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Pokie's Journey to 2009
November 2008
Sunday November 30, 2008
Posted by: pokie too at 1:30AM CST on November 30, 2008
Two months ago a friend of mine on the MS side of Patientslikeme.com brought a beautiful quilt to my attention that they had made as a unity force for their search for a cure. My brain just caught on fire. our side is an accumulation of some 3000 patients but none the less very opinionated and active. So late one night I posted..."Would anyone be interested in making a quilt for the Unity Walk?" and look where we are now. I bought the material and cut out the 12 inch squares and sent three to each of 40 participants. As they finished them, they sent them back to me. They all have to be in by December 31,2008. I have a lady who is waiting to get the pieces and then she will piece and quilt our masterpiece by April and get it back to me. In April it will go with me to New York City for the 2009 Parkinson's Unity Walk...
As the pieces pour in, the beauty and depth of our disease is shown. The colors are bright and happy. Each square tells a story about that person. Some sell a business . Some sell a causes. Some show the heart of this disease and ask for help for a cure....Some say very simply, "Yes I have Parkinson's but am still me and able to be me. Along with her quilt squares a little lady who goes by Sassy and blogs under Funtimeswithsassafras.blogspot.com sent me this poem. I met her through a mutual friend and then met her in person at 3:30 AM at a Steak and Shake on the way to the Atlanta Young Onset Conference in October. Such a beautiful person and talented in so many ways. What she wrote will travel with the quilt as a very special part because she has got the idea and put it to words.....a very unique gift. This is what she wrote: Hi Pokie, Here are my blocks. The bird was chosen because it is a Distlefink...and they are the good luck bird. The tulip because of Parkinson's A friend made the block for me I hope the quilt is all that you dreamed it would be. The Quilt A bunch of people made this quilt, A special bunch indeed. They have a common bond And saw a desperate need. We're fighting for our lives Each day is such a test. We're looking for the cure then we can sit and rest. We hope you'll understand this quilt was made with love Knowing if we find the cure it's up to the Lord above. Come see the beauty of the quilt The names put on with pride. We hope you'll help us with this quest We'll fight this side by side.
Sassy Dock 11/2008 I will proudly travel with this quilt in 2009. Telling my story to whomever will listen and then for Christmas next year raffle it off on EBAY and donate the money to Parkinson's Research 100%......Are you beginning to see how it will take a network to cure this disease and the more we are out there making our presence known the quicker the cure will come....love pokie Since posting this fascinating things continue to happen. Kaylee called me and ask if she could make a video of the quilt in progress. Little did I know, every time I play it I cry. this is it: http://www.slide.com/r/ttlZrbEp4D9E_Xp_Nspu5J6KbcFzC4-S?previo.......I am so proud of this site and it's accomplishments....love Pokie .
Friday November 28, 2008
Posted by: pokie too at 1:41PM CST on November 28, 2008
With great pride and enthusiasm, I can tell you today that Fayette County and it's hospital have embaced a Parkinson's Support Group and for this , at Thanksgiving or any othe time, I am so happy. This has been a silent passion of mine for the past year as I traveled back and forth across the United States and attended symposiums and conferences and friends either dying or severely stricken with this horrible disease. My plan was to collect all the information i could carry back and start a borrow library at the hospital attached with a phone number to call in crisis and someone who knows what your going through at the other end. I have now accumulated around a hundred books and tapes and more are coming all the time and Fayette County Hospital in Vandalia, Illinois has embraced my support group with open arms. I have been on the radio three times in the past month and will hopefully make it a regular thing. The nice part is we not only discuss Pakinson's, but ALS and MS or any neurological disorder that you might have. I am by no means an expert but I do have the disease and I care. i will start a newspape blitz this week in all the surrounding county papers and I think we are launched.. I have heard from so many people willing to help me with my dream......There are not enough words to thank them. I would like to say this much though. There are to people who are very close to my heart who have given me that extra push each day when I know their day was anything but perfect . They both reside in California.
