|
Pokie's Journey to 2009
December 2008
Wednesday December 31, 2008
Posted by: pokie too at 7:51PM CST on December 31, 2008
Monday December 29, 2008
Posted by: pokie too at 11:55PM CST on December 29, 2008
I have been wandering around reading all the wonderful things that are being written by People with varying degrees of Parkinson's. I have been just jumping from blog to blog and I am so proud and amazed at the work that is being produced in a days time. Jointly it mounts up to volumes of written word that so many are missing. Our hearts and souls are being poured out to the world and so many are missing the point. I am so taken back by the talent that is out there. I can not explain the degree of humility I feel to even be known by some of these people. These are quiet souls in so much pain, who continue to climb the mountain and survive. How lucky we are to have someone say they are mentoring one of us to a higher goal. I am so honored to say that many have helped me to climb some awesome hills let alone mountains. New blogs are being formed every minute and none must be ignored. In every story a thought is captured forever. The pleasure of my life continues to be the ability to type a word and have it come on the screen in front of me and excite me. I fight so for a quiet moment just to type and those moments seem few and far apart lately. I know the holidays require a lot of attention as does everyone around me. My mother is rapidly slipping away and soon will not know me...My family docter of thirty years slipped from her memory this last week with not a second glance behind her. She tells me every day how terrible it is to loose your memory.......I hope it is only a temporary loss and when she gets to heaven all the memories have been saved for her once again to enjoy. She doesn't seem to be angry about this loss yet it causes her to cling to me and I am not the most steadying force these days..So often I wonder who is the caregiver in her mind? She still insisted on washing the dishes last night not realizing that after she went to bed I went back to the kitchen and rewashed all the dishes and put them away. She never saw what was left behind. I see what my mother is going through and relize my time is coming soon. I try not to worry when she asks me what is that behind that house up the road? It's a huge red barn that has been visible from the kitchen window for thirty years or more and what is that little speck in the sky that she watches and it never goes away? My son told her it was a satellie and it might be the Russians monitoring our every movement. When we got in the car she began to ponder the thought and store it away. When we got in the car to return home she ask Matt if we needed to let the Russians know we were headed home as he turned on his monitor and she watched it intently...She'll lay in her bed tonight and watch that little speck or satelite and I am sure all the questions will be there but no answers will follow...While I was in Ohio visiting Dixie, I bought a tee shirt that says quietly"I think I can, I think I can" and then at Christmas my daughter in law gave me a tiny little glass train....and on the card it said:
YES YOU CAN No matter what the task may be, How hard the course you face Believe that you have what it takes To run life's toughest race. 
Sunday December 28, 2008
Posted by: pokie too at 7:31AM CST on December 28, 2008
There once was a small group of patients
A disease called Parkinson’s they did share. We met on a web site in cyberspace, while looking for some one to care. We banded together as friends do Ideas began to flow. Now we are a team of many All searching for a goal. Once we were just over two hundred And now are over three thousand strong. We show up in so many places in colors and varieties one and all. We banded together with just a strong hug And “pinky swore” did we. Among the tall buildings and thousands that walked That God was our leader to be. We set up a team for the Unity Walk in April 2009 We had been four in the year before who wanting to return. This year we will be over twenty and our passion
HOW IT BURNS!
Our emblem is two tulips held together by a thread. One stands up ever so straight the other curves his head.
We come from states across this land And some places across the sea. We never miss a day or time
To share Parkinson's, this dreadful disease. Pokie Too 2008
Thursday December 25, 2008
Posted by: pokie too at 1:19AM CST on December 25, 2008
Many years ago our ancestors fashioned quilts from any piece of fabric that could be found. Some s##### became Crazy Quilts and some were laid out in intricate designs and called Pieced Quilts. Fabric in those days was so precious that every quilt carried a story with it's pattern. Quilts were even used as signs during the Civil War to mark houses connected to the Underground Railroad. A certain pattern on the quilt in a certain color marked that place as a safe haven for escaping slaves and their loved ones. Usually no matter how poor or rich you were you owned a special quilt and you kept it with you your whole life for comfort in those rough times....
One night while working on my grandson's baby quilt, I wondered if Parkinson's patients could make a quilt with just such a story. Where every square told something very important about that person. No matter what their inability was could they make a square and be proud. Would they trust me enough to give me their home address so we could connect on the making of this quilt? Could they do it in a time frame.....As it turned out all the answers are yes....and a very big YES!!! It's now been several months since the first bolt of material was bought and cut into 12 inch squares to be mailed to the people who said they would like to work on this quilt. The thread on Patientslikeme.com has daily feedback and I now have about twenty squares in with December 31st being our deadline for receipt. While I was getting ideas I happened int one of my favorite sewing places "The Stichers Station" to get some help and found the lady that does my quilting was very interested in helping. She would like to donate her time for the cure of Parkinson's and here started the plan. The quilter will have the quilt done by April so it can travel to the Parkinson's Unity Walk in NYC with Team Patientslikeme.....or better known as Team PLM.....where it will meet the world. Then in 2009 I will try to get as much recognition as I can in hopes of aucioning it off late in 2009 for a large donation to Parkinson Research. Little did I know the response would be so overwhelming. Wvery square I receive has it's own energy. You can feel this energy when you lay your hand on the square. Each one is it's own story for Parkinson's and it's victories and defeats. Check out some of these entries and see if you don't agree ... (more) Wednesday December 24, 2008
Posted by: pokie too at 2:29AM CST on December 24, 2008
Look around us today and the amazement in the eyes of people as to what is going on. So much is needed mentally to get us through the day. We all seem to be just barely keeping our noses above the water. Are we just barely staying a float? Do we seem to belacking in friends who really care? Do you wait for YOUR quiet time and it never comes? Today is a new day.... and things are changing and you need to change with them. Find a cause and put your whole heart into it. Look for someone who is hurting and give them a hug. Do something for someone that they would never expect. The things that you do that noone knows about are the things that will bring you the most joy. Jesus came to save us, and on this the eve of his birthday, stop and take time for him. A better friend you will never have. Merry Christmas "Baby Jesus" an thank you for coming to me. Thank you for this day and all the blessings it holds in store. Love Pokie
Tuesday December 23, 2008
Posted by: pokie too at 1:22AM CST on December 23, 2008
This an interview for the Patientslikeme Newletter this month:
What gets you into the Holiday Spirit?
