Friday, December 17, 2010

Crosby, Stills, Nash & Young - Woodstock

Happy Birthday Woodstock...Wow!

No Pain, No Gain......

It's five am in Illinois and we have extreme weather conditions all around. Icing everywhere does not encourage me to get real excited about venturing outside to get some form of exercise...This is what I have been working on while not blogging daily. November nineteenth I had my right hip replaced and with that decided to just reinvent my whole life. I now exercise an hour or more daily. I have lost 34 pounds since August 1st and this is what I am trying. I joined the Y and go in and walk the gym in laps. One lap is one/sixteenth of a mile. As of yesterday, I am up to a half mile, 8 laps.....four without a walker and four with. I can now accomplish this in 24 minutes. Not lightening but gets the heart rate up and is building the strength in my legs AND MIND. I found out that after the surgery, my repaired leg wanted to go big time but my PD leg wanted now to freeze. My leg that was operated on is smaller than the PD one but seems to be much stronger. My main worry now is upper body strength....especially my left (PD) arm. The upper muscle in both arms has excruciating pain most of the time SO I do three sets of twelve, arm pulls to the front with a Pilate's stretch cord, three sets of twelve lying in bed and extending my arms straight over me and making large circles to small circles, leg lifts high to just off of the bed and then back up. I have never been an exerciser and this is not fun but I am starting to see the rewards and that is fun. Second is dry skin......My meds seem to drain every ounce of moisture out of my body so "Lubriderm Lotion" constantly and lots of liquid water or green tea. I force myself daily to do my hair and makeup....why, because, I have found if I don't force ALL of this I will not do it and I will die a slow death and not even know it. In with all this I am working on a 1000 piece puzzle of down town New York City(for the brain), read my Bible and several books loaned me by a special friend and take care of my 87 year old mom with Alzheimer's. None of this would be possible were it not for the total support of a long time love, who constantly tells me my worth to (if no one else) him. He sets my goals on very high shelves and encourages me to reach ever higher. What a difference he has made in my life at 63.The point behind all this is.....If I can do this, so can you. A chronic disease is a killer in so many ways. It not only kills your body but your brain while it runs all those around you away in fear. Those who are once friends, tend to pity you and you let them. This causes you to start a never ending road that takes you nowhere but to "Waste Land U.S.A." Please, no matter what chronic disease you are battling, do one thing for YOUR improvement today. Then tomorrow try two things. Life at this end of the scale maybe short but it need not be unproductive. Take five minutes and laugh, if at no one else, yourself and know I am thinking of each and everyone of you at this Christmas Season with love in my heart. Love Pokie

Thursday, December 2, 2010

New Agenda

The PLM Unity Quilt came home today for the holidays and arrived just in time for my home nurse and PT lady to see it and and it looks like a new Symposium is wanted in the area. I had successfully pulled one off in May of first with no experience, so this one should go smoother and PD has come so far visually since then, especially in our rural area in Illinois. That has always been my plan to get us out and let the world see just how productive we are. So often the plan for a PD patient is to put them in a nursing home and give up....No need.....we can and will survive if given just a little help.

These are the things on my new agenda:
Love, love and more love.
Symposium next summer for Fayette County
Team Patientslikeme is up and taking new members and donations for the 2011 Unity Walk
Finish all the stories behind the Unity Quilt and let people feel and love her.
Go to Washington, DC in February for PAN
Work with the city for a better Chronic Disease Support Group
Unity Walk in April and praying for 30,000.00 in Team donations, which would be double last year.
Make these diseases visible and get them cured or at least let us have a much better Quality of Life than what they are offering now.

Sounds like a lot of work but I do not take being given a new chance to walk lightly and will continue to fight with all I Pokie

Sunday, September 19, 2010

How Time Slips Away

I have definitely been slacking on my writing, lately. At least public writing....... I am constantly writing poetry and prose on slips of paper and sticking them in books or my purse and pull them out much later to review and add to. In the past five years I have accumulated many mountains of the written word...some mine(most) and some from other people. With Parkinson's I have trouble retaining what I read , but have found if I write it down it sticks better, hence stacks of unfiled thoughts and dreams. I still wake up in the middle of the night with a verse or song going through my brain, begging for attention, at which time I climb out of bed and usually, spend all night perfecting it to my taste. Last night or better yet, this morning I woke up in prayer, not once but twice. This is a first for me. My prayer was in thanks for a special relationship which is forming. I can only say there is a lot to be said for hanging on just a little longer when you think there is no more to live for. As optimistic as I seem, recently I had all the pain and negativity I could stand and was just tired. Tired of fighting to live, tired of being surrounded by negative thoughts and tired of trying to make good of a very hard road to travel by ones self. I was truly making my bucket list and hoping to be spared continuing strife on my journeys to the after life. I pulled together all the courage I could and ventured out after months of home bound living and you know what? God rewarded my efforts once again. I know in times of upheaval over religion and faith, there is a lot of disbelief, but I am solid in my faith! As hard as my times get I have never decided to opt out and end it....I just blend back into the woodwork and become complacent. GOD SAID NO! It isn't time yet and brought me a whole new fantastic life like none I have ever known.......If I had a way I would bottle this and send it to each of my friends and acquaintances in the belief that their life would be saved too. I am no spring chick and I move like I'm ninety sometimes, but I know I am loved through and through and someone cares, just about me. In that thought I was made to understand that when you receive you pay back. Never take anything you cannot repay. .....and if the pleasure was GREAT pay back in kind and it keeps on coming.....I had no idea what I was missing until God took me and showed me......and so at three this morning before time slipped any further away, I was giving thanks in my dreams. I will not share my veery personal prayer but I am sure God heard me and listened....Love Pokie

Saturday, September 4, 2010

Weathered and Worn

See this old barn. She's standing so proud, though her supports are very compromised and she appears quite faded. She has taken repeated attacks against her exterior and still remains true to herself, and Oh, the stories she can tell. She is very large by general standards and in some places very disorganized, yet she stands proudly for all to see. I bet she never even thought of making a "bucket list" or giving up. I passed her two weeks ago on a journey to my past.
You see two months or more ago I had given up and was making lists of things I really wanted to do before I died. This is so totally not me but none the less I was there, making my bucket list.....Me the person who cheers everyone else up was failing and fast....I was just tired. I was tired of thirty some pills a day, I was tired of hobbling everywhere I wanted to go. I was tired of feeling ninety when I was sixty I was just tired! Though I was ready to check it all in, God must have had other plans for me. As he usually does, He sent me an option. Chuck it in and give up or look around and try again....I can say this much about the whole scared me to death but now two months into it I have never been happier in my life.
As humans in God's world we really are not given the option to quit, no matter what. Much like this old barn I have been beat on and weathered many a very strong storm and YET survived to see the sunshine the next day. If there is one thing I have had all my life is faith. Sometimes it has made me appear to be a pie eyed "Pollyanna" and I have often been referred to as "just a little off" but it has gotten me to today. When God decided to show me what it was to be truly loved, he did a beautiful job, as always. I passed this barn on a journey to my past and came back to just stare in amazement at it's beauty. I hope I make you proud. Lord, were you to travel by me and just take a glance. I'll not give up again and I truly thank you for the faith you had and still have in me.
"No one can go back and make a new beginning BUT anyone can start from now and make a happy ending." and "We are never given dreams without also being given the power to make them come true" "Why do we close our eyes when we sleep....when we cry, when we imagine or when we kiss? Because, the most beautiful things in the world or unseen." Love ya Pokie

Sunday, August 29, 2010

I'm not Defined By PD and Neither Are You....

