Saturday, December 13, 2008

Yes, Lord, I am Listening....


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My time given to thought, is very early in the morning when most people would rather be in bed sleeping. There is something so soothing to me about the quiet of the darkness outside. My brain does not multi-task very well. With the slightest distraction my chain of thought is gone....not just for a minute but forever. to concentrate during the day are very few and far between and so my pattern has been to take a nap in the afternoon and try to outlast everyone else in the evening until" peace" and "solitude" come in with a pizza and the brain juices start to flow....
Last night things were just not flowing and that usually means I am just to tired to think. I was spending more time going backward than forward and I somehow hit the trashcan button and my whole blog went down the tubes. Twenty three entries just disappeared into cyberspace. On just an ordinary journal this would be bad but my blog is a following of Patientslikeme.com and the Parkinson's Unity Walk and all patents in between, and this was horrible in BIG LETTERS. I tried for a couple of hours and could not get it back. At four thirty or so i gave up and headed for bed wanting so badly to get in the car and drive to Walmart and buy a cheesecake and eat the whole thing BUT I was fasting for blood work at seven.
The last thing I could do was contact a friend on the site and state my panic in a desperate attempt for consoling. He stated how sorry he was but had no idea what to do. Somehow that made me feel better and I left the house for a day in Effingham having blood work and MRI"S. At four I returned home and turned on the computer to find the option to pull up my old blog from the trash can...I just sat there and stared at the screen in disbelief...God had given me another chance and mentioned in the passing that a little more sleep was needed to work on something so important.
Now I will very carefully proof this writing and as i do the prayers will flow from my brain to heaven. Daily I read this small bible I bought on the way to NYC lat year for the Unity Walk. I just let it fall open and start to read....Today the message was from Romans 10:15. "...and how shall they preach, except that they be sent? How beautiful are the feet of them that preach the Gospel of Peace, and bring Glad Tidings of Good Things! Thank you Lord. I am Listening! Good Night Pokie

Saturday, November 29, 2008

Today I Wish You a Day of Ordinary Miracles

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This morning as I am getting ready for the onslaught of family to the farm for the day, I was remembering days of past holidays and this too will be one to remember for this will be the Holiday I relinquish power of the family. I have always been the core of our family and now it's time to pass that on to the next generation which would be my son and two daughters. I can no longer make the turkey and sometimes two or cook for thirty and still work a full time job from 11 to 7 five days a week. I always did huge amounts of shopping and baking. Several years I baked and gave away ......98 DOZEN OF COOKIES FOR CHRISTMAS. I have always put my Christmas tree up the first of November and taken it down the last day of January and every room had Christmas Decorations including the bathrooms. It's funny how life evolves and changes over the years.....

There have been several times when I thought God just threw something in to make me slow up and pay attention. Illnesses and Deaths usually have that effect on me. Parkinson's has done all of this and more and ye ordinary miracles bless my every day. Somethings come to mind from an email from 2002 (yes that's right) that I saved and here it is....

A fresh pot of coffee yo didn't make yourself.
An unexpected phone call from an old friend.
Green stoplights on your way to shop.
A good sing along song on the radio.
Your keys right were you looked the first time.
I wish you a day of happiness and perfection-little bite size
pieces of perfection that give you the funny feeling that the Lord is
smiling at you, holding you so gently because you are someone special
and rare.
I wish you a day of Peace, Happiness and Joy.
They say it takes a minute to find a special person, an hour to appreciate the, a day to love them, but an entire life to forget them. Donald F. Boice

My life has been so blessed and today while in the act of giving up and passing on, I remember friends and lovers who have passed on, who gave me such pleasure and memories. One in particular I remember today. For some twenty years we loved like no other and then came cancer and last year at this time he was gone. Just as fast as he had smiled at me and I loved him and he loved me.... he was gone. No I'm not bitter and no I'm not sad. Every minute we were together was intense and meaningful. Thank you Lord for the experience.

