Please tell me Your ALS Story

Hello Everyone -- I am new to all of this. I hope you will forgive any intrusions into your day. However, I was hoping that some of you might be up for telling your ALS story. There is a reason why i ask this (I will get to that in a bit). But let me tell you what i would like to know. I would like to hear your story. How your life was before ALS. What did you do and what did you dream and where were you headed? Then I would like to know how all that changed for you. What symptoms did you experience. When did you know something was wrong? And what new paths did you take to get your diagnosis? Lastly, I would like to know what your life is like with a diagnosis of ALS.

Please don't think that I am making light of the disease or the people who suffer from it. Instead, I want to "see" the people that ALS touches. I want to feel as though I know who these people are and where they were headed and know about them as people. Too often, i believe, people just want to limit others to a disease or illness without knowing them and who they are. I know that ALS knows no boundaries. But I truly want to hear about the people -- I want to hear your story. If you have ALS and wish to tell your story OR if you have a friend/loved one who has/had ALS and wish to tell their story, please tell me. I would love to hear. There won't be any judgement from me and I will truly be honored and blessed by any stories that I receive.

Some of you may wonder why I ask this. I wish I had some lofty notion to give you but in fact, I desire to learn about people. And my heart has been touched by ALS. For a couple of years I have been searching for what is wrong with me. I still don't have an answer. But I have lost so much because of this unidentified illness. I have lost my job with DoD, my driver's license (in Maryland), my family, my friends, my security clearance, my home (in Maryland and New York), and my activities (tutoring mathematics). I have even stopped breathing and almost died in January 2007 -- and I have no answers as to what is going on with my body. With the spare energy and hours in the day (I still do work full time but have to work from home some days), I have started to research my symptoms and have found some interesting conclusions. While I am waiting for appointments with neurology, I wanted to hear from those touched by ALS. For anyone who feels comfortable in telling me your story, i am all "ears". Thank you so much.

Have you read Tuesday's with Morrie? There are a few other books around that tell peoples stories. One new one is called Living in the Shadows by Sheila Tarter. It sounds like what you might be looking for. Here is a link where you can find it.
[email protected] It's $20 and includes shipping in the Continental US. If you tell her Geo. Goodwin from March of Faces sent you she'll autograph it.

AL.

Hi I also wanted to add Augie's Quest, he is a fellow PALS who has now raised over 18 million dollars for ALS.. He is a inspiration, but also went through the times we all go through...He is also in the process of writing another book.. All the money goes to MDA, ALS research.. I remember running is another book.. And anothe is Your not you.. It is fiction, but is really good, it is being made into a movie with Hillary Swank playing the PAL. Hope we finally get notice.. Hope she win's another academy award...

Hi, I also read the book "I Remember Running: The Year I Got Everything I Ever Wanted—and ALS; By Darcy Wakefield". It was quite good and factual.

Also a good one to read is the "Jenifer Estess Story".