Recently someone very close to me, got all of my attention when he said, "You are not defined by Parkinson's" I really had not given it any thought before that. I was having a particularly bad day as we often do ...On days and OFF days...all the time, but this one was the worst possible. I didn't feel good and pain was high, I was having huge amounts of trouble standing and walking and I had a meeting I needed to drive to St.Louis for that afternoon. My phones were giving me a fit, and all my reception on this hill of granite was gone.....even my land line was not about one in the afternoon I said to my friend, "I'm not going to go. " It would have been very easy to have just gone back to bed and sletp the rest of the day away. His statement to me was one I shall always carry with me and cherish. "You are not defined by Parkinson's Disease. You are a beautiful woman, with or without Parkinson's. Whether you know it or not, I depend on you for my strength.....DON'T LET ME DOWN!"
Needless to say, I went to the meeting and had a great time and when I got home a message was waiting for me. " You never know when someone else is depending on you for their strength. You wouldn't want to let them down"......No I do not.
I am so blessed to have so many friends and in particular one who can put me back on the right path when I stray and feel so sorry for ya always Pokie

Friday, August 27, 2010

How Could This Happen

Just when it looked like we might be making some headway, THIS. Monday a federal judge issued a temporary injunction halting federal funding for human embryonic stem cell research.What is wrong with these people? In one fatal swoop any new grants are on hold. To put it in very real terms, the National Institutes of Health(NIH) stated yesterday that 50 grants up for peer review were pulled; 12 proposals worth $15-$20 million ready ready fr their annual renewal in September will not be renewed. In addition human embryonic stem cell lines ready to be added to the registry(the listing of eligible stem cell lines) will be placed on hold. We are still waiting for definite guidance from NIH about how this ruling will affect research already underway using this years money.I am so up[set as are so many more in the Parkinson and Neurological Disorder communities. That is why we simply cannot accept this mandate....Please stay tuned in the coming days and weeks for important updates on this issue and how your voice will play an important role.
I hope you as an ordinary patients have a big word in this
lease stay abreast of this and let you Congress how upset you are.....Hound your legislator for support. Let's all get out there and push this rec ending


For four years or more, I have been in search of answers to many questions that enter in and out of my life. One of them is when does one become old? While growing up; "old" was my grandparents and the little ladies at church with the heavy nylon stockings which always seemed to sag somewhere and the shriveled up little men who carried gum to entice you into good behavior and light conversation. As I got older; " old" was ladies with too much makeup and too funny a color hair and men wearing bad fitting topees. After sixty; I went into denial and refused to address the subject any longer. I am now sixty three and think of "old" as a hundred and can only hope, if I make it, I do so with company. No one wants to be alone but particularly when your old. Pain seems worse as does thinking. Life is so much easier with a friend.....and life has graced me with many friends and lots of love. Recently my life took another turn and this turn came at a particularly bad time but as it seems, God did not wish me to decide I was done and give up. As I made my Bucket List in preparation for my inevitable demise He intervened, as He always does and sent me down yet another path.....teaching me once again I am not in control and never was . Only my Lord decides when and where and just how happy or unhappy you shall be. I HAVE NOW COME TO THE CONCLUSION THAT"Old" is just a word not to be thought about. Some may be "old " at twenty or maybe born old......I chose to stay forever a kid in my heart and possibly that kid will convince my mind and body that "Old" just doesn't exist.....Love ya always Pokie

Wednesday, August 18, 2010

Rainbow Connections

God gives us Rainbow Connections, to heed or ignore....Little visions and voices that lead us in one direction or another on any given day. Some listen intently to these voices and others just ignore them and do as they please. What a waste of God's time if one chooses to ignore ans how frustrated he must be getting at our actions. Did someone need a hug today and you passed them by? Did you have extra of anything and not pass it on to someone needing it? Could a nice word have been spoken instead of the rough words that erupted? Did you hold someone down for your own happiness, without remembering that a caged bird does not sing? Why can we not see that our Rainbow Connection is here, now. Our chance to find that pot of gold and make it ever shine for ALL to see. Try it today .....don't make it about money but instead about love. Love your neighbor as you would love yourself.....maybe there is were the problem lies. We cannot love ourselves, so therefore cannot love our neighbor. Somehow we must all make that journey to our "Rainbow Connection", sit quietly and listen to the voices of change......then act on those voices:

"who said that every wish would be heard or answered
When wished on a morning star?
Someone thought of that
and someone believed it
and look what it has done so far."

Yes, I am definitely a dreamer and a lover, I'm told, as well. But look around you at the wonderful space we have been given to inhabit? Regardless of what you believe you must realize and be thankful and pay forward or back for the rent you are owing. There are so many ways to shine, today. Take just a moment with that cup of coffee and come up with just one pleasure for Your Higher Pokie

Sunday, August 15, 2010


For as long as I can remember I have viewed Sunday as God's day....and that always made Sunday so special. The best of all things happened on Sundays. When I was small my grandparents lived two doors down from me and every Sunday they would pick my brother and I up for church which was one of my favorite places to go. My grandparents never missed a Sunday and my grandfather was always well armed with chewing gum for all surrounding kids in hope the chewing would keep them quiet for the duration of the service. After services we would go to my grandmothers for late lunch and a day of just loafing. "Grampa Mac" always said, "God made Sunday for was in the Bible."
My Sunday is going to be for thanks today. Thanks to a very special friend who has always been there for me throughout my life. In times when we were apart he helped me through troubled times without even knowing it. Just the thought or the memory would spur me on to the next day and everything would be better. Once a very special friend comes into your life, they really never leave. They are there even if it is only in your mind. I am finding in my later years that My Mind and God's Way seem to be all intertwined to where they can not be separated. Well, without rambling on needlessly I would like to dedicate this to my special friend in time and hope your Sunday is filled with peace and contentment.


"When I am down and oh my soul so weary,
When troubles come and I my heart it burdened be.
Then I sit still and waiting here in silence
Till you come and sit awhile with me.

You raise me up, so I can stand on mountains.
You raise me up, to walk on stormy seas.
I am strong, when I am on our shoulders,
You raise me up to more than I can be." Love ya always Pokie

Tuesday, August 10, 2010

Tuesday Morning Sunshine

Illinois summers often leave a lot to be desired when it comes to comforts. The heat gets ever higher and the humidity triples the actual figures. It seems no one on the face of this earth could be unhealthy if they lived in Illinois or Missouri because every bad toxin being carried around by that person would surely be sweated out of their system by the extreme conditions. This is were the mind must become very inventive and take the body to a "Paradise Lost." This is something my mind has always been able to do. I am the original dreamer. As a child, I could always play happily with my cat "Double Ugly" and the world just did not exists around me. Little did I know that through out my adult life this has been a God Sent Gift. Four or five years ago, when Parkinson's raised its head and demanded attention, I was able to sent my mind to higher ground for safety. I would dream and still do dream of every possible opportunity I could find to stay active and mobile. At times it was sewing and travel, writing and computer work BUT now many years later I see that no matter how much you love something you have to keep on a strict schedule, try to stay focused and most important KEEP MOVING. I have a tendency to get started at the computer and go all day writing. This in its self very satisfying to me and allows my inner child to play but the exercise gets put off for another day and that day never comes. Since last week I have accumulated enough dreams to last me the rest of my lifetime but I now realize that it's a package deal. Get fit, be healthy, and take those dreams to the max. This Tuesday morning in Illinois, the sun is shining and it is already looking at one hundred at nine in the morning. I have had my fresh peach and a cup of coffee with fresh local honey. Add to that a crunchy peanut butter and honey sandwich on whole wheat bread and I should be ready to dance with the best of them until noon with the help of another fresh peach at about ten......and those dreams and memories dance and play happily throughout my brain. love Pokie

Tuesday, August 3, 2010

Look at Our Finished Project

Look at this finished quilt all ready to be shipped to Glasgow, Scotland for it's debut to the World at the Parkinson's Global Congress in the fall.This is the combined effort of 16 Parkinson's patients and Parkinson's friends in different stages of the disease but ready to show their abilities to shine. The Parkinson's disease Foundation has been working diligently since last October to put together a huge display for the Congress called the PDF Quilt Project and these panels were made by only patients and friends who post on From Kenya to Chili, from East coast , West Coast and Texas and the Midwest, the panels came in. They were made with love and heart felt happiness to be participating in something so important to Parkinson's Awareness. As each panel arrived at my house in Illinois over the months, before I sent them jointly in for quilting, you could feel the personalities and warmth. Like a bunch of kids, each was different and unique. some needed mending, and some were not square, some needed backing to make them stronger. some drew a picture and some told a story and some just begged you to touch and get to know them.

