California Journal

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The Mission San Jose

Karen and I were coming back from her speech therapy session...when out o the blue she suggested going to the mission where she had taken her first communion. Understanding as you must that Karen is a novice driver on her own. she promptly exited the freeway and there we were right were we needed to be...Fremont, California. The whole town seemed to be taking a nap and everything was at peace in God's world. we pulled into the parking lot and the school children all dressed in the blue and black uniforms scurried in a circle while playing at recess and the air was filled with laughter and happiness. Huge palm trees and century plants were everywhere and in the middle of all this was a mission, on of the oldest in California. I was in awe of the simplicity yet greatness of the style. It was totally white and clean with huge hand carved oak doors. As soon as you entered those huge doors, you were embraced by cool, clean air. Memories of Indians, and deity were everywhere. Hand made tapestry and stoneware; wool monk's robes and blankets; hand crafted ceremonial robes in the very tiniest of stitches made with yarn dyed in every color the rainbow could offer. Karen and I wandered around just in a trance. We were in the presence of artifacts and remains of a civilization over 200 years old and all the events which helped to create the California of today. After being founded in 1797, the grounds have survived earthquake and fire to flourish to the church it is today. It was truly sacred ground....

We moved on to the chapel and Karen noted no pictures could be taken there. I was sad about this because I wanted so to remember every detail. There was no need to be worried because every small and large detail continues to dance through my brain with such extreme accuracy. As we entered I was immediately drawn to the statue of the Patron Saint on the right hand wall. He was a small framed little guy with a cane and a red coat on. I reached up and touched his foot and rubbed it. A feeling of sadness came over me as I stood there and cried. Instead of feeling he was telling me some very urgent message, I felt compelled to look a him and assure him it would be alright. 'Everything will be alright.' I have never been through anything like this in my life and have absolutely no answer for it except it goes on. I called Karen over and ask her to look at his face. Did she feel or hear anything. she said, "No, but Pokie the message is for you not me." I must have stood there five or ten minutes just slowly rubbing his foot and looking into his eyes.

I turned to hug Karen and leave but once more drawn to an open Bible on a stand by the alter. I walked near it and started to read out loud the selection. The more I read the more upset I became but continued to read and sob..It was the story of the GOOD SAMARITAN and I was reading it in front of God with absolutely no control whatsoever. I turned to Karen and ask who the Patron Saint was and she answered, "Maybe Abraham, " and my answer was, "No, don't tell me Abraham." we touched the holy water and walked to the back of the church to an alter that had small bones from the saints embedded in the framework. I ran my fingers over each bone and remarked to Karen, "I think I could go quietly crazy in here." and we left.

That evening life went on as normal and Karen got on the net and researched the Patron Saints. This Patron Saint was St. Joseph, Patron Saint of the family. How fitting that he and I should become so close while I was adding such special members to my new family....pokie

My California Journal

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The above pictures are the view from my hotel room in Boulder, Colorado and the view from my brothers deck outside Loveland, Colorado. Oh those beautiful Colorado Rockies....

October 3, 2008 continued...

I politely paid cash for my room and went off just chattering away to my bell boy about grandmothers traveling by themselves and just how confused could they get...Let me tell you we were about to find out. Because I pad cash, I was in a glitch on the computer which threw out my phone service. As the day went on I could not call out and no one could get in touch with me. By five PM I was beside myself just setting at the desk praying someone would figure out where I was.

Then the most wonderful thing happened. There was a knock at the door and i was saved. Marian had found me and the bell hop was there to put her phone calls through. My head was splitting and my eyes were burning and i looked ugly in the mirror. I should take more time to look in the mirror but then probably would never look again. Where and when did the beauty of youth run away and hide....never to be seen again. So???

Ok, that's a little better. I fixed my hair and washed my face and reassessed the fact that I surely must have had a stroke sometime along the way and no one caught it or maybe this is a wilder disease than I already know I have, who knows anymore? By now it is 1AM Friday morning and as I set here looking out a the Colorado Rockies and the airport lights in the distance, I am once again reminded that my time is very limited, my experiences are many, and the pains I carry in my heart are very large. I can only say I have loved deeply and been hurt just as deeply and all is just fine now and for ever.

