Patient involvement in early Parkinson’s research

In November 2021, UCB, Parkinson’s UK, and the Parkinson's Foundation in the U.S., announced that they had joined forces to establish a Patient Engagement Council for Parkinson’s Research (PECPR), building upon existing work they had been doing together for many years. The overarching aim of the group is to partner with patients, carers, and patient organisations early, strategically, and consistently to improve research and early clinical development. Integral to the PECPR are patient experts who represent the wider Parkinson’s community perspectives and have a keen interest in early research and development.

Meet Harold, one of those patient experts, below:

Harold’s Story: I want patients to see that their life does not end with the diagnosis of Parkinson’s Disease. In fact, it’s just beginning.

I first started experiencing what I now know were symptoms of Parkinson’s disease six years ago. I was on a family holiday in Croatia and felt pain in my shoulder. When I spoke to the doctor, I was misdiagnosed with frozen shoulder syndrome. The doctor wondered if I was too stressed and advised me to take it easy. But after a few months, I had a tremor in my hands which I found was getting in the way of my everyday activities. After a long road of specialist appointments, I was diagnosed with Parkinson’s Disease in 2018.

I was insecure about what this news might mean for my family and my career, so I kept my symptoms private. But after hearing the diagnosis, I had a moment of relief. It wasn’t life-threatening, and it was something I was ready to tackle. 

Now, as well as focusing on my own health, I’m passionate about helping the wider Parkinson’s Community. I’m proud to be part of the Patient Engagement Council for Parkinson’s Research (PECPR), and I hope to use that role to raise awareness. It’s no mean feat to be a representative for the Parkinson’s community. The community is huge, and no two experiences are the same. 

In my role, I try to give guidance on how patients look at this disease and what scientists can focus on when thinking about developing new treatment options. 

We can be proactive as a Parkinson’s community and play a role in finding new possibilities to cope with this disease, whether that be in therapies or education. Nobody knows better how to deal with Parkinson’s than the patients themselves.

When I think about what I’d like to see for the future of Parkinson’s awareness, I’d like those with Parkinson’s disease to see that their life does not end with a diagnosis. In fact, it’s just beginning.