Sunday, August 31, 2008

"Mau-Mau Neil's" Heart
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It's 10:30 P.M. and for the last two hours I have witnessed the changong of the guard as my mother 's brain slowly shuts down in the world of today and travels to a safer place and time. Though she appears to be sleeping her hands are in a frenzie. She has not a clue where she is or what she's doing. I sit here with a very small light on that I hope will make her journey a dream and not a nightmare.

With grandma's obvious confussion , comes the end of an era. The end of another time when children were safe and families were large and very close. A time when farmers prayed for sons to be born to take over the farm and daughters were taught early to serve.

She appears to be looking for something. I ask her, "Can't you find it?" and her answer is a soft "No" as she turns her head away from me. Eigthy three years of mending and never throwing anything away and now her hands will not stay still. Sometimes she's folding cloths and other things and other times she's petting a rather large animal. She rests a second and off they go again to find another chore that needs to be done. They have put oxygen back on her and she insists that it tickles and needs to come off. She has a heart monitor in the pocket on her night shirt and between it and her nose she is fighting the Russian War and loosing.

Oh, dear Lord hear my prayer,
Grant her peace in these the last of her days.
Shut those eyes and take that evil look away,
Take her to the sunshine to play another day!

11:15 and as she nestles her little stuffed lamb , she appears to be quiet for a while. The story line of a thousand arguments remains written on that German face. Time for fun, games and frivilous things or wasted time here. Work, Work, and work some more until the day is done.. It's 1:20am and in her mind, my mom just made a feah pot of good coffee and then tried to get out of bed to get me some. "It was really good coffee." I'm sure it was.

Someone came in while I napped and stole my mom. The look on the face in front of me I do not know.

But she has will and is by no means fragil and I will be there for her always regardless.......Things are better and the fog is lifting in her head ...We will go home today and give the heart time to heal the ya pokie

Tuesday, August 19, 2008

Sassy, Sassy........Sassy

Twelve o'clock midnight and I could wait no longer to be on the road for Atlanta. Georgia and the Annual Young Onset Parkinson's Conference. I had called Sassy the day before and set the plans in motion to meet her at Crackerbarrel at 6 and eat breakfast together. First off the world is not functioning at this time of the morning so when I arrived in Marion, Illinois no one, but no one was awake but two guys in Steak and Shake who had some horrible coffee brewing that they said they never drank and in reality they were only there to clean. I sat in the parking lot for a while trying to decide whether to call her at this time of the morning or not and then logic flew out the window and I was on the phone to someone I had never met before asking her to come to a strange place in the dark and meet a total stranger. What did she say? She said she'd be right there and in about thirty minutes her and her husband Doc arrived to be greeted by not only me but the clerk who now was convinced I might not be all there. When Sassy hit that door, the place just lit up ......boy what a smile!

Just a note about Sassy. She rights plays for her church and is a clown. Yes she has Parkinson's and suffers from it but a more wonderful person you just could not find and little did I know what a poet she was because yesterday this poem pops up on


We met this lovely lady they call her Pokie Too
She has this infectious laughter
that thrills you through and through.
In a restaurant at the magic hour
of three am one day,
we had dry toast and muddy coffee
then she was on her way.
She said "I'm off too Georgiato meet
some special friends.
We are working toward a cure
and pray it finally ends."
She got in her rented cruiser
fired it up and on her way,
but knew I had to stay.
I had commitments here you see
a family time for me.
I prayed safe passage for her
God keep her close to thee.
She had given us a bear hug
took my picture in that coat,
Said "I'll see you again when traveling."
and that was all she wrote,
Pokie, you are a special lady,
I am sure all would agree,
I feel so very honored that
you took some time for me....

Yes ,Sassy, we will meet again and laugh and prey in thanks for these special moments that have come so late in our lives. Give Doc a hug for me and you guys have fun until the next time you are the cutest pokie
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Friday, August 15, 2008

Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

Aren't you amazed sometimes at the amount of inevitable things that happen in the span of a day? Is it possible that you just blunder on through a day and never notice the hand that is slowly but surely being dealt you? I have heard that there are certain things that happen no matter what we do to prevent them. Death and taxes are right up there for most people, but what about the little things? What about the person you meet that instantly pulls you out of your safe comfort zone and entwines you with friendship, or the words you read on the internet that just seem to haunt you to answer. How about the gestures of kindness that appear from nowhere on a down day to bring sunshine to all of your little corners of darkness. Are these things inevitable in a life time or am I just blessed.

