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

President Obama - Your Turn: Join the National Online Discussion on Health Care Reform

Networking For A Cure

HealthDataRights

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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.  http://www.HealthDataRights.org  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 world......love Pokie

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SLEEP

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."

BUT.....

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 cure...love Pokie

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THREE STAGES

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

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

Lymes

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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

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 enjoy......love Pokie

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

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 out...love pokie

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 http://Patientslikeme.com 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?

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 Patienslikeme.com.  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 me...love 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 doing..love 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 Patienslikeme.com 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

I am So Honored.....

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This week I received the thrill of my life.  http://wellsphere.com 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 http://PatientsLikeMe.com, while looking for my email on yahoo.
One night in 2008 I could not sleep and decided to check out http://blogspot.com 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:

HERE'S TO MY PLM FRIEND

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 PatientsLikeMe.com.  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 http://PatientsLikeMe.com..love Pokie

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 Lord.....love Pokie