Jude,
Over the years I have been told by hundreds of people that I need to tell my story. I need to write a book. Yeah well, I don't know about that, but living with TM for over thirty years has been a challenge in almost every area of my life from finding a career, traveling, finding a place to live, drug dependence, acceptance from peers, finding a mate, sexuality, establishing relationships or maintaining them, finances, discrimination, health, family, parenthood, even spirituality. Back in the late 70's I was very active in wheelchair sports and befriended several people with spinal cord injuries but they never really understood the complexities of TM. Back then I was a walking wounded. I walked with a cane. Not very well or very fast but I walked. But, I had all of the other problems that we have with TM. Bladder and bowel problems. Fatigue, spasms, chronic back and leg pain. You know the song. Most of the other SCI people I knew didn't have all of that. As a matter of fact, one friend of mine who was a complete paraplegic with his back broke in the lumbar region told me that he was luckier than me because he didn't have the chronic pain, he just couldn't walk. He even had better bladder & bowel control. When I found this group, I finally found people who completely understood what I've been through and how it has effected me. How living with TM has shaped who I am today. This is the place I can & have shared things with someone that I have never shared before. Things I never told my doctor, my wife or anyone else. I tried to be "normal" but I wasn't. I had TM and it was part of who I am. I try not to "be my diagnosis" and have as much as a regular existence but paralysis whether complete or incomplete is always slapping my in the face. I think any information we can provide to newbie's, medical students or other professionals or the world in general would be of great help. It will take me a while but I would be happy to help in any way. I'll try to start "remembering" and noting things in my journal. I'll let you know.
Larry in Oklahoma where it is a beautiful day
Larry Throne, MSW
From: [EMAIL PROTECTED]
To: [email protected]
Subject: [TMIC] TMIC SURVEY
Date: Sun, 1 Apr 2007 04:38:59 EDT
I would like to take a survey but might need help in setting it up. I would like to make several graphs with all of our individual information on them. Such as:1. Who has true paralysis "The Inability to Lift Ones Limbs Against Gravity" and in what part of the body each of us is affected by the paralysis.2. Do we need to break it down into individual body parts to make it specific? Like who can move their right arm, right leg, right side etc?Or is this all too much trouble?I'd like to write a book about all of us. Names could be used when it is permitted and left out when you don't want to include it...but I'd like to include everybody's story.I want to include some medical information that can be validated, so that people will be able to better understand what goes on inside of our bodies. Like the way Frank just described the two different nerves in our bodies...some transfer sensation and others transfer movement. I didn't know that.But mostly I want it to be about us...how we feel, what we go through, how our lives differ, how people treat us...everything. It would almost have to be a group effort. It would take a long time to organize, to compile, to make it interesting and readable.Is there anyone out there who will help me with this? I want it to be a really good book and I know it can be done...Am I just a dreamer? Can I really see this through to the end? Will you all tell me your stories, experiences (before and after TM)?Has anyone tried this before? Or am I nuts?Love You All,Jude
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