Taking part in research goes hand in hand with campaigning and fundraising for Kay Seddon.
Kay has young-onset Parkinson’s disease – she was diagnosed with the progressive neurological condition four years ago when she was 44 after experiencing tremors in her left arm.
Since then she has worked hard to raise awareness of the condition, shared her experience and advice on patient forums and taken part in as much fundraising as she can, raising more than £500 this year alone.
Kay, a teaching assistant, said: “Parkinson’s is an invisible illness – people don’t see how debilitating it is and how unpredictable your problems are. It’s also difficult to find the treatment that works for you as people react differently to the medications that are currently available.
“I would love there to be better understanding of Parkinson’s and how it affects people and that’s why I am involved with Parkinson’s UK, which funds research as well as providing support to patients and carers.”
Parkinson’s symptoms happen when levels of dopamine, a chemical messenger in your brain become too low. Drug treatments aim to increase the level of dopamine that reaches the brain and stimulate the parts of the brain where dopamine works.
Current medications – Kay currently has five different types of tablets and patches a day – can help to manage the symptoms, but as yet there isn’t a cure or treatments that can slow, stop or reverse the progression of Parkinson’s.
That is why she was keen to take part in research when she was offered the chance by the neurology research team at Salford Royal. She is a participant in the PD STAT study, which is looking at whether a cholesterol lowering drug, simvastatin, has the potential to slow or halt the progression of Parkinson’s disease.
While the mum-of-four doesn’t know whether she is taking simvastatin or a placebo, she says it is exciting to be involved in research that could ultimately make a big difference to patients.
She said: “I know it takes a long time to get a new medication from the laboratory to be ready to be offered to patients and I appreciate this trial might not help me directly. But I’m happy to take part if it helps somebody and it’s important that we keep looking for new treatments.
“Some of the medications I have taken in the past haven’t controlled my symptoms so I am realistic but I know I can stop at any time if I don’t feel comfortable with the trial and I know the research nurses are always there at the end of the phone if ever I have a question.”