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

Today With PokieToo and Parkinson's and Acute RA Disease