By the time the day came to call FedEx and package all sixteen 2 foot x 2 foot panels for shipping, I handled each one it seemed a hundred times and I could barely let them go. But that evening as I sat and stared at them one last time.....something inside me just was bursting with pride. The same pride a mother feels when she sees her children walk down the isle to receive their diploma to graduate. I just stood up in the middle of my living room, with no one around, and said quietly to myself, "Yes, we are being heard, finally." Bless you
Parkinson's DiseaseFoundation for giving us this opportunity and bless you, the makers of these panels for your time and effort while battling this awful disease and last but not least thank and bless you for giving us a home to flourish from........As always Pokie

Friday, July 30, 2010

Local Woman Joins in on Parkinson's Quilt Project

Look what showed up in my home town paper in the middle of nowhere today...the town was buzzing!

Vandalia resident Charlene Pryor recently used her talents to contribute to the Parkinson's Quilt Project of the Parkinson's Disease Foundation (PDF) seeking to raise awareness of Parkinson's Disease(PD) and the need for a cure.

Pryor, 63 was diagnosed with Parkinson's in 1995 and took up quilting as a hobby in 1980.
Among the many quilts she's created over the years, one of her favorites is a piece she made about her experiences living with Parkinson's.

So when she heard about the Parkinson's quilt Project, which will bring quilts together from all over the world, she was eager to get involved.

She not only sewed a panel for the quilt, she also serves on the project's advisory committee. In this capacity, she performs outreach to other people affected by Parkinson's, letting them know they too can play a part.

Pryor's own quilt panel, entitled "Thanks" is a tribute to the various Parkinson's organizations, including PDF, that provide important services and information for those with PD.

Her Panel, which she sewed in one week, features logos of each charity, which Pryor calls "lifelines" for those with Parkinson's
Pryor said of her efforts, "I am grateful that PDF was able to provide me with an opportunity and that they are bringing together quilters who have the same goal in mind: to let others know about Parkinson's.

"I also hope that my contribution to the quilt project lets others see that they too can help make a difference by becoming involved, whether by quilting or any other means."

Robin Elliott, executive director of the Parkinson Disease Foundation, the organization that is leading the quilt project, said,"The true power of the Parkinson's Quilt Project comes from the 600 individuals such as Pryor,who actually create the pieces that we assemble. When the quilt is displayed for the first time at the World Parkinson's Congress in Glasglow, Scotland in September, it will radiate her contributions and those of hundreds of others around the world who, like her, are touched by Parkinson's.

"It will also remind the world that we need increased awareness and funds to find a cure for Parkinson's. We applauded Ms. Pryor's efforts to help make all of this happen." Those interested in learning more or requesting an image of Ms. Pryor's panel can do so by calling PDF at (800) 457-6676, emailing or visiting

About Parkinson's Disease

Parkinson's disease is a progressive neurological disorder that effects nearly1 million people in the US. Although promising research is being conducted, there is currently no cure for Parkinson's
About the Parkinson's Disease Foundation

The Parkinson's Disease Foundation(PDF) is a leading national presence in Parkinson's Disease research, education and public advocacy. It is working for the nearly 1 million people in the U.S. who live with Parkinson's by funding promising scientific research to find the causes of and a cure for Parkinson's while supporting people with Parkinson's and their families and caregivers through educational programs and support services.

Since its founding in 1957, PDF has funded more than $85 million worth of scientific research in Parkinson's disease, supporting the work of leading scientists throughout the world.

Come Walk With Me......


Come Walk With me along life's path
And I will walk with you.
We will share our joys and sorrows
the way good friends shall do.

I'll take your hand and you'll take mine
We'll walk together on life's path.
There is no gift more precious than
A true and life long friend.

And when the sun is setting
and we pause to watch the sky,
I thank you Lord for the pleasure
that my friend has brought me by......

Friends wander in and out of our lives these days as the whole world seems to be moving at way to fast a speed and yet out of nowhere came a special friend to lighten my mental load just by holding my hand. My guardian angel was really looking out for me on this day when out of nowhere appeared someone I had not seen for decades and the amazing thing is the beauty in the sincerity of the thoughts and words that flow from this chance meeting. Just a small writing in thank you for what you have given me back in my life...My Friend love Pokie

Sunday, July 25, 2010

Fairies at Play


Reality came to play in my yard today.
I watched her with wonder from my room with a bay.
She danced and she sang and she chased butterflies.
I sat and I stared and I wanted to cry.
How dare her come to my yard and bring such glee.
Where roses grow in colors and bunches of three.
She ran in between and merrily she flew.
My life's been trespassed......
For Free.

Odd my mind would go here yesterday, when in the Midwest the temperatures soared past a hundred and rain came by buckets, but, I guess, it was the sight of butterflies dancing around every available flower in the yard that sent my mind to wander this path. So many uninvited things have been entering my life since I started to battle Parkinson's. Usually I don't dwell on losses and try to go on, but I see now, because I thought I had dotted all the "i's" and crossed all the "t's" as I went along and never was one to look back that I was eventually have to face facts. Then along comes something or someone who you cannot ignore and they are not considered a trespass but as they wonder into your life you are forced to acknowledge the times you have had taken away leaving so little to respond to life with. You look back and so want to be the person of before, agile and carefree but know that your bones will never leave you painless for a romp in your past. One thing I am so fortunate to have realized today,is that while the taking away was in process, some things were left behind. My heart and my mind hid quietly away as my mobility was stolen and gone. Once my body could no longer move, my figure soon drifted to places that were impossible to enter and at this point my mind sought solace and declared,"Enough." I have since realized, my heart and my mind took over for what was taken away and that was fine until yesterday and I dreamed of years gone past and freedom of flight. May it be possible, we will only see, if my mind might be stronger than all of me and gain me this one last chance at life that had slipped away only to be saved for another day. love always Pokie

Thursday, July 22, 2010

Hard To Dance Without Music

As most who follow me know by now, I am an avid supporter of the website and have been for years. Our forum posters range in age from early twenties to late seventies. We band together as a very tight knit community who care deeply and sincerely for each others welfare BUT as we meet virtually every morning for coffee on the Internet, it becomes ever more evident that this country, MY UNITED STATES OF AMERICA is letting it's seniors and particularly it's disabled seniors slip through the cracks. What is America thinking? These men and women are not only our past but in their genes and minds hold all the answers to the future. All of a sudden no one wants to see or hear of the plight of the disabled senior. I have copied some comments and stories from the sight and with their permission I am passing their stories on to you. read with an open mind and heart and tell me if this is fare in any way.

"I don't post in the 'negative' range, but i think I need to for now. If you ever read my comments in the past year you know I am the type of person who sees the glass not 1/2 empty, but 1/2 full and that means there is room for tequila, ice and a party. However, somewhere, someone turned off the music. Some know that my wife is also ill (something worse than PD) which is easy to deal with in comparison. Last year, the PD got to a point where I could no longer work at a job which I've loved for 25 years and that, too, I have adjusted to. I've come to terms with the facts that some days I can't drive, type, work a button, tie a shoe, or go swimming by my self...such is life.This is where the problem lies; since I was 16 years old I have worked every day that I could put my feet on the ground and felt that was the right thing to do. During that time I have paid my fair portion into a system which was to be a safety net for those in need, BUT...with cobra insurance no longer available because the premiums went to $1400.00 per month, I find my self uninsured. no one will sell me a policy and every state mandated continuation policy seems to require that I run out of Cobra first. The DCF states my unemployment income is too much to get help, but they did offer my wife (who has medicare and the same resources) medical assistance. I am trying to get SSDI and even with all the doctors agreeing that I shouldn't be working, "The process can still take a couple of years" I Have called the SS Office, my lawyer, my congressman, senator, paperboy......The only one that has called me back is my paperboy because I owe him money.