In all the rush and scurrying around that surrounds life these days I hope as I pass on the holiday ornaments and traditions to the next generation, I hope they receive the ability to feel passionately about another human being or project and have the will to follow that passion through good and bad. I would wish that they can pray and talk to my Lord and recognize his blessing when it is passed on. Take the Time always to feel the passion and ordinary miracles of life......Happy Holidays Always pokie

Sunday, November 16, 2008

Traveling for a Cure

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Several things have happened to me in the past month, things that never would have happened before being diagnosed with Parkinson's Disease. I launched a support group at the Fayette County hospital, in Vandalia, Illinois. It's not just for Parkinson's Disease but caregivers and anyone that would just like to talk and get information about neurological disorders. The first meeting was a month ago tomorrow and so I will venture back with my mind a buzz with places I have been and things I have learned.

One of the great people I met was David Zid from Columbus, Ohio. Oh , now if you ever get the chance to meet this man please go. David graduated from the University of Ohio and is a personal trainer and president of Columbus Health Works and co author of Delay the Disease. He was soon drawn into Parkinson's Disease through a newly diagnosed friend and from there he saves the world. If David didn't do anything but smile he would win the world over but he has devised a very simple no stress exercise program that you can do sitting down or with a chair. His program is Exercise and Parkinson's Disease and his Book is Delay the Disease, and it works on the idea that if muscles are not moved they will freeze and not be able to move. DAVID THINKS BIG. Big movements that start in small ways and over time the movement comes back. When you see his presentation he comes down off the stage and goes through the crowd and you can tell how much he loves what he does. He's not above lying on the floor or giving you a hug or just stopping the show and talking to you. He really cares!

I had met his dad in Atlanta, Georgia at the Young Onset Parkinson's Conference in August and was so surprised to see him again at Indianapolis, Indiana and realized that he was David's father. I was there for the Parkinson's Awareness Assn. of Central Indiana, Inc. attending their symposium and David's dad recognized me first and then it was on....What a wonderful family and the things they are doing for Parkinson's Disease are astronomical...

The next person I met that day was a tiny little gal making a difference....Kristy Follmar Executive Director of Rock Steady Boxing and a certified personal trainer. she began her career as an Indiana Golden gloves Women's Champ(1999, 2000) and first ever Women's Indiana State Champion and NABC Featherweight and Super Featherwight Champion (2002,2003) With this list of credentials, she is the sweetest, most down to earth little gal I have ever met. She takes people in their sixties, seventies and eighties and teaches them to box and love it. She brought with her two examples, a woman in her sixties and a gentleman in his late seventies and you should have seen them hit her glove as she yelled right, left, left right. They were the picture of self confidence and balance. These are two very important things to people with Parkinson's and two things that we usually have very little of.

As luck would have it, when I got to the Davis Phinney Victory Summit in Denver, Colorado, October 4th. Kristy and her personal trainer Bob Schaefer and I had a chance to really talk and exchange ideas on a cure and talk about some people with great idea within the Parkinson's Network, one being my friend Tom and the Loaner Closet for Needed Equipment.

As you can see I have found my passion through being faced with a debilitating disease. My daily trials are counterbalanced with possibilities for a cure and trough taking that passion to the street, awareness is raised. Parkinson's is no longer someone in the corner of the nursing home in a wheel chair sleeping. We are many strong fighting a disease that can strike you down in your teens and twenties as well as older. Will it take babies being diagnosed with this disease before we can find a cure?

