Paul Aiken, the long-time executive director of the Authors Guild, announced today that he has early-stage Amyotrophic Lateral Sclerosis (ALS), a fatal illness also known as Lou Gehrig’s Disease in the US and Motor Neurone Disease in the UK. There is no known cure nor effective treatment for the disease, which kills an estimated 125,000 globally each year.
Aiken, 54, said his ALS symptoms in his legs went into remission after he was treated on August 7 with the fourth in a series of epidural steroid injections he received for lower back and leg pain. Just two days earlier, doctors at Weill Cornell Peripheral Neuropathy Center had found fasciculations, involuntary muscular twitches that are symptomatic of ALS, in his legs, arm, back and tongue during EMG tests.
Aiken said that, separately, an emergency room doctor at St. Luke’s Hospital had given him oral steroids to combat a severe allergic reaction early in the morning on May 23rd, shortly after his first symptom, slurred speech, arose. Aiken’s wife noticed that his speech improved markedly after two doses of steroids.
“It was dumb luck, nothing else,” Aiken said, “My steroid shots began in February, months before my first hint of ALS, for an apparently unrelated back problem, and though I’ve had a lifelong history of allergy-induced asthma, the condition is mild. I’d never been to an ER for it before.”
While researching whether ALS can be treated with steroids, Aiken found nothing very useful on PubMed, the online medical database. On Saturday, August 24, however, he did a general web search for “steroids and ALS” and found a blog post by Dr. Herman E. Schmid, age 84, of Winston-Salem, NC. Dr. Schmid claimed in that post to have put ALS into remission with steroids. After speaking to Dr. Schmid the following Tuesday, Aiken began taking oral steroids.
“Dr. Schmid returned my call from his medical offices,” Aiken said. “He vividly described his symptoms and precise treatment, sharing his medical history going back 52 years, to his very first dose of oral steroids in 1962. He emphasized that he’s in remission; that he isn’t cured. His fasciculations continue at a low level to this day.”
“I hung up the phone and asked my doctor to fax in the prescription,” Aiken said. “Just as in May, my speech symptoms improved dramatically within 48 hours, an enormous relief. Unfortunately, the epidural steroid injection from early August seems to have worn out, and my legs aren’t as strong as they were four weeks ago. But they’re still far stronger than they were in early August.”
Aiken said he expects skepticism about the remission of his symptoms and will begin posting pertinent medical records at n=2.com (nequals2.com) on Monday to help answer questions. He admits he has no way of knowing whether his remission will continue or whether he has some odd strain of ALS, so his treatment might not apply to others. He’s hoping to use the blog to help find out.
On September 7, Aiken flew down to Winston-Salem to meet Dr. Schmid and his wife, Donna Schmid, a registered nurse certified as a nurse practitioner. [Coming soon: a more complete account of this story, with photos, at authorsguild.org and nequals2.com. n=2 will notify followers via Twitter.]
“ALS is a rare, widely-dispersed disease, with the vast majority of its victims in the non-English speaking world,” said Aiken. “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. I’m going to do my best to open-source my medical records.”
“It’s business as usual at the Authors Guild,” said Scott Turow, Authors Guild president. “I’m happy to know that for the foreseeable future, Paul will continue to guide our efforts, just as he has for nearly two decades.”
“We’ll continue to advocate for working authors,” said Aiken, “doing our best to assure that a diverse range of writers can pursue their careers and share in the rewards of their labors. We’re fortunate to have a supportive board and a deep, experienced staff to do the guild’s work, which seems more important now than ever in the guild’s history.”
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