Our Favorite Memories of Tom Isaacs

We will leave it to others to tell you about all of Tom Isaacs' accomplishments in detail. You should know that he was diagnosed with Parkinson’s at age 26 and lived with the disease for 22 years. He founded The Cure Parkinson’s Trust, which funds research into Parkinson’s disease. He was also the first person with Parkinson’s to speak in a World Parkinson Congress program, way back in 2006. In Tom's death, we have all lost a wonderful man, friend, and leader. We wanted to share our memories of him with you.

As the Executive Director of the World Parkinson Coalition, I was quite fortunate to have Tom be the very first person I met who was living with Parkinson's. I still remember his voice over the phone, when he called in 2004 to talk about "this meeting I heard about, the World Parkinson Congress, what it this about and are people with Parkinson's really invited to attend?" It was during that phone call that I fell under Tom's spell. His incredible sense of humor had me laughing until the moment I hung up the phone. It was during the call that I thought, "we really need to get this guy to give a talk on humor and PD at the WPC 2006." At that first WPC we had just one person with Parkinson's on the program, and it was Tom, speaking about how he used humor to live well with Parkinson's. His secret of using humor wasn't a secret for long and soon the global Parkinson's community would start to hear from Tom and have their own chance to engage with him and benefit from his sense of humor. His success at the Congress also helped the WPC evolve to bring a tremendous number of people with Parkinson's into the designing of the subsequent Congresses, ensure people with PD were included as presenters, and that basically the patient voice was part of everything the WPC designed.

Not only did Tom speak in the program about humor and PD, he was part of our press briefing. He wanted the journalists to know what it was like for a person living with PD. Tom started the press briefing "off" his meds and dealing with some of the hard challenges of speaking and moving. He talked briefly, then shuffled out of the room, where he took his meds. Thirty minutes later he re-entered the room fluidly, moving easily and speaking clearly. The journalists were stunned. They had never seen someone with PD go from being "off" to "on" in what seemed like lightening speed. The journalists were quickly under Tom's spell. Seeing a trend here?

Tom, over the years, became a close friend and advisor to me on many, many decisions around the evolution of the WPC. He had a hand in improving the WPC in ways that cannot be measured. Losing Tom is not only personally devastating for me, but a tremendous loss for the global community.

I asked Kathleen Jordan, my colleague to share her thoughts on Tom, as someone who'd only known Tom for a short time, she too fell under his spell and was amazed by his energy and humor. Kathleen met Tom in person at the WPC 2016 in Portland. She was tasked with managing the "Music and PD Lounge" program, at which Tom was slated to perform. She sat with Dave Sangster, our organizer for that event and remembers him preparing slides for the performers. Dave pulled the slides together while saying something along the lines of: “I’m going to include 10 pictures of Tom it will be really funny. Tom is amazing! Here’s a picture of him with the pope. And another one in his running gear. He is going to laugh so hard.” Dave knew quite well that Tom's sense of humor would shine and that he'd get a kick out of Dave's attempts to make him laugh. Tom was always making others laugh, we all wanted to make him laugh in return. No one could make fun of themselves better than Tom, his ability to poke fun at his own challenges was, and is, a lesson to us all.

When Tom performed his songs at the "Music & Movement Lounge" he had the audience in stitches. He changed the lyrics of "Climb Every Mountain" from Sound of Music, to be about Parkinson’s. He brought down the house. (Watch it on YouTube) So much so that we asked him to do an encore performance at the closing ceremony, which resulted in this truly epic picture below, he got his own back up bandmates, the lovely volunteers from the WPC 2016 who jumped at the chance to support Tom.

“Grow very stem cell,
search every gene,
sequence every exosome,
till you cure PD!”

After the congress Kathleen was tasked with typing up all of the responses from the evaluations of the sessions. (Yes, she read and typed up every single one of them!) It was abundantly clear from her work typing up those evaluations that the community loved Tom. Every session he participated in had comments that went on for pages about how amazing Tom was and how we need to invite him back again, and again, and again. This comment sums it up best:

“Tom Isaacs‘ presentation was a joy. His humor and compassion were refreshing break/ counter from the serious nature of our situation. At the same time he was honest and down to earth re: the realities. His talk was valuable to me as a caregiver, to my husband who has PD, and I am so glad all the researchers and clinicians were here to witness it!”

Whether you knew Tom 20 years or one year, his infectious spirit, sense of humor, and intelligence would have you under his spell in a nanosecond. He was a leader from the day of his diagnosis and he dreamed about helping others with PD to also become leaders to march alongside him in his journey to end Parkinson's disease. His brilliance, compassion, humor, and beautiful singing voice will be deeply missed.

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Elizabeth "Eli" Pollard is the Executive Director of the World Parkinson Coalition
Kathleen Jordan is the Digital & Communications Coordinator at the World Parkinson Coalition.

Ideas and opinions expressed in this post reflect that of the authors solely. They do not reflect the opinions or positions of the World Parkinson Coalition®.