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Pokie's Journey to 2009
February 2009
Thursday February 26, 2009
Posted by: pokie too at 7:28PM CST on February 26, 2009
People that read this blog may understand the problem I am having at this moment. I'm not real sure if it is a Parkinson thing or arthritis thing or just a me thing. I am tired , tired, tired. My bones ache, my hips really hurt , if I sleep I wake up rubbing my arms...Oh, for a good nights sleep! As I am faced with all of this, my brain says, "Go, come on get up" and my body has just taken to refusal. Very bad timing on my body's part, don't you think? Yesterday I had a meeting with two great guys from Ibsen Labs who are helping on the Medical Conference in Vandalia on May 2, 2009 They are sponsoring a new pain drug called Apokyn which looks to have a great future in the daily routine of Parkinson's. I talked to my new made friend from Alaska who I will be seeing in Washington, D.C. March 14th. and I got a call from a lady in Seattle, Washington that is moving back to Flora, Illinois with her husband who is having DBS Surgery and wondered if I could refer her to some good PD doctors in the area. I have never meet this lady but we talked for about an hour and will talk again. The power of the internet. Then at twelve I made my first ever conference call to Washington, D.C. to the Parkinson's Action Network to get some idea as to my responsibilities as district coordinator for the 19th dustrict. By two I was back home for a nap and about four I got another phone call and And internet fried from Wyonming was traveling interstate 70 and wanted to stap in with her family. so I picked up supper at Kentucky Fried and headed to the Walmart Partking lot and their huge RV to picnic with Karri and her family before they headed on toward Denver. I was home by ten and did my nightly musical chairs.
Not one thing in this day goes with anything that I have ever done in my life.....Isn't that wild to start completely all over again at 63?...I only wish I had the good health to do it right. This could be quite a trip. But wait a minute, what am I saying? THIS IS QUITE A TRIP. There is something on my mind and bothering me greatly. I think it might be the money I am spendng promoteing the economy and Parkinson's. My amounts are small compared to many. And should I be stashing it away for worse times. I guess to some I seem frivilous yet something keeps pushing me on. It is as if God wants the world to see the pain in this disease. He wants the world to notice and know the signs and I am his venue. Two of my grandfathers favorite sayings were: "Everything I have almost works" and "Look for the reason but never ask Why?" I guess I have vented enough and I'll listen to my ancestors and guit questioning Why and start with Because. Because the cure is there and it needs to come to the surface. Millions could be suffer free....WOW Pokie
Monday February 23, 2009
Posted by: pokie too at 9:28PM CST on February 23, 2009
Today was quite the day! March 14, 2009 I will fly to Washington, D.C. to lobby congress about the new medical package and stem cell research. This is something I have always wanted to do and now on my sixty third birthday I have been given the chance. I spent the day booking flights and hotel rooms and even got a call to tour the White House....Security willing.??....I will train with PAN..Parkinson's Action Network and then visit my Congressmen for the 19th District in Illinois. What a perfect year to speak my peace and maybe have it make a difference. There are so many opportunities for the very common man to get his ideas out to the world. Freedom of speech is alive and doing well. In the past year I have went from town to town, conference to conference, trying to get people to realize that Parkinson's Disease is not just a very old person asleep in a wheel chair somewhere in a nursing home. We are alive and vibrant and active. Maybe our movements are slow and our speaking quiet and hard to hear, but our thoughts are clear and our actions are strong.....and there are millions of us out there that need your friendship and caring. There is a cure to this disease and I don't think it is far away.....It may not cure me but then again it might. Everytime I attend a meeting or send in a pledge or donation the path gets shorter to that cure. I'm not the kind of person to follow wild dreams...If I believe in something I do give it everything I have. My passion is Parkinson's and finding a cure so my grandkids do not to suffer through this....
Second on my list today was my reservations for New York City and the 2009 Unity Walk. Holiday Inn will be my home for four days and Saturday April 25, 2009 I will walk the two mile path with over 10,000 other patients, caregivers, friends and lovers with Parkinson's Disease. That was the beginning last year and now look where we have gone.....Pray for me and all those who carry this disease within them or have love ones who have this..and help us all you can...love pokie
Friday February 20, 2009
Posted by: pokie too at 10:00PM CST on February 20, 2009
I have been trying desparately to do something for the past two weeks that does not come naturally to "Parkies" or people with Parkinson's Diseases. That simple task has been to organize my life toward some sort of sanity and as o today I cannot tell if I'm losing or gaining. At this moment I have these things going on; a Parkinson support group in Vandalia once a month, a unity quilt being quilted for the Unity Walk in April; co-captain for Team Patientslikeme at the Walk; 19th District Parkinson Action Network Coordinator; A developer of the 1st Annual Neurological Disorder Conference in Vandalia, Ill on May 2, 2009 and March 14th I will go to Washington, D.C. to lobby Congress for the new health bill. What do most women do when faced with such caous in their lives? They pick up themselves and go shopping. So yesterday that is just what I did. I ventured out to prop up the economy with my own stimulus package. In my very warped mind, in order for me to get organized I needed to buy a Blackberry and in order to understand how to operate it, I needed rest. I walked into the Verizon store here in town and by the time I got out I had bought a very fancy Blackberry with all the trimmings and a couch , chair, ottoman, and three tables. I know Barack, you are so proud of me. So is Vandalia economy and I was probably the best sale all day for the phone shop and furniture store. Now as winter progresses on I will be able to fall asleep on my new couch and dream of a better day where everyone owns a Blackberry and knows how to use it........love Pokie
Thursday February 12, 2009
Posted by: pokie too at 9:16AM CST on February 12, 2009
I've never been one to dwell in the past. Whether running from that past or refusing to acknowledge it, I have always preferred the present. In the past weeks the past has come back to me in some of the nicest ways.Some events I initiated and some just came from nowhere. There is a little lady in our town who is known far and wide for her faith and love of life. When I worked at Krogers, Pat came in daily and we would talk. She was instrumental in me going to work for the state of Illinois in the early nineties and then we drifted apart. We don't live four miles apart but just didn't get together. I was intervieved for the paper recently and here came a card. She now weights 78 lbs. but what a spitfire she is....She answered the phone with a perky "Good morning sunshine" and almost twenty years melted away.