Dan Brooks my friend with a beautiful smile and huge heart, who is battleing Parkinson's Plus and has been for years. Dan is an author , musician, father and husband and believes in the power of our Lord. and we met hrough a common friend Karen Fernandez who is battling MSA and is a mother, grandmother and wife who will be an auhor and can write the most touching poetry. Karen too has this huge smile that lights a room. They have propted me up when i could not walk and they have refused to let me stop when all I wanted o do was go back to bed. Thank you guys from the bottom of my heart. I won't let you down.. You too can read their stories at Patients-Online.com and http://mobmsa.blogspot.com Thank you again guys for all your support and may God grant us happiness and peace in he coming year. Wednesday November 26, 2008
Posted by: pokie too at 11:22AM CST on November 26, 2008
Last Thursday I rented a car an started quite an adventure that took me almost 1500 miles, through snow and sleet and freezing rain, to visit a very dear friend of mine named Dixie Pixie in Cleveland, Ohio. I first met Dixie last January on line on Patientslikeme.com. She had broken her arm and I had broken my leg and we shared a friend called Parkinson's Disease. She had been put in a Nursing Home for rehab and I was at home on the farm and both were wonderng what next could possibly happen. She would go to the nurses station at 11:00 pm each night and stand on her tip toes and with her good hand type with one finger to let me know how things were going. She was seventy four then and said,"She didn't like this place. It was full of old people." We would meet faithfully every night. We exchanged cards and soon telephone calls and soon she got to move across the street to assisted living where I put out a plea on the site and we bought her a new laptop for her own use when ever she wanted. In April we flew to New York City for the Unity Walk and met face to face for the first time. We ate New York pizza which is like no other, and hugged and kissed and became friends forever.
The year progressed on and I traveled many places looking for a cure and spreading the word that we needed help to cure this disease. About mid summer I decided to get up to see Dixie before the snow flew. The night I drove in he area received 20 inches of lake effect band snowing.....I never want to drive in that again but here I was in beautiful Cleveland ready to Celebrate in a big way .wth members of the site I was meeting for the first time. Many things are missed in the travels of a lifetime. Time is not taken in the rush to see the very small things that turn out to be so important and precious to living. Things are taken for granted and pushed aside that could bring us hors of pleasure when remembered later on
The next day was just such an experience. crammed packed with things she needed done like the post office , dentist and of course, a walmart run, Then off to the mall and new glasses and Barnes and Nobles. That evening Dixie and I were the guest of her son at the Cleveland Orchestra in Severance Hall. Dixie's son Hahns plays the french horn and so we had access to the orchestra afterwards. They played Anton Bruckner's Symphony No.8 in C minor. I had never been to a concert like this before and the music was so exciting that toward the end I so wanted to stand up and yell WHOOOOhowoooo. I contained myself but did give eveyone a hug and thanked them for the experience. That night we got our pajamas on and snuggled down in bed to discuss the events of the day and the direction our lives were taking . We got a phone call from California where Karen and Marian had just attended the Parkinson Princesses Honoring at Sunnyvale Clinic in California. They Were in a hotel with huge beds and with them both being five feet or so were laughing neither one of them could get on the beds and if they did their feet didn't touch the floor. Though thousands of miles away from each other and many years difference in age me played and laughed as if we were children once again.....anticipating a pillow fight or hidden chocolate...stached for just such an ocassion. Life takes funny turns but if you keep your eyes and ears open there is so much to be learned and enjoyed.....with or without Parkinson's.
Sunday November 16, 2008
Posted by: pokie too at 2:15PM CST on November 16, 2008
Is it not amazing how important the word one is? " One seed can start a garden, one smile can lift a spirit and one candle can light a room, one penny could start a fortune and one person can make all the difference. If that one person is you, you can spread an important message to someone else and the message will spread one by one until a community has heard your message My belief is that one on one we can defeat this disease they call Parkinson's. I certainly try, on a daily bases, to do all I can to educate the world on our plight and to enhance the awareness that is around us. If you saved one dollar today and did that everyday until the 2009 Unity Walk for Parkinson's in April, you would have close to $200 to donate to our campaign and multiply that by 125 people and My team has meet our goal for this years walk. Unlike most donations 100% of this...every cent goes to a cure. One seed planted in the right mind could find our cure. One smile could change the lonely life of someone dealing with Parkinson's and one penny could help fund the research that will end this disease forever. In 1996 my journey was started by one shiny penny found in a shower after a grand mal seizure. Could it be just the thing that changes your life forever.The penny is the lowliest of our currency, the humblest coin you can carry yet maybe the closest to God because of it's total possibilities for growth and achievement.. I leave you with this thought on His day. Please make a difference in the millions who have this disease now and donate to the walk. Go to www.unitywalk.org and donate...Let them know that Pokie Too sent you.....I would so appreciate it. love pokie
Thursday November 13, 2008
Posted by: pokie too at 9:36PM CST on November 13, 2008
November t I entered the Parkinson's Clinic of the Ozarks for an intense day of evaluation on my journey with Parkinson's....Nothing could have prepared me for the day I was to encounter. This was medicine at it's finest and most thorough. A very special thanks I would like to extend to two very special people there Tessie, a beautiful spirit who lights up a room when she walks in and also is the Parkinson's nurse. And then there is Janice McCauley, Director of Parkinson's Services, Senior Advantage. This lady has to just love her job because it showed, and showed and showed all day. So many personal things she did made me feel like someone really was listening to my message and concerns, for you see this is what I do. I travel and talk to people concerned with Parkinson's Disease and try to gain both mine and their awareness of the changes going on and the problems being encountered. Janice and I actually hugged at the end of the day and "Pinky Swore" Parkinson's Friends Forever and I meant every bit of it.