My Californina Journal

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October 3, 2008

At one AM I climbed into old Betsy, my much too banged up and abused Bonneville and headed for St. Louis Airport and my flight for Denver. By 3 AM I was driving around trying to figure out where to park. The Boeing Parking lot came up twice before I figured out how to get back on the main highway and get to extended parking. Once there and parked, the shuttle headed me for the terminal and Southwest Boarding. In an effort to be early, I was really early...my plane left at 7:30. Well that's me always trying to think ahead and being way too ahead. the baggage check didn't even open until 4:30 AM and so here I sat trying to look cool and collected when I was anything but with security cruising back and forth and the loud speaker continually saying report all suspicious or nervous persons immediately. I called my daughter at 6:30 to let her know I had cleared security and was promptly bumped into which caused me to drop my cell phone which caused me to drop my cell phone which fragmented into four rather unsightly pieces never to utter a word again. Ahha but they have phone cards and I thought I was fixed....WRONG!!!

When 7:30 roiled around I was more than ready to board the plane and get the best seat next to the window I could find. I was not prepared for what God was about to unfold in front of me. For the next two or more hours i was totally mesmerized by the view. There was not a cloud in the sky and every color and square of earth flowed perfectly into the next shape and hue. How could I have ever thought of making a quilt when perfection was lying before me? I could not had a more beautiful flight and beginning to a trip to a new life and the awakening o f a new soul.........

This is the day the stock market was in free fall and the buy out bill had not been signed and I was on the road..............., not knowing what confusion this would cause for me at every turn. the devil himself could not have laid a better plan to try and stop me. My first stop upon getting to Denver was to take a shuttle to get a car....WRONG!!! There must have been fifteen people lined up at the counter yelling they had to be here and they had to be there and how dare they deny them a car. What $250 would have got before now took a straight $500 and no if's and's or but's about it. Which sent me straight back to the terminal and headed for my hotel for plan #2. I board the shuttle and am set off at my hotel....WRONG...Wrong hotel , my hotel was in Boulder, Colorado instead of Denver , Colorado. I had to prove my confirmation for stay and they paid for me a taxi cab to the right hotel so at 1:19 PM I was assigned room 911 at the Westminster Hotel in Boulder, Colorado.....that's right room 911

Final days before California

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I ran around yesterday trying to be so organized and finally realized much too late in the day that organized is not something you just wake up and have. Today is Tuesday and on Friday I fly to Colorado for the Davis Phinney "Victory Summit" and meet up with Nicole(Browncat) for the day. After the conference ends Saturday, I will get back on the plane and go to California to connect with Bnana and Ukelady for three days and then head back to Denver to spend time with my brother. I have planned this trip for months and cannot seem to get in my head that this is the last week......I am really going to go. I'm going to become a Calfornia Girl. I would like to add this in for Karen ,,,,I found four pennies at separate times yesterday and so I know God was very much with me all day...

Yesterday was also another huge milestone. the first support group for Fayette County opened it's door at the hospital yesterday with me at the pilots seat. This is a passion of mine for a year. I have collected boxes of tapes and books and free stuff to give away and loan to the group and the meeting went very well......thank you again for all that contributed to my success and the counties. Quite often in this area, we see people who are struggling with PD yet have never been diagnosed. As miracles will happen though, the first person in the door was a caregiver for a PD plus patient, diagnosed for three years and in serious progression. I will be able to help her so much with the huge amount of reading material I have and she in return will be able to help me through observation of his progression. By the minute lately, it amazes me at how intricately God intertwines our lives and in doing so enables us to help each other survive the struggles and share the burdens that befall us. My belief is this is the true meaning to Christ......how we interact with our fellow man and lessen his daily burdens so he may once again lift his head and smile....

I once again say....I look back on the last year with amazement. The places my friends and I have traveled and the peoples lives we have impacted is beyond belief. Why God has entrusted me with this huge responsibility, I will never know but everyday I strive to make him proud.