Thursday, November 13, 2008

Parkinson's Clinic of the Ozarks



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A little while back I got in touch with the Parkinson's Clinic of the Ozarks in Springfield, Missouri wanting to check out their facilities and get a full evaluation of my Parkinson's Disease. Immediately I knew I had made the right choice. They were ever so helpful over the phone and were in constant contact with me or my physicans until November 11, 2008 when I arrived at their front door. Every detail of my journey was made easy and I really appreciate their attention to me and my problems. They have a really nice hotel on the site where you can stay for close to nothing and a Ronald MacDonald House next door. Each building is a separate bracket of medicine...Parkinson's, Physical Therapy, Bone and Joint, Heart and and so on. I checked in at 7:15 and had their constant attention until around 5:00.
I had speech evaluation, occupational evaluation, movement disorder and evaluation, medication evaluation, past medical records gone through. Thn after lunch we went through psycological and cognitive evaluation and then came the biggy round table discussion with every one there that had evaluated me and the doctors. I ;earned so many things and believed i really made some friends. The Clinic falls under these names Ferrell-Duncan Clinic, National Parkinson Foundation. Cox Health. Thank you so much Medical Team it was a memorable experience and one I would recommend to one and all.
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Sunday, November 9, 2008

Parkinson'sClinic of the Ozarks

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I leave tomorrow for the Parkinson's Clinic of the Ozarks in Springfield, Missouri. After what seems like a year of fighting constant pain in my left arm and abnormal swelling from my elbow to shoulder, I am finally giving in and trying to find a solution. I really don't know why I waited so long. I guess this was a classic case of "putting off" and I probably gained nothing by doing this. Human beings are kind of silly about such things. They can take care of everyone else but themselves. So much of this disease is not knowing. Over time you almost just believe all pain is justified....It will be nice to have all the facilities in one spot and have all the tests run at one time. Some answers should become apparent by the end of the first day.

Now on another subject, I found this quote yesterday in my Bible and it so applies to my thought s for the new administration and my hope for our future as a free country. It is 1Timothy 2:1-4 "First of all, I urge that entreaties and prayers, petitions and thanksgivings, be made on behalf of all men, for kings and all who are in authority so that we may lead a tranquil and quiet life in godliness and dignity." This quote just strikes me as being so beautiful and calming. On a daily bases my Bible seems to lead me to just such a place in my life and I am ever so thankful that place exists.

Friday, October 31, 2008

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

Monday, October 20, 2008

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.

Sunday, October 19, 2008

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

Tuesday, September 30, 2008

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




Thursday, September 25, 2008

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



Sunday, September 14, 2008

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

Monday, September 8, 2008

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

Friday, September 5, 2008

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

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 mind......love 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 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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Friday, August 15, 2008

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

Tuesday, August 12, 2008

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

Wednesday, August 6, 2008

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......


Thursday, July 24, 2008

My Heart is Good.....

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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

Tuesday, July 22, 2008

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

Wednesday, July 16, 2008

The Prodigal Returns

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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

Tuesday, July 15, 2008

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..

Friday, July 11, 2008

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

Monday, July 7, 2008

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

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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

Monday, June 30, 2008

Milestones


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As we get older milestones take on a whole new meaning in our lives. Usually by sixty the milestones no longer exist. As for me you know I never do anything the easy way. Above is me crossing the finish line at this years Parkinson;s Unity Walk in Central Park, New York. I'm 61 , stage four Parkinsons and walked two miles for the cause. That walk was a huge milestone in my life. It seems now to make everything that has went before tiny in comparison. Nothing that I encounter now has any corrilation to my previous 60 years. Every minute seems to be full of new ideas and plans, new people to see and hug and always plans for the future. No day is taken for granted and neither is any person. I barely have time to sleep. Like I said this is the biggest milestone in my life but there are others happening around me also......