If these two ladies would not have been enough, there was also Missy Reed and all the group in Physical Therapy and Speech Therapy who gave me a guided tour of their facility and lots of sample paperwork just in case the opportunity would come to advance one in our area. They have a Subway built right into the cafeteria.....Maybe this is normal for big cities and people who inhabit them but not for me in my little town. After all day of testing and questions, a mountain of paperwork was accumulated and after consultation between the testers and doctor with out me, I was called in and entered into something I have not experienced before . Dr Quinn, just an awesome doctor who came from a long line of Illinois farmers, starts in on his personal questions. All the wihile he is asking questions he's watching and then says, " Your neurologist is doing an excellent job." He just made my day because if there is ever anything a Parkinson's patient wants to hear, it's that exact statement. I left the institute around five and had accomplished everything i had went there for. And Dr. Quinn was right. I am doing well. After almost three years of medication I have progressed along but am holding my own. Despite this dreaded disease I have never been happier and life is exciting and new just proving most any negitive can be changed to a plus with a little work.....Thank you everyone, I was treated like a queen and love your facility.........Friends forever, "Pinky Swear" Monday November 10, 2008
Posted by: pokie too at 6:08AM CST on November 10, 2008
It seems ever apparent , as time moves us on that so many things cause our wold to take shape and be misshapen. This morning I sit here trying with all my might to get my left hand to cooperate and let me type. It curls and it freezes, all terms a "Parkie" might know. It's my left arm that I do battle with and thank God for that, because you see I'm right handed and really that is the only truly functional part of me left. Parkinson's is a funny disease and it loves to play around . Some days you would barely know there was something so wrong and then there are days like today.. I take them one and all and know that my Journey has all been Googled for me many centuries before. Some mornings I lay tossing and turning in bed until i finally get up and grab my coffee and off I go to the computer as if possessed. As I start to type all the pain goes away and the answers and some questions form for a new day. This morning this small poem came from nowhere, so I copied it down and checked my email
Tell me sweet Jesus, give me a clue. How do I be such a leader of few? Give me direction as I stumble along, Trying to save and then moving on. Questions and questions come from all sides and so few answers do I find. So many needles in such huge haystacks,
Tell me sweet Jesus, tell me please do
Are the answers still out there? For the wanderings of so few. , So now on my second cup of coffee and well on my way....I'm ready to square off and face my new day.I can only hope that some of my tasks don'r include running or jumping . For those are two things my body refuses to address no matter what shape I get up in. Well i'll leave you with this rambling and wish you a good day on my Journey to 2009....
, Friday November 7, 2008
Posted by: pokie too at 7:02PM CST on November 7, 2008
Yesterday was my first time on the radio and WSMI 93.3 FM gave me my first chance. I stepped into a doctors examining room and was handed a microphone and we were off and rolling. I am known for being just a little long winded and so I am sure they have enough for two sessions. even after editing. They volunteered to make me a CD of the conversation which I had not even thought of. As if I wasn't shaking enough,David Zid called me just before I went on the air and wished me luck as did Dan Davis earlier. Did I tell you we are looking for a large enough building for a Symposium on Health for FAYETTE COUNTY and they are all coming to be apart? This will be such a plus for this county and the surrounding area..Volumes can be written from the knowledge these people carry with them. It is truly very exciting times times now and in the future.... Then when I finally got my feet back on the ground and blood pressure back down I get a call from"Viwig" Lopez and his wife who are traveling from Texas to the St. Louis area for a wedding and wanted to meet up with me and exchange some gifts. So off to Jay's Restaurant just off the highway and after two hours we parted with tears in our eyes. In that two hour time he had taken me through what he was like before surgery with extensive tremors and then tweaked it and now after surgery no tremors.....all controlled by a very generic looking box with two batteries that help keep his brain on track.He has authored three books and is truly a fascinating man. Where did I met him? Patientslikeme.com is the answer to that... He posts as VeeWig and I will post pictures tomorrow. We also have something else I do on PLM and that is when you get your profile completely filled out you receive a PatientslikemeTee shirt. I cried when I got mine because I was only one of three people who had one and it came the week after I had broken my leg last winter. I will have to go back and see how many people have one now. When I went to last years Unity Walk, they gave me a second clean shirt and I had everyone sign it I could find and they have carried it all year having plmer's all across the USA sign it as we meet and I take their picture and put it back on the site. I always ask and it gives validity on a posting and a picture is worth a 1000 words at least......good night...pokie Wednesday November 5, 2008
