My name is Jim and I have Amyotrophic Lateral Sclerosis (ALS), otherwise known as Lou Gehrig's disease.
My terminal journey began in 1999 when I noticed ordinary activities such as mowing the grass were completely exhausting. Throughout the summer of 1998 it took 45 minutes to cut the grass, by mid 2000 it would take almost 3 hours because of the numerous breaks I had to take. In the spring of 2001 my wife took on the job because I couldn't walk more than 30 or 40 steps. Numerous doctors had no idea what was happening to me. Late one afternoon my wife suggested she should take me to the emergency room. After a heated discussion off to hospital we went, because she said I looked bad--of all things. She got me situated at the admitting desk and went to park the car. While she was gone I stopped breathing. I awoke 5 days later, permanently on a ventilator. I can truthfully say, if my wife had not been so persistent, I would have died around 5:30pm May 17, 2001.
ALS affects every victim differently. I know of several victims who noticed a slight unusual weakness and within 8 months they were unable to move, not even open their eyes. When the progression is this fast, within a very few months you are faced with making a decision that only "other people have to make." Are you going to be placed on a ventilator? You have no idea whether the disease’s progression will plateau, be a slow steady decline, or accelerate. Financial concerns, family stress, mobility, and medical care are some of the factors on one side of the balance scale with certain death on the other. The two individuals that I referred to--one opted not to vent and promptly died, the other went on a vent to live until his youngest child graduated from High School. This individual was totally paralyzed, unable to even open his eyes for 3 years, but the goal was achieved. As he wished a few months after graduation the vent was withdrawn. This disease does not affect your mind or your hearing but over time your body becomes completely useless. Statistics reveal that life expectancy is 2 to 5 years after diagnosis; however, I have known several victims who passed 6 months from the onset and a few who are still alive over 30 years after their diagnosis. I almost died without a diagnosis. How many are not as lucky as I was? ALS may well be the cruelest disease on earth; this is arguable because there are all too many torturous fatal diseases. Do not think it can't happen to you, as I once did. It is not only ALS that can permanently change your life--there are numerous others including paralyzing injuries.
Why did I create this site? My purpose is to have a website to make the public more aware of ALS. In addition, I want to have an uncensored public forum. Censorship suppress truth and ideas! I am also concerned with our politicians and the way they waste taxpayers' money on pork-barrel projects. We should not pamper them because of their position--they are throwing billions away every year and cutting funds that could benefit the terminally ill and permanently injured. That's my story; please help me prevent it from becoming your story, or the story of a member of your family, a loved one, or a friend!
Jim AKA- firstname.lastname@example.org