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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

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

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

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