"How are you doing, Britt?"

"Oh, can’t complain. Well, actually, I can," she says with a laugh. "Parkinson’s goes up and down. The other night I was on my way to the bathroom and leaned on a wardrobe that wasn’t there. Broke my wrist."

It’s Saturday, and Britt Dyngeland, 57, is sitting on a new sofa in a new apartment in a suburb of Bergen called Paradis (Paradise). She laughs at her own story. Her husband, Per Øyvind, is out riding his bicycle.

"Ten years later, what do you think about what you said back then?"

"I have a really good relationship with my daughters, and I’m sure they haven’t had any big problems because of my illness. I’m happy that they call me on the phone quite often. But when I look at that photo I can see how my face has changed. It’s stiffened, so I’ve had Botox injections in my neck and jaw."

"Did that help?"

"Yes, everything helps a little, but there’s no magic spell."

Britt was diagnosed with Parkinson’s in 2009, and the symptoms keep getting worse. She’s been using a walker for a long time. She’s developed dystonia—painful, cramp-like muscle contractions. Her arms, legs, and face twist in different directions. She’s had to spend a lot on dental work because she clenches her jaw so hard. That’s why she gets up at night to take a Madopar Soluble, to loosen the muscles.

"And then you walk into imaginary wardrobes and break your arms?"

"Yes." Britt laughs. "And I dream like crazy. Wake my husband up."

"What were your dreams ten years ago?"

"I dreamed that I would end up in a nursing home or become… what’s the word? Now I’m in that part of the day when I can’t find the words... dementia! That’s what I’m terrified of, dementia"

"But you haven’t developed dementia?"

"No, not so far, not in a way that bothers me. But I worry a lot. It took me so long to remember that word just now. At least I’m not depressed. But I do have anxiety attacks."

When the anxiety hits, she can take medication. She doesn’t like being around a lot of people anymore. Eating with others means a lot of spilling. But with family, it’s fine, even if there are many of them.

"I think it’s because they’re used to seeing me like this. And I try to get out for lunch often, usually with other people who have Parkinson’s."

Britt stopped working in 2016. She worked in the county administration and had to sit in meetings with her body full of involuntary movements. Dyskinesia is common after years of medication.

"Stress in any form is the worst, and that’s why I couldn’t work anymore. I couldn’t make a phone call. Couldn’t even think about making a phone call."

"That makes it hard to get much done."

"Exactly." 

Britt laughs again. Probably at the whole situation. She says her self-image has taken a beating. She doesn’t feel attractive when she can’t communicate like before. To make up for it, she pays attention to how she dresses, colors her lashes and brows. Small things that make her feel better.

"So I haven’t completely given up."

I find it difficult to have to watch everything Britt has to struggle with, and there’s always something new. She’s had Deep Brain Stimulation surgery, but the motor symptoms are still severe. The involuntary movements are worse.

"Yes, I’m very overactive at times. That’s the worst."

She also has a Lecigon pump, a device that delivers a steady stream of levodopa gel into her small intestine. The equipment has to be cleaned daily, and if she’s too overactive, her husband has to help.

"Do you believe you will see any major breakthroughs in Parkinson`s treatment in your lifetime?"

"Not in my lifetime, no."

The front door clicks open. Per Øyvind comes home. Britt is writhing on the sofa now, her legs moving wildly.

"We laugh a lot," he says when I ask how he handles it. "The kids too. Humour ties us together. I’ve been criticized for not taking the disease seriously, but that’s exactly what we do. Humour helps us survive. Britt has incredible grit. She keeps fighting, but it’s getting worse, and now it’s wearing us down."

Britt has had almost every procedure possible, but with limited results. At her worst, she just curls up on the floor. She has half an hour a year for DBS adjustments at the hospital, and that’s too little, he claims. "They don’t observe patients over time when fine-tuning the stimulator, so I don’t think it works as well as it could,"

A year ago, they moved to a new apartment building with a grocery store and pharmacy downstairs and the tram stop outside. It is their impression that most people make these practical moves too late. She’s also got an electric wheelchair for trips around the neighborhood. But then there are the nights. She keeps her husband awake with her dreams because she acts them out. REM Sleep Behavioural Disorder could be an early sign of Parkinson’s Disease. Britt talks and laughs in her sleep, tells jokes, and sings out loudly.

"So you are fun to be with round the clock, so to speak?"

"Yes."

"But then they gave you some pills and it got better?"

"Yes. But then it got worse again. Parkinson’s is a shitty disease, and it takes more than positive thinking to get better. While we wait for a miracle cure, we just take one day at a time."