|
Pokie's Journey to 2009
April 2009
Wednesday April 29, 2009
Posted by: pokie too at 1:12PM CST on April 29, 2009
This could be called "What a Day in the Neighborhood" and pass with flying colors. I have been to three blog sites this morning, just posting to my hearts content and now I have saved the best for last....
Saturday at 12:00 noon Vandalia, Illinois is hosting the First Annual Neurological Disorder Conference at the Kaskaskia College Educational Blg on Fillmore Street. and it is turning into quite the event. With 20 some odd booths registered for display and speakers from the three state area attending, it should be a fun time for all...The 2009 Parkinson Unity Quilt will be on Display after making such a splash in New York City this weekend at the 2009 Parkinson's Unity Walk....The word is out too that even Abe Lincoln will be visiting our good time. David Zid and Jackie Russell will be in from Columbus, Ohio with the Delay the Disease Book and Program and for anyone who has witnessed their display on exercise it is awesome.Debbie Guyer will be in from the STL APDA with Washington Univ to explain the LSVT Speak Loud Program. Anyone interested in or dealing with Parkinson's or any other Neurological Disorder will find this conference well worth their time and effort. Bring the family and enjoy.....
Wednesday April 22, 2009
Posted by: pokie too at 5:59AM CST on April 22, 2009
It's 5:30 AM in mid Illinois and with Quilt in hand I am off on yet again another journey. The journey to 2009 will end Saturday with the 2009 Unity Walk for Parkinson's in New York City. It seems impossible that a year has ran past me and I was unable to slow it up one bit. There is no measure for the friends I have made nor the stories I have heard. I have traveled from one end of this United States to the other and though I have always been a proud American, When I stood in front of the Congressional Buildings I was awe struck. What our founding fathers left for us in legacy, and trust is like no other place on earth. And Saturday, when once more I enter Central Park with close to 20,000 people, I will feel the presence of God. There are two birds outside my window this morning.Each is trying to be the best and loudest bird in the neighborhood. Little do they know that one would be very boring without the other. They are both needed to make the daybreak a success.....each of us has our own place in the skeam of things, I am sure. Even though some of us are bent or crippled and my shake sometimes, we are still needed to balance the landscape....Never underestimate the power of one. One is the beginning of all.....One multiplied by itself doubles and its force is felt. At last years walk our team was only four...this year it is thirty and what have we collected so far 10,000.00 and will have more by Saturday.....Thank you Lord for making me a part of the scheme of things and walking with me on mypath to a cure.....love Pokie
Tuesday April 21, 2009
Posted by: pokie too at 11:32AM CST on April 21, 2009
This will be short for me, but these are some places you can check on the progress our team has made in donations for research since January 1, 2009. I am so proud of my team that has grown form four to over fifty in one year. I actually am the co captain with Marla DeVane and her husband Charlie. They are an awesome pair and some very special friends of mine....Marla is the PDer and Charlie her support....she has a nine year old and teenager at home and one daughter in first year college and Parkinson's. With 317 dollars we will go over the 10,000 dollar mark that takes research a long way. Are there any corporate sponsors out there lurking? Come on it is tax deductable and it is very easy to match our funds...http://unitywalk.org/team patientslikeme or pokie too
go to You Tube and pull up Real-People with Parkinson's Meet "Pokie Too" this is me at last years walk and statement I have used on Patientslikeme.com this year Listen to the radio for Fayette County at eight on Tuesday Mornings WKRP Yes, that is me talking about our medical conference on May 2nd. AND FRIDAY MORNING I WILL BE ON THE TODAY SHOW MAYBE BOTH PLACES FENCE AND INSIDE AND IF THAT WAS NOT ENOUGH, as of this morning I am a member of HealthBloggers .com by invitation as a returning guest blogger. Well, this is alot of information in one spot but work through it and pass the word on...We'd love a cure this year!!!!!! love pokie
Posted by: pokie too at 7:05AM CST on April 21, 2009
THE LAST FOUR DAYS HAVE BEEN A WORLD WIND OF EVENTS THAT WOULD HAVE DEFIED ONLY THE HARDY. Wednesday I will leave , with the Parkinson's Unity Quilt in hand for New York City for my second Unity Walk. It seems impossible that a year has passed. Parkinson's Disease and I have traveled across the United States in all directions listening to the very newest treatments from the foremost clinics and doctors. I have been to some of the best clinics and hospitals the Parkinson's has to offer. A year ago I would have had trouble sending a chain letter to twelve friends because first, I would not have know twelve friends who could use the Internet and second I would not have know how to attach a chain letter. Now my address book goes on and on. Friday the Quilt and I will venture to the TODAY SHOW with hopes of being interviewed for Parkinson's. Saturday my team Patientslikeme will be interviewed for the webcast at the walk were we are running in the top ten for donations. Then yesterday Dr. Geoff Rutledge contacted me from Wellsphere and invited me to be an on going quest blogger on his website. http://hHealthboggers. com now really!!!a year ago I was a sixty two year old goat farmer from middle Illinois who was having trouble walking and hurting all over.
