“What meds do you take, and how much?”

“Sinemet 125 mg, three times a day.”

“That’s it? That’s nothing!”

The conversation has barely started, and I’m already wondering if Simon Bear (61) knows what he’s doing. Fourteen years with Parkinson’s, and he’s hardly taking any medication.

He explains that after three years with Parkinson’s and poor sleep, he stopped taking the widely used drug Eldepryl (Selegiline)—and has slept well ever since. When his neurologist wanted to put him on dopamine agonists, he said no.

“The neurologist asked, ‘Who’s the doctor here—you or me?’ I said, ‘You’re the doctor, but it’s my body. I’ve struggled with hypersexuality before, and I know both that and sleep problems are common side effects of those meds.’

After that, I switched hospitals. Otherwise, I can’t think of any negative incidents in the past ten years.”

Simon still takes the subway. On the phone, he warned me he’d arrive at Tveita Center in Oslo in an electric wheelchair, so that’s no surprise.

The surprise is that he shows up in shorts when it’s five degrees below zero. We head down to the subway station and hop on a train.

Simon is a teacher at Holtet Upper Secondary School in Oslo. He teaches students with developmental disabilities and autism in math, science, and social studies.

Thanks to a wage subsidy from NAV, the Norwegian Welfare Agency, he can hold a full-time position while working 50%. His tremor is too severe for writing on a blackboard, but he uses a Smartboard—a digital board—for teaching.

His days vary: some are for meetings or prep work, others for teaching.

“On my way home from school, I often eat out. I live alone, but I can manage to buy a ready meal and microwave it. After that, I meditate. That gets rid of the tremors and stuff.”

“Meditation is helpful?”

“Yes, it’s positive. Though what I do probably isn’t real meditation. I just turn on Teletext and stare at the football tables. And the handball tables. Maybe I’m a bit autistic. It’s mostly about not thinking too much—just being physically still.”

“What kind of physical exercise do you do?”

“Very little—I can’t do much. So… I don’t really exercise. But I’m very social. I meet three or four friends every week, usually at a café.”

“When you see that old photo of yourself, what do you think?”

“I think I’ve gained weight. That’s partly because I use a wheelchair now due to leg spasms. I can walk about 200 meters. It’s been like that for the past two years. If I go farther, my right foot starts curling behind the left.”

I’d asked Simon if we could visit his school, but the snow is deep today, so we skip it. Simon likes winter, but he likes warmth even more. Next week, he’s heading to his favorite vacation spot with his long-time partner, who lives in Gothenburg.

They’ve been to the Canary Islands 75 times. «We just call it Homolulu” he says with a brief smile.

“Why the shorts in winter?”

Simon explains that he lacks strength in his hands—he can’t manage jeans. So now he just wears shorts year-round.

“I get comments. One woman on the tram said, ‘You’re not very smart.’ I asked, ‘What makes you say that?’
She said, ‘You’re sitting there in shorts, shivering.’ I said, ‘I’m not cold. I wear shorts because I have Parkinson’s.’

‘Oh,’ she said—and walked away.”

Simon laughs, and so do I. He does things his own way, that’s for sure. He rarely meets others with Parkinson’s. He’s never been to therapy or rehab. No assistant, no home nursing.

He’s decided to say no to DBS if it ever comes up. He doesn’t exercise. He doesn’t do any of the things we usually say are important—and yet, 14 years after diagnosis, you can hardly tell he has Parkinson’s.

“What did you dream about ten years ago?”

“My dream was basically not to get much worse quickly—and progression has been very slow for me, and I’m very grateful for that. I was afraid I’d end up in a nursing home at 50.”

His most pronounced symptoms are fatigue, hand tremors, dystonia, slowness, stiffness, and poor fine motor skills. And his words get jumbled if he’s stressed.

“What’s the worst thing about Parkinson’s?”

“The unpredictability—how your body behaves. For example, if I get stressed, I don’t dare take the subway.”

“What’s your biggest hope?”

“My hope is that the progression stays slow.”

“You could always just take more meds if you needed to,” I say.

“Yes, if I need to, I will.”

There might have been an exciting handball match on TV, and when it’s over, I’m sitting there shaking. But then I just hit the off button—and that problem’s gone.