Diversity

As I was wading waist deep through my email, tonight, I realized there is one very large thing we with chronic diseases are doing WRONG. There is a storehouse of information that applies from one disease to another that we are not taking advantage of. For instance, using the information furnished by the Christopher Reeves Foundation to help me live with Parkinson's Disease. I read in their forum of a fifty one year old couple who have been together since high school. For the last 15 months they have been learning how to cope with care giving and their fears of what lie ahead. As I was reading this I was struck by her love for her husband and how brutally honest she was able to be about the consumption of her time to keep their family going. All she said is universal...whether paralyzed or disabled in another fashion. Yet so many will never read her words because the Christopher Reeves Foundation is not a regular stop for Parkinson's Patients. This is not helping us toward a cure on any front. As patients and caregivers we must be constantly vigilant of new areas for information for all concerned. Tonight in my travels, I have learned very good tips on traveling with a wheelchair, the news on new physical therapy, and a love story that brought tears to my eyes.

My interests are so varied, as you can tell. Colon Cancer is very high on my list as is ALS and MS not to mention Epilepsy and all the many rare neurological diseases and in the past few years I have learned that the more you reach out the more you receive. Try this today or soon and reap the rewards. Branch off from your main concern and check around somewhere else for NEW MATERIAL, a new insight on an old disease. someone Else's viewpoint. There is so much out there that can be cross referenced and used to your benefit.

This is a quote I found tonight: "There is something about our spirit that drives us toward life. Just as a tree sprout will grow toward the sun, we are drawn toward wholeness." and in that growth we must be ever conscious of the helpful forces there to nurture and sustain our growth. That sprout will never make it on his own but with God's help and support from his surroundings...he will survive and thrive. Have a good day......love Pokie

Two Mustard Containers

I woke up this morning, as it always happens, with the weirdest things running through my head. This happens because I suffer from Nocturnal Seizures so they say and my brain stays quite active though I think I am sleeping. Yesterday my family treated me to lunch with all the trimmings on "our back forty"by our lake. My contribution was mustard and catchup. Nice Huh? One of the nicer things about Mother's Day. But anyway, this morning I had two what appeared to be empty mustard containers on my kitchen counter. I started to throw them away and then got this wild idea to cut them in half and see just how much mustard was left inside. I know I'm loosing it, but there was enough in one to fill the other half full...really and I would have thrown them away. Not that I was that concerned about the catchup or me starving, but something about the whole process bothered me. What if we always just operated at half our capacity or finished when we were half done....How about if we only tried half hard to do anything and and then gave up and chucked it...Is that where the world is headed? What happen to the satisfaction of knowing that you completed a job and did it well and went to bed bone tired but satisfied.....All this is coming from my two now one mustard bottle from Mother's Day. Is it safe for me to venture on into my seventies, or will I be tormented by questions of evolution and space science? Losing brain cells in one place must be causing overload or confusion in other places. Well there are surveys to be taken and other things to FINISH and I am sure the since of accomplishment is just around the corner, so with that I sign off for a glass of milk and a cookie...love ya Pokie

The Latest News From The Home Front

This is some pictures of me and the girls in NYC for the 16th Annual PUW in Central Park April 26th, 2010. A glorious time was had by all and not another hour of fun could I have crammed into the time I had there. I love NYC and this year was no exception. Did you follow my teams success? We started January 1st with not a cent collected and Walk day had collected $13,350.00 for Parkinson's Disease Research. Through the Walk, every penny of that goes to research for a cure. No red tape no overhead just research. There are no words to tell you just how proud I am of my teaam and just how much fun we had in New York, I hope you understand we had never met before except on the internet on Patientslikeme.com and yet would have thought we had been friends for ever and probably will be. As you can see I and a member of my Team went to the Today Show that Friday morning. That involved us getting to 30 Rock at 5:00am and it was very cold. We were out side till 9:30 but had a ball. Sara is a tiny thing and about froze to death but stayed right with me to the end...or at least through the first half...I thought they were done. Then I went on to a Dr.Oz taping and who did he have on but Mary J. Blieth.....look out! Back to the hotel room and off to Central Park for the kick off reception for the Walk. This was something like I had never been to in my life and loved it. I was able to connect with so many people I had talked to over the year and give them a chance to see what a 63 year old goat farmer from Illinois with Parkinson's is really like....No one ran me off. As we started the next day I was struck by the beauty of the day. All around they reported storms and rain and we had 67, a light breeze and sunshine, glorious sunshine. I had a list of people I wanted to see and memorized it. Paul was sick and couldn't make it but I had a long talk with his wife. Helena and I connected all along...so special. Gary came up right away for HUGS and the girls kidded me about blushing.....He's just a really sweet good looking guy. Matthew and I connected and I got the registration stand going with PDF fliers on the Quilt Project. Team Pictures and then I saw May May sitting behind a sign working on her poem for the program. I went over and gave her a hug and got some pictures and let me tell you why. Not because her last name is ALI and her dad is Mohammad Ali, but for the three years I have been coming to the walk, she has been there faithfully. Not with a group following along behind her, not standing out, but always with a smile and a hug. The first year I had no idea who she was and was talking to her and she mentioned her dad knew of me. The second year I talked to her and her sister and now we are friends.....You know what I appreciate her being at the walk. I wish some other big names who Could Of Would OF taken the time for the common patient, not themselves. I wish in your life time you meet this lovely lady....I cherish meeting her each year. There is so much more to tell you about my perspective of the Walk. It will take me all year to get it said and then it will be time to go again....that's what keeps me going. these hugs and smiles I collect the third weekend of every April in New York City's Central Park. Thanks Pokie