“I joined to get stuck in”

In this series, we hear from some of our Research Support Network members about why they joined, and what they have been up to. Here Carroll’s story.

“I was diagnosed with Parkinson’s two years ago, and these last couple of years have been interesting. I am from a healthcare background, so I should have recognised my symptoms. However, when something shocking happens, it is natural to bury one’s head in the sand. I suspected that my tremors were to do with something sinister, but I didn’t seek help until three months after I noticed the signs.

“The news of a potential Parkinson’s diagnosis was distressing, but when the diagnosis was confirmed my emotions went on a rollercoaster ride. There were periods of numbness and despair when I thought about my Will and how my husband would cope with me when I am stuck in a wheelchair! And I have seen myself going through the early stages of the grieving process, denying or being angry with information that I was given. But the reactions I’ve received from my children and friends give me a sense of happiness and warmth. Their love and reassuring words have been heartfelt and this has given me strength to fight on.

“I found Parkinson’s UK quite by accident when I was referred to a trial on Fox Trial Finder and got linked up with the charity. I was very fortunate to be selected to join the Research Support Network Development Group.

“I became a Patient and Public Involvement Volunteer, which has allowed me to look at research projects before they are even submitted for funding and help make improvements. This is very much a personal interest of mine, as I had been teaching research methodology at a university before I retired. This role is intellectually challenging and rewarding, and I hope that I am making a difference in how participants are recruited for research in Parkinson’s.

“I also decided to put myself forward for several research studies. Some involved tests and scans and most recently I have put myself forwards for a UK-wide drug trial.

“Meeting other members of the Research Support Network has had such a positive impact on me. Sharing stories and being empathetic with others has made it possible for me to open up and examine my own feelings about my condition.

“I know that the best way to deal with this condition of mine is to face it head-on — there is no getting away from it. Each day I feel thankful that I am still the person I was two years ago, that deep down I am no different. My physical body may be deteriorating, but I am going to fight it, slow down the progression and be hopeful for a cure in the future!”