I have traveled this country from end to end. It is an AWE inspiring gift from GOD and I feel grateful that I have been allowed to see so many places and people in the country I was born in. I LOVE MY COUNTRY very much, but I DESPISE the leaders of this country for the continuous joke they perpetuate on her people wrapped in the lie of health and social compassion.

Someone turn that damn music back up, will ya?!!!!!

This is the third time I have encountered this type of situation in some form this week. From phone calls to the Internet to people at the grocery store. This is dead serious and some one somewhere better be listening or it will be the sixties all over again..... love Pokie

Friday, July 16, 2010

TIME IS NOT NEUTRAL FOR US ..... World Parkinson's Congress video entry

I want to hurry up and get this on line. You may have noticed last week on my newsfeed on Facebook, a very close friend of mine gave me a sneak peek at what him and ten other Parkinson's patients have been working on for the Global Congress. Please view this and listen. The information in here is huge. Send me a reply or check in at More to come soon and thanks Bob and and good luck Pokie

Jamie Heywood: The big idea my brother inspired

It's three am and here I am with part of my family. October 7th of last year I had just finished my live setup for the 2.o Med conference in California when I went down with a grand mal seizure and once again I was in the Epilepsy World. After 13 years of dormancy, it was acting up again. Scary , huh? Yes, but what was different this time...The gentlemen setting on this stage, some of the men from, were and are my backup family. After four years on their site and so few days without me logging in multiple times all day, they know me better than I know myself. I have often joked that when it is my time to pass on, Ben will know months in advance. The most important part of this family, is their heart...always there, always caring. I trust them above all else. Some day I will have to sit down and write about my experiences on PLM. There probably is enough for a very funny book. I have clowned around at night when no one else was posting or even up, just me and Mr.T, the moderator. When I have had questions about outside Parkinson's advocacy, I can and could always drop a letter to Jamie and the response would be, "What can I do to help. Pokie" After the seizure in October, I returned to the site from the hospital a week later to find an invitation to join a beta testing on their new Epilepsy site. I've Beta'ed the Moods Community which they launched on my Birthday and waited for me to sign on and surprised me with a picture of a rocket blasting off and a big on line celebration. When it came time for the 2010 Parkinson's Unity Walk, in NYC they sponsored our team, through me, with a huge donation. When I started with them they were just starting so we have grown and learned together and as I was talking to someone today and they said they could see the difference WE are making for chronic illness patients. In the past four years the shift has definitely been from doctor ego to patient needs. That "one on one" interaction is often much more important than medication of any kind. And I don't mean to put doctors down. I have had one of the best Neurologist ever in my estimation and hope to return to him as soon as I can travel to St. Louis for visits. We were, above all else, friends and he would always ask for my input and never over medicate. I neither want or need to be a zombie because of my medication. I have "X" amount of time left in my life and have no intention of spending it sleeping twenty four hours a day. Well, you get the idea, I hope. I am so proud to say I am associated with and the crew there. I thank them for making everyday a new experience for me and showing the World just how important a social health network is towards finding a cure and furnishing a better quality of life as w suffer through......thanks again, Love always Pokie

Thursday, July 15, 2010

Friday, July 9, 2010

R.E Children's Project

As a grandmother of five this project touches my heart more than you will ever know. Thirteen years ago I lost, what appeared to be, a perfectly healthy grandson to Sids. He was a robust little blond headed boy with these huge blue eyes. The day before I took him to the doctor for his check up ....we laugh and the doctor kidded me about how healthy he was...That night his dad took him back to his home in Missouri and by noon the next day he was gone. He went to sleep and never woke up again. My son was nineteen at the time, and this was the love of his life....He never went anywhere that his son was not there with him. But we lost him to, what was that time a mystery disease...My son said we lost him to the devil.

What does this have to do with Seth and Grace? I read Seth's blog this morning and then I read it many more times and then I dropped him a line and told him how I would like to write, as best I could. about Grace and her disease and Seth and his battle to save her. You see Grace has Rasmussen's encephalitis. Less than 200.000 people world wide have this disease. "It 's a rare neurological condition that impacts children primarily under the age of 13 rendering them paralyzed on one side and experiencing incurable epilepsy. In many cases 1/2 the brain is the only solution to the uncontrollable seizures" According to The National Organization for Rare Disorders. (NORD) only 200 out of 7000 rare diseases have drugs approved by the FDA for treatment. Well what do the other 6800 do? I am afraid to ask. Yes, our federal government has provided us with the Orphan Drug Act in 1983 but the success rate is doubtful and more needs to be done.

I urge you to check this disease and Seth and Graces' journey for help and a cure all documented beautifully by her dad on his blog. Check him out in Facebook and No, you have not heard the last from me on this. I just have to do some additional research to send it your way....My prayers are with you two, keep up the good work. Those smiles are worth a million. Love Pokie

R.E Childens Today With PokieToo and Parkinson's Disease - Formatting Settings

Feeling Good.....

I feel a little leery about saying just how good I feel today and have felt for several days. Why? Because all around me people on PLM and around me in general seem to be so sad and lonely. I feel guilty. Usually when this happens and you run a string of days in really good humor, look out because the bottom will drop out of everything. My dad being the eternal "Optimist (??)" that he was would always say, "Look out for that light at the end of the tunnel. It might not be daylight it might be another train." Slowly but surely things are coming together here and I look forward to scrap booking next week...all the things I have collected on trips in the past three years and pictures of and from . I have a couple of sewing projects I would like to do while I am in an up swing. A friend of mine sent me this prayer yesterday that I would like to pass it on to you:
Dear God:
Please untie the knots
that are in my mind,
my heart and my life.
Remove the have nots,
the canots and the do nots,
that I have in my mind.
Erase the will nots,
may nots,
might nots that may find
a home in my heart.
Release me from the could nots,
would nots and
should nots that obstruct my life.
And most of all,
Dear God,
I ask that you remove from my mind,
my heart and my life all of the "am nots"
that I have allowed to hold me back,
especially the thought
that I am not good enough
Author Known to God
Well it's about time for coffee and medication for a new day.....I wish you peace and contentment today and as few "NOTS" as you can handle love always Pokie

Tuesday, July 6, 2010

Looking Up Instead of Down

No matter what you say to some people, they seem to believe they have to shy and moan and groan and pick the worst thing possible to think of . Then they grab their cup of coffee and no breakfast and start the day with that thought. They don't stand a chance of making it to noon without wanting to take someones head off or committing Harry Carrie. You know the saying, "be careful what you wish for, because you just might get it?" Well my wishes have a habit of coming true...seriously!!!! I sure am glad I think so positive all the time. Just in the past weeks negative thoughts would have robed me of millions of good times that laid the foundation for more good times. Happiness and contentment is there if you keep your chin UP not DOWN. Researchers have to think positive or a cure would not be in the offing. I also have discovered that "old" only plays a part in the scheme of things if you let it. Sure I would love to be twenty and pain free and offered the chance to start an adventure too good to be true.....yes, I know they usually are but what if it's the real deal and you missed it because YOU THOUGHT you were to old, too sick, too down instead of too up. I don't want to nag or brag but some times you just have to go for the gusto and forget all else. As long as God is your walking partner, the path will lead to somewhere and it beats the heck out of sitting at home moaning and ya Pokie