Once again, this morning I turn to H.L. Marshall and her poetry:

LOOK UP AND LIVE

This business of living was meant to be more
than plodding along each day
With head bowed down and eyes on the ground
While Time ticks the hours away.

God made this world a delightful place
With beauty everywhere...
The grass, the flowers the trees, the sky,
The tang of clean, fresh air....

A world to be lived in, laughed in, loved,
To be met with joy and zest,
A world with a challenge for each of us
To give it our very best.

This business of living was never meant
As a treadmill sort of thing;
There are rivers to cross, and mountains to climb,
And glorious song to sing!

Helen Lourie Marshall

This is the last time for this offer

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"The future is where we will spend the rest of our lives, and it is our choice whether we look forward with confidence and courage or walk blindfolded toward some imaginary doom." I read this and I knew this was something that was going to shape my day. With all the things that are going on around me at this very instant I really do not have time to be down or feel self pity. Things are falling apart faster than I can do maintenance on them. Propane was once, not to long ago, 79 cents a gallon and now it's $2.29. Of course that is if your lucky. All the while knowing you must multiple that times 500 because you have a 500 gallon tank and winter is coming in very rapidly. You downsize and stockpile and regroup the picture is just a little scary. And then all of a sudden you hear this voice in your head saying," just go ahead and do it." 'Do what?' you say. And the voice gives you some off the wall answer. At first you dismiss it but all the while you know you will finally face the fact that another adventure has been planned for you. With this disease, I would like to just curl up in bed and stay there. This would be totally out of character for me and I am sure no one would let me get by with it, but it doesn't keep me from wanting to just pull those covers up over my head and sleep right through every responsibility I have.......for a day or maybe a week. Instead I spring out of bed and get my suit case and off I go. To points unknown.

My future was laid out today in no uncertain terms. I had a meeting with a Orthopedic Surgeon who told me I did not have rotor cup problems but did have extreme arthritis in both shoulders and particularly in my left shoulder. It seems the only thing going for that is take the pain as long as you can and when that no longer works have the shoulder replaced. I already have two new knees and could use two new hips. If I get two new shoulders, I should be good until I'm one hundred and twenty with a a twenty year warranty on each set.......I'll never make it!

This evening I attended a town hall meeting at the hospital on "What is Wrong with our Healthcare?" It seems President Elect Obama would like our input and I pray he does because it could sure use some fixing. Today 25 people in a very small midwest town talked for the first time on the problems and what could be done to fix it if the government wanted to. The big thing that kept coming up was insurance and the monopoly they run and how badly it is hurting the American people. I took notes and did a lot of talking and in the next months i will be writing volumes on this because March i am going to Congress to lobby for PAN........love pokie

An Ounce Or Two Of Heaven

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I should like to buy a perfume,
Nothing fancy, something plain
I had in mind a scent
Of city streets washed clean with rain;
Or, possibly, the fragrance
Of a baby freshly tubbed;
Or the spicy heady odor
Of green mint leaves crushed and rubbed;
Do you have that grand aroma
Found in fresh baked home-made bread?
Or the luxury laden fragrance
Of clean sheets upon the bed?
How about the smell of bacon,
Crisp and brown and sizzling good?
Or the dreamy, smoky odor
Of a fire in the wood?
Perhaps you have the crispy smell of Autumn in the air,
Or that more seductive fragrance
Of a spring day, soft and rare..
I should like to buy a perfume, Any simple scent will do....
Just an ounce or two of Heaven
Made up in an earthly brew.

