While in the ER being treated for massive pulmonary emboli, I suffered a cardiac arrest. After being resuscitated, I spent the next three days in an induced coma. After two weeks, I was discharged, but not without a few deficits. That was several years ago. It’s now 2025. In the interim, my quest for a remedy has been frustrating.

Although my doctors once suspected that I might have myoclonus, I have never been diagnosed with Lance Adams Syndrome. That was a possibility I stumbled upon all by myself.
Frustrated with the lack of progress I was making in finding a cure, I began conducting my own research. When I came across Lance Adams Syndrome, my jaw dropped! I couldn’t believe the extent to which my experience resembled the conditions described in the literature!

I started by contacting the medical department at the University where Lance Adams Syndrome was first diagnosed. I knew it was likely that the original pioneers were no longer around, but I was hoping that their legacy might have been preserved. I managed to get a call from the office manager, who had a follow-up question about the letter I had sent. She promised to forward it to the doctor but couldn’t promise that I would hear from him. I didn’t.

Next, I contacted a doctor who had treated Lance Adams Syndrome. He told me that he was no longer in that business. However, he did tell me what type of doctor I should seek. When I realized he was describing a doctor I saw while recovering from my cardiac arrest, I made him my next stop.

I managed to reach Dr. Smiley’s office. We called him that, only because we could not pronounce his Persian name. Anyway, for reasons I cannot recall. I did not follow through with him.

None of the neurologists I saw knew anything about Lance Adams Syndrome, and few of them were interested. On one occasion, I took literature I had found on the subject to an appointment I had with a new neurologist. My heart sank as I watched her place the documents on the bottom of the pile. I knew they would never see the light of day again. Much to my surprise, it was a nephrologist who showed the most interest!?

After having taken a detour for a couple of years (which included relocating to a new state), I’m delighted to see the extent to which the Lance Adams Syndrome community has grown. In the interim, the condition has even acquired a new name; Chronic Post-hypoxic Myoclonus. At this point, I’m simply hoping to find a doctor willing to entertain the prospect and explore possible protocols. I live in Nevada but have roots in California. If anyone could recommend a doctor, or a registry where I might find one, I would appreciate it