Monday, July 5, 2010


In a short amount of time I am facing right hip surgery and the surgery does not worry me as much as the chance of catching an HAI (Hospital Associated Infection) while having surgery or afterwards.....It's not an unusual worry, I'm sorry to say, according to World Health Organizations 1.4 million people worldwide suffer from infections acquired in hospitals. THAT'S MILLION. The deaths associated to this is believed to have been 99,000 in 2002 and in under developed countries the numbers are two - twenty time larger. All of this results in an additional burden on health care facilities of $6.7 billion or higher. To check these fugues and learn more about them go to
We very much need to realize one thing when entering a hospital. Never be left alone. Have a member of your family or friend keep a vigil on you constantly. All Doctors and Nurses must wash their hands before attending you same as housekeeping. Sandi wipes should be used constantly everyday to keep your area as germ free as possible.A little protection will carry you a long way and believe me protection is what you need. Strep, Staff, flu, parvovirus, TB sars, mrsa just to name a few you might have heard from and believe me there are many more lurking there that you have not heard of and what is even more frightening is some have no cure and are instantly deadly.
Kimberly-Clark Health care has launched an aggressive program to teach ALL concerned the dangers and better preventative procedure's of HAI's. The program is called "Not On My Watch" There are several upcoming events you might want to follow on HAI's in the upcoming months:
18th Annual Health Forum/ American Hospital Assn.
San Diego, Ca.
July 22-July 24 2010

BIT 1st World Congress of Virus and Infections
Busan, South Korea
July 31 - Aug 3 2010
Never forget or let someone else convince you that you do not deserve the best. And don't ashamed to ask them to wash their hands in front of you, regardless.You paying good money for the chance to go home healthy love ya Pokie

Sunday, July 4, 2010

Celerating the Fourth of July

My family and I pulled all the plugs out, this year to experience what living in rural America is, especially on the 4th of July. Living in the United States in this day and time is not the easiest , with economy and unemployment and general mistrust of all government officials. In Illinois this has been compounded by continual downpours making the fields impossible to plant or even work up. Some corn did make it to tassle stage thus the seed for the 4th was laid, corn on the cob. Several weeks ago my oldest daughter started stockpiling fireworks in the trunk of her car until last night when she and a few assistants pulled off a two hours display that matched any in the nearby towns and beckoned neighbors from all around. Our pond had a new batch of ducks sailing proudly back and forth and the grand kids had received and new load of sand which we left piled so THEY could spread it. Food and drink of all kind graced two picnic tables. Our pond is stocked with hybrid red ear perch which are just good eating size so dads and kids fished and my son-in-law grilled them with the before mentioned corn on the cob. The kids swam and moms floated on rafts while our three dogs ran back and forth after them. It really was a true Norman Rockwell picture and how lucky we were. You see we live in America a one of a kind land of opportunity. Even when the economy is bad and unemployment reaching double digits, it is still better than most and for me and my family it is heaven. Hopefully on the Forth in later years, the party will grow to fifty as the kids marry and their families expand. Twenty was nice but the more the merrier is my thought. With this story, I have tried to give you a small glimpse into my life in the middle of the United States on the Fourth. I hope your hoiday was as nice.....if not start planning now for next year and don't let it slip by.....This is OUR AMERICA...BE PROUD and SHOW IT......Pokie

Thursday, July 1, 2010

It's A Real Special Day...

Were you aware of the fact that today is "Holy Crap,Your Hot Day". Your probably not and really don't care but think about it if your over fifty or sixty. How often does some one look at you, or treat you like your hot? If your me, and most women my age, things like that don't happen very often. This has nothing, evidently, to do with Parkinson's or Epilepsy or maybe even Arthritis because I have all and spent the weekend feeling "Not Hot" BUT "Maybe Special" for the whole weekend. I came home just absolutely on the top of the world due to two gentlemen at my 45th class reunion. Kent and Jimmy brought memories back to me that I had stored away to review in heaven. Their smiles and hugs were better than all the medication that could have ever come my way. Some might ask why I waited so long to go back. fear I am sure but I am glad I waited. My kids are grown. My grand kids are older. My life is settled ,if not in a rut..............Thoughts of times in the sixties and seventies seem to no longer dance in my head but haunt me. The life I could follow then I can no longer follow.This is not because I am older and suppose to have grown up but because the World does not believe in that life style anymore. If you want to be safe, all the fun seems to have to go down the drain. This has nothing to do with feeling "Hot"except when you feel that high you have to glow and you DO feel better and nothing is more important than that moment...Nothing before or and surely nothing that might come later, because later is no longer counted in large increments like ever it's more like tomorrow and tomorrow is ok. During this span of living life to it's fullest, Bette Milder made a movie called the "Rose" and the words from the poem it was based on changed my life Here's a little of it.
"It's the heart afraid of breaking that never learns to dance. It's the dream afraid of waking, that never seeks a chance. It's the one that won't be taken who cannot seem to give. And the soul afraid of dyin' who never see,s to live...." Loving you always Pokie

Tuesday, June 29, 2010

Gypsy Rose

When I was ever so small, my grand mother Brockmire took to calling me Gypsy Rose. I was one of so many grand kids she had and she use to sit me down in the afternoon when I could not take a nap yet all the others seemed to have no trouble and say,"Gypsy Rose, gaze into that ball and tell me your story" and I would come up with some concoction just anything to get out of a nap. That early in life I was able to run away and hide in a play world. I suppose I never stopped doing that. This could be a good thing in times of extreme stress. It allows the brain a little time to regroup. If the memory was to bad it just went somewhere in that brain where it no longer frightened me. My grandma believed my brain was special, though just a little off to the left and somewhere that got tucked away until yesterday. She lived a rough life. She raised 10 kids during the depression with a husband who in later years developed Alzheimer's. Grandpa was an unemployed carpenter and would just take off walking to Egypt Mills to find work. My grandma would call my aunt Luella and we would go to find him and give him a ride home. She knew me pretty well but never tried to change me. She died when I was sixteen and never got to see the true Gypsy Rose come out in me as my 'Ol Hippy days emerged. Travel always called me to the next adventure and I see now that even then my brain was not as others but luckily the "Rose" side stepped in to smooth things out. How could she have known this in her point in time? She had a staircase with an ever so tiny air opening into the dining room. I use to sit there and watch her in the kitchen. She'd never let on like she saw me and then would say,"You done dreaming?" "Come down for some koolaid." Sixty three years later I find people who excepted me with all my faults. In that day and time I don't think children were so harsh. One would take care of the other. Don't get me wrong. I have always been the caregiver, but some times there has to be a rose in the flower bed to keep people from walking through and smashing everything and I guess that has been me , on occasion.
My Neurologist tells me I was born with Epilepsy and should have out grown it but never did just developed more somewhere else.You know what, I no longer care. I am what I am in that flower bed and those thorns may come in handy fighting for my causes. The gypsy I hope will keep me moving....and moving and moving. Thank you Grandma Brockmire for all your insight into a little girl with freckles who just loved life real or made Pokie

Thursday, June 24, 2010

Big Little Steps

Tomorrow at 6am i set out to conquer all my shadows in one large swoop before it's too late. After forty five years I am returning to my home town for a class reunion. Nothing against anyone in my class and nothing against the town but it seemed every time a reunion came up I was pregnant or going through a divorce. Nice excuses huh? Inside I still didn't see myself as good enough, pretty enough, fancy enough and wealthy enough to return. Isn't it funny it took Parkinson's Disease, Epilepsy, aging and extra pounds to bring me to my senses. none of that ever should have meant any difference then or later and sure means absolutely nothing now. I wonder what I could have done if God would have given me this self confidence at twenty or even forty. Oh no, he being the joker he is, gives it to me at sixty three where every thing I do I have to work for....nothing comes easy except the unexpected. I never fear I'm not going to make it. I might run out of time or he might just keep me around until I get done, if there is a done. Almost everyday I sit on the edge of my bed and wonder how I am going to face a new challenge and by the end of the day he has gotten me over the hurdle and on to the next. It's like in high school, I could never watch or run the hurdles because I was petrified of falling in the cinders....and now I do hurdles everyday and fall around like a clown. I use to cry if I had to read a paper in front of the class and now you can't shut me up. My car guit on me and mom on the interstate about a month ago and I was in no hurry to repurchase because of the seizure in October. Then I decided that was silly and started the powers to be looking for a Tahoe to get up my hill with leather seats and on star just in case but before it gets here I rented a car for this weekend and I am taking my first major trip on my own since last October...I know I can do it I just have to prove it to not only myself but my family. I don't remember all this proofing at any other time in my life. I probably just didn't pay any attention, but right now I am learning so much more daily than I ever learned daily in college because I want to learn...and every minute is precious because it is here.....thank you and whohoooooo love Pokie