Posted by: pokie too at 1:00AM CST on November 5, 2008
August 3, 2008 I traveled to Denver, Colorado to attend the Davis Phinney Victory Summit on Parkinsons Disease. As I arrived at the Westin Hotel in Boulder I noticed a lot of people wandering around the lobby with gold and orange colors on and some even had ten gallon hats and longhorn tee shirts but I'm past sixty and do not follow football except that I thought my friend Tom in New York was a Rams fan and I am always trying to pull one over on him....well back to the lobby. I assumed this was a cattlemen association meeting and went on about my business of trying to find Davis Phinney. Little did I realize I ended up spending the afternoon with him in that same lobby and didn't recognize him. There were some mixups in my reservations on that first day and getting back to the Denver airport was still very much up in the air.... The next morning I was up at five trying to get pictures of the sunrise for my blog when I came across a bunch of YOUNG men having great fun outside one of the conference rooms. The sign over the door said Texas Longhorn Foot ball Team Private Do not Enter and the whole story came together. No one said I was real swift! I decided to ask them if they knew the football team and they started laughing, "Well, yes?" I said "Well you see I have this friend in New York City who has Parkinson's and is a Rams fan and they started laughing and said they were really sorry he was a Rams fan. " I ask them if they could get someone to sign something that I could take back to him that he would recognize. They said they would try and disappeared behing the curtain. In a few minutes they came out with another gentleman who informed me they were under contract and not allowed to do that and as I tried to back out gracefully he said, "Do you have a camera little lady?" well yes always! He told me to get over with the guys and he'd take some pictures. HE turned out to be the coach and THEY turned out to be part of the team .....THE TEXAS LONGHORNS ....in town to play Colorado. I clowned around with them and explained what I was there for but might be stranded when flight time came. They offered me a ride on the bus....serious or not the thought was nice and I got a ride with my dear Nicole and family. I wished them luck before they hugged me goodbye and it must have worked THEY WON! Tuesday November 4, 2008
Posted by: pokie too at 8:42PM CST on November 4, 2008
The first thing on my list of changes is huge. You see there is a little lady with a big smile that is making tremendous changes in the world of Parkinson Disease....Jackie Russell-RN.BSN.CNOR Project Editor. Delay the Disease. I met Jackie while in Atlanta at the Young Onset Parkinson's Network Convention. As it usually happens. I have not a clue who I am talking to I just like what they say and am sure to tell them. Then months later I run into them again and realize just who I had been telling everything I know to. I believe this is called blundering through life and if I learned anything in college it was the knack of blundering through. I have no idea where this name came from but I referred to Jackie as Jackie Meyers and just caught it tonight. Ok I am blushing, I really do not know where Meyers came from...Jackie I'm sorry you get two hugs next meeting. To tell you just how sweet she is, she put me in touch with Dan Davis today to help me with the Fayette County Support Group and sent me some excellent articles she had written on exercise. There are no words to tell you how much it meant to me to have Dan tell me to call him back Friday so we could get in to depth on what will be needed and what can be accomplished. I so want this to be done just right and be a way to make a difference in my community and a lot of lives of patients who live there. Next I need to thank Kurt for becoming my friend here and noticing my writing. I have never wrote a thing in my life. In 61 years I have always read alot but never wrote anything. Now and for the last year I keep up three blogs: this one, http://justmeantiques.blogspot.com/, and http://justpokie.blogspot.com/ . I will soon have 2000 post on http://www.patientslikeme.com/ and I travel constantly meeting people from the site and attending symposiums and meetings trying to learn all I can about this disease called Parkinson's. October 7, 2007 was the first time I logged in on PLM and the rest is about history by now. I have traveled from New York City to San Francisco, California; from Atlanta, Georgia to Cleveland, Ohio and when my new friends and I part we always intertwine little fingers and promise "pinky swear" to be friend forever and we will be. This is from someone who had to search high and low to come up with twelve names to send a chain letter to. Now I have three notebooks full of contacts; with phone numbers, addresses, birthdays and children. A year ago I was a retired grandmother who ran a farm with almost Noah's Ark kind of supply of animals. I now work 24-7 for Parkinson's and my friends and absolutely love it . I am completely consumed by my new life. I admit it and can only hope it makes a difference and saves my grandchildren from the suffering it brings. Thank you Lord for the experience of Parkinsons and this new life.........love pokie |
About This Blog
A description of my journey to the 2009 Parkinson's Unity Walk in 2009, including interesting stories and bio's on our team members, our thoughts on our goals and dreams as we work toward our goal. We will be and currently are Team Patientslikeme.com. Our home is this website where we post daily. Our goal is to raise at least $25,000.00 this year for the cure.
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