Sat's story: Why I'm pledging my brain to research

What first prompted your decision to pledge to donate your brain to Parkinson's research?

My initial interest stems from Par-Con. There was a stall in the research area where they spoke about the Parkinson’s UK Brain Bank, and that's where I got my first insight into what it's all about.

I went away with the forms, partially completed them, but never actually managed to do the final page or get my wife, Nikki, to sit down with me and fill it out.

So it's always been there, but on the back burner. Then, as I've gotten more heavily involved in research since my diagnosis, it kind of just made sense. To get to the stage where we’re testing new treatments in people, like the research projects that I’ve been involved in, you need people donating their brains. Otherwise, the research is not going to be able to take place in the first place. By pledging to donate my brain, it's my way of giving back.

Find out more about pledging your brain to the Brain Bank.

What does making the pledge mean to you personally?

For me, it means I can continue my fight after I've gone. It's kind of like my final gift.

After visiting the Brain Bank, what have you learned about the research being carried out using donated brains?

Just the care and the level of attention that they give each donated brain. In my mind, I sort of thought it was going to be very scientific and a stereotypical dissection, like you might see in a film. But I was impressed by the level of care that goes into the donation process, the analysis they do, and the reports that get given back to the family. I wasn't aware of that. I just assumed that the tissue gets donated and that's kind of it. And obviously that's not the case. Seeing firsthand the journey that it goes through just makes it a more wholesome and holistic experience.

Why do you think brain donation is important for advancing our understanding of Parkinson's?

I think it's critical because everyone has their own unique journey, and no Parkinson's diagnosis is ever going to be the same. There could be multiple factors. There might be other underlying illnesses or conditions in there, or it might not be Parkinson's at all. When I was at the Brain Bank, they said that although everything might follow that clinical diagnosis, the individual might not have Parkinson’s. Brain donation is important so we can understand the different factors that contribute to Parkinson's. And then, ultimately, the end goal is to try to understand the root causes of it and find a cure.

When you think about the progress being made through brain research, what does that progress mean to you?

I think we've made phenomenal inroads and great progress, but we need more people to take part. Without donors, the research can't happen, as tissue samples can't be given to the various different organisations that are doing the work to try and get us that one step closer.

I was discouraged to hear how poorly people from diverse communities were represented in the Brain Bank. We need more people from different backgrounds to get involved. If they want to get that one step closer and have that whole picture of people from different communities, I feel that we all need to be stepping up and playing a part. It can't just be one-sided. That's my personal view. That we've got to be all in it together.

Based on your visit to the Brain Bank, why do you think it's so important that our research reflects this diversity within the Parkinson's community?

I think it's just making sure we don't miss any opportunities there. For instance, a particular ethnic background may have a particular gene type or a particular type of Parkinson's that isn’t seen in other communities. Researchers will miss things like this if people are not as forthcoming, we're never really going to drill down to understand why.

How do you think we can encourage people from global majority communities to get involved?

I think it's about education and understanding people's perceptions. Just kind of putting them at ease, or even just letting them know that these facilities are out there.

In the Sikh faith, nothing is going against organ donation or anything like that. If anything, it's actively encouraged. I think it mostly comes down to the fact that people just don’t know about it, or they're just stuck in their old kind of ways. But then, when I've spoken to individuals and actually been able to explain my point of view, their whole thought process changes.

I think there needs to be lots and lots of education around it, whether it's materials in other languages or presenting the information in different ways. Everyone learns differently. It could be a video. It could be written material. It could be a face-to-face conversation. So it's trying to get through to the various communities in different ways.

I'm doing a lot around inclusivity and diversity with another charity, and the most common thing is a lack of awareness. Again, it's educating others and using different means. One avenue might not fit all.

What would you say to someone with Parkinson's who might find the idea of brain donation daunting or difficult to think about?

I would say if you're curious about it, just reach out to the team at the Brain Bank. Even just speaking to the team, getting to know what it entails, and understanding the reasons why it’s so important can be helpful. Just embrace that conversation. Don't be afraid. Again, no one's forcing anyone to pledge. You're not completely committed at any stage, because if later down the line you change your mind, you can walk away from it with zero judgement. I think that people are probably not aware of that. They might think they’ve signed up, and that's it, but they can obviously withdraw at any time. It just comes back to education.

If you could leave people with one message about brain donation and the progress it could help make possible, what would you want them to know?

By pledging to donate our brains, we can all play a part in changing the future. Ultimately, the end goal is to get researchers closer to a cure, and if they haven't got the pledges coming forward, they're unable to do so.