Patientslikeme.com is soon to roll over 2000 on the PD side. This is unbelievable since the site has more than doubled since March of this year. People from all over the world coming together to discuss their fears and problems with living with Parkinson disease. As their time on the site increases their bravery soars and they start sharing all their feelings good or bad. Some tare there for friendship and some are there for information. Some come for a good story line or just "nosing" and some are there to bring attention to themselves are a site or product. It ends up a very unique blend on the net......but it works mainly because we gravitate toward the importance of religion in our daily life with Parkinson Disease. I have watched the site I love so much grow and with it the possibilities for a cure and better life for those patients logged in and participating.i
Now comes milestone number three. I had no idea that someone would pay me to go to a conference for three days for Parkinson disease. Well hold on to your hats because I am on my way to Atlanta, Georgia August 7-9, 2008 for the Annual Young Onset Parkinson Conference with a scholarship for expenses and travel. Life just gets better and better. just so you will know, I do not multitask too well anymore so a lot of my thoughts will be centered on this trip and what I learn while I'm there. More soon.....Pokie



Friday, June 27, 2008

Thinking Up Instead Down


A SHAFT OF SUNLIGHT

A shaft of sunlight breaking through
Can make the whole world shining new;
Can shape tomorrow, change a life;
Can banish doubt and fear and strife.

One shaft of sunlight through the grey..
One word of cheer that we may say,
Could carry farflung consequence,
And might make the difference.

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Yesterday was a day that could have been a disaster as far as my ability to fight depression. Early in the morning I decided to leave my new grandson in the good care of his parents and return to my home to take care of my aging mother, I very seldom cry and yet I cried all the way home. I hated to leave him and the gentle feel of his little soft face against mine and return to the harse reality that waited for me. We had already formed a bond that needed no words to be spoken to make my heart soar to huge heights. Bless his heart in four days he had melted the ice that had formed in his grandma's heart.

As my day went on things continued to pile up and soon a im.passable wall was in front of me. Taking advantage of the fact I was 45 minutes away, my daughter decided to get rid of all the animals on my farm, including my nannie goat and her two kids. Mind you I have raised her since she was six weeks old. I still cringe when I think how lost she must be and she was such a good mom and a good friend. This one act removed me from farming and I totally lost my identity I was so proud of. I was a farmer. I'm sure the thought was it was safer and less expensive and easier on my health, but it threw me off the cliff and I've not been the same since.

I finally made it to the site and the first thing I read is very dark humor about PD and the last line just stuck to me like glue......something to the effect that sooner or later we would stop taking baths and the friends would stop coming by and that was ok with him.....I just snapped being Pokie on a soapbox and preaching out of turn! everyone has freedom of speech on a forum. But please do it with respect for the fact that you are talking to people who could very easily trip and not get up from depression on something you thought nothing of. well this too passed.

The next morning I received a call from California, Massachusetts,Ohio and another from California, all helping me to see that there was two possibilities here. I could continue thinking down and not only hurt myself but hurt the people who depend on me to make them laugh in some small way. Or I could turn the other cheek and be the person God sees when H e rests his eyes at the end of the day. The person who is following his wishes and doing his will.

I thought all day on this and decided I would just go get me a camper and travel since I have nothing to take care of anymore. I know they would have me committed if I tried this. So for now I will keep the faith and continue to write this blog and change for the better...thinking up instead of down.......pokie






Tuesday, June 24, 2008

A Night Full of Memories

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Over the past week I have tried to help my son and daughter in law with my new grandson who came into this world Saturday morning at 830 am. I am known to have a sense of humor but the family my son married into is a riot and my son is the funniest thing walking. The following are some remarks and funny things that have happened while Pokie was trying to be a grandmother yet again......

My son has always been able to mix words up and transpose them in the funniest ways but I believe he out did his self this time. My daughter in law is breast feeding and long before the baby came she was talking to her aunt about this process. Her aunt advised her to massage the nipples to increase milk production, which prompted my son to say,"You really need to keep those MILK DUDS producing."

His description of the birthingtable left a whole lot to the imagination, when he explained that the whole end fell off and there was a huge trash can there to use. And when questioned on the men being the ones to have the baby, he said they couldn't stand the pain.

