James

I was born in Doncaster, South Yorkshire and grew up in Chesterfield, Derbyshire, so proudly consider myself both a Yorkshire and Derbyshire man. For 20 years, I’ve worked in an architect’s office specialising in technical drawings for the retail sector  - I take great pride in my commitment having taken only two sick days in two decades. I’m a family man with a wonderful, supportive wife and two teenage children who certainly keep me on my toes. I stay active through regular exercise, including a weekly PD Warrior class that I helped to set up.

My Parkinson’s journey began with a diagnosis in January 2017 at the age of 39, following about a year of tests and appointments. I initially tried to manage things on my own and went four years without medication, believing I was doing the right thing. I eventually realised that avoiding help wasn’t benefiting me, and accepting support was a turning point.

Since then, I’ve focused on being more involved in the Parkinson’s community -meeting new people, supporting others and contributing wherever I can. I’m particularly interested in raising awareness about PD, how it affects people and research underway to better understand it. Having lived with Parkinson’s for over 10 years, I’ve gained valuable experience that I wish I’d known earlier and as an ambassador, I want to share these experiences to help others feel more informed, supported and less alone.

Parkinson’s is a journey, and while it brings challenges, it also brings opportunities - to connect, to learn, and to support one another. If sharing my story helps even one person feel less alone or more informed, then it’s a step in the right direction.

Saul

I'm a public library worker in Sheffield; with a motivation to understand how I can identify the cause/causes of my Parkinson's and see if I can do more than treat the symptoms. Like many others I volunteer with, I would like to be able to find a cure or prevent the causes for myself and others. My broader interests are in working with community organisations: mostly cooperative housing for over 12 years and Friends of the Earth more recently. So, I come from a strong belief that real change for people comes from grassroots engagement.

The first indications that my body was not working as it had been for the first 50 years of my life, showed upas symptoms I was not aware were classically Parkinson- like. These included less control of my breathing while swimming, feeling zapped earlier in the day, erratic shivers in my left leg, increasing thoracic tightness, and a lack of gait flexibility. My GP referred me to see an NHS neurologist, but after 6 months, my partner paid for me to see a neurologist privately. He did a thorough clinical motor examination. Matter-of-factly he asked if we had any suspicions, we blanked and he said it was doubtless Parkinson’s. We were naively astounded but two research months later, felt more informed and with the benefits of Beneldopa and an agonist drug kicking in, this meant a return to me feeling mostly normal.

Since then, I've been inspired to link up with both Parkinson's UK in Sheffield and Edmond J Safra, Accelerating Clinical Trials in Parkinson’s Disease (EJS ACT-PD). In the last few weeks, I received my genetics results from PD Frontline. Although my Parkinson’s is unrelated to the genes tested, I’m suggesting another lifeline for people with Parkinson's may be support resources in the PD Frontline FAQ, with a decision tree to highlight varied pathways Parkinson's people can continue on to engage other research and life choices. This is being developed and will hopefully simplify our steps forward. I’m also kickstarting a reading group in Sheffield libraries for people with the early onset variety.

I’m glad to work as a Patient and Public Involvement and Engagement participant on the Trial Working Groups. Not being a scientist has meant I seek out plain English explanations in our meetings and in turn I get to emphasize the human side of clinical research. However, the research specialists have been very inclusive and acted on all our peer feedback to improve drug treatment trials for Parkinson's people and get us all to those goals of better treatment and maybe a cure.

Lidia

I am a trained Parkinson’s PWR!Moves instructor as well as a FLexercise Exercise and Movement to Music instructor. I am also an emeritus geology Professor at Imperial College London. Alongside my career as a geologist I have taught FLexercise classes in the community for over 35 years. After my own Parkinson’s diagnosis in 2018 it seemed obvious to expand and develop my expertise to teach people with Parkinson’s and I did a specialist course in Parkinson’s Exercise training with PWR!Moves. Through the Parkinson’s classes we have a built up a community of ~40 people where after class over a cup of tea or coffee we share our knowledge on the latest research and tips to help each other.

From my background in academic research I believe that it is vitally important that people with Parkinson's participate in research trials to help further the scientific knowledge on Parkinson’s and the work being done to find a cure. Over the years I have participated in 6 research projects involving visits to research centres, and responded to numerous online questionnaire style studies! When ever I can fit it in, I try and contribute to a study.

Barry

Nancy

Illa

I was diagnosed in June 23 by a private doctor who suggested I should be referred to a NHS neurologist - which was going to be about a year.

During this period I heard about the PPMI trial and was accepted onto it. Also I got introduced to a couple of organisers and a group of patients who attended activities in the Charing X sports club. Although it was far to travel twice a week this was great for me mentally and physically. I also joined PureGym (free for Parkinson patients) and a leisure centre with a pool and local ballet classes.

I attended various meetings organised by Cure Parkinson’s and General medical council where I found out a lot information. I also feel better now that it’s not all doom and gloom - there’s so much one can do to help themselves with the right support.

Going forward I would like to support people newly and not so newly diagnosed with Parkinson's Disease and share my experience with them.

Tricia

After being diagnosed in 2011, I spent many years managing my PD alongside my career and care of my family. When I retired to the countryside in 2019, I struggled to complete a 2km walk. But my dedication to regular exercise and physio meant I achieved my dream of returning to Switzerland with my family for a hiking holiday in 2022.

I signed up to Frontline to contribute as much as I can to the ongoing research into treatments for PD. When I saw that the fantastic work Frontline are doing depends greatly on volunteers, I signed up to be an Ambassador to encourage and support participation as much as possible. I am involved with a number of PD groups, both locally and where we used to live in Pinner, Greater London, including Morrello Health (PD Warrior), Live Loud (voice training), Learning Moves (dance) Fighting Fit and the local branch of Parkinson’s UK, so have a good network of people to approach.

While of course we wish the number of people with PD was less, there is a strength in our numbers! If just half the current participants persuaded just one more person with Parkinson’s to sign up, this would bring the total number of participants to over 10,000, which would be a wonderful achievement!

Vibha