From: CumbyCrawfish  (Original Message)

Sent: 10/25/2004 2:02 AM

My most embarrassing moment came after 10 years as a Parkie teaching Counseling to graduate students. I did not realize how slurred my speech or how awkward my posture had become until i saw myself on videotape doing supervision. What a rude awakening to my denial! At the end of that semester, i retired--a college professor that can't speak, write or type is not very much a need of the education system! I have always taught that it is important for we humans to face our pain, so the night of this incident, I wrote the following. I was not and am not depressed--just sad at the time. WHAT HAS BECOME OF ME, MY FRIEND? What has become of me, my dear friend? Yesterday I saw myself on videotape. I was shocked to see someone I don't know in my place. On the inside [in my awareness] where I live, I am still the coordinated, bright, articulate, outgoing, confident person i have always experienced myself to be-- still physically somewhat attractive, appealing, capable, and with hopes and dreams for the future. But what has become of me, my friend? Instead of the me I know, I saw a grotesque image og what i have become-- an awkward man with unsteady movement who stands with heads and limbs askew at uncomfortable angles, hands contorted, head shaking, a stranger of slurred speech and strained voice, almost unintelligible, obviously fighting to form comprehensible words, frozen in a struggle with present reality. What has become of me, my friend? Am I the one I remember, myself, OR Am I the grotesque image I see stealing my place? I AM HERE, but can you see the real me? I cry over the loss of myself. What has become of me, my friend? Have dead neurons and dopamine deficiencies erased me OR Do i still exist? This damned disease is a dirty trick, you know, my friend. Ron Crawford@2003

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From: Whichmikeru2 Sent: 10/25/2004 7:22 AM interesting question Ron, do "I" still exist. perhaps the core question of your exploration is what is a person? are we merely this finite set of possible actions and interactions for the perceived reality in whcih we find ourselves? If this thesis is correct then something like PD should change everything about who we are and what we are and yet despite the infringement on our abilities--speak, motor skills, etc.i find my "self" to be essentially unchanged by this dramatic addition to my life. in fact i see the frustration and the sorrow that we all feel as proof that our essential selves remain unchanged since if our self  had changed with the loss of limb, job or ability then we would simply be this new person and not miss the old, much like a dog that loses a leg in traffic accident does not lament the loss of his ability to jump high into the air and catch a frisbee but rather simply continues to be a three-legged dog. we however mourn the loss of an ability and a frustrated with trying to be "our selves" in this new form. between 600-300 BC the Greeks began to speak of the soul of man as the essential and everlasting self of each person recognizing that there is something unique about humans. creation epics down through the ages have seen human existence as unique and precious to one degree or another and approximately 2/3 of the world recognizes that the :person" is much more valuable to the community than his or her abilities. the long and the short of it is i have been completely impacted in my abilities by PD but this is not who i am it is merely what i do (did) pd can make a hole in my brain but it cannot make a hole in "me". no one goes to the edge of the grande canyon at sunrise and laments the lose of all those layers of strata over the years. the ground simply changed as we have in our external appearance. you my friend are older than you once were as we all are . change is inevitable and yet you and i are secure in our "selves" unchanged by the erosion of the river of life that is forming our lives into soemthing different and unique.

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From: june24dbs Sent: 10/26/2004 6:01 AM I know how you feel Ron, but I have met you in person and your personality and your sweetness hides any or all physical mishaps that Parkinson give us.   Do you think I  or anybody around you that has pd look grotesque?   In a lighter note:   One of sooo many embarrassing moments:   I had no Idea that Elvis Presley (impersonator) would have come and sign at the pool that warm day while vacationing with my family.  I was all by myself when suddenly I see people gathering around me and then "Elvis" introduced himself to the crowd.  Having parkinson was evident that i was not only shaking but also nerveous.  I had sat in the escenario and not being able to move out quickly, he saw me and moving all his body he started singing at me "I am all shook up."

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From: sametenponim Sent: 11/16/2004 5:32 AM I haven't seen myself on a cruel videotape, Ron. But I must have shown a very similar pattern during my last semesters of teaching. Oh, I loved teaching so much and it had been a source of joy, self-fulfilment and contentment. And most of all it fed my pride. Or should I say vanity? Let's say I was proud that after 21 years of pd I was still able to work, to teach, to be in charge. My hint came from a student. When I hurried to the classroom he joined me on the stairs and said: "still fighting, ruth?"  It had become a fight, a battle I could not win. However, it took me the whole summer until I was ready to admit: It's over. And now I am sitting here tears allover reading ron's lament. I was pleased to read your friends comment about how your charming personality was not impaired by parkinson's ugly mask. It made me think. The parkinson person you recognised on the tape as being you, was a visual representation. All of a sudden you saw ugly parki's mask where you were used to seeing attractive you.  It was you and the visual center of your brain that had vested you with the parkinson costume. One step of a long journey. Or one step back. Retirement. That was the message, sad but necessary. What I want to say, Ron and I am saying it as a professor who retired this fall. Even if you heard the cruel laughter of proceeding parkinson's the person in the tape was you and it was you who read the signs and acted accordingly. Sounds like somebody in charge, somebody  I would trust, somebody with a unique capacity of analysing and relating. We can't get rid of him but he will never get us. ruth

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From: CumbyCrawfish Sent: 11/16/2004 5:52 AM Ruth, I am no longer sad about the lloss of physical self, or at least, not so sad.  i have always tried to recognize, honor, and give time to my emotions--my way of remaining transparent and genuine.  I write about my feelings as part of owning them, so that I can then go on without their seeping out in problematic ways.  So I am able to cry and laugh in thre same day or hour.  what you read was my processing my losses in the past.  but your words have touched me and reminded me of the sadness alll Parkies share.  Thank you for sharing yourself with me and others.   Ron

Ron Crawford