Wednesday, June 23, 2010


I worked all day today on a project I should not have been doing and knew it. Cleaning out a closet in my bedroom and reorganizing in hopes of increased fung-shi and increased sleep. I started at 5am and as with true compulsive behavior, I just kept going till supper tonight. Two steps and sit down, Sit on the bed and vacuum the floor. Scoot the boxes with my grabber down the hall. i was so proud of what i had accomplished. This may be normal for some but not for me. I have my cloths all hanging in one direction and color coded NICE but when I went to lay down and try it out. I still could not roll over. It hurts my left arm. I was extremely uncomfortable. So after all this work which will render me useless tomorrow i am back to the couch. There I have no trouble getting comfortable can roll and my arm does not hurt....go figure. So I have a guest room now if anyone wants to come and visit love Pokie

We're Not In Kansas Anymore

October,2006...June,2010. 267-5011. Just figures or dates that mean nothing, not hardly. October 2006 was when I signed on to, knowing nothing about on line forums, expecially those that dealth with medical issues. 267 was the number of profiles of patients with Parkinson's Disease on the site, then, but only about 10-20 were posting on any given day and often much less. June,2010 is obviously now and 5011 is what we have grown to in such a short span of time. The threads have widened and often become complicated but this shows the true interest and love for this unique forum. We span not only the U.S. but foreign grounds and the mixing of all those diverse cultures took some time and still is taking some time to perfect. Unlike any other site I have visited,there is a since of community and famiy, where you feel you belong and others really care. Congraulations for the site you have produced, the code of ethics you continue to follow, and the storehouse of information you continue to furnish those who have trouble finding it on their own love Pokie

Tuesday, June 22, 2010

A Happy Camper

That's right "a Happy Camper." I used to ask someone how he was doing every time I would see him and every time he would reply, "Oh,I'm a happy camper." He never missed a time. Some thought of him as a grouch, I loved him and he may have had it right. Everyday he did what he loved and was happy for it. That's what I have been doing...Writing, writing, writing....about anything and everything. and my grandson turned two this weekend and we had such a great party at his other grandparents home. We socialized from all ages and even had water ball fights in the back yard..lots of laughs and hugs..right down my alley. My effort to reorganize my home this summer while I can sell, give away and burn is going well. I want it all done before winter sets in. You might think I have plenty of time but you don't realize just how slow I move. I got a new vacuum that moves with a finger so I can push it with my wheelchair if need be. My PDR'S for my Parkinson's, as of this morning, are 22, which is fantastic! and this weekend I will be going to my first class reunion in 45 years...I don't know what has happened, but on returning from New York a new fire seemed to have been lit and I just have really been busy but in that busy getting things done too. All of this behavior is so not Parkinson's. We procrastinate and sleep alot and feel down and hurt, all of which leads to an under productive day. No matter what the reason I hope the Lord continues to let me "Camp"on this campground surrounded by my friends and loved ones...I am having a blast Pokie

Monday, June 21, 2010

The Value of the Internet

A year or so ago this very funny gentlemen called from Texas to let me know him and his wife Marty would be coming to Missouri and since I was on the Interstate in Illinois could they treat me to a cup of coffee. My answer was a resounding yes. So maybe you are wondering what is so extra special about this. Well, Victor (V-Wig) , and I are members of an ever increasing number of chronically ill patients who have met on the internet and at some point travel to meet each other. Five years ago this would have been unheard of and even in 2008 when I made my first trip to Atlanta by car fom Illinois with a preplanned list of people to meet from our site, my children raised one "x@!?> of a fight about me heading out on my own o meet total strangers FROM THE INTERNET.....well total stangers they were not. As you can see by this picturem we were quite happy with each others company and had never met before that day but had spent endless hours discussing our illnesses and clowning around with no one to tell us we were just to sick or old to do "That." We would meet for virtual "Coffee" in the morning before we started our day. One morning we went step by step as one of our friends took us through charging up her DBS System in chat. We're not looking for dates (husbands or wives) just a hug across the miles for both patient and caregiver. Victor and Marty have been happily married for years for sure.
Then there is a little gal I meet off and on when her family are traveling from Montana to the East Coast to visit her family. They pull their mobile trailer on to Walmart parking lot and give me a call. I go pick up a bucket of chicken and all the fixings and when I get their Jodi, her three daughters and her husband have the string lights up outside welcoming me in for supper.
In 2008 I traveled to Denver to a Davis Phinney Meeting and met one person from the site then flew on to California and stayed with another and one came down from La Honda and we all traveled around San Francisco for a couple of days. I went to Atlanta and stopped twice to meet two members and their families. In Atlanta I met so many more at the YOPN Conference.
Then off to the Unity Walk that year and so many from the site and last of all that year to Indianapolis, Columbus and Cleveland for a week to celebrate a 76 year old dear friends birthday in the winter.
To some this seems so silly. To just throw this money away. It is never useless folly. I'm not rich by anymeans, but I really know how to save and so save I do. The smiles and hugs are worth all the gold in the world to me and I suppose they are to those I visit also. Just to be able to talk honest , face to face with someone who is going through what you are after you have become such close friends on the Internet is so, so special to all of us...Pokie

"Not On My Watch"

Here we are and it is Monday morning. We are starting a new week . Let's start a new attitude ....Clean, clean clean. We can no longer trust our health care providers to treat us in the cleanest and most sanitary fashion. This is not the eighteen hundreds and we are not in the middle of "Little House on the Prairie". Diseases exist that there is no cure for and they lurk in hospitals where you once went for safety for a cure. They lie in waiting for the unsuspecting patient who believes their environment is clean and safe. Far to often a patient goes in for elective surgery and dies from infection during or after their stay from waht is called HAI or Hoapital Associated Infection This is preventable. Never let a doctor or nurse touch you without first washing their hands or disinfecting them... and you do likewise as should your caregivers who are staying with you in the hospital. Keep the gel and wipes with you at all times and use continually. For more information please go to Be safe...Use wipes...Love ya Pokie

Saturday, June 19, 2010

Ah, Blessed Peace and Quiet

All sixteen quilt panels made it safely to New York City today with their stories attached. I have slept and ate with them for many months and now am at quite a loss. This always happens. It's just me. I throw myself into a project and just cannot put it down and when it is done I am lost until(which is never long)I start a new project. This is the time I read and sleep. Yes, that is right, when I am in the middle of a project, sleep and all diversions are cut off until it is done....true compulsive behavior. As usual today I was reading Helen Lowrie Marshall and this is what I came across and it seemed something that really needed to be passed on tonight.
You never know when someone
May catch a dream from you.
You never know when a little word
Or something you may do
May open up the windows
of a mind that seeks the light....
The way you live may not matter at all,
But you never might.
And just in case it could be
That another's life through you,
Might possibly change for the better
With a broader and brighter view,
It seems it might be worth a try
At pointing a way to the right....
Of course, it may not matter at all,
But then again it might! Helen L Marshall
Now you see how my life goes and I have full well learned to adjust. I pour all I have in till I am almost exhausted BUT that seems to completely clear the brain so the new thoughts come rushing in like fresh linen flapping in the wind on a very sunny day. This way of living is the only way I can survive. I can not tell you how invigorating this is to me.....silly. huh?
Well I can't tell you what my next project will be. I'm thinking about "A Family Day in The Park For Health" still in the thought stage.....but as for now I think I will go to bed and dream of new adventures to be had in "PD'ville" love Pokie

