17,000 views.....thank you

Little did I realize that at this posting I have posted to this blog 299 articles in five years. My how time flies when life is pulling you onward. Since that faithful first post all those years ago, I have had both knees replaced, my right hip replaced, and last March I celebrated my 65th birthday by having my left shoulder replaced through reverse rotor cup surgery. Now eight months later I feel at loss. I feel the need to write but also feel the need for it to be pure and not used to further anyone or any disease group. I write for suffers of Parkinson. I write for persons who suffer from seizures, be they medically or genetically induced. I write for those who never have a painless day and we are talking severe pain. In this discussion I am not referring to individuals, like me, who are just trying to get the news out. I will never again,promote and work day and night for a group who takes the money I bring in for them and use it for padding their payroll. This is why you will always see me support the April Unity Walk in Central Park, NY. ONE HUNDRED PERCENT OF DONATIONS GOES TO RESEARCH. I have worked with them since 2009 and hope to go again this coming April. Yes for those who have ask I will try to do videos for your use. No I do not have guest writers on my blog. I will consider your article and send readers in your direction......This blog and "Coffee With Pokie" are my babies and the labor for birth has been hard and long. I could never have reached my physical or mental state were it not for PatientsLikeMe.com, The Parkinson's Unity Walk, and my many friends and followers on Facebook, Twitter and just plain internet. Much to my amazement some 17,000 people have viewed my sites and I would like to thank you one and all and hope you continue to view my writing as informational and understanding. I pray for God's help to serve you well. Love Pokie

Extra Steps

I'm rather ashamed of myself tonight.  I had just one of those days and despite the weather being nice I slept....knowing full well that will keep me up all night tonight and grandma, who lives down stairs, will be hearing me as I try to tiptoe around above her. Tomorrow morning, early, she will be up for breakfast and coffee and I will be the bear on the couch.   No exercise is terrible for me.  I have to walk everyday.  Not just a moderate stroll, but a all out walk and sweat.  If I do not, I loose no weight or my weight goes up whether I eat or not.  Do not believe I enjoy exercise because for the most part I do not,  but I know I cannot stop or I will be bead fast and rapidly. walking in a gym(basketball court)did nothing for me so I switched to the park with much more success. I have never been athletic but every so often I feel the urge to run....I have not, but I bet I do and remember running is easier that flying which I would also like to do . On days when I am particularly stressed or down, I dream of flying when I fall asleep.  The wind is always blowing through my hair and I AM HAPPY. Well mainly I am rambling and my left hand is giving me a lot off double letters.  Take some extra steps for me tonight and I will take some for you and together we will battle and win against PD.   love ya pokie

THERACYCLE...YES

I have had an amazing journey in my mind today.  I really didn't think yesterday could be beaten but here we go.....We have had two days of beautiful sunshine in Illinois and that has always made me feel like God's pay back for my patience.  Yesterday I received an email from a gentleman representing THERACYCLE....Yes, "THE THERACYCLE" .  They have received recognition from NIH and they wanted my feedback on a cheaper model for PD patients.  The funny part is, I have been following them for over a year after seeing a PBS special on quadriplegics (Francesco Clark) who were using the Gygerrmed from Germany with great success. Neither machine could I afford. , but the theory was good...I will add more later, but check this out....http://blog.theracycle.com/?p=23   love ya Pokie

THE YELLOW SHIRT

This will take me forever to type but I believe in it so strongly that I am hand typing it to pass it on. In all these years, I have never learned to copy and paste or cut and paste. A very dear longtime friend and I finally talked by phone last week and today she sent me this. I cried, as I am sure you will so bare with me, please to the end.

It takes a few minutes to read but I think you will enjoy it as much as I did. Wish I had done something like this years ago.

The yellow shirt, had long sleeves, four extra large pockets trimmed with black thread and snaps in front. It was faded from years of wear, but still in decent shape. I found it in 1963 when I was home from college on Christmas break, rummaging through bags of cloths mom intended to give away... 'you're not taking that old thing, are you?' Mom said when she saw me packing the yellow shirt. ' I wore that when I was pregnant with your brother in 1954.'

'It's just the thing to wear over my cloths during art class, mom, thanks.' I slipped into mt suitcase before she could object. The yellow shirt became a part of college wardrobe. I loved it. After graduation I moved into my new apartment and I wore the shirt the day I moved and on Saturday mornings when I cleaned.

The next year, I married. When I became pregnant, I wore the shirt during fat days. I missed my mom and the rest of the family, since we were in Colorado and they were in Illinois. But that shirt helped I smiled remembering that mother had worn it 25 years earlier.

That Christmas , mindful of the warm feelings the shirt had given me, I patched the elbow, wrapped it in holiday paper and sent it to mom. When mom wrote back, she thanked me for the 'real gifts' and never mentioned it again.

