Living with wearing off and dyskinesia

Nicola's story

“I can’t stop my head moving. It jerks about all over the place and I feel like I have seasickness. This can go on for anything from 30 minutes to 6 hours.”

This is what dyskinesia is like for Nicola, who was diagnosed with Parkinson’s 14 years ago at the age of 30.

She adds: “When I’m dealing with constant movement, eating and cooking become a challenge because my arms and head wriggle in different directions.

"If I'm moving about, stirring food or taking something out of the oven is impossible. Sometimes I can’t even use the microwave or pour water from a kettle."

At one point, Nicola lost 2 stone, because her dyskinesia used up so much of her energy. So she has plans in place to make sure she eats enough and stays healthy.

“I try to eat a lot of carbs and around 3,000 calories a day to make up for the energy I lose. In the morning I have an initial breakfast of cereal and toast. Then later I’ll eat porridge and fruit so I can keep going.”

She adds: “Dinner is the same. I have my normal meal and then later on I eat something like jacket potato with cheese. I may not feel hungry because of the seasick feeling I get with my dyskinesia, but I tell myself to eat so I don’t lose weight.”

Nicola's husband now also does most of the cooking, which means she doesn’t have to deal with multi-tasking in the kitchen.

Out and about with dyskinesia

Nicola also makes sure she can manage her dyskinesia when time is tight or she is busy.

She keeps ready meals in the freezer and cereal bars in her bag to top up energy levels on the go. Carrying snacks is also helpful when she's on holiday, as her changing routine can make it tricky to control her energy.

“Not everyone’s dyskinesia is the same,” says Nicola. “But I find those are the things that help me. Another tip I have is to use a spoon instead of a fork and a straw to reduce movement. A sports bottle is a great too as it doesn’t spill water easily.”

And what about eating out? “I choose food which isn’t messy. Not spaghetti bolognese or steak that can be tricky to cut up.

“And yes, people do talk,” Nicola adds. “But if they're polite I don’t mind explaining that dyskinesia is a side effect of my Parkinson’s drugs.

"People often think Parkinson’s is just a tremor but they need to know it’s so much more than that.”

Bob's story

After 21 years of Parkinson’s, dyskinesia is part of everyday life for Bob. But this side effect of his medication regime hasn’t always been an issue. Initially, Bob was prescribed ropinirole, a dopamine agonist medication.

“The idea was to delay taking levodopa,” recalls Bob. “But it didn’t work for me. I became very slow and stiff. I remember one day, it took me an hour to not be able to put a sock on.”

Tweaking the medication

After trying various dopamine agonist medications, Bob was prescribed Sinemet, a type of levodopa. After tweaks to his doses, his mobility began to improve.

But 3 years later, Bob started experiencing dyskinesia. Apomorphine helped control the ‘off’ periods he was getting, , but this new medication also contributed to his dyskinesia.

These days he’s on a ‘cocktail’ of Sinemet, apomorphine and amantadine to try to ease his dyskinesia. 

He adds: “It’s tricky to get the perfect dose. If my apomorphine isn’t absorbed well then my Parkinson’s symptoms aren’t controlled. But some days I am overmedicated and get a lot of dyskinesia as a side effect.”

And it’s this balance that Bob has to strike. Dyskinesia has become an unavoidable side effect of his medication but without his treatment he wouldn’t have control over his Parkinson’s symptoms. So he’s got used to it, finding things that help him manage day-to-day.

Avoiding stress

“My main tip for managing dyskinesia is to try to relax. Don’t do stressful things as they make it worse. I use a walking aid and it’s really made people want to help me more. Also, my walking improved when I started using an exercise bike every morning for 15 minutes – it’s so helpful.”

“I used to worry about the looks I’d get from people and them laughing at me, but I don’t care anymore. Dyskinesia is part and parcel of my life and I am not prepared to waste it. I’ve got to live for today.” He laughs: “OK, I can’t eat soup with a fork, but other than that I’m fine.”

Sharon's story

After her Parkinson's, Sharon was prescribed levodopa and started experiencing wearing off after a few years. Her ‘off’ episodes became longer than her ‘on’ episodes and there were dips during the day where she was not able to do as much. But now her medication helps her manage these side effects.

“I’m like superwoman. I take ropinirole slow release medication to keep things on an even keel. And for the dips when treatment isn’t working well I take co-beneldopa (levodopa) 5 times a day. If that stops working and I ‘switch off’ then I use apomorphine.”

The apomorphine she uses is an Apo-go pen – a pre-filled pen for portable injections which she carries in her bag for emergencies.

“If I can feel a stiffness coming and know I'm going to turn off, then I'm prepared and can get ready for an injection. The apomorphine makes me feel like I haven’t even got Parkinson’s. It’s amazing.”

“It's about being prepared for when the episodes might come. For example, if I’m going to have a big day then I have a rest the day before. And when medication does wear off I sit down and relax.” 

A great medical team

For the moment, Sharon’s medication helps to keep her ‘off’ episodes to a minimum and control her Parkinson’s. She knows that her medical team has been key in making this happen.

“My healthcare team are second to none. But you’re the expert of your own body. Nobody knows your Parkinson’s like you do. Discuss things with your team, and don’t keep issues back.

"They can only help if they know what’s wrong. And by sharing things and getting support, you can take control of your day to day life.”

• Read more about wearing off and dyskinesia.