Then there is the night before the birth. We got to the hospital about 2:30pm and the contractions were moving right along and then the delivery was put on hold so the doctor could go home which left the father of the bride and I searching for a place to catch some sleep and a nurse that was determined that there never be more than two people in the birth room at one time. So the terms of war had been laid out. Through out the night Leon and I continued our search for sleeping accomodation not realizing that our nurse from hell was watching our every move on camera. If I made it to the room she gave me just enough time to be motioned in and give mom a hug and here she came to run me out. The third time about 4 am I was beginning to show wear and tear and she came up behind me and said, "I said two and held two fingers in my face,"I said very politely(?), " excuse me but they are both sleeping and she called me in!" and she took me out.

You see I brought this on myself earlier in the evening when I had noticed they had a computer in the visiting room on WiFi and my first thought was, "Wow ,I can send it all back to the site first hand while I wait." This might have been a great idea except for the fact that the monitor did not work and after an hour of plugging and unplugging inlets and outlets, I went for a nurse to help. A very sweet lady appeared and off we went to the ICU waiting room where they had a monitor on BUT it was only getting the hospital channel. I thanked her very nicely and gave her a Patientslikeme business card and we talked a little about the site and parted ways. In hind site maybe I confused the nurses and they could have thought I was going to spy on them. Who knows but it made for a very interesting night.....

All in all though, God really took care of me quite well considering after no labor on my part and many memories to take with me and laugh about, I was presented with the most beautiful 9lb 2 oz. baby boy 21" long and a definite keeper in everyone's eyes . Thanks Lord, Pokie

Sunday, June 22, 2008

The Coffee Shop.....

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Very early in the morning in cyberland, something so neat happens almost every day. People from all over the world congregate at one place for imaginary coffee and chat. This morning we had representation from Illinois, California, Colorado, Tennessee, and Wyoming and Spain. As the jokes were flying all of a sudden Nicole (browncat) started telling us what she had to do to start her day after recent DBS surgery. She didn't just say I push a button and I feel better. She said starting tremor and giving stimulus and then there was a pause while we waited for the next event to happen as her brain adjusted to a new stimulator she had just received and was learning to operate. How do I thank this little gal from Colorado for sharing this most intimate of experiences with us with such detail and strength? I really don't think that's possible. I can only say I got cold chills as she went through the thirty minute ritual.

It started with a post a couple of months ago saying. I have decided to have DBS surgery will you keep me in your prayers and thoughts and that we did. The very day of the surgery she managed to get out a few lines to us to let us know she was doing well and we started sending her cards, both by email or postal daily.....yes, we phone call each other also....someone is always in touch for support. With the help of Patientslikeme.com we try to be available for each other 24-7....in the belief that a kind word or a moment of prayer can sometimes take the pain away or at least divert the mind to another place to make the pain more tolerable.

During these discussions a bond is formed that helps each patient to feel easier about discussing symptoms that maybe have been forgotten or lost in the process. Sometimes only one of us or maybe two have the same symptom and sometimes it's hundreds. Those who have different symptoms from everyone else are very important because could represent a new turn in this disease or someone is having success with a new drug or they tried something on their own and it worked. The important thing is they are talking and getting it out. This is not a pretty disease and it's not forgiving. It's brutal in it's attack on us and if we try to fight it alone it is very depressing for us and our families. But with friends who know just exactly where we are coming from the day is easier and the soul is able to laugh, if for only an instant.....

The other day I posted a picture of a dead tree amongst a row of very healthy green trees. I pulled up to the bank drive through and looked up and there was this tree. I could not wait to take a picture. It seem to be saying something to me so loudly....."Look even in death I am stately and proud and I stand out. I am the ruler of my surroundings." If there is nothing I can leave behind I hope someone remembers this picture of this tree. It had it's own grace , it's own beauty for those who would care to look for it. Ok, Pokie what does this have to do with Nicole? Nicole has taken a very bad situation and turned it around. She takes each day and tries to make it better. She's never given up. And she has selflessly shared her experiences to us knowing we are faced with the question daily should I have surgery or not.

My hat is off to you Nicole and continue to purr.......your such an inspiration to all of us .....love POKIE

Thursday, June 19, 2008

Time to Downsize.....