The next year my husband , daughter and I stopped at mom's and dad's to pick up some furniture. Days later when we opened the crate for the the kitchen table ,I noticed something yellow taped to it's bottom.......The Yellow Shirt! And so the pattern was set.

On our next visit home, I secretly placed the shirt under mom and dad's mattress. I don't know how long it took her to find it, but almost two years passe before I discovered it under the base of our living room floor lamp. The yellow shirt was just what I needed while refinishing furniture......The walnut stains added character.

In 1975 my husband and I divorced. With my three children I prepared to move back to Illinois. As I packed, a deep depression overtook me. I wondered if I could find a job. I paged through my Bible, looking for comfort. In Ephesians, I read, 'So use every piece of God's armor to resist the enemy whenever he attacks, and when it is over, you will be standing up.' I tried to picture myself wearing God's armor but all I saw was the stained yellow shirt. Slowly it dawned on me ..... Wasn't mom's love a piece of God's armor? My courage was renewed.

Unpacking in our new home I knew I had to get the shirt back to mother. The next time I visited her I tucked it in her dresser drawer. Meanwhile, I found a good job at a radio station and a year later I found the yellow shirt hidden in a rag bag in my cleaning closet. Something new had been added. Embroidered in bright green across the breast pocket were the words....I BELONG TO PAT.....Not to be outdone, I added an apostrophe and seven more letters. Now the shirt proudly proclaimed.....I BELONG TO PAT'S MOTHER. and then I zig zagged all the frayed seams and had a friend mail the shirt, in a fancy box to my mom from Arlington, Va. we enclosed an official looking letter from 'The Institute for the Destitute announcing she was the recipient of an award for good deeds. I wish I could have seen her face when she opened the box but of course she never mentioned it.

Two years later, in 1978 I remarried and on that day Harold and I put our car in a friends garage to avoid practical jokes. After the wedding, we were traveling on our honeymoon and I reached in the back seat for a pillow to rest my head and it felt lumpy. I unzipped the pillow case and wrapped in wedding paper in the inside was the yellow shirt with this note in the pocket. Read John 14:27-29....I love you both, Mother.

That night I paged through my Bible and found the verses,'I am leaving you with a gift: peace of mind and heart. And the peace I give isn't fragile like the peace the world gives....So don't be troubled or afraid. Remember what I told you, I am going away but I will come back to you again. If you really love me, you will be very happy for me, for now I can go to the Father, who is greater than I am....I have told you these things before they happen so that when they do, you will believe me.'

The shirt was mother's final gift. She had known for three months she had terminal Lou Gehring's Disease. Mother died the following year at age 57.

I was tempted to send the yellow shirt with her to her grave but, I'm glad I didn't because it is a vivid reminder of the love filled game she and I played for 16 years. Besides my oldest daughter is now in college and majoring in art and every art student needs a baggy yellow shirt with big pockets........

FAITH IS THE PAUSE BETWEEN GOD'S PLAN AND SEEING IT COME TO PASS!!!!!!!

Have a wonderful Sunday and thank your Lord for all your yellow shirts......Amen

I am on the right side

The question is ask to me daily how I went from a wheel chair to walking in ten months. The answer is that I didn't. My Lord and Savior had me on his arm continually. Nothing I have done or went through in that span of time has been without him. At one point I told someone very close to me that I thought I was Bi Polar and he chuckled and ask "Why?" I answered because I hear a voice and he laughs and he's serious but he talks to me when I ask questions and tells me what to do. My friends answer was this, "Honey, that is God and you are so blessed to be hearing his voice and you will be even more blessed if you listen and follow what he says." As crazy as it may sound, I am in moment to moment care and conversation. When I stray, I can feel him laugh at the results and then he tries again. I am so fortunate to have friends who can explain the Bible to me and one gave me an educators Bible in large print. It is one of my constant companions. I will not and can not tell you I am without pain BUT......my pain is tolerable and nothing like what I use to have and that pain keeps me honest, as my dad use to say. I ask to be healed and God answered, "You are!" and I feel I am a healing in process. I take one Azilect, one aspirin,a multivitamin and one meloxicam a day. If I overdo it I may have to take one low dose hydrocordone for pain and I take a fourth of a Zanex to sleep. I take no more than this as adverse to 42 pills a day I use to be on....No seizure meds at all. Through all of this I have had a Neurologist who listens to me intently and weights my suggestions and we have a joint care of me.....At one point I had to go off all meds and it was hard and yes I went through seizures but those times are over. Occasionally on a very stressful day I will have nocturnal seizures. I have not had these in quite some time and absolutely no jurking like I had on the 42 pills. I am in no way advocating my medicine proceedure or the way I am attacking my disease, BUT I have found PD is constantly telling me what I can not do and making me so tired I just give up and go back to bed(I use to) DON'T. Muster everything you can and get up. Even if the walk you take is around your house, WALK. For every pound you loose find something that weighs that and make a pile and once a week put those things in a sack and lift them....That is what you were carrying around...no wonder you could not walk. I tried to lift a 30 pound weight on both sides and take a step and could not even budge...No wonder.
The most important part of this journey has been my faith and the blossoming of my understanding. Ten months ago I had a bucket list and was marking off the things to do before I died. Yes, me "OL Perky Pokie".... NOT..... I did not want to go on and even with the thousands of friends I had, I felt alone, confused and done. But God was not done with me. Four times I have died since 1996 and two times I was the color of new blue jeans when they got me revived. Each death took me to a new life I had never done before. I had never wrote a word before 2007 and for sure not on the internet. One Neurologist called me a Neurological Mess. He explained I was born with juvenile epilepsy, which I never outgrew. Then developed another form later along with Parkinson's and he after thirty years of doctoring could not help me......Too bad he should see me now! As I said my God Send has been Dr. Max Benzequen and shall always be. My advice is to find a doctor you love and trust. To do this you may have to go through many. I went through eleven specialist in one year....and pray constantly for help. If you don't ask you will not receive. God is your Shepard. He will lead you to greener pastures with sunshine everyday........Love ya always Pokie

