I tuned into this evening's BBC2 documentary 'The Parkinson's Drug Trial: A Miracle Cure?' with a mix of fear and excitement.
The 2-part documentary is about the GDNF trial, a potentially ground-breaking drug and delivery system and the brave individuals who came forward to test it.
The main fear for me wasn't seeing scenes of surgery, the uncertainty around the study or watching people in pain, although I knew those things would upset me. I was scared about seeing a familiar cheeky face on the screen. Hearing a familiar voice. Giggling at some familiar, really quite terrible, jokes. I was scared about seeing Tom Isaacs, our friend and a prominent character in the Parkinson's community, who passed away suddenly in 2017.
Much like, I imagine, most of the nation who watched the documentary my love and respect for Tom began as soon as I knew he existed. Diagnosed with Parkinson's at the age of 27, he spent many years of his life setting up and leading the Cure Parkinson's Trust, his unswerving belief in the fact that one day there would be a cure driving him forward in everything he did. But he wasn't all work, he had a ridiculous sense of fun and if there was a stage he would be up on it singing one of his parody songs and charming the audience.
Whenever anyone prominent in the Parkinson's community passes away it leaves us reeling. You question your own mortality, how quickly you'll progress, what life holds. With Tom we were left without a guiding light anymore and missing a friend.
Like most impact moments in my life I can remember exactly what I was doing when I was told he had passed away. I was on the Jubilee Sailing Trust's Lord Nelson ship midway through our voyage to London from Poole and I had just climbed up into the mast so was feeling incredibly proud of myself. While sitting up on the platform looking out to sea I reflected on life and Parkinson's and was feeling very calm and at peace. As I came down I grabbed my phone to text my parents a photo of me climbing and realised I'd had a few missed calls from my friend David Sangster. It was unusual for him to call me so many times and I knew something was wrong. When I called him back he said just 2 words to me. It felt very poignant after the thing that I had just done, something really truly out of my comfort zone, to find out the man who influenced me to live that way everyday was gone.
Although I'm sad Tom didn't get to see the trial he championed played out in this documentary and given such a prominent platform, I love the fact that now a nation has the opportunity to fall in love with him too. He was an incredible man and his incredible work continues. #TomsVision