What a beautiful day....

When you have a day like today, there is no doubt that the earth was created by a higher power. No matter who we consider that to be, while following our particular faith. I defy anyone to sit in the warm glow of the sun with a gentle breeze touching you ever so slightly and not marvel at the experience of living. This winter has been so hard for a normal person to get around let alone a person whose every step is a challenge. The bitter cold made every bone in my body ache and the cold cloudy days tempted me into bouts of depression surely caused by lack of sunlight. It's so hard while in the midst of such hard times to see the light at the end of the tunnel and not believe you should turn and run because the light is surely another train coming. And then comes Spring. And just as a mother does with labor pains, all is forgotten and a new season is begun. My thought is that if every mother remembered the severity of labor pains no more children would be born but when we see the results the bad is forgotten and the good comes through just as Winter flow into Spring. I believe in the ying and yang of life...the good an the bad. I try to always look for the good but know that the bad must be there to make us appreciated the plan of it all. I am on this incredible journey to the end of my life and I defy anyone to take this experience away from me. My Lord and I walk hand in hand through the sun and rain some times laughing and sometimes crying but always together. There's a song, "One is the loneliest number that you've ever heard" and no truer words have been sung but we need not ever be alone. Even with death the prospect of life ever after in beautiful heaven is so appealing. You see my journey will soon take me to NYC. Me this 61 year old woman from Illinois has taken all the money I could muster and am flying to NYC because I BELIEVE. April 26th I will board a plane in St Louis, Missouri and fly to New York City for two days to participate in the annual Parkinson's Unity Walk. Who would have ever believed that this could be happening to me? I started early this morning trying to get my computer skills to respond to my brain so I could log my daily experiences in for anyone to read and finally at four in the afternoon the two are in rhythm and I am typing. Though the brain is making an effort to wander the thoughts are flowing well. So back to the walk. We (people who know and care about Parkinson's) have collected over one million dollars this year already and we have a week to go before the walk. At my favorite site Patientslikeme.com the enthusiasm is running high and each of us is in the pursuit of a cure. The more we get involved the easier the day is to endure and the more e can show the world how important we are to this earth. We have Tomte Woman and Butterflynana working on the badges to be carried in the walk in honor of those who could not attend. We have Tom and Lady Hawk and Judy and I and Dixie walking on teams like the Patientslikeme Team. We are making and going past or goals and dreams. The site has set their minds to help us at every turn as a family does. No question is too small for the team behind the screen; Our Devine Ms.M and Mr.T and Paul. Then our cheering squad...every member be they old or new catches on to the feeling and spurs each other on...From all over the world we are operating in such harmony and peace and our days are going by very fast instead of the never ending hours we went through before. I will try to bring this post to a close though I can talk for ever about my friends. They are the sunshine that brings the Spring to my life. I invite you to visit us or if you will go to the 2008 Parkinson's Unity Walk site and make a donation for someone you love. There are so many of us being diagnosed every day with this deadly disease and there is no cure...but there will be. Obviously... the previous was from April when I traveled to NYC but the message is still good as are times. The site has grown to a huge 2000 plus posters and members and growing daily. Th information circulating is just unbelievable and once again I am planning to travel. This time I am traveling to Atlanta, Georgia for the Annual Young Onset Parkinson's Convention. This like NYC will be my first time and though I have no idea what to expect, my emotions are just unbelievably high. So with this new blog, I start a new adventure....I christen this site "Coffee with Pokie" inspired by one of my closest friends on the site Karen (butterflynana). Her undying love and encouragement keep me going when I pray for strength....Her laugh can surely melt ice in some far away land and though usually racked with pain she always has time for a friend. I am also dedicating this to my dad (grampa)who I feel next to me laughing often late at night when the words start to flow. Someone said, "Pokie I see angels" and how lucky am I to have them both on earth and heaven cheering for me. love always, pokie

I will be better today....

