Hi Sara and everyone else - My story.....
Sara and everyone,
My diagnosis was July 24, 2006, but I had noticed symptoms from August 2005.
My legs hurt after running with my daughter and struggled to run a mile in 13 minutes. Then a few months later I could not run, because of a sore left leg. Then walking became difficult with a limp.
While in Maui, April 2006, my kids were joking that I stumbled into the bars instead of coming out of the bars. I am so happy we made that trip to Hawaii. I went scuba diving for the 1st time with my son. Guess what, my left leg did not work and I needed someone help to get the flippers on. Snorkeling was beautiful even it was raining.
Later, May 2006, I went to the doctor for a sore back and knee, he said it was bulging disk, so I went to physical therapy. Then I started bouncing off the walls because I was losing my balance.
June 2006, my legs froze from spasticity at a convetion center company wide meeting. Here I am sitting, my legs don't work, and a 24 foot high screen has a HUGE clock saying 30 minutes till presentation starts. I freaked out stumbled out of the convention center, took a taxi to back to my car, got in my car, stumbled to the Emergency Room, complained of balance issues and strange twitches in the shoulder (a.k.a fasiculations) the doctor said it was in my head.
July 2005, we forced our way to see a Neurologist that week, most appointments take 3 to 6 week to see a doctor. Managed care what a dissappointment! Our 1st neurologist said you probably have ALS but he wasn't sure and he walked out of the room. Son of *****. There we sit shocked and the doctor left the room. Finally we went the ALS clinic at Fairview, it was like we came home. Our ALS doctor, Dr Walk (isn't it ironic, don't you think..) was very compassionate, and we meet a social worker, occupational therapist, and had a 3 hour appointment. If you have ALS find a multi-disciplinary ALS clinic, they totally get it.
July 2005, we go to church, shaking in our boots scared, keeping the news to ourselves. The sermon was about God's Love and community, reach out to the family and community and God's Love will surround you. Well it has and I feel blessed. Yes ALS is a death sentence, but so is life, but I am experiencing so much love from friends and community, that I finally understand what life is about and Gods love.
That's my story in the last year, I look forward to the next day, every morning I wake up, I am a lucky man...
Bob (bryanmn)