H.L. Marshall


It's 7:00 Am on a rainy Sunday morning in the beginning of the Fall Season for Illinois. I slept really well last night though I did that "Parkie" shuffle from bed , to couch, to recliner and then finally to my computer chair. I have fixed a coffee cake for mom and I for breakfast and a fresh pot of coffee is brewing and the smells are everywhere in the house. It amazes me that God built such a amazing house for us to dwell in for our lifetime. Smells are sometimes missing from the life of someone with Parkinson's Disease and then often they are replaced by episodes of foul odors that invade the brain and they go away just as fast as they came but this morning I am celebrating the life that My Maker presented to me in grand style. I pray for those who have nothing of what I have this morning. I hope they find shelter from the storm and have a friend by their side to help them every step of the way. As I watched the Hurricane Ike roar ashore in Texas yesterday, I knew there would be not one person left without respect for the world around us. Though we continue to build and collect and pull belongings close around us, sometimes it is only the very basics that are left behind for us to hold on to; a smell, a smile, the colors in a sunrise, the chirp of a bird on a distant branch.

This morning let's try this. Take a deep breath and as someone told Bnanana one day, "Breath in the breath of God and breath out all the bad things inside" Let's try this real slow and as we are doing this, lets close our eyes and smell all the roses near and far and pray for those who have lost everything this morning and pray they find the strength to carry on. Amen

Barbara in Atlanta

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While in Atlanta for the Young Onset Parkinson's Convention, I met a little lady called Barbara. She had this radiating smile that caught your eye from across the room and pulled you to her side. She had a modest little table set up and was selling her book. It only has fifty three pages and is a tiny little thing by size, but by content it is so personal and touching. it speaks volumes to all I have given it to. Books are my very favorite gift to give. And usually I will give a book that I have used often and wrote in because my books are so personal to me that I feel I am truly giving a piece of my heart and this book means so much to me. STRUGGLES WITH LIFE: FROM THE BEGINNING TO THE END WITH GOD INTERTWINED......by Barbara Hogg

Barbara was selling her book but if someone could not pay or shied away she just gave it to them. She was only asking six dollars and was still giving it away....I got a book and had her sign it and as with every book that was given me in Atlanta, I read it and wrote about it and it's author when I got back. Well Barbara I have neither forgotten you or our last night together in the hospitality room when most all of the conference attendees had left for home and there were about eight of us having a round robin discussion on bloggs, writing , Patientslikeme.com and Parkinson's and anything else that crossed our minds. All of a sudden Barbara says, "Pokie, this is what I do to relax at night." and she started to sing Amazing Grace and do a form of signing as she sang. It was so beautiful and you could see and feel Barbara's faith as she shut her eyes and drifted away along with her audience of eight who were totally captive to her every move.

In this room was a female ex Harley rider (or maybe she still rides) . Me, still finding out who I am. Karen Painter, the designer and maker of the beautiful tulip pen. Another whole story in itself, because I loved her heart.....I would often glance over at her and her eyes would be filled with tears at what was going on. A drug salesman from the Midwest, fascinating guy. A couple that I know very little about except she spoke with a very heavy accent , maybe Swedish and she painted tiny pictures of nature and the out of doors on little framed abolone shells. They were so fragile and delicate just like her yet they were so strong in their presentation. Her husband had Parkinson's and they sat quietly holding each others hand the whole evening. And last of all their was a young newspaper guy from Ft Lauderdale, Florida who didn't like bloggers. This odd group spent maybe six hours really hashing things out before declaring total exhaustion knowing we would probably never meet again......but this I will say:

If you get a chance to ever talk to any of these fascinating people please do.....they will make your day and enrich your life more than I can possibly tell you. Thanks guys for the experience and good luck , always.......love pokie

Can we be next Lord?

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I have had two nights of wandering from place to place. Something inside me keeps screaming, "Use me". Is this God? If so I'm ready. Tell me what you want me to do. I'm watching the Cancer special and am so impressed by the magnitude of the message and how beautifully it was delivered. I could take the names used and substitute friends of mine with parkinson's and related diseases and hurt just as if they had cancer. I cried for those friends and myself just as if we had cancer. Do we with Nuerological disorders have our day coming......Can we have an hour on Prime Time TV? Why must all of this be separate to be cured? God made us equal. Can we not be cured equally?