Fly, Walk, Run?

January 15......My Oh, My doesn't time fly when your having fun? I had no idea that I would stop writing when I had my hip replaced. It seems I have become very "Un- multitasking" The days seems to fly by way to fast. Maybe is the fact that I will be 64 on the fourteenth, but I doubt it. Really, I have not gotten around so well in many years and after loosing over fifty pounds, I believe I am looking better. I haven't conquered all my demons yet but am certainly trying hard. I made it to the high alter for communion this last Sunday. That is the first time in ten years at least. I was in a wheel chair eight months ago and could not even think of kneeling. As I progress along in this journey, questions get answered only to have others pop up. I could not have reached the success I have without my very close friends and most of all God. So often I think "Can't" and he tells me "Come on" instead. Pain comes and goes but I am so much better and have went from 42 pills a day to 5 and they are all vitamins of one sort or another.

I exercise whether I think I can or not. If I don't exercise one day I cannot move the next day......especially walking. I have even ran (Very awkwardly) for several feet last weekend. Most people who cannot walk dream of flying and I use to but now dream of running. I don't dream of marathons but I figure this is God's new goal for me. The hardest part is the pain in my shoulders and upper body...I have lost my strength in my left arm in particular and have do do lots of pull-ups just to stay mobile and they hurt, big time. BUT, my closest friend keeps reminding me that without pain I will have no gains.

My problem with everything else at the minute is.......admitting I am sick. Sound silly? I have been sick so long I just cannot bring myself to think of going back there and so I say little and try to understand my feelings. I have had some set backs and bouts with depression but all in all I am so much better. Surely as time goes on I will get it all straightened out and things will go back to normal........maybe not! God definitely has me on a new mission in life and I have never let him down yet. At 64 is no time to start.

I will write more as things continue to unfold.........love ya Pokie

If you love life...fight for it

Check this out and be prepared to start out crying and end up cheering for my new idol in this never ending battle against Parkinson's, arthritis and everything else that just keeps me from walking and doing what I really want to do. Look at that look on Larry's face! I have felt that look. I have seen the world through those eyes......and I am and continue to fight for life as I love it. No I am not too crippled. No I am not too old and No my life is not all about PD but it is about mobility in any form and through that mobility...... TOUCHING......always love Pokie
www.ridewithlarry movie.com-is the link and a couple of articles to check out are:
1http://www.sandiago.com/arts/san-diago-filmmaker-focuses-on-parkinson-s-disease
2.http://www.nhregister.com/articles/2011//01/09news/metro/doc4d2936D585aaf387934027.txt?viewmode=full story.

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 2009....my 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 have...love Pokie

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 charging......so 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 myself...........................love ya always Pokie

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 Being.....love Pokie

NEVER EVER GIVE UP IN LIFE

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 loafing...it 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.

YOU RAISE ME UP

"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 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

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 Patientslikeme.com. 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 Patientslikeme.com for giving us a home to flourish from........As always Pokie

Fairies at Play

REALITY

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

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 PatientsLikeMe.com., 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 Patientslikeme.com 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

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 http://Patientslikeme.com . 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:

THE KNOTS PRAYER

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

Amen.

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

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 groaning...love ya Pokie

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

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 up.....love Pokie

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