"Research helps me take back control"

Paula is a retired teacher and was diagnosed with Parkinson’s in 2014. It’s rare for Parkinson’s to run in families, but as the fourth person in her family to have the condition, here she shares why she is passionate about helping researchers find better treatments and a cure.

"I feel Parkinson’s suddenly thrusts you from middle age into old age before you are ready. But we do have a choice – either sit around, feeling glum, waiting to get worse, or be proactive and meet issues head-on.”

For Paula, tackling the issues head-on meant getting involved in as many different research projects as possible. “It can all seem rather depressing that there is no known cause or cure. But we are not helpless. I feel as a person with Parkinson’s, I’m in a unique position to help with research.”

Making a difference

Paula has taken part in a range of research projects, including a drugs trial and testing a probiotic drink. She says, “I’ve worn quite a few devices to measure various body movements, been involved in different clinical trials, and, given my family history of Parkinson’s, I’m also a participant in the 100,000 Genomes Project. It will be interesting to see if I have a genetic mutation that made me more susceptible to developing Parkinson’s."
 
“At the moment I’m involved in a trial looking at whether electrical stimulation of a specific nerve in the leg can help with bladder control.” She explains: “In the study I wear a TENS machine on my leg for 30 minutes at a time, twice a week, over a period of 6 weeks. And then I report back to the researchers whether it’s working or not. For me, having a device that could help me manage my bladder would be life changing.”

 

I’ll pretty much do anything anyone asks! For me, research gives me a feeling of taking back control of my Parkinson’s. It can actually be quite empowering.

Find your level

For some, the idea of taking part in medical research can be a scary one. But Paula sees it as something quite different. “I’ll pretty much do anything anyone asks! For me, it gives me a feeling of taking back control of my Parkinson’s. It can actually be quite empowering. And it means I’m on first name terms with all the neuroscientists at the hospital!”

Paula does have her limits though, “For me, the GDNF trial was just too invasive. I didn’t fancy brain surgery without the guarantee I’d be on the drug. But I’ve got nothing but respect and admiration for those who did take part. It’s about finding what’s right for you. We can all be part of Parkinson’s research, but at a level that you feel comfortable with.”

Hope for the future

With all the research happening now, Paula is optimistic about the future for Parkinson’s. “I do think, one day, there will be a cure – hopefully in the lifetime of my children, or at least my grandchildren.” 

“As wonderful as levodopa has been at helping me manage my symptoms, it does feel like it’s the equivalent of putting a sticking plaster on a gaping wound. But now it feels like there’s tangible hope for stopping, or at least slowing the progress of, Parkinson’s, so I’m going to keep doing my bit.” 

She adds: “The way I see it is this – more than 50 years ago people like me offered their time and their bodies to help researchers to develop levodopa. Now it is my turn to help the next generation.” 

If you’ve been inspired by Paula’s story, you can learn more about taking part in research here