Monday, June 14, 2010

Old Soldiers

"Old Soldiers never Die" and my Dad use to say, "Everything around here just about works" and we use to turn our heads and mumble. Lately this is a daily chant in my world. I have so many things I would like to do and either physically or mentally cannot complete them. And then the interruptions. It's summer and my house is like Grand Central Station and everyone has a comment that they think I need to answer....alas there goes my train of thought and I have to start all over again...But there is a bright side to this. My lap top went down three days ago and I thought it was the end of the world but it was only the end of VISTA and back to GOOD 'OL XP. The power went off last night for four hours but when my printer came on it has never printed better. Maybe everything just needed a good cleaning out or vacation. I hope people think twice before they put me on the shelf for a newer model. I hope they make sure every drop of wisdom I could possibly pass on to my grandkids has been drained out and saved in a time capsule for later cross referencing. I hope they take a month or so and plunder through my writings and laugh or cry as they go. I so hope my life has not been in vain and that I made my family and my maker Pokie

Wednesday, June 9, 2010

Just a Short Thought on the Gulf

A sweet little gal who lives in the South and whom I meet up with every year at the Unity Walk sent me a note yesterday and I know where she is coming from. She goes by Staying Strong and that is what she is trying to do as her life as she knows it crumbles. Her quote was:
"So where are all the "Save the Gulf" concerts? Where are the T.V. benefits with celebrities and musicians giving speeches on the poor fisherman, wildlife, beaches and sabotaged gulf economy?"I am wondering the same thing. Why are we so quick to help other countries and not or own. Is there not enough glory in working for the underprivileged, or homeless. We are faced with the loss of the very beginning of our food chain. The thing is the loss is there. The wet lands are gone.

Second when a hurricane decides to come in to the Gulf this year, have you thought anything about what hurricanes do besides tear up property.......they suck up water and deposit it somewhere else. OILY WATER.....

How many years did it take God to grow that Lauger Turtle that is trying to get to her home beach to lay the next generation of eggs? If she makes it through the oil, are the eggs contaminated and then where does she a certain death. All for the almighty dollar. Pokie

Tuesday, June 8, 2010

Bringing the patient voice into research Today With PokieToo and Parkinson's Disease - Formatting Settings

Sunday, June 6, 2010

Special Moments for Old Hippies

How many ways can I thank you for the wonderful weekend you have presented me. I am so lucky to live in the St.Louis viewing area for PBS and have grown up, as have most all in this area, taking PBS for granted, just knowing it was the place to go everyday. This weekend I continually listened to your, or our, musical walk through life. The Canadian Tenors, the Straight Shooters, and glorious James Taylor and Carol King. I have laughed and cried and just simply let my mind wander to places it had not visited in forty years, at least. How did you know this was the weekend I needed this? I quess a true friend always knows those things. I have advanced Parkinson's Disease and fight it hard every day while I push myself to just keep moving. You took me to places I had forgotten and the date I shared with you was excellent to say the least. Please keep up the good are right on track! love always Pokie

Thursday, June 3, 2010

Mixed Signals

I wish I could understand the message that is being sent to me today or maybe there is no message and my wires are just shorting out somewhere in time. I am working on the last panel for PLM's Parkinson's Quilt Project(number 16). The title is "Thanks" and my idea was to list the different organizations and companies who help PD patients survive in some sort of colorful way and this is how it went. I ran out of transfer paper because all the lettering kept coming out backwards so I decided to copy the different logos by going to each web site or cutting up my pamphlets and using them. Then I was faced with how to make them stick to material and be waterproof......As Oprah would say, I had a "A..Ha..Moment". The old reliable ziplock bags. I cut out each logo and put them in a ziplock bag, folded to the back to make it viewable and then taped it shut with scotch tape on the back then stitched each square onto the back panel with a whip stitch on my machine. And speaking of machines......Mine has decided to use it's own mind. When it thinks my ideas are TOO crazy it stops, breaks thread or WILL NOT BE THREADED. All of the above situations just really get my PD wound tight early in the morning or very late at night. Well I have vented a little and I will go back and get this DONE!!!!!!

Well it is now 12:45A.M. and I just took a picture of my new creation. I have been working on this solid for two days....I wish I had just one dollar for every time I threaded my sewing machine or filled a new bobbin. I can just keep on deaming because I am very sure there is no money coming my way....I wish I had some ice cream I would celebrate but nope. So I think I'll setttle for hot chocolate and put myuself to bed. Tomorrow is another Pokie

Tuesday, June 1, 2010

In Explanation of MY Panels for PDF

I happen to think last night that with all the articles I have written for the other panels and walks and teams I have not wrote a thing explaining my panels and their beginnings and endings. The first was the "Christmas in Parkinsonville" which started much, much simpler and smaller in January when I was very much snowed in on top of a very steep hill with no hope of getting out for a month or so. As cabin fever crept in, I decided on my panel theme and started tearing an old vest apart for material. At this point it was hanging on the wall in my study an I would pin things to the material as I found something that interested me BUT soon I began getting up in the middle of the night and gluing and stitching. I knew I was exibiting true excessive compulsive behavior but since the panel was to be about me I let it run rampant. Next things began appearing on top of other things. Something would fall off and I would have to hand stitch it on again.....Colors clashed and appeared non perfect. Stitches changed from night to day in size and beauty but when it was finally done and in all of it's imperfection I realized I had really grasped the idea of Parkinson's Disease at Christmas or any other time of the adult mind allowing the child mind inside to come out and play for a day and then at night the adult and child minds to be able to settle down and smile at the resulting accomplishments. This was my first square in January......

Then I stopped all sewing in preparation for the 2010 Parkinson Unity Walk in New York City. In my life nothing ranks higher and all focus heads there most of the year. As our team developed and contributions came in my enthusiasm just usually goes of the charts and leaves room for nothing else in my life. With Team Patientslikeme reaching $14,000.00 Dollars for research and the trip of a lifetime lived, I was back home to sew and realized I was several panels short of 16 for a full you know me. I shut down everything else and sewed for almost a month.

From that sewing came "To All PD Heroes Who Have Fallen", "A Walk in the Park for Parkinson's Disease" "One on One"and the one I am working on to finish now "Thanks" and I loved every minute of it.

Several people along the way sent me belongings or pictures and I made squares for them, V Wig and Peter and next Saturday they will leave my care for New York and the world. It will be much like sending your children off to college for me and leaves me to wonder what next, Who Knows love ya Pokie

Monday, May 31, 2010

Memorial Day from the Sidelines Today With PokieToo and Parkinson's Disease - Formatting Settings

