The pictures 2024

“Sometimes dad can hardly eat, but other times he can do everything.

He’s almost like Superman and Clark Kent.”

I might run to catch the subway on my way to work—then struggle to walk when heading home. I try not to think too much about having a progressive disease.

I’ve worked as a nurse for 20 years and have seen how the illness affects people—and how some manage to live well with it.

That’s why I know it’s different for everyone. For me, it also changes from day to day, and even from morning to evening.

Becoming chronically ill has given me greater integrity and confidence in my work as a family therapist.

I allow myself to run in the sun, confident that things will be okay—and I allow myself to cry in the dark over the grief this disease brings.

I wish I didn’t have to talk to my kids about illness, but at the same time, we experience love more deeply.

I stand still. Completely still. I want to move forward, lift my legs. But I can’t. It’s like wading through syrup. Parkinson’s has taken a lot. And it’s hunting for more, more, more.

On a good day, everything clicks. My workout goes great. My confidence is sky-high. I downplay the disease. Every time, I think it’ll last forever. Right now, I’ve just come out of an off-period that lasted two hours.

I try to sit in a chair, but I just slide down. My voice is barely audible. I’m fragile and oversensitive. But then suddenly, all the pain in my body disappears. I’m in a fantastic mood and think life is wonderful again. I almost feel like working out a bit before bed.

Despite Parkinson’s, I’m mostly grateful and happy inside.

The disease has closed many doors—but at the same time, opened doors I didn’t even know existed.

I feel emotions more deeply. I write poetry, sing, and laugh. And sometimes something wonderful happens—I manage to touch hearts with what I write.

“Something happened to my self-esteem when I had to quit being a firefighter.”

“I had decided to be open about the disease, but it’s hard for others to understand—and it has so many invisible symptoms: anxiety, depression, sleep problems, exhaustion.”

“What gives me strength is having Turid and the kids around me every day. We go to the cabin as often as we can.”

“I used to think having Parkinson’s was just a bit of shaking and stiffness, but it turned out to be so much more.”

“On a really bad day, I think Parkinson’s must have been created by the devil himself—and that it was too brutal even for him, so he threw it away and left it to us humans.”

“Still, I always say what I usually do: This is not the worst thing that could have happened.”

My friends call me “Heidi Hyper.”

Every morning I thank God that I am alive and breathing. We were a happy family. Then came the disease, the meds, and the extreme involuntary movements.

Then the DBS surgery in my brain. Now people can’t understand what I’m saying. Being thrown out of a store because they thought I was drunk. The cramps that feel like they’re twisting my ankles out of their sockets. Friends who don’t dare be around me anymore.

I’ve tried to end it all. Luckily, I have my friend Randi, my family, and my wonderful daughter Silje.

My family lives with the disease too—and probably feels even more strongly than I do that it’s beyond their control.

The medications changed my behavior in ways that were hard for them. But things got much better after I had DBS surgery. An implanted stimulator now delivers electrical impulses to my brain.

Challenges usually bring some opportunities too, and for me, it’s important to look for them.

Physically, I’m stronger than most 20-year-olds. I carve nice turns on telemark skis, roll a kayak, climb, and do plenty of pull-ups. And I picture many more years in my job.

But I have Parkinson’s, and I’m constantly reminded of it. I wonder what will happen to my body in the years ahead.

My mood swings quickly. Sometimes I burst into tears for no reason, which isn’t always easy for others to deal with. I’m emotionally incontinent.

«It’s like with the bullfighter and the bull. When the bull enters the arena, it is him and me.

I try to read his moves. I dodge. We find new positions, new attacks—I manage again.

The fight will last a lifetime, and the outcome will be fair. I know I can’t kill him.

The nights are the worst. He’s right there. I hear his breath.»

“I work seven days a week. I don’t want to be defined by Parkinson’s. I’m Bård—not that guy with Parkinson’s. The disease has awakened something in me, and that courage makes me strong. But I know it’s there and that in the end it will win. Right now, though, I am winning—and it feels amazing.”

"You need to hold on properly—you’ve got a handshake like fish pudding," my husband said one day as we were out walking.

"You look angry, but your voice sounds happy," my daughter told me.

I try to be open and honest with my kids, but without scaring them. Still, I’m afraid I’m not a good enough mother, that I won’t give them the memories they deserve. Luckily, both my husband and I have a well-developed sense of humour. It can get a little morbid sometimes. So what? As long as it ends in a good laugh.

My arms and legs often shake uncontrollably, and suddenly I can’t move.
If I’m at a café, I sit in the back and order food that’s easy to eat. One time, it took me 45 minutes to get socks on my youngest.
But no one can take away my hope. The hope that one day there will be a miracle cure that lets me function normally again

Parkinson´s crept up on me so quietly. Someone asked: “Does your hand shake?”

It was as if joy no longer reached me. You cast a veil over my feelings and slowed everything down.

I don’t know what you plan to do with me. Some say you can be mild—but you might turn into a monster.