Sunday, June 22, 2008

The Coffee Shop.....

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Very early in the morning in cyberland, something so neat happens almost every day. People from all over the world congregate at one place for imaginary coffee and chat. This morning we had representation from Illinois, California, Colorado, Tennessee, and Wyoming and Spain. As the jokes were flying all of a sudden Nicole (browncat) started telling us what she had to do to start her day after recent DBS surgery. She didn't just say I push a button and I feel better. She said starting tremor and giving stimulus and then there was a pause while we waited for the next event to happen as her brain adjusted to a new stimulator she had just received and was learning to operate. How do I thank this little gal from Colorado for sharing this most intimate of experiences with us with such detail and strength? I really don't think that's possible. I can only say I got cold chills as she went through the thirty minute ritual.

It started with a post a couple of months ago saying. I have decided to have DBS surgery will you keep me in your prayers and thoughts and that we did. The very day of the surgery she managed to get out a few lines to us to let us know she was doing well and we started sending her cards, both by email or postal daily.....yes, we phone call each other also....someone is always in touch for support. With the help of Patientslikeme.com we try to be available for each other 24-7....in the belief that a kind word or a moment of prayer can sometimes take the pain away or at least divert the mind to another place to make the pain more tolerable.

During these discussions a bond is formed that helps each patient to feel easier about discussing symptoms that maybe have been forgotten or lost in the process. Sometimes only one of us or maybe two have the same symptom and sometimes it's hundreds. Those who have different symptoms from everyone else are very important because could represent a new turn in this disease or someone is having success with a new drug or they tried something on their own and it worked. The important thing is they are talking and getting it out. This is not a pretty disease and it's not forgiving. It's brutal in it's attack on us and if we try to fight it alone it is very depressing for us and our families. But with friends who know just exactly where we are coming from the day is easier and the soul is able to laugh, if for only an instant.....

The other day I posted a picture of a dead tree amongst a row of very healthy green trees. I pulled up to the bank drive through and looked up and there was this tree. I could not wait to take a picture. It seem to be saying something to me so loudly....."Look even in death I am stately and proud and I stand out. I am the ruler of my surroundings." If there is nothing I can leave behind I hope someone remembers this picture of this tree. It had it's own grace , it's own beauty for those who would care to look for it. Ok, Pokie what does this have to do with Nicole? Nicole has taken a very bad situation and turned it around. She takes each day and tries to make it better. She's never given up. And she has selflessly shared her experiences to us knowing we are faced with the question daily should I have surgery or not.

My hat is off to you Nicole and continue to purr.......your such an inspiration to all of us .....love POKIE

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Today With PokieToo and Parkinson's and Acute RA Disease