People who know me know that I am a night person and late at night or very early in the morning I read poetry and one of my favorite poets is Helen Lowrie Marshall. Needing a little cheering, I turned to her this morning and this is what she had to say: BEYOND MEASURE How can one measure friendships.. the firm, warm clasp of a hand The comfort found in the welcome sound Of the words, "I understand?" How can one measure courage... the strength we find to fight, To suffer life's anxieties, To stand up for the right How can one measure beauty, hope, Or happiness, or love? What man made measure can encompass Faith in God above? So much of life...the best of life... The things we truely treasure, Are these, the gifts of boundless depth Beyond all earthly measure. H. L. Marshall ...And so after passing this on, my mood has definately lightened and the prospect of a new and better day looks very good.....

ME TOO JACK.......

....I went to one of my favorite places tonight and a very special friend had left a poem behind for me to read. Ordinarily I would have said, "Thats nice," and went on to something else but as true friends often do, he caught me off guard and this is the result: Jack is a very intelligent, well educated man and his emotions run very deep, yet he has the aura of simplicity amidst extreme turmoil. His question was "If only I was content with how things are" and it set forth such a flood of emotion within me, Just two words had caught me at one of those rare moments when I knew just exactly what he was saying and my answer was,"me Too Jack!" I went to my granddaughters track meet today, no big thing for most but you either sit or stand at these events and since standing was out of the question, sit I must in the bleachers. They motioned me on and I took a deep breath and grabbed an arm and made it up to the seventh row only to sit there the whole time and wonder how I would get back down. When the time came I had someone on each side and we very cautiously went back down the stairs while all around me I could hear the thought,"Gosh, She's gotten worse." and you know, Jack, she has. You never know when you start into one of these moods if it will be a free fall or just a stumble. But for the first time I envied those that walked normal. I could feel every step those runners took and I wanted to run too. I wanted youth and all it's unabandoned freedom. I did not want the responsibility of this disease. I wanted to fly. I can only hope that when my time comes my Lord let's me fly....Oh, how I'd love to fly....Thanks for coming back Jack...........

The Beginning.......

Everything and everyone has to begin somewhere. Some start out very early in life to be a star that shines for all to see and then there is me. Mother of three grown children, grandmother to four with one on the way, and 61 years old some days and 61 years very young other days. I have crammed a lot of area and events into those years prior to October, 2007 but nothing could compare to the adventure I was to embark on that day. While looking for my email which in itself was a struggle since a total novice at the net I was, up popped Patientslikeme.com and there in was the beginning. After much struggle I logged on to only Lord knew what. I had never been in a chat room or a forum and didn't know the difference but yet here I was among total strangers wanting to discuss anything with me. I lurked for a while(maybe a day) and then entered a post and that took me to today where once again I struggled through the birth and it remains to be seen if the new born survived or not..........

Which Road to Travel........when?

As often happens with my disease, I spent a few days in recovery and could not write. Recovery from what; I really don't know. Recovery to what;. I'm really not sure about that either. Am I fully recovered; probably not, but today I noticed the world had not stopped to let me catch up and time was moving forward . Several of my close friends have become sicker than normal....two are really bad. All this churning in the world around me is just reinforcing how uncertain everything is. I never would have imagined me here on the internet blogging even a year ago. Nor would I have imagined people calling me from all parts of the U.S.on a daily bases just to talk or check on me. Sometimes I just have to stop an question," where did that come from?"and no answer comes. Shouldn't life be simple at my age? After all I'm 61 and should be pretty stable and OLD by now. Not with me...Everyday is a new adventure into worlds I never even knew existed before. Ideas flash through my head like a teletype machine and it never shuts off. I do so hope that in all this confusion I make some right decisions and inspire someone else to join me and play.Parkinson's is kind of a funny disease that way. It is never the same two days in a row or the same symptom to two people at the same time. Makes you wonder how they can treat us with any success. If there is success, we always know it's fleeting and far too soon it is gone...Wish me well on this journey and, God........grant me time and mind to finish my mission....POKIE

