Paul Aiken, former executive director of the Authors Guild, revealed on his blog that he has had success in using corticosteroids to combat his ALS/MND symptoms. Aiken first announced his diagnosis with Lou Gehrig's Disease in September 2013, and formally stepped down as director of the Guild on November 3.
Since the September announcement, Aiken says he has learned of three other ALS patients who have successfully used corticosteroids to combat ALS, including a post-doctoral researcher at M.I.T. and most recently, a young woman from Belgrade, Serbia.
When he announced his diagnosis, Aiken told PW that he had stumbled on corticosteroids as a treatment for ALS when an emergency room doctor have him prednisone in May 2013 for an allergic reaction. The prednisone cleared up Aiken's speech symptoms.
In August 2013, while doing research about ALS treatments, Aiken found a posting about treating ALS with steroids from Dr. Herman E. Schmid, who has lived with the disease since 1963, according to Aiken's website, which features a video of Dr. Schmid and his wife discussing the first time Dr. Schmid took steroids for ALS.
"ALS is a rare, widely-dispersed disease, with the vast majority of its victims in the non-English speaking world," said Aiken in the September press release. "Fortunately, the Authors Guild has provided me the resources to distribute this translated press release and to set up a simple blog to share the experiences of Dr. Schmid and me with a global audience."
In his most recent post, Aiken said, his use of the steroids has kept his symptoms at bay and that he is eager to use his blog "to build a global community of those affected by ALS so we can share information on potential treatments for the disease."
"It’s my hope that this blog will encourage further pursuit and a rapid sharing of information regarding the effects of steroids on ALS. The need is urgent, for ALS is a fast-moving disease. For bulbar-onset patients, life expectancy is 18 to 24 months from diagnosis. Although life expectancy for upper-limb and lower-limb onset ALS is longer, and some fortunate patients do survive for decades, life expectancy in general is just three to five years."
If you have used corticosteroids or any other treatment for ALS that you’d like to report, email Aiken at email@example.com.