Lou Gehrig's Birthday: Spotlight on ALS Bloggers

Today would be Lou Gehrig's 105th birthday. The baseball great, Yankees team captain, and loving husband, died at age 37 of Amyotrophic Lateral Sclerosis, or ALS. This condition is characterized by degeneration of the motor neurons, and is almost always fatal, though 10% of patients will survive for at least 10 years post-diagnosis, and a small minority of people with  ALS will recover and have a normal lifespan.

For Lou Gehrig's birthday, I'd like to call your attention to some bloggers with ALS. The first on my list is mentioned posthumously: BrainHell, whose honesty and bare, blunt prose endeared him to readers, many of whom had been with the blog since shortly after his 2004 diagnosis. He died on February 2, 2008. Many of his friends and readers offered memorials in their own blogs. Kay's at the Gimp Parade was what introduced me to BrainHell, and though it was painful to read his archives knowing the ending already, my life and mind are richer for it.

Then there's Aimee. She's a mother, and she writes most passionately when the subject is her children, and the loss that they will suffer when the downward progression of ALS takes its course. Her blog isn't updated often, as both the work she does to increase awareness of ALS and the work of living her life keep her busy. Her website serves as a comprehensive resource not about the research and the science of ALS, but about its humanity: A day in Aimee's life, pictures of her family, and a tribute to her husband and caregiver, pull Aimee's visitors inexorably into life with a terminal illness.

Lyle of My Journey With ALS is gone also, leaving behind a goal to enlighten a million people about ALS through his website. His posts were few. The earliest were related to his hopes of recovery: Massage, surgery, acupuncture, joint flexion.... he tried every therapy available, including traveling to Beijing for a procedure not approved in the US, but ultimately his ALS proved to be the most aggressive type. After his diagnosis, Lyle lived only two years. His family recently wrote an update on their efforts to support research for a cure.

Drew at The Journey is still with us, and mad as hell about efforts to stop stem cell research. His blog is mainly a collection of articles about ALS research, but also includes snippets from his daily life, and photographs of Drew with friends. Drew traveled to China for experimental stem cell therapy, and noticed improvements in his breathing and swallowing afterward.

Finally, there's the ALS Blog Spot, a group-blog where three people with ALS share their thoughts and experiences. The subject is sometimes religion, sometimes humor, sometimes caregiving, sometimes grief, sometimes derision aimed at treatments perceived as silly or insufficient.

These aren't, of course, the only ALS blogs in the world. But they're five blogs you should take time to read on Lou Gehrig's birthday.