Months ago a little lady from California posted on Quietly she entered the forum but always with a smile though she was obviously in huge amounts of pain. If you were down she was there with the most beautiful graphics that forced those hidden emotions to the surface and you would either smile or cry but instantly feel better and for just that instant forget your own pain. I'd sit at night and look at her picture as I answered her post and wondered how did she got to here at such a young age. Little did she know that in her list of inevitable things to happen in her life time was trauma, almost losing her husband of twenty years in a fall off a two story building and finding out ten years later she had Parkinson's Disease.

As the months moved on, our friendship grew and grew. We noticed that often our pains were similar and when she was having extreme spasms in her legs at 2 or 3 in the morning, she would take the phone down stairs and pace in the bathroom while she talked to me until morning rolled around and the pain had left and in it's spot was left exhaustion. We discovered heat and the ability we had to send the pain somewhere else just long enough to curl up like a baby with our snuggle blankets and pillows and fall asleep thousands of miles apart.

Soon the sweetest guy would come down the steps and ask Karen, "Who's that." and she'd say,"Pokie" and he would call out "Hi, Pokie" as he went out the door. This guy is Al her soulmate of thirty years disabled from his fall but loving Karen more everyday.

Yesterday Karen found out she has MSA not Parkinson's and once again the inevitable was changed. All around her wept with the diagnoses as did I. At 50 to be handed this deck and ask to play it out....I spent the night spreading the word on a personal mission to defeat the pain I felt but as morning came the phone rang and who was there trying to cheer me up but Karen......"Pokie it'll be ok.".......

Karen it WILL be ok . We will fight this together. We will find someone to help us. We will because we pokie

Tuesday, August 12, 2008

Thank-you Steve Sandler for "My Uncle Rob"
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

While in Atlanta, Georgia for the National Young On-Set Parkinson's Convention, I had breakfast with an extra special person named Steve Sandler, who presented me with a fascinating book he had authored. Steve signed my copy and I promised to read it and tell him what I thought. I THOUGHT IT WAS WONDERFUL I have read it four times now which it is only thirty pages but WOW what thirty pages!

I simply cannot wait until the weekend gets here and my grandkids come. We always sit down on Saturday afternoon and try to find something special to do together. This weekend it will be reading Steve's book to them and sharing the beautiful illustrations flowing from the pages. My favorite page is page twenty-one: "This is a cityscape. Uncle Rob says it's not anyplace he's really been, but in his mind he spent a week there last May. He said the food was terrific, but it rained the whole time he was there. I punched him in the arm for saying something so silly."

Steve, I hope if you read this, you show it to Rob and thank him for the lovely paintings. You can feel the special feelings that fill this book with magic and is everywhere.

I, like you and Rob, have Parkinson's Disease and waited until I was 61 to really do what I had a passion for.... writing. I haven't decided if it was the Parkinson's or the knowledge that this is the last years I have and every minute is so important, that pushed me forward into the life I am enjoying at this moment. Whatever the reason , it brought me to you and your book and introduced me to Rob's paintings and for that I am very POKIE

Wednesday, August 6, 2008

Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

As I sit here this morning at 2am, i wonder just how many more things can be going on in my life at one time and where is all of this going? How did I function without PD? I thought I was happy, but I must have been bored...and I must have wasted many hours sleeping because what use to be ten hours of sleep a day now is five if that. I use to hate talking on the phone and now spend hours on there, totally at ease in a situation that was so uncomfortable for me before. Who is this person who has inhabited my body....this alien obsessed with defeating a disease that fewreally care about. No wonder my family stands at bay staring in disbelief....Am I out of control? Maybe crazy? Maybe I am both and abducted alien too..."Beam me up Scotty"

Yesterday I called a mental institution checking on a total unknown to see if he was in need of assistance. Somehow thinking this was my duty only to have him reappear on the site in huge fashion, complaining about sexual problems from his meds. I made two long distance calls out and received three back which pretty well covered the U.S. and spent endless hours on the internet in correspondence of one sort or another.

i have a legless scarecrow sitting in my study laughing at my every move and yelling,''Come on, lets get in the car, I'M READY TO GO.' Where is it this monster wants to go? ATLANTA, GEORGIA for the NATIONAL YOUNG ONSET PARKINSON'S CONVENTION......

Today With PokieToo and Parkinson's and Acute RA Disease