As you can tell this past hour upset me greatly, just as many things seem to these days. As I said in the beginning l am wondering where to go for the best results. If someone reads this and has a vested interest in Parkinson's and it's cure or help for it's sufferers, please get in touch with me and I will do all I can. We have to unite.....this has to stop....now.

I must say this, I have a friend who lost a son to a horrible cancer......I cried for you and our loss tonight. My granddaughter lost one of her favorite teachers to cancer this year. One of my doctors from years ago lost 2 of his 3 sons to brain cancer. I lost someone I had loved for years to lung cancer last November. Tonight I cried for all of you and weither I knew you too well or knew you not at all, I grieved the loss of you from this earth and I felt the pain of people left behind....

My thought is this we are responsible for our time here on earth and each makes his own mark on that world only if he's here an hour or a year or ten. The ones's left behind must continue the forward motion........"Use me Lord" Pokie

Friday in the Country......

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Here it is Friday and a week has went by since my mothers adventures into the world of heart attacks. Bless her heart she has been a dream to take care of. I catch her doing little things that show me she is still very much the head mom in this household and that's is perfectly ok with me. My granddaughter Katie called yesterday to let me know that she was coming this weekend to help me take care of Mau Mau Neil so we will probably have a tea party and play house ....something grown-ups forget and young ones are all to eager to have us remember.

The first night mom seemed to be fighting with something in her dreams. The expressions on her face were horrifying.....for a while she would be mad and then the looks were truly mean in character. I ask her and she remembers nothing or no one. What a blessing God has bestoyed on her at this point in time. She seems to have let the past go and is enjoying the present and life seems to be good.

Yesterday I ventured off to St.Louis to my Rheumatologist in hurricane Gustov. Needless to say my blood pressure was up by the time I finally made it to the office. I can't say I have ever drove in anything so terrible in my life. Fog and trucks and over seven inches of rain, teamed with my poor vision and nerves made for a very long trip. Usually I can get there in two hours , it took four......Now I don't go back till December when we will be dealing with snow. The meds were all increased for one condition or another.....mainly the swelling and knotting of my ankles.

So today I plan to answer my emails and watch tv and just generally relax.....mom and I might start a puzzle today and take a walk.....thank you Lord.....life is good Pokie

"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 mind......love ya pokie

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 Patientslikeme.com.

POKIE

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 couple.......love pokie

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MY FRIEND BNANA......

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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 Patientslikeme.com. 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 will..............love pokie

Thank-you Steve Sandler for "My Uncle Rob"

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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 awe......love 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 thankful.......love POKIE

OFF TO ATLANTA

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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......

My Heart is Good.....

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

I should never swear but today I just must. If I live through this summer with my two seven year old grandchildren, I will know it was divine intervention. I live in a split level home and because I am in the process of moving my mother down stairs I have some of my things upstairs and some downstairs a grandkids delight. Anytime they can catch me on one floor they head for the other floor. If I'm in the front yard they are in the back yard....."Get how this is going?"....well today is the best yet and I must say grandkids one ,two, three......POKIE NONE.

I have a 20gal fish aquarium downstairs. I have had it for a long time and it has always been off limits to the kids because they cannot seem to keep their hands out of it. Miscellaneous weird things are found submerged or floating in this tank after they depart the farm. Usually two or three days later because me and stairs just don't get along and I'll put off forever going down in the basement....Today was my day and I decided to add water and feed and try to do general upkeep. I opened the lid and was instantly attacked by a small tree frog my "Little Angels" had left behind for their Nee Nay.....Ok a frog is a frog but this one was spastic....He jumped out of the tank on to the side of my face......which threw my poor brain into high gear and five steps backward this ol lady with multiple problems went screaming ,"Oh, Yuckkkkkkkk!!!!