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Today I found that not only the corporate world but my world is feeling the pinch. The midwest will feel the force of this full blast. High gas prices will for ever change our world and once they (whoever "they" are) get that five dollar bill in their pockets, the prices will never come down again. It happened with sugar and it's happening with milk and eggs.

I am what is called a hobby farmer. I have a collection of pet animals on my very small farm that reward me with their wares if I feed them....I have chickens and goats and horses. But in all this I also have Parkinson's Disease and Acute Rheumatoid Arthritis, which though my very expensive meds feed it on a daily bases, I have yet to see a huge reward so as in the corporate world I have this question to answer: Whether to downsize or shutdown completely......

The first to go were my two rabbits to a neighbor. One was a mix between a wild and a domestic that I acquired somewhere along the way for my grandson. His buddy and eating partner was "Bugs" a big white rabbit we found happily wandering down the road in town one day. They have cohabitated for almost three years and yesterday a neighbor took them for safe keeping. The chickens will leave today leaving one duck to wander all alone in the pen. His name is "Quack" and for four or so years he has lived with the other animals and never let me come out the back door without a greeting of "hello." We could always take Quack down to the new pond and let him go but I'm sure the animals in the woods higher up the food chain than him would have him for lunch the first day.

Now we come to my goats, Sadie, Yopa and Pee Dee. I got Sadie eight years ago . She was one of four and they were six weeks old. I raised them like children and they always looked to me for protection and food and a hug at least once a day. They were God's original bushhog.... and there is nothing they won't climb and most underbrush is on their food regiment. They are a farmers delight if you can keep them contained. If this becomes a problem your flower beds are the first to go and following in close succession will be your small ornamental trees...You see if Sadie sees me working on something and really enjoying it in the yard, that's what she wants to do too....They are the closest thing I have ever raised to humans. I have spent many a frustrating moment yelling at her but I know when she looks me in the eye, she loves me and has from day one.

Well Sadie will be the last to go and my farm will no longer be a farm and with the evacuation the farm sounds will go too. No chickens crowing at first light. No rush when they hear the back door open. Also there will be no heat lambs in the winter and trecks through the snow to feed and water buckets to thaw. It's the end of a way of life for me and as always change brings pain and confusion.

These are the thoughts Parkinson's has brought to my mind today. As always I have fought a good fight and Parkinson's has won, Last year in January I broke my leg and suffered through the winter. I was lucky. I made it into the house for help and it was a fairly warm day. All of this seems quite mundane to the outsider but it is so important to my survival this winter. I have went many rounds with my enemy and often the score is enemy one Pokie none but with all the losses there are alot of wins and one is the friendships I have made along the way and another is my ability to pull out all the stops and go for it.and that is what I have done today with this blog. Pokie one Parkinson's none today.........thanks.

Tuesday, June 17, 2008

Strawberry Fields Forever.....

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What happens when one grows older? Why must all things become so hard? It seems after years of paying dues our fee would be more than paid and we would be entitled to a day of free rides. Where are those days and did I miss a turn in the rode while I was rushing along? All of a sudden the simpliest of things seem to be arming for battle with me. Vehicles that I should be able to finish my driving career with, sputter and misfire and threaten to quit. Appliances rattle and bang in defiance of the "we will run quietly" rule. Passersby get to close into my space and life just in general is really letting me down.

I've always been a farmer in my heart and looked forward to the change of seasons to spur me on to new achievements . No task was to huge and dreams danced day and night in my brain and begged for their fare share of time to be aired. Now tasks seem to come "super sized" and in ever greatening quantity. The lightest of things seem to weight tons and turtles move faster than me. I'm never caught up and always behind and seem to be in a rut.

I know if I looked really close I might be able to fine a small piece of a dream that was planted many years ago, but I wonder if I have the strength to nurish it and watch it grow. My hopes for peace on earth slip farther and farther away and most everything I believed in the sixties, just is not coming true,but....

