Ten years after Heidi Skagestad (50) described her difficult life as a young person with Parkinson’s, I meet her again.

We’re in her apartment at Venneslatunet, a care facility in the south of Norway. She moved here three years ago because she needed extensive care.

With us is one of the home nurses and Heidi´s daughter Silje (27), who is visiting today. Heidi also has an assistant who comes in a few times a week. The walls of her apartment decorated with photos of her and Silje. An advanced wheelchair takes up a lot of space. Her body twists, but Heidi is smiling.

“How many years have you had home nursing?”

“Ten.”

Heidi coughs and gasps for breath. It’s hard for me to understand what she is saying. Even for nurse Heidi Andersen, who’s known her for years, it’s difficult.

But speech problems are just one of many issues. They’ve had to call an ambulance several times because of severe cramps—dystonia.

“The worst is jaw lock. And then the legs—cramps in the legs. It’s very painful for Heidi,” she explains.

Heidi was diagnosed with Parkinson’s at 32. Silje was only seven.

I’ve always known her to be a witty woman. We have discovered something funny: it’s easier for us to communicate when we speak English than when we speak our mother tongue.

We’ve met a few times over the years, usually when she’s in Oslo for DBS adjustments. The surgery was done in 2011, and she believes her speech and balance problems worsened following post-surgical complications.

“I’ve seen what Parkinson’s can do to a person,” Silje says quietly.

Since Heidi struggles to speak, she types on an iPad, which then speaks for her.

It says:

“Shall I cook?”

“Yes please, maybe later,” I reply and ask what has changed the most in these ten years.

She starts typing a reply. It takes time with fingers that don’t cooperate. Silje answers first:

“I think everything has changed, Mom. It’s hard to see you in pain.”

Heidi continues typing.

The iPad says: “I want to have grandchildren”

Heidi has trouble swallowing, and while I’m there, she is given nutrition through large syringes into a tube in her stomach.

After that, the nurse fills a spoon with vanilla sauce and adds pills for Heidi to swallow. She tells me that they include painkillers, Madopar and other Parkinson’s meds, antidepressants, epilepsy medication, and pantoprazole for stomach acid.

“That’s a few spoonfuls,” the experienced nurse says, and everyone chuckles.

The mood lightens. Heidi jokes with me via the iPad. Everything she writes takes time to appear, but it’s exciting to see what comes next.

She shows me a small instrument that she is wearing.

“Dacepton. It keeps me from getting so stiff.”

It’s overwhelming to see how advanced her care needs are. What Heidi is showing me is an automatic medication pump that hangs on her belt, delivering a steady stream of a dopamine agonist under her skin.

I think she’s brave.

A few days before my visit, Heidi sent me a text message:

—CAN’T WALK

—NO BALANCE

—CAN’T SWALLOW SOMETIMES

—CAN’T TALK, SPEECH LIKE I’M DRUNK, JUST HARD

—CAN’T SEE, EYELIDS DROP EVERY NIGHT

—NO SLEEP

—NO APPETITE

—ISOLATE MYSELF, MENTALLY BROKEN

—THE WORST IS THE PAIN, CONSTANT

—CRAMPS, DYSTONIA EVERY DAY

“Chronically suicidal,” she adds.

“Yes, there were times… when you threatened to jump off a bridge,” the nurse says. “But overall, as I know you, things seem calmer now. Like you’re in a better place mentally. What did you say? The pill? A new chapter?”

“New and better,” Heidi replies on the iPad.

Then she starts crying. On the screen she writes that she feels good when Silje visits.

“It’s a disease that just keeps on getting worse,” Silje says.

Later they both go the bathroom where Silje puts makeup on her mom. After that I take photos of them.

Heidi tries to do something fun for the camera, but I can see her body won’t cooperate like before. I believe she wants to smile to the camera but it´s hard for her.

Then it’s just the two of us. We enjoy an omelet that she has put together, but suddenly she chokes on the food. I almost panic—should I slap her frail back?

Luckily, it passes, and I fetch her a glass of water. Then she cries a little again. After that, she grabs the vacuum cleaner and tidies up.

I ask her if she`s ok, and she gives me a thumbs-up.

We clink glasses of pear cider and say cheers. A little later, I’m outside, ready to leave. I think to myself: Parkinson’s is cruel, and Heidi is wonderful.

Postscript: This is the last time I get to meet Heidi. A few weeks later, her body gives out. Heidi passes away at Venneslatunet on July 6, 2024.