Then much to my surprise a childhood crush from right next door tracked me down and emailed me. Now coming up on his fortieth wedding anniversary and having the time of his life retired, we reunited and in that union so many memories of my childhood and how great it was, have once again became a part of my memory. What ever happen to the days before schedules that don't end until 8 or 9 at night and one parent takes one child and the other takes one and they may meet in bed at 11 o'clock. No wonder families are falling apart. I am not looking for Ozzie and Harriet but what happen to five o'clock supper and the news with a round table discussion of the day. All these questions make me very out dated to the little ones around me. And they do not understand the phrase, "I'd rather be a garbage man in heaven than a mayor in hell" Do you think they will get the message in time to save the world? Love doesn't exist on a 7 minute time schedule........Pokie Friday February 6, 2009
Posted by: pokie too at 9:50AM CST on February 6, 2009
Today is Thursday. The day before the weekend. The time when all the areas of my life come together in confusion for two days of listening, laughing and savoring all things around me. My family, as all do these days, are so busy with games and school events. Cell phones and texting have taken over face to face conversations and all things seem to be lost in cyberspace only to be retrieved if you could remember the password. What kind of mood was I in when I ventured into a conversation with a fifteen year old, only to find out that I was the last thing on the planet earth she was paying attention to? How about the eight year old who gets your attention by telling a story that starts out "Gramma Nee Nay". Right there he has me and I'm listening and he makes up some wild story and I believe every word. So tickled someone has actually singled me out to talk to, I pass the story on....only to see him standing in the corner grinning as I realize he made it all up. There is one trying to impress another and one going as fast as he can go doing what a four year old does best. Little fingers are just flying in search of the perfect treasure that I have stashed away for them to see at a later time. And then there is "Little Jesus". Precious little guy, just seven months old, who follows you with those big blue eyes as the curls fall in ringlets around his face. You see the perfect cherub staring at every move you make. He pulls you in just like a magnet and begs you to pick him up, without a word being spoken. The kids pile in around him and he grabs their faces and gives them kisses and pulls their hair while Gramma Nee Nay watches from the side lines and knows, "Life Is Still So Good".
Wednesday February 4, 2009
Posted by: pokie too at 4:23PM CST on February 4, 2009
Phones are ringing and everyone is getting into a very excited mood for Vandalia's First Annual Parkinson Health Conference. May 2, 2009 is the date to remember and the time will be from 12:00 - 5:00. A mixer will follow sign-in and registration for an hour and the meeting will run from 1:00-5:00 with snacks being served throughout.
Guest Speakers include David Zid and Jackie Russell from Columbus, Ohio. David is a graduate of the Ohio State University and has been a professional fitness instructor in Columbus, Ohio since 1997. Certified through ACE and APG as a personal trainer and functional fitness trainer, respectively he is the owner and president of Columbus Health Works, a personal training company that he started in 1999. As as energetic coach for hundreds of clients and other personal trainers, he has developed a special interest in the older adult client. His focus on Parkinson's disease clients has been very rewarding. Currently, he values the time he spends as the leader and creator of a group exercise class specifically designed doe the people with Parkinson's disease. In addition to publishing hid first video about exercise available for purchase. Both are avaiable at www.delaythedisease.com and on Amazon. He has been well received as a speaker with his partner, Jackie Russell at many Parkinson's support group meetings and conferences. Jackie is a nurse in Columbus, Ohio that has a dedicated interest in the treatment of Parkinson's patients. She graduated from the Ohio State University with a Bachelor of Science in Nursing in 1979 and is credentialed with professional achievement in perioperative nursing (CNOR) and ACLS certified. She was recently nominated as one of Central Ohio's 20 Influential Women You Should Know (January 2009) for her work with the Parkinson's Community. Thanks to Debbie Guyard and St. Louis APDA Information and Referral, and Kim Shanks Fayette County Hospital and so many more it will be an excellent chance for patients and medical personel, plus doctors and businesses to come together on a common ground to better serve our community. thanks again pokie
Posted by: pokie too at 12:45PM CST on February 4, 2009
If the answer is yes you might want to check out this ad in the St. Louis Post Dispatch. Synosia Therapeutics is sponsoring an investagational new medication study. Participants will receive medical, neurological and phychological assessments, brain scans, EKGs and study medication at no cost while still taking your regular Parkinson medication. study requirements are: currently taking levodopa/carbidopa (sinemet), not using amantadine, Mirapex, or requip, must be between 40-75 years old. Study participation includes: compensation for your time and four visits within a month.
Study is through WASHNGTON UNIVERSITY SCHOOL OF MEDICINE study conducted by Kevin Black, M.D. 1-800-434-0933 or 314-388-5120 or email Nathan Koller:kollern@npg.wustl.edu. This seems to be an excellent opportunity for the area......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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• Jessus, prayer, pain
• Christmas, rebirth • hope • support • caring • washington U • Parkinson's • PAN FORUM-2 • pokie too • Fayette Co, Ill • pokie too-3 • brother
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