The finest compliment I ever had

Today I learnt that Tom Isaacs, President and co-founder of the Cure Parkinson’s Trust died very suddenly and unexpectedly yesterday morning. Tom is (yes, he still is) one of the most well-known PwP (people with Parkinson’s) in the world and has contributed so much to the global PD community. The world has lost an amazing leader and trail-blazer of the inclusion of patients’ voices on every level of PD research and I have lost a friend, role-model and mentor.

Tom was one of the very first people with PD that I reached out to outside of Sweden. It was in early 2010 and my day job was environmental risk assessments for former industrial sites and other polluted areas. At the same time, I was looking at ways to pursue my passion for helping patients and researchers understanding each other better. I can safely say that I wouldn’t be doing what I am doing today if Tom hadn’t given me his time, listened to me and encouraged me. We communicated via Skype and emails for a few weeks and when he heard that I was planning for a trip to London with my family, we decided to get together for lunch.

We met Tom Isaacs and Helen Matthews for lunch in central London on a Thursday in April 2010, incidentally the day after the Icelandic volcano eruption that put a stop to most of the airline traffic over Europe for a week or so. We had a very nice meal together and didn’t know at the time that our visit to London would be longer than we expected… We had a hotel room booked until Sunday and when we realised that we wouldn’t be getting home in time for work and school on Monday, I reached out to Tom. He and his wonderful wife Lyndsey invited us to stay with them a bit outside of London and we were very happy to accept. The city was starting to feel a bit too much for us with one parent fretting about possibly running out of her medication and the other starting to running out of reasonably priced ways to keep a six-year-old happy.

We were able to get some clothes washed and relax in their garden and if it hadn’t been for the stress of possibly running out of medication, I would have been perfectly happy there. One morning I came down to the kitchen and found Tom feeding the dog. We started comparing symptoms and medications, as you do, and Tom asked me if my meds had kicked in yet. I said: “yes, I think so”. Tom then looked me up and down and up again, apparently weighing that he knew I had experienced my first symptoms of PD 25 years earlier against the (compared to him) small amount of medication he had seen me take earlier. He paused and then he said: “you know Sara, you should be ashamed of yourself”. During his second pause, I silently wondered if I had offended him in any way. Maybe there were unwritten rules that I had missed? He looked at me with a twinkle in his eyes and said: “Sara, you are a sorry excuse for a person with Parkinson’s!”.

Tom, I will never forget you and in your honour I hope to remain a sorry excuse for a person with Parkinson’s for a long time yet!