How I Became an E-Patient Through Cushing’s Disease

For all of my early life, I was the good, compliant, patient. I took whatever pills the doctor prescribed, did whatever tests h/she (most always a HE) wrote for. Believed that whatever he said was the absolute truth. He had been to med school. He knew what was wrong with me even though he didn’t live in my body 24/7 and experience what I did.

I know a lot of people are still like this. Their doctor is like a god to them. He can do no wrong – even if they don’t feel any better after treatment, even if they feel worse. “But the doctor said…”

Anyway, I digress.

All this changed for me in 1983.

At first I noticed I’d stopped having my periods and, of course, I thought I was pregnant. I went to my Gynecologist who had no explanation. Lots of women lose their periods for a variety of reasons so no one thought that this was really significant.

Then I got really tired, overly tired. I would take my son to a half hour Choir rehearsal and could not stay awake for the whole time. I would lie down in the back of the van, set an alarm and sleep for [...] continue the story

I Want My Money Back

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance.At the tender age of fifteen, I saw my first psychologist, a stern, elderly man who smelled like a second hand bookstore. His full, wiry beard was speckled with white and gray, as if it had caught the contents of an overturned ashtray. It fell past his chest, disappearing beneath the edge of his massive, oak desk. I wondered if it reached his toes, and leaned forward awkwardly, hoping for a revealing glimpse. “Young man,” he said, startling me. “Tell me why you’re here.” “Do you shampoo that beard?” I asked. “Excuse me…” “You look like Charles Darwin.” He leaned back and stared at me, mildly annoyed, as if I was a fly he had noticed swimming in his coffee. “Your family is concerned by you behavior. I believe…” “I commend you, sir!” I interrupted. “The world is experiencing a shortage of truly magnificent facial hair; you’ve got the best beard I’ve seen all year! You know who else had a good beard? Sigmund Freud. Are you [...] continue the story

Easing the Burden: Parkinson’s Disease | Part 2

Parkinson’s disease is a neurodegenerative disorder that impairs motor skills, speech and other functions. The disease affects 5 million worldwide and many suffer from Parkinsons Disease in Maine. “Easing the Burden” is an introduction to a few of these Mainers who courageously battle this disease everyday. The program also includes an interview with actor-turned-advocate Michael J. Fox.

Easing the Burden Chapters

Easing the Burden: Parkinson’s Disease | Part 1

Parkinson’s disease is a neurodegenerative disorder that impairs motor skills, speech and other functions. The disease affects 5 million worldwide and many suffer from Parkinsons Disease in Maine. “Easing the Burden” is an introduction to a few of these Mainers who courageously battle this disease everyday. The program also includes an interview with actor-turned-advocate Michael J. Fox.

Easing the Burden Chapters