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 Arthritis....it is and I can only say thanks....love 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!"

BUT

I shower and I change and I get all quite ready

and go visit dreamland and stay there a plenty.

BUT

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.

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 CAN.....love Pokie

The Lady Hits the Road

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Almost a year ago today I posted on http://Patientslikeme.com 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 done....love Pokie

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