Katy’s story
When Katy was diagnosed in 2021, she was determined to take positive steps towards becoming involved in the community. Volunteering for a clinical trial was a big decision, but one she’s glad to have made.
When did your journey with Parkinson’s begin and how were you diagnosed?
In 2019, I developed dystonia when running, and a year later I noticed a tremor in my left forefinger. I was referred to a neurologist and over the next six months underwent tests including MRI & DAT scans. Eventually in March 2021, 20 months after noticing the first motor symptoms, I was diagnosed, aged 42.
What inspired you to get involved in a recent clinical trial, and how has participating impacted your day-to-day life or your thoughts about the future?
I wanted to do something useful, and the trial appealed; it was a repurposed drug, well-tolerated with a good safety record.
The trial gave me a sense of purpose. It was a big commitment with lengthy trips to Oxford but I soon got the hang of it. I had no side effects, and felt well throughout with relatively stable symptoms.
I now know I’d been given the real drug and not the placebo. These days, my symptoms are more rapidly progressing. It’s frightening, and brings into sharp focus the immediate need for disease-modifying treatments.
What motivates you to take part in research and clinical trials like this one?
I thought, ‘I need to do something’, participating in a drug trial struck me as the most useful thing I could do. I have a LRRK2 gene variant, and there’s a 50% chance that each of my children will inherit it. *In the UK, around 1 in 100 people with Parkinson’s carry it, so I’m particularly motivated to participate in these trials since relatively few of us are eligible.
You have volunteered to be part of the ‘working group’ for the upcoming EJS-ACT-PD trial. What do you feel is most important about the work being done through EJS-ACT-PD?
Clinical trials are too slow, even with repurposed drugs. So it’s really encouraging to see EJS-ACT-PD streamlining and speeding up the process.
What advice or encouragement would you share with others who may be thinking about, or who may be hesitant about getting involved in clinical trials or research?
It’s human nature to hope you’ll strike gold, and a trial will benefit you personally, but don’t commit to a trial expecting to benefit. If you benefit, it’s a bonus. It’s a big commitment; so talk to people close to you, read the patient information leaflet, and ask lots of questions!
Looking forward, what are your hopes for the future of Parkinson’s research?
To see a significant increase in government funding for clinical research that reflects the prevalence and severity of the disease.
* https://www.parkinsons.org.uk/information-and-support/does-parkinsons-run-families
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