The sad part is as funny as it must have been to witness, I was home all by myself. I removed my friends little sustion cup (hands?) from my face and out the door he went. I have two days until my dears return and my brain is going wild trying to figure how to get them back.....POKIE

The Midnight Hour

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Blogs are such an I thing. No matter where you try to head, somehow it always returns to you. They are a place to muddle over the events of the day in an attempt to figure out if you did anything at all right or just really didn't even get close. The midnight hour is my favorite for walks down the isle of self discovery. I never figured out why until tonight. I always assumed that writing came easier from one to five in the morning because of the quiet and lack of distraction, and it may to a certain extent. But now I have decided it's because no one is watching and I have to answer to no one or try to fit into what ever present
mold I'm suppose to be in. I can type for hours and no one sticks there head in the door and says, "Shouldn't you be........" or "What are you going to do today?" In the midnight hour the words just flow from some tapped spring that replenishes everything within me. All the things I have ever wanted to do seem possible and the words, "You shouldn't or can't" never pop up. There ae so many molds we spend our lives trying to fit into and why I will never know. God made me as I am and as long as I strive to maintain and educate that person it seems I am on the right tract.

It is so nice at night to hear the rain gently falling outside my bedroom window. One drop at a time the water skirts down the window pane.....washing away the dust of the day and leaving a small mark on the window and the world as it passes. It will never come back yet while it was here it had a job and did it. In so short of time it cleaned up a very tiny spot in the world. It made a cleaner and brighter spot for one of God's creatures and all was good.

In this being my blog, and this being me in the analizing seat and me being analized. I have decided that the midnight hour is God's gift to me for a job at least tried in the previous day.......thank you pokie

The Prodigal Returns

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

Wednesday, for quite some time, has been my go to town day. I usually havew a list of chores to attend to and groceries to be bought for the coming week. Usually I am gone most of the day but because of the high humidity and temperatures in Illinois. Katie and I opted to make it a quick trip to the hospital for blood work and out to eat. Then off to the grocery store for "grandkid snacks", through Mickey D's and back home. As I was rounding up the wheelbarrow to take the supplies in I heard a very familar sound........

Setting on the steps to the chicken house was my faithful friend Quack. I quess she was not as happy about the lake as I thought. As I looked up she started quacking and carrying on so I opened the door and in she went......happy to be in the pen. She was safe at home. I fed her and noticed the old rooster was really happy she was home too. Several times today I went out to check on her and each time she greeted me as she has done for years.

I couldn't help but see a lot of similarities between Quacks experience with life and friendsips and my daily struggles. Each of us has to experiment with life to find our true home. A place where we can just be us and relax....I am fortunate to have several places where I can hear the inner workings of my mind and heart over the roar of civilization. My responsiblities to my animals are the same as with my friends always be there to open the door and let them in......Love pokie

Ducks and Memories.....

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Today was a beautiful day in Illinois. Though hot and humid, the sunshine was clean and just made you feel good all over. I have had a duck for almost two years now. Her name is Quack and she has been sharing the chicken house with the hens and roosters until yesterday, when I decided it was time for her to rejoin the duck world and maybe mate and fly south this winter.....Maybe not...I really hope she stays and has babies on our new lake........


Some friends of mine decided to play a trick on me a couple of years ago and ventured over during the night and added these two ducks to my chicken assortment and then stashed themselves in the barn until I came out to feed. I never wear my glasses out in the morning and so you can imagine my surprise when what I thought was my prize brown rooster looked straight at me and quacked.....they seemed to hold their own all along and layed the most beautiful huge eggs right in with the hens.....One came up missing as often happens on a farm and Quack hung in there being quiet the survivor.


Recently my farming is downsizing bigtime and Quack just looked awfully lonily in that pen with no hens and a rooster that decided she looked pretty good after his girls were gone......so yesterday I ventured out for the last time and Quack and I decided to take her down to our new lake and see what she thought....She liked it needless to say and this morning she was happily the owner of her domain and seemed quite happy as she gave me her usual Quack when she saw me.


As I sat there this morning, meditating on the changes in my life and surroundings, my old friend glided by in perfect harmony with all around her showing me that by letting her go I had brought a new meaning to our relationshp. She was now free to love me or not on her own terms. I was no longer in control. Though this made me sad and I'll miss her greeting every time I come out the back door, she is where she was meant to be for what ever time she has. I can not keep her from harm, I can only cherish my memories she gave me in those two years.


