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Parkinson's is not the end

Richard
Posted: Sun Nov 18, 2007 11:20 pm Post subject: Read This. Parkinson's is
Not The End

A Good Evening to you all. For those that do not know me, I have Progressive
Supranuclear Palsy. It is under the "Parkinsons Plus" umbrella. It
progresses much quicker than Parkinsons and is normally terminal. It is what
killed the Actor Dudley Moore. I probably have 6 months before I cannot type
anymore. I am legally blind now and have all but lost my voice. I have
retrocollis dystonia and fall backwards. I have eye, shoulder and neck
surgery coming up. I am 49 years old.

Here is my message, then a true life story of one night with this disease.
My message is don't give up on one another. See one another all the way
through. Have hope and know brighter days are here if you want them to be.
Choose brighter days and live your life well. Don't let Parkinsons define
you.

 Now the Story: Last night, I awoke, thinking I heard sounds coming from our
living room. I heard a voice calling out "Mom". I tried to move but could
not. Then tried to reach to alert Tammy, but my arms would not move. I could
not speak. The sounds were still there, footsteps, shuffling around type
noises. I remember yelling, though knowing that no sound was coming from me.
Finally, I was able to move my legs over the side of the bed and fall to the
floor. I could not stand, so crawled from the bedroom to the living room. I
sat up against the wall and took a good look around. Nobody was there. I
felt someone run fingers through my hair. Thinking it was Tammy, I tried to
look up, but my eyes would not open (eyelid apraxia) right away. When
finally my eyes opened, there was no one there. Something told me to check
my blood-sugar. I crawled to the cabinet, pulled myself up and retrieved my
tester. I have been diabetic for about 4 years. Never overweight, always ate
smartly, it came from nowhere. The meter indicated "49", almost coma stage
for me. I checked it again, and the result was the same. I felt I could walk
and started toward the refrigerator. I was wrong and fell backwards hitting
the floor hard. I was dazed but still conscious. I heard someone scream
behind me, but something told me it was not real. I was thinking "this is
it". I crawled to the refrigerator without being able to see. I could not
reach the orange juice, but felt a can and opened it...it was Coke. I drank
it and was able to feel a banana and ate it. Within 20 minutes, I felt much
better. Diabetes and PSP almost killed me. I cannot tell you how good it
feels to still be here.

Rayilyn Brown
Board Member AZNPF
Arizona Chapter National Parkinson's Foundation
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