I can only say when God decides to change your life and take you on a ride, he does it first class. I have been in such severe pain yet have never had one day in three hundred and sixty five that I have not fought this disease with all I have mentally and physically. There is so much more to PD than the meds. The depression is constanly waiting to get a foot hold and drag us down into a bottomless hole. The meds we take interact with each other, leaving us fatiqued and grouchy and feeling useless to ourselves and the outside world. We are not useless and we are not someone in the corner of a nursing home asleep waiing to die. Just as our quilt shows, wwe are vibrant, otgoing people with a story to tell and a smile to send...and willing to hug if you will come close enough. No two of us are alike as is our disease and the way it raveges us. A collection of odd shapes and sizes in every color that looks by theirselves to be singled out like a miss fit...BUT PUT THEM TOGETHER and look at them shine! Unity just waiting for the world to take notice at how unique and special we are. love pokie Friday April 17, 2009
Posted by: pokie too at 1:42AM CST on April 17, 2009
Dearest Sassy,
Thanks so much for taking up the slack while I was trying to figure out how to get to the keyboard. Over the past month, as happens with so man of us with PD my pain increased and finally the diagnoses came that I have a shrinking spine 4,5,and 6 vertebra..... Very painful and rendered me almost in an impossible position to type or even sit up. Ah but alas, I am on the temporary heal and just in time to let you know that in five days I will be off to NYC to the Walk. 2009 Parkinsons Unity Walk......Thanks Sass It was a good day when I wrote you and said "Did you know hey are looking for a humarist?" love ya pokie
Posted by: pokie too at 12:43AM CST on April 17, 2009
I swore last month I would not post about the quilt until I could give it my total, undivided attention and do it right like it deserves. Well once again, God has made me eat my words. When you have days like today you become one of the most humble people on earth, for sure. I will be the master of ceremonies May 2 in Vandalia, Illinois of the first annual Fayette County Neurological Disorders Conference and this morning I was at the hospital passing out fliers and registration forms for this while people were waiting to get their blood work done....I started at six thirty and was done by eight with fifty fliers in the hands of patients....I left there feeling that steps were being made toward success with handling Parkinson's Disease. By noon, my hair had been done and I was headed home for a nap, feeling all was well with the world. Little did I know what was to unfold in a matter of hours. The qilt had been dropped off the day before at the photographer for professional photos to be made, knowing my photos were not doing it justice. She called about four and said the preliminary shots were ready for viewing and could I come by. Oh now .....she did a "WOW" job . She had framed our quilt in red and titled her "2009 Parkinson's Unity Quilt" How beautiful it was! I hugged it as if an old friend had returned home to share it's travel stories with me. I had 5x7's made for each of the patients who had participated and a large one for me. I ask if she could email me something to work with while waiting for the finals and she did. I returned to Patientslikeme.com to post it and noticed I had mail. Boy did I have mail....PLM has me on Facebook and You Tube as a face behind Parkinsons "Pokie Too". I am so awe struck I have no idea what to say. I will post a link as soon as I figure out how They had posted a small segment that they had taped at last years walk but now had greatly enlarged it and added in quotes from the forum.The piece is entiteled "Real-World People with Parkinson's Meet 'Pokie Too'" I sincerely hope you can find it....I have so much to write and so little time to get it done.....I'll tr to explain shortly. 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.
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
