Saturday, May 31, 2008

A nice quiet night at the farm.....

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My days and nights lately have blended one into the other. As often happens with PD the smallest of things can trigger such huge results. Depression is a constant visitor to my house, though I seldom let him in to stay. And what you must realize is that when a"Parkie" gets sad or down it effects everything we do. Our health just generally goes in the bucket until we get turned around. Pain is an everyday participant in my life but when I'm down it's unbearable. It's not a knee ache or headache it's a general all over hurt to the bone that just beckons you to curl up in a ball and hide. As someone once said the only way to conquer the pain was to work but when you can't even lift your arm to wash a dish work doesn't come easy.....

Some of us give our disease a name and they are quite varied. Jack calls his the Beast and Eliza calls her Joe Parker. When I shake real bad I call out, "Hey you, stop!" and sometimes he does. one of the nicer things is, I have never heard PD referred to in the female gender. In my mind
this would be very simple to do because sometimes Parkinson's Disease takes on all of th characteristics of a cranky old woman in the wrong time of the month, who is just not happy with anything or anyone around her with a bull headed nature that will outlive anything,

The midwest suffered a series of very bad storms last night and though they do not bother me, they scare my 83 year old mother to death . She has advanced Alzheimers Disease and everything she sees on tv is surely going to happen to her.......from tornadoes, to killings and then some....Now there is always that possibility but I have never been one to worry about these things in any length and for sure not loose sleep over it. So thus the stage was set for me to have one of those nights.....

My mother and her dog moved into my bed along with my two cats and I shut the door. I went to the study with the recliner, really hoping to get caught up on my mail and typing in the QUIET??? My mom got up at least three times the first hour for miscellaneous storm sitings and each one was followed by a verbal warning to me as to the severity of the situation. As if that were not enough. Then I started to get the dance of the two dogs who though large are a couple of "Wusses," I had the study door shut but I could hear this huge commotion going on just outside. I got up once again and open the door and what awaited me?..... My chocolate lab and a very old male beagle and all of my mothers cats four or five were in the hall begging to get into the room with me. Ok , it seems the chocolate lab was the ring leader and decided outside was no place for any one or thing with thunder like that and so he just kept bumping the basement door until it opened . At which time he must have invited the neighborhood in. I can just hear him telling them,"Come on in guys. she'll never hear us . Here's the food pan . Have a snack and check the place out" Well it was like Noah 's Ark outside my study door. In any normal situation one would just pick the animals up and set them back outside but I live on anything but a normal farm with nothing but totally crazy animals. In the mix of intruders were three rather large tom cats and two very small female cats. After cleaning out the food pan , the tom cats noticed a great chance to party and started running from each other...so for the next hour I grabbed cats from very precarious places and "Exited them stage left." By now I was feeling very sorry for myself which always causes me to talk to myself and the first thing out of my mouth was, "I can not understand why this farm cannot get it through it's head that I HAVE PARKINSON'S and I cannot do this!" and what DO I GET BACK FROM THEM?.....this blank expressionless look on their faces that only a "Parkie" can know.

So if from time to time my writings seem to ramble and be distracted .....they are. POKIE

Finding contentment......

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....I have this game I play with myself almost everyday. I go to my library and pull out a book or the bible and let it fall open and I read. Almost every time it is something that fits into what I am worrying about....I have always thought this to be God's way of leading me to the water. Today's message was ...I have learned, in whatsoever state I am therewith to be content...Philippians 4:11

Such a short statement , yet so meaningful to me at this time. I am not my usual self lately and I realize that and I know it will improve but that knowledge does not lessen the blow this plays on my inner being. I have the ability to soar to almost a manic state of happiness and yet when I'm down it takes me a while to get up again. Parkinson's Disease does nothing to help this condition. And once it takes over the fatigue and pain are unreal.....I've been there and am coming through the tunnel and I am almost to the other side. The whole process gives new meaning to "I See the Light." I have found that the Lord gave me at least one blessing to fight this with and that is being bull headed. I fight this with everything in my being.....Happiness is a very precious gift to us with PD. As my disease progresses, more and more things have to be stored away as memories because I will never be able to do them again. This physically hurts yet today I realized that as old things are being taken away they are being replaced with new things and in that I should not morn the loss but celebrate the new beginnings. I'm headed to a happier state and when I get there the words will flow ever again...........

Friday, May 30, 2008

Poets and Authors and all those good things......

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The memories of New York City still dance merrily in my brain and I yearn to go back but I know the excitement would not be there without everyone. I believed then and still believe now that God presented New York City and Parkinson's to me as a challenge....He would work through me to get the word out. To show the importance of faith and the part it plays in healing.

When the ordinary person thinks about Parkinson's Disease, I doubt they ever think about the talent that is sometimes quieted by it's progression. Among us we have actor's that no longer grace the stage and fighters who will never fight again but we also have surgeons who can not operate and chemist that are not inventing. There are poets and essayists and authors all frozen in a warp that keeps their thoughts from ever getting to the public...we are not just the person in the nursing home, sitting quietly in a corner with a blank stare..

10,000 people connected to Parkinson's came together in Central Park to put the top on a year of fund raising and what a top we did put on it...almost 2 million dollars was raised for research. So to keep the ball rolling and to help the public not to forget us August 2 I'm going to the other side of the United States in San Francisco, California to cheer on my friends from the site Patientslikeme.com as they attempt to surpass their goal for Parkinson's Research in a 5K Run....Karen and Ukelady have been training for almost a year for this event and could use all the support you could give them. Weither they walk or run or roll they are out there trying and that is what counts. You can donate on line at www.team-parknson.org. This will be a huge event, lasting three days August 1-3, 2008...check them out on line and send them a donation...This is taking so much for them to participate in this. Sometimes just to walk for Karen is a huge accomplishment.....Butterflynana and Ukelady write beautiful poetry and there's a book wondering around there too..Often on the site we have poetry fests all night . Posting as fast as we can free style or borrow.....Yep, this is how we fight PD at PLM and by morning the pain is gone and we have survived another day....

The research we provide is not always black and white. I might be taking a new medicine and am worried about it...I can ask if someone else is taking it, see how they liked it, did they have side effects that I need to look for. This is how communication through friendships is working. Meanwhile the answers are researched and compiled and a reference is made and though our bodies may be in painful, sorry shape sometimes our brains come shining through to the rescue

If your reading this tonight, give me a second and remember how fast this disease is moving. You are a loved one could be next. Being young won't save you, neither will being smart, or being rich. Color of skin doesn't matter and neither does weight or stature so give like there is no tomorrow and help us out Thanks POKIE

Today With PokieToo and Parkinson's and Acute RA Disease