When I saw the memorial to John Lennon in Central Park ,the old hippy in me was there once more and the fire was lit. I could "IMAGINE." I hope in what I will call the later stage of my life that this is never taken away from me and I can shut my eyes and see that medallion in the middle of a far away place and be able to imagine this world living without all of these neurological nightmares we have now. If I must become child like again before I die......I can only hope to be able to once again be a hippy in "Strawberry Fields Forever".......................POKIE

Friday, June 13, 2008

Here's to You Grampa.....

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There is nowhere to start when you are going to talk about my dad. The funny part is now seven years after his passing there is no ending either. Now more than ever this very strange man remains very much the head of our family. Something gets done on the farm like the lake we put in in the pasture this year and my son said, "Mom, grampa would be so proud," and I know that he is proud.

My dad was born in 1919 and grew up during the great depression in a log cabin north of Cape Girardeau, Missouri. They had a little farm. Just a back woods hillside that was never going to earn it's keep. They had a big old mutt dog named Teapot and one milk cow named Bessy and life was good considering the economy. He was one of three kids. Aunt Dorothy went on in life to become a very respected teacher in St. Louis. Her brother and my dad were very close and were always referred to as "buds." Probably co-hearts in crime would have been a better description. Though the family was so poor, education was always at the very top of the list and Uncle Jack and Aunt Dorothy had the I.Q. to make it and my dad was always a" wantabe." He made it through high school and went to work while his brother, enlisted in the service as a pilot only to crash right after receiving his wings. My dad or his mom and dad never got over that loss and my dad spent the rest of his life, and his mom and dads life, trying to be his brother, Jack.

I was always daddy's girl and though at several periods in his life we really clashed, I remained his little girl and he was proud....I can remember me saying to my brother in the later years of my dad's life, that if I turned out like him, do everyone a favor and just shoot me. Guess what in my "ol age" I have turned out to be just like him......We differ in to major fields. Both of these major quirks were brought on by the depression. The first was saving anything. Down to the plastic salad bowls from Wendys', or old wheel rims or bent fence posts. The second was saving money and did over time accumulate a small fortune around him....BUT in my family you don't inherit money you inherit the possibility to make money with a lot of work involved.

I have a plague on the wall that says"If all else fails......how would grampa have done it?" Well, he survived with some very strange ideas but he believed in God and family and the last week of his life at 82 he was still cutting trees down for fire wood and stacking it...He had Myacinia Gravis. If he was in the yard the old trusty metal lawn chair was never far behind. At trying times in his life he was known to write a poem or two and liked to hear stories and could tell quite a few real stories.

"Here's to you grampa " as you were called in later years. You didn't always do it right but you "Got-R-Done" and you enjoyed the farm you died on and I really did love you afterall.......POKIE

Thursday, June 12, 2008

Friends

This picture means so much to me. I have had it on my computer for such a long time. I found it one day after posting on PLM I thought I needed to be adopted since I had no caregiver and my mother who is 83 has Alzheimers Within hours there was this post from Alberta, Canada, "Pokie I'll adopt you'" and that began my relationship with Kirby....No matter what I post she always comes back with sound advice and caring.....Both of which I need on a daily bases. How special life is to have these hidden treasures around every bend in the road No matter what happens she is there for me or anyone else. So often you will hear someone say, I wish I had been this smart when I was younger. Boy. I would have had the world on a string." The world needs those people that are smart early in life but it also needs people like me that reach old age and can look back and remember all the lack of wisdom I had and how much fun I had being ignorant....

Many times if it had not been for my friends I would not be here today. Once my friend Linda stopped by after church, for no reason but to check up on me. I'm sure she did not realize that God had sent her to me because that was the day I had my first seizures and I was home alone with my kids....She was my friend the angel on earth that took me to the hospital and eventually saved my life. That was in 1996 and now twelve years later we just got off the phone from just checking in on each other.