Everything is subject to change and to live we must change with them. I try to bend and sway with the times but it seems to be harder or I am becoming more passionate about things. Bear with me my friends. I am struggling to find my way and continue to be me. I do believe that when the process is done I will still... JUST BE ME..

Which Way Boss........???

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I have often said I make no decisions for myself. My Lord is in total control but lately he has had me on a multitask four ten -hour work days that would make a normal persons head swim. I have many friends battling different stages of Parkinson Disease and as anyone knows now this is a BIG topic of discussion. I stay in touch daily and I live their pains and smiles as they do and we love it I hope that me being there is helping them in some way that a pill cannot. I also pledge alligance to Patientslikeme.com and the war for information on this ever elusive pain in the neck disease.

Some of my responsibilities on the farm are now gone. This sounds sad but I can not feed and clean as I once did with great pride. The troops are slow to rally for a better mowed yard or cleaner house. My families idea is if I would spend less time on the computer, I would have more time for them and the farm. You know they are right but I have no intention of altering my course. Armed with my trusty notebook and pen , I embark on a day with every minute wrote down and believe it or not a timer in my pocket. Parkies have a tendency to ramble and with the best of intentions forget what they or doing......so if I have not finished a task in thirty minutes I move on to something else until later. It seems I sleep in two hour increments and work in thirty minute increments so maybe God is getting cheated a little, but my work is intense when it is on. Staples just loves to see me pull in the driveway with ink cartridges to return for rebate and buying reams of paper instead of packages...and thank you once again Lord for Sticky Tabs for everywhere, front door, frig, mirrors, steering wheel of car and top of laptop. I swear I have no idea what I did when I had all my brain cells. They must have got in each others way......

To all the above you must add my beloved new grandson Ayden who now at three weeks weights in at a whopping 11lbs.2oz and is 22 inches long. It is totally impossible for me to go a week without holding him at which time he snuggles as close as he can get and really gives me a slobbery kiss. He really might be looking for food but I take it as a kiss. Ayden is now making every battle I am fighting worth while. His "Ol Silly Grandma" really loves him.

I am now totally convinced that prior to my diagnoses and even prior to the fall of 2007. my life was boring and slow. Though totally crazy to some, I love where God has brought me and hope he is satisfied with my work because.......... I think I am. love pokie

Hello.......Am I In There?

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

Do you ever wonder if people actually see the real you? Is there a real you? How far does someone dig before they hit your soul? Does cronic illness affect your soul? Does someone ever really change or is that other person always there just waiting to come out. Then with Parkinson's as your brain cells diminish does any of this matter and if so how much does it matter? What gives up in the end, the mind, the body or the soul? Can you live without one of these, if so which one should go first leaving the other two to carry on? These are pretty deep questions but are indeed questions that some "Parkies " deal with everyday BUT should they?...........

I believe I make a concious effort everyday not to address or answer any of these questions. That could be considered living a false life or being Polyanna. Since one of the key factors to this disease is rest and the management of depression, why not just take your remaining days and throw caution to the wind and fly. Leave all the gates open , walk on the grass, laugh in the library. If you don't do it now, when are you going to work it in? I'm beginning to believe that 15% brain cells is not too bad and it gives you a free ride on some really neat roller coasters if you dare.

I'm at a very critical crossroad right now and tomorrow may detour me. I have a doctors appointment to try and find out why I have this swelling going on. It started in my ankles and tops of my feet, and now has made it to my knees. The old term "Tight as a Tick" has nothing on me. My skin cannot expand anymore, so walking is to say the least awkward. Yet I really feel great mentally and my soul has never been better. So I have to ask myself. "Is this the next step God has in store for me?" Am I finally going to learn how to fly from a wheelchair? Or have I yet another illness waiting at the door to come in? Who knows? And really I'm not going to loose any sleep over it either. Many years ago I gave up control. About 1996 would be the year I would pick and ever since no matter what my Lord says, it's ok with me and I never question or ask why.....and you know what? I am happier for it....love POKIE