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Pokie's Journey to 2009

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March 2009

Tuesday March 24, 2009

PARKINSON'S IN WASHINGTON, D.C.

Posted by: pokie too at 10:35AM CST on March 24, 2009

In the past week I have realized what it means to say I am a Proud American. I traveled to Washington, D.C. for the fifteen annual Parkinson's Action Network (PAN) Forum March 15-19, 2009. I have always been very aware of how special the U.S.A. is but nothing like what washed over me when I stood in front of Congress. How anyone could build such buildings that far back in time without modern equipment amazes me. Not only was I humbled by the size but by the all out acceptance we received on the Hill. Each representative we visited met us with open arms and seemed very knowledgable of our plight and our course of action. I so want to thank Representative Shimkus, Harre and Pickett and Congressmen Durbin and Burris for their time and honest caring and attention to the bills that are in the near future that will spead our jouney to a cure for not only Parkinson's but MS. MDA, and more. This is such a special time in the history of not only the world but for Neurological Disorders. When you visit Washington you could feel the excitement that was present because of the stem cell bill and the new joining of the Parkinson's ans MS community and the New Registry for Disease Control that will so help in giving these diseases a date base to cross reference. You will be hearing form me for some time about this trip because it was just that awesome. I made friends for life in such a short time and renewed friendships I have made in the past year. A more loving Community you will never find than the Parkinson's Community.....what a way to celebrate your 62 birthday, surrounded by a couple hundred of your best friends in such a beautiful city......love pokie

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Thursday March 12, 2009

THERE IS A STORY......

Posted by: pokie too at 9:16PM CST on March 12, 2009

"There is a story about four people named: Everybody, Somebody, Anybody, and Nobody. There was an important job to be done and Everyone was sure that somebody would do it. Anybody could have done it but Nobody did it".......Helen Lourie Marshall

If you know these people, please do not follow their example. You are living in a history making time if you have a neurological disorder. If you tried to call your neuro today he phones are all a buzz and what might have take a few minutes now may take an hour. If you are a patient, jump in and take charge of your doctoring so you do not remain behind or slip through the cracks. Make no mistake changes are happening and fast Particularly for anything involving stem call or embio research. If you are a patient and are expecting a son or daughter or a grandparent expecting a grandchild, conceder saving the cord for family use.....what better legacy could you leave them. Get the 23 Me genome test done and just like a will or money leave them the gift of life. All of this takes advanced planning...Think about it.

I've not got time to do this justice tonight, but I will be back. As for now tomorrow I will be in your fair city over night at the Marriott and then fly into Washington, D.C. Saturday for the 15th Annual Parkinson's Action Network Forum. this will involve five days of intense study, tied in with two days on the Hill with Congress.....What a year to get to do something I have always wanted to do. I bought a new walker today and I'm ready to let them see my pain and ask for help....More when I get back love pokie

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Sunday March 8, 2009

I'm Back and Begging!!!!!

Posted by: pokie too at 8:36PM CST on March 8, 2009

WoW, I didn't realize how long I have been away from here. I have been drastically under the weather for almost a month and hope finally am seeing light at the end of the tunnel. I also hope it is not another freight train coming. My meds got off and the muscles tightened up and all of a sudden I was walking with GREAT difficulty. This is not good timing on my body's part because if I ever have a full schedule it is now and through most of the summer. I made an emergency trip to St. Lukes Friday and hopefully a meeting of the minds have provided me an out for you see I leave Saturday morning for five intense days in Washington,D.C. to lobby Congress at the 15th Annual Parkinson's Action Network Forum. I am now the 19th District coordinator and this will be my first trip....three days of training and two days on the Hill one on one. What better timing since the President signs the Stem Cell bill Monday Morning. I know how controversial this is but I personally think it's about time....so much mis information is out there. And we have lost some excellent future leaders for our country because the bill was vetoed in the first place. They will not save me.....I would be foolish to think they would move that fast, but they may save my grandchildren and that is all I ask.

With the new increase feeling of well being, I have pleadged to be in the fourground constantly . I would love for the world to know that people with Parkinson's Disease are productive , useful participants in society. I'll show you my pain, you show me a cure and fast. Cut the red tape and quit passing that almighty dollar. The cure is close. We all feel it. Bring it on!

You as a responsible citizen can say "yes I knew they could do it" or you can say "yes I helped them do it" you choose. Your internet savvy or you wouldn't be here. Find a place donate for the cure $10.00 dollars goes a long way. Go to the sites and donate 2009 Parkinson's Unity Walk in New York, PAN, STL APDA, NPF, MJMF, PICK AND CHOOSE.

I will be in Washington for everyone who has a Neurological Disorder saying, "Please help fund our needs" We are Struggling as is everyone else but we are your common man who made this country what it is and we are fighters to the end. We don't fly on fancy jets, our meals are our meds, which cost a fortune. We need special wheelchairs and walkers. We should not have to beg. I hope something I have said here has struck a cord and induced a sincere thought or concern. Great things can come from people with Parkinson's just ask Janet Reno, Ali, Davis Phenny, and of course Michael. Be a participant and not a watcher...it feels good...love pokie

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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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