This was a poem my grandfather wrote in the sixties and a copy was passed on to me for safe keeping. Some how it seems to have something to say to me today and so once again I will bring

it to print:

OUR CROSS In the quietness of our sanctuary when I feel that all is lost I lift up my eyes And there I see a cross. A cross formed by wicked men To be a badge of shame Where a man would suffer and die Never to live again. They placed it high upon a hill Where all mankind could see That God did not have the power To set the wicked free. God let them have there way He did not show his power His murdered son did live again Comes Easter's morning hour. The cross formed by wicked men And placed on a mountain slope Failed the plans of its architect And became a badge of hope. In the quietness of our sanctuary When I look upon the cross I knew he stained it with his blood To save a world once lost.

Amazing Grace....

Has life always been so dramatic? Has every little detail of living always been so vivid and pronounced? It seems that every word has huge amounts of meaning to not just me but everyone around me. Nothing is left to chance and no stone left unturned. More friends encircle me than ever in my life, and I thank God for them because this disease is determined to be noticed. Today I venture out to the world of hospitals and labs and doctors...totally the world of the unknown. If you have a broken leg you get it fixed and life goes on but if you have Parkinson's Disease there is always the question of the interaction with the meds and the swelling. Nothing is simple and cut and dried. Then you add to that the fact that absolutely no one knows what this disease is. Each one of us suffers in his own way. Some have bouts with depression and others it remains all physical. Some can take the medication and some can't...and the names of these beasts, as if Parkinson's Disease was not bad enough, try this one Polymyalgia Rhumatica. Well here it is very early in the morning or very late at night whichever you prefer and I am suffering from something......whatever. But then along comes Amazing Grace to lift me up when I can no longer help myself and I'm off in a new direction in full view of the world. Hopefully with this visit to the unknown some one will discover something that works for me....Our disease seems to be the melting pot of all other diseases......but there is always that sad look in the other persons eyes and sometimes a tear as they tell you they are sorry. And I tell you "It's OK" and I really hope it is. This week it's time for change. I once more have to pull everything I have together to organize my surroundings and shake out the dust and let in the sunshine. My body says, " rest" and my mind says, " don't you dare!" My tomorrow is today and in that thought this poem will help me as will Amazing Grace.... Tomorrow does not stand apart, A shining, all new day; Tomorrow is a thing slow-built Of hours passed away. I's made of dreams your heart has stored, And dreams discarded too: It's made of all the joys and tears The years have brought to you. It's made of lessons you have learned, The friends you've known..the foes; As each of our Todays is bent, So our Tomorrow grows. It's made of sweat and toil and pain And song and love and laughter; Each minute of Today helps build The day that follows after. Tomorrow does not spring full-built With some new dawn's bright rays... Tomorrow is a slow -built thing Made up of yesterdays. H.L.Marshall

Starting a new day.....

So many things have went on since my last post....So many emotions have flooded my brain. I've cried and laughed til I cried and then cried some more. People with Parkinson's tend to be emotional and crying is suppose to be good for you...but this is ridiculous. In the span of a week I have traveled to places I would have never dreamed of seeing and met so many people that were only names in space. I've said hello and goodbye to people who have forever touched my heart and changed me once again to another person. If these emotions alone were not enough, feelings from another land crept in yesterday and threatened my very existance as it is today. Without warning everyone around me had paired off and it looked like my happy computer home was doomed....The need to make a dollar over shadowed the total feeling of the site and by noon the site was faced with loosing 20 or 30 posters. There is such a support group there on both sides of the screen and the phone calls and emails started right along with the prayers. Then at 10:00PM his time , he called me and the world started up again and my home was saved. All of this was a test to the strength of the caring on Patientslikeme.com We banned together in love and set our sites on the truth and caring and I believe we won...Thanks to all that survived yesterday....may it never happen again...POKIE