I don't believe, if I had planned it, I could have had a better Memorial Day weekend and it is not over yet. As you know I am blessed with three children and five grandchildren and the farm has been the place to be this weekend. As time goes on and my place becomes more secure on the sidelines I can observe the formation of new patterns to be followed in my passing. Patterns I planned and dreamed of years before. I always wanted my ground to be a haven for my family at all times, a quiet sanctuary for all ages, where one could sit and listen to the sounds of nature and become relaxed and carefree. I wanted small children to learn the amazement of frolicking squirrels, jumping from tree to tree and cutting their tails back and forth over their heads. I wanted them to be amazed when they filled the bird feeder and watched the squirrel jump ten feet, with so much precision, and reach his goal every time.
Well those dreams and more came true this weekend while I watch from a very special seat at our lake in the back forty. My grandson, Brendan, hatched two geese out in an incubator and has been taking them to the lake with him daily to teach them how to to swim. Now you and I know that it is an inherited trait for geese to know how to swim at birth but it is only too cute to watch them come out of their pen and follow Brendan down the path to the pond where he gets in and they follow. They all swim around all day and in the evening they follow him back to the barn and get in their pen......Then on the other side of the fence we have "Quack" their mom who has no idea she is a duck, nor does she know she can fly and really has no desire to. Brendan turns her out of the pen and she follows him to the pond too but goes to the other side and does her thing. She stays as long as she likes and walks back to the pen on her own...whenever. She waits on the porch of the pen till someone comes along and lets her in.....
Since I spend all my nights in a recliner next to the front window, the girls put a huge bird feeder outside this window to watch the early morning traffic and now the squirrels not only have bird competition but I have a mother quail and four babies feeding on what the squirrel would be wasting. Many of my hours are spent in front of this window sewing and watching and communing with nature and God.
I have so many thoughts for today but to keep it short I must say, how blessed I am to have what I have and how saddened I am by the oil spill. This will never be righted. These people have lost all......there heritage, their peace and solitude.....please pray for a solution where I see no solution can be made. It seems daily I am confronted with all these things that sadden me greatly and I can find nothing to do about them....but I have not given up hope. I donated my car to the Salvation Army the other day, and donations to everything is made constantly and soon clothing will hit the road for several destinations.......As long as my mind keep working and the dreams keep coming I will keep finding solutions to some of the little problems that are out there. Maybe the sidelines are good . Could you take a box today and fill it for Good Will or Charity, just one box? It will make you feel needed. It will make you part of the fix instead of part of the problem. Think about it from the sidelines.......and by the way did you see "Big Albert" hit THREE home runs in the Cardinal/Cubs game yesterday? Happy Memorial Day to me Love ya Pokie

Sunday, May 30, 2010


Surely it has not been that long since I have made an entry on this blog. Did I not tell you that our team came in thirteenth in the Parkinson Unity Walk in New York city with almost $14,000.00 dollars our little team collected in four months. We will do even better next year since we are already starting our efforts and thoughts for next year.

I had just a few family matters to handle when I came back and I had the Parkinson Unity Quilt for PDF to finish. I have sewn 2 foot panels non stop for almost a month and can say I am now done. Sixteen ready to ship after the last pictures and boxing today. I just had to stop everything and devote all my brain to this project to succeed. I not only had to sew but come up with ideas and make them permanent for two years of travel, thus a lot of hand sewing. This was nothing like I have ever been involved with but I thoroughly enjoyed every second.

I hope to be much more reliable with my posting because I have some things I have been contacted about I would like to pass on in the near future.....Bear with me, while I get a little second or third ya pokie

Tuesday, May 11, 2010

Around the World in Purple Today With Though Purple day has come and gone I quess you know it will never be far from my heart. after last October seventh when once again I went down with a grand mal seizure which landed me in the hospital for a week and more tests and more medication. I had suffered two seizures in 1996 and actually died but had no more and assumed they had diagnosed me wrong....Wrong!!!!! As time goes on this year I hope to become more and more involved in the community and be able to figure out the many different kinds of seizures and their effects on the body and pass them on to you. I can tell you that has open a new Epilepsy site that is thriving and I am a new member about to become a PRO 3 status which I am very proud of. That means I have filled and kept my profile and records up to date for a given length of time. The information I have already learned there is huge....more later love Pokie

Sunday, May 9, 2010

CHRONIC PAIN Today With PokieToo and Parkinson's Disease - Formatting Settings

Wesser Pain Management Clinic at Mt. Sinai Hospital in Toronto, Canada is running a study on the links between pain and day to day social and psychological events in people with chronic pain. The study involves an initial two hours spent viewing a video and filling out forms and then you are on your way. For three weeks, three times a day, breakfast lunch and supper, you log in your mood and pain which should take you a matter of minutes. At the end of the study, you receive a detailed copy of reports and graphs for participating. If interested contact http://www.mountsinai.on,ca
Their address is:
Mount Sinia Hospital
Joseph and Wolph Lebovic Health Complex
600 University Ave.
Toronto, Canada MSG 1x5t

Saturday, May 8, 2010

"Judy 07" Today With PokieToo and Parkinson's Disease - Formatting Settings

I have so many things to remember this quiet spoken little lady for. First there were teapots. That's right. I believe she collects teapots and the fist quilt experience with her she did a teapot on a blue background.....just beautiful. When I posted to start this project, Judy was the first to respond, "Pokie, I am making a square."This is what she attached to it when she sent it:

"My panel is a tribute to my faith, family and friends who have accompanied me through my life's journey of joy and sorrows, grief and anger, and now Parkinson's. Parkinson's is slowly stealing my strength, thoughts and words. However...My faith, family and friends will accompany me on this journey also. As they always have and always will. Turning despair into hope, anger into acceptance, and grief into a quiet joy.....I AM TRULY BLESSED"

I will never forget looking up and there was Judy at the Unity Walk this Year just glowing. Her daughters had givern her the trip to New York City and one had met her there to show her around....Parkinson's is not slowing her up on ya Pokie

"Mongoose 55" Today With PokieToo and Parkinson's Disease - Formatting Settings

I was just totally blown away when I opened this package. Embroidery is one thing and then there is embroidery. Every inch of this is stitched with words from friends. This is what she wrote me,
"When I decided to make a panel I came up with the theme, 'Parkinson's doesn't define me,' I was going to embroidery words on the panel that I would use to describe me, but I could only come up with about five, so I made the tulips and sent them to friends and family asking them to write a word to define me. I was expecting things like, short, freckled, Irish, something one word each.

Instead, people wrote longer and very nice things about me. It was very sweet and touching, but it really wasn't WORDS to define m. So I decided to change my theme to "See me, not my Symptoms" Once I did that, it seemed I had to explain the tulips which is why I wrote on the flowers my thoughts. I added the ladybugs because I love ladybugs and I wanted to add something personal but also my name Donna, means Lady and legion has it that ladybugs were named for the Blessed Mother and so was I......

Now just how beautiful is that? Love Pokie

Thursday, May 6, 2010

Lyme Awareness Month Today With PokieToo and Parkinson's Disease - Formatting Settings

Yes, right after National Parkinson's Awareness Month is National Lyme Awareness month and I have a very dear friend who fights this disease with all she has body and soul. We started our journey four years ago on where we had both just stated posting on the Parkinson's forum. At that time it was a small very close knit group. Now we have grown to over 5,000 but those original members are still very close as Karen and I are. In that four years she has went from a diagnoses of PARKINSON'S to MSA to LYMES. actually her first lyme test came back negitive but she persisted and changed testing companies and doctors and got her final diagnoses and did not miss a beat in her determination to make America aware of the crisis that is upon us in this country. I live in a very rural setting where I have been all my life and honestly cannot tell you how many times me and my family have been bitten. Here it seems to be a right of passage into adulthood. Twice a year the ticks come...Spring and Fall. They get on all of us. We check heads, back of knees and waist bands daily of all kids and ourselves. All animals get meds and dipped or dusted(both great for humans, kidding) and you go on to the next season. WRONG!
People are now finding that they have been diagnosed with Parkinson's and actually had Lymes all along. The symptoms are the same the treatment is not. The treatment is high, continued doses of antibiotics....and believe me if you have let it go for a while it is a life threating, very hard disease to fight. The epidemic is so huge and the treatment so controversal that often patients are treated in secret and today I learned this disturbing fact which preempted me to write this article. If a group ever needed a safe environment to connect and discuss their problems and solutions on the internet, it is the Lymes Community and their forum is wanting to charge them $600.00 a year to participate. TOTALLY OUTRAGEOUS......
There is a film called "Under My Skin" get it and listen to every bit of it. Igenic is the testing physicality and the blog you need to be following is Metamorphis of a Butterfly.
The bottom line is don't let anyone tell you that there are no ticks in your area. They are everywhere...rural and cities.....inside and out..yards and woods. If you get a bite go to the doctor immediately and if the tick is removed take it along for testing. It's better to be safe than sorry and what they don't tell you is it is an extremely expensive disease to treat and can be Pokie

Today With PokieToo and Parkinson's and Acute RA Disease