I seem to be one of those people who never completely grow up. I am lost as if a child at play to wander around in amazement of the world I find. Because of this God given gift, Christmas is a very special time of the year. The coming of the first snow.usually sends me quite happily into my Christmas Spirit. The anticipation in the grandkids eyes as each box of treasures is opened for another year of displaying. The home of our "Baby Jesus"", the Nativity Scene, is at the center of our celebration. This very special little Jesus, though barely finger size, has survived the raising of three grown kids and six grandkids and still sits securely in the middle of a now very large gathering of animals, wise men and family all nestled down in a structure made by my grandfather during the depression. 2. What is your favorite holiday tradition and why? I have never passed November 1st. without putting up my Christmas Tree that could withstand the long session, for you see, my tree stays up until January 31st. My fancy for the tree has always been anything goes: ornaments people have given me; some of my moms first ornaments, bubble lights and large hand blown balls from Gemany, pictures and bows and all things special.
3. What have you learned about yourself or your condition from the internet? Last year my gift from God was Patientslikeme.com and a more precious gift I have never received. He presented me hundreds of friends I would havee never known, angels to guide me through Parkinson's Disease. He also gave me knowledge of a very complicated disease, and through that knowledge, strength to get up each day and turn on my computer and look for that cure - theat one little thing that has been overlooked that will turn MSA, ALS, MA, and PD around ffor good. Slowly but surely the people in front and behind the screen have guided me through computer skills and websites where I could find people to help me in my quest. 4. What are your hopes for the new year? I pray in the coming year that the individual groups for neurological disorders will come to know each other as friends united in a common fight. Our symptoms are so close and our needs at times are small. A hug, a kind word, a smile or a cry, can beat all the meds for that day and bring peace. Christmas never leaves me all year long. My Lord and I celebrate the coming of the "Baby Jesus" every day, and so with that in mind, my resolution for the new year is to take something I have always known and pass it on to all who will hear. Your higher being is always beside you. You are never alone. One by one, one patient, one friend and the Lord, and we can find a cure and have peace on earth and goodwill for all men. Always, Pokie Friday December 12, 2008
Posted by: pokie too at 6:08PM CST on December 12, 2008
My time given to thought, is very early in the morning when most people would rather be in bed sleeping. There is something so soothing to me about the quiet of the darkness outside. My brain does not multitask very well. With the slightest distraction my chain of thought is gone...not just for a minute, but forever. Moments to concentrate during the day are very few and far between and so my pattern lately has been to take a nap in the afternoon and try to outlast everyone else in the evening until peace and solitude come in with a pizza and the brain juices start to flow.....
Last night things were just not flowing and that usually means I am just too tired to think. I was spending more time going backward than forward and I some how hit trashcan and my whole blog went down the tubes. 23 entries just disappeared into cyberspace. On just an ordinary journal this would be bad but my blog is a following of Patientslikeme.com and the Parinkon's 2009 Unity Walk and all patients between, and this was horrible in BIG LETTERS. I tried for a couple of hours and could not get it back up. At four thirty or so I gave up in tears and went to bed wanting so bad to drive to Walmart and buy a cheese cake and eat the whole thing but I was fasting for blood work at 7. The last thing I did do was contact a friend here and state my panick in a desperate attempt for consoling. He stated how sorry he was but had no idea what to do. Somehow that made me feel better and I left the house for a day in Effingham having blood work and MRI's. At four P.M. I returned home and tirned on the computer to find the option to pull up my old blog from the trash can......I just sat there and stared at the screen in disbelief.....God had given me another chance and mentioned in the passing that a little more sleep was needed to work on something so important.... Now I will very carefully proof this writing and as I do the prayers will flow from my brain to heaven. Daily I read this small little bible I bought on the way to NYC last year for the 2008 Walk. I just let it fall open and start to read...Today the message was from Romans 10:15 And how shall they preach, except that they be sent? as it is written How Beautiful are the feet of them that preach the Gospel of Peace, and bring Glad Tidings of Good Things! Thank you Lord I am listening! Good Night Pokie
Tuesday December 9, 2008
Posted by: pokie too at 1:59AM CST on December 9, 2008
Thursday December 4, 2008
Posted by: pokie too at 11:46PM CST on December 4, 2008
|
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.
Rate this Blog:
  1 rating(s)
Categories
• Jessus, prayer, pain
• Christmas, rebirth • hope • support • caring • washington U • Parkinson's • PAN FORUM-2 • pokie too • Fayette Co, Ill • pokie too-3 • brother
Older Posts
Latest Entries
Loading...
Links
Loading...
 |
Leave a Message
Leave a Comment
Request as a Friend
