Age diagnosed: 38
Specialist interest: Research, YOPD
“One of the hardest jobs the charity has is dispelling the myth that Parkinson’s is an old person’s disease.”
Since being diagnosed with Young Onset Parkinson’s in 2008 I have become heavily involved with fundraising for and raising awareness of The Cure Parkinson’s Trust through a variety of fundraising activites and taking part in a couple of promotional videos and a BBC TV programme. In that time, I have also found it to be incredible important to be involved in and aware of research as we move towards a cure.
As a nurse, previously caring for cancer patients in Phase I, II and III trials, my medical background meant I understood what the inevitable progression of the Parkinson’s meant for my future. With my knowledge and experience in clinical research, finding a cure through research is very important to me and supporting The Cure Parkinson’s Trust, the only Parkinson’s charity determined to only fund research into finding a cure is a natural decision. Having raised much needed funds through two long distance cycle challenges (The Seer Green Trio and Rachel & Netty’s 500 mile Cycle Challenge) I now enjoy helping out in the CPT office!
Having had PD for over 10 years, I have experienced a wide variety of symptoms and treatments; Painful Dystonia, DBS process and Continuous Apomorphine Infusions and happily talk through the DBS process with others looking into the option of surgery.
Since involving myself in fundraising for Parkinson’s I was struck by the support/lack of support for children with parents who have Young Onset PD, especially with regard to the misconceptions portrayed by the media about dying from PD. Young parents with Parkinson’s will become more common as the number of people diagnosed with the condition rises. As a mother myself, what I really want is a cure for Parkinson’s and it is imperative that this will only be possible with all sides of the Parkinson’s community to be working together. I continue to raise funds and awareness across social media platforms and within my network.