JANUARY 1, 2009..... "ONE ON ONE"

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I do not see how anything can possibly beat last year but it must. I can not believe the happenings of even the last six months but they have happened and with every new day my life changes. I have to ask. Was I like Rip Van Winkle? Did I just sleep through the first sixty years of my life only to be rudely awakened at sixty plus to a world spinning around a hobbled intruder. I barely allow time to sleep because there are things to learn and places to go before the alarm clock goes off....leaving me on the other side of a beautiful dream. I am assuming if you survived sixty years of such stimulation you would be burnt out. Daily someone warns me slow up you will indeed burn out, yet the passion burns on. The places I want to go this year are already on the calendar and the stories I want to tell dance in and out of an already crowded living space called my brain. The things I use to do to occupy my time , now seem so mundane and pointless and the new interests keep calling me to come out and play. I am like a cat on the prowl. If there is a door slightly ajar, I must peak in. If I have a question I must find an answer. The word multitask has taken on a whole new life that has chosen not to include my past life style. There are appointments and meetings with people I would have never met, talking freely about a disease or a band of many diseases that seem to be showing up everywhere with no mercy on their victims. I am reminded today that only seven months ago it started with the statement I made to myself at three AM while on the Internet. "I can do this" Though I had never done it, nor was I suppose to, I knew I would try no matter what. My shroud is my faith and it buffers me from harm, it seems. Though I have my bad days as we all do, it seems a correction is made and I'm off again. The exaltation I feel is hard to explain. Now, in January, it is so hard to not travel to somewhere, after months of being on the road. The plans made last year will make for a very interesting 2009 and who would have thought that I would be making a difference. The point has been proven and that point is. ONE ON ONE WORKS. One patient helping one patient yields two patients feeling better and it just keeps multiplying until we find that covered up space where the cure lurks. I sit here looking at a picture that was taken of me boarding the plane at St.Louis Airport last April, going to New York City. I blew it up page size so I could look me very much in the eye. I can see the different person even then though I had no idea of the magnitude of things I would do on my own. Maybe that was just what God wanted the world to see. Me, a granny in her sixties, not owning stylist cloths, walking with a cane, blundering through from one place to another. I am subjected to all kinds in this but once again my faith pulls me through. I am a novice and very believing, but you have to be to do this. Money does run short but I always get through, If I am used in one place I'm needed in another and the faint at heart fall by the wayside. Seldom do I write just about me. It seems like such an "I" thing and very self centered, but here on January 1, 2009 my resolution is to physically attack each day as if it were my last and make a difference. I will make that extra phone call that will bring a needed idea to some place who has no ideas left. I will hug someone who has not had a hug in a long time. I will lend a shoulder to someone who needs to cry and I will listen.

Life is good and we as a country have a fresh start. Let's band together to make this land and world a better place for all that follow us. God gave us life. Let's make him proud. Live each day to the most and though they say never look back, sometimes the view is awesome over your shoulder.......love pokie

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

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

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?

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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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.

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

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

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......