“I’d never guess you had it if I didn’t already know.” spoken by my neurologist today at my semi-annual appointment.

At first, I took her statement as a positive. My masked face may have even smiled. But as I left, I thought differently. Throughout the 8 minute appointment, I told her about pain, nightmares, sleep problems, choking, neck/head stiffness/immobility. She offered no solutions – just listened. I passed her usual 30 second finger/toe-tapping exercises and it was over.

I left no better off than when I entered. Except I had the recurring and uneasy feeling that she really doesn’t get it. Maybe I’m being overly sensitive. Maybe she thought that would make me feel good. Maybe she was just noticing the quieting effects that proper timing of meds has upon my tremor. However, the invisible side to PD is often more problematic than the shaky side. (see diagram below)

My tremor is not predominant, my stiffness and rigidity is. I needed/wanted help for the pain and I didn’t get it.

I often think I’m her one and only PD patient and I don’t quite fit the ‘hunched over, shaky, elderly man’ version of PD that she likely studied in the ‘diseases’ chapter of her studies.

“Just keep doing what you’re doing and I’ll see you in 6 months,” her last words.

More info here: YOPD Symptoms and Side Effects and here: MJFF Symptoms (motor/non-motor)