Here is Parkinson's in Washington, D.C.

Thank you Rep. Shimkus for giving us such a warm welcome to your home away from home. Our small band of family and patients with Parkinson's Disease so appreciated that warm smile that gave us the extra strength to complete our goal. If you look real close you can see the smile you are bringing to Bill's face as we kid him about you two dapper guys with so many good looking women. I hope we explained our plight well and we pray for your continued support with the caucus and bills coming due. Thank you again Pokie

Everyday is new......

The funny part of Parkinson's Disease is that no two days are the same. You wake in the morning and your first thought is what will move today? Sometimes only the brain dances out to play and some days the whole body gets involved. Everyone of us is so different. They say different attracts. In the Parkinson's community this is so very true...all ages and sizes, all genders and beliefs yet when you get us all in one room how well we bond. Is it because people with Parksinson's so often talk with their heart and eyes instead of worrying about appearances, we struggle on and try to smile. While traveling this past week, I met a brother and sister team fighting Parkinson's Disease. She was his caregiver and was very efficient but so hostile. He was so quiet and never said a word, mainly because he was never given a chance. She let me know early the whole program we were in did not fit her taste and when I had to go take a nap for two hours in the afternoon....I was hurting her team. Come to find out I wasn't even on her team just sharing the table....Later on the Hill I got a chance to get a few words in with her brother while walking between meetings. He turns out to be very angry at the whole business of having Parkinson's. He is so highly educated and at the top of his field and unable to use any of his skills. His natural question is why....and what do I do with all this knowledge.?My answer was this. Re channel as only you can. You know your goods and bads. Take the best and run with it. Try not to look down always. Try to focus on up. Find a passion in all this and push it to the max. Be it writing or travel, crafts or painting or just meditation. Life, when you are diagnosed with PARKINSON'S, looks so short and every minute must be used for a passion. Some focus on a cure....I focus on the relationships and what brings that sparkle back to your eyes. Some people, I have found, may have never found their passion and still may never. It's not easy. And once you find it you will be constantly bombarded for following it, but if it is God's work,you will find a way and you will enjoy every second of your new found life. The cliche is that one door shuts and another opens....yes there is always something else and no shortage of people with needs and troubles. The gentleman I talked about was a passing friend. I may never meet him again but it will never stop me from wishing him and his sister well.....her peace with the world and he peace with that same world through the many great talents he has.......love pokie

There is a story.....

There is a story about four people named: Everybody, somebody, Anybody, and No Body. 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 Now is not the time to be any of these four people if you have a neurological disorder. If so you must stay atop of the daily changes in your world and your method of doctoring....With the stem cell funds released a simple call for a doctor appointment may take an hour.....especially if you are searching for a neuro who is also a movement disorder specialist. We should all compose a letter of entry for ourselves and start mailing it to the larger research areas asking to join their program or become a part of their studies. Don't be left behind or fall through the cracks. Things are moving fast. If you have a disorder and are expecting a child or grandchild, let them know because of the umbilical cord. This has to be taken care of ahead of time....This is a lasting thing you can do for your family that will last forever.....love pokie

Here's to Finesticher......always

February 13, with a very sad heart I posted as best I could, the fact that I would not be going to the PAN Forum in Washington , D.C. next Saturday. The denial of my scholarship just totally knocked the props out from under me. I can honestly say now in hind site that it was a good thing. Nothing should ever be taken for rated in life. Though I had planned for many months on going, the appreciation of the event was not truly felt until I was faced with not going. I tried to be matter of fact about the whole situation but finally just broke down. Had it not been for one very special person, whom I love with all my heart, I would be sitting at home this Saturday night asking, "Why Me, on a year when the whole Parkinson's community will come together for a stem cell victory". That one and only person travels this circuit and takes so little credit for what she does and gets done. I believe nine years she has fought and fought hard for Parkinson's awareness. Not always in the best of mental or physical health and despite all odds she continued to bring the health news of the day to everyone on Patientslikeme.com. She never received pay and very few thanks. She's a webmaster and one of the most intelligent women I have ever known. Her current project is PWP NEWS and it is the best I have seen. Everything that is going on in the Parkinson community, worldwide is listed in this newsletter daily. she not only works with Pan but PDF and yes that is her on the cover of their DVD. I met her in October of 2006 when I signed on to PLM. I knew nothing about the computer world and to me she walked on water. Then in October of the next year I won a Scholarship to Atlanta, YOPN Convention. and Carolyn was going to be there as a presenter. She walked up behind me and slipped the DVD in my pocket stating I will need this later....I just could not speak.....I admired her so and here she was in the flesh. I went up stairs a little later and was proudly laying all my treasures out on the bed , when I noticed that the lady on the DVD was Carolyn. I about had a heart attack. I grabbed it and went back down stairs and said,"Sign this". She looked at me so surprised....not knowing that very seldom in your lifetime do you meet one of your mentors. Yes, I am talking about Carolyn Stephenson or Finesticher as we call her on PLM. When Carolyn found out I was not going she kicked into high gear and called everywhere getting me in. By Tuesday morning arrangements were being made for me to go. Me going to Washington, D.C. a week after President Obama signs the Stem Cell Research Bill back into funding...meaning a life line has been sent to so many with Neurological Disorders living with no hope for a cure. To Carolyn I can only say she has played a huge part in this day, though she would never admit it. She never stands up and shouts but she is none the less so effective in her own ways. I'll be sixty three Saturday and when I grow up I hope to be like Carolyn even though I believe she is younger than me. I'm sorry dear, but I cannot help but follow you around in wide eye amazement and awe..... now before you find some way to delete this, want to say thank you from the bottom of my heart for ever and you and Pegs first meal in Washington is on me...love Pokie