Often the world closes in and it's pace consumes us, and we cannot breath....we just want to sit and be very quiet and maybe it will go away. We all have those moments and when we do some hibernate a day , some a week , and some a life time...But in using that wisdom of my older years, I try to look back and remember all the good and let the bad go.....my life's too short to start being dumb again........love POKIE

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Tuesday, June 10, 2008

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a letter to the registry....

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My story begins many years ago in the Midwestern part of the United States when quite abruptly on a Sunday Morning in 1996 I began the journey that to this day has found no end and has since become my life's work. I got up that morning quite innocently thinking of going to church with my two teenage children. My thought was to run to the grocery store and get some donuts instead of fixing breakfast. Little did I know that without warning confusion would set in and though I did not realize, I was lost. Two blocks from home....I was lost. I tried the donuts that were marked 2 for 49 cents and could not figure out how much money to give the clerk...With a twenty dollar bill in my hand I pretended all was well and took the change and headed for the door. I headed for home still not realizing what was going on and drove past my house three times before I remembered where I lived and pulled in the driveway only to get out leaving the donuts in the car and swearing someone must have stolen them. After much confusion, I laid on  the couch not realizing the looks on my children's faces as they watched their mother go into melt down.

That was the beginning of one of two grand-mal seizures that launched me into the world of Parkinson's Disease. Now twelve years later and with many symptoms passed I sit quite peacefully listening to American Indian music and writing to you of a life that has come full circle

I now blog daily about the encounters with life and my friends on Patientslikeme.com. It seems that daily God sends me in another direction for the cure. While at the walk I talked to May-May Ali at the Parkinson's. org booth and when we were parting I ask her to give her dad a hug for me and ask her to visit the site to see what we where doing and she ask who should she look for. My answer was, "POKIE"

Monday, June 9, 2008

A Minute to spend......

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A MINUTE TO SPEND

So you have only a minute to spend?
well, here's what a minute will buy
A word to let someone know you care,
A smile to a passerby,
A bit of communion with God and His world,
A "Thank you that's maybe long due,
A deep look inward to change your sights
And broaden your point of view.
If you have all of a minute to spend,
How very lucky you are!
For a minute will buy a whole heart's prayer,
And pay your way clean to a star!
H.L. Marshall

This morning I thank you Lord for letting me get up and and open this book to this poem...Today I will research this woman who wrote the poem that will launch my day....and if she is still with us I will write her and tell her how much she means to me...As always I let a book fall open and with that reading I start my day....Sometimes it's from the Bible and and other times it's from "A World That Sings" by Helen Lowrie Marshall. Sometimes it comes from very simple poems my grandfather left to the family Somehow with the beginning of each day, My Lord takes time from his busy schedule to lead me in the right direction for that day.....In my present state of mind, with brain cells mis-firing right and left, how I appreciate this extra effort he is giving to me here on earth.

So often now, and more so than ever the very simple things get pushed aside and it seems the first to go are hugs and smiles....Now if you receive either of these from a "Parkie" please feel special. Our arms ache and Our faces are sometimes frozen in a frown or blank stare but our heart 's are still glowing inside and the love is still there for all...The trend seems to be not to touch and for heavens sake don't let anyone into "Your Space." We are becoming very lonely people at our own making. I have found a very special exercise I do daily to keep me going .....I watch a child a work.....Very much from a far so they don't realize they are being watched....and truly see that brain work the way God wanted it to and never take that for granted again....The examples I have are my own grandchildren....but if you have, none go to a park or mall.....There is a whole world down there close to the ground that really has better perspective than we do.....

So......Today I will "Smell the Roses" and mentally send them to my friends....I will talk to myself as if they were walking beside me and life had no problems.....and I will glory in the fact that my Lord loves me with all he has. He brought me all the sensations of that rose to comfort me and I am blessed Thank-you POKIE


Today With PokieToo and Parkinson's and Acute RA Disease