John's Produodopa story
John was diagnosed with Parkinson’s in 2007 and lives in Cornwall with his wife Sue. He took part in the Produodopa clinical trial and now receives the drug to help him manage his symptoms.
John had high expectations for Produodopa when he was accepted onto the trial.
“I hoped it would give me my life back. I like to be busy and gradually I just couldn’t do what I wanted to do. I was on about 20 tablets a day and was still having major ‘off’ periods. Organising daily life was becoming really frustrating for us both.
“When I was offered a place on the trial, I almost ripped their hands off,” he laughs. “It was an easy decision for us.”
After the treatment started, John’s medical team began making small changes to the dose to find the right amounts for him. “You have to keep the faith that it will work,” he says.
But for Sue, the changes came quickly. “When John was a passenger in the car, he would fall asleep straight away. If I was driving, I’d have no conversation and I hoped that would change on the drug,” she says. “And it was only a matter of a week or two before I was having a chat with John in the car.”
The trial has lasted four years. Over time, Sue has had to take on more of the management of the treatment due to problems with memory John experiences.
“It’s not a difficult thing to do, but you do need to be disciplined about it. But it’s completely worth it.”
Sue says it’s hard to remember how bad things were before John started on Produodopa.
John’s days are much more predictable and we can plan again. We can go out and John doesn’t have to nap first. He has more energy and more zest for life.
And for John the drug has been life-changing. “It makes your life better. The pump is used 24 hours a day, so that is a winner straightaway.
“When I used to have ‘offs’, I used to go really off. Now I have stability and predictability and don’t feel restricted anymore. I’m more relaxed and have an overall sense of feeling well,” he says, adding, “It’s a feeling I hope to continually achieve.”
What is Produodopa?
- Foslevodopa-foscarbidopa (also called Produodopa) is a new treatment for Parkinson’s.
- It’s delivered by a small pump, which you carry in your pocket or a small pouch. The pump gives a continuous dose of medication, 24 hours a day.
- This means some Parkinson's symptoms can be managed day and night, without tablets. You can also give yourself a 'boost' dose if needed.
Is Produodopa right for you?
Find out more about how Produodopa works and if it might be suitable for you.