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It was very sad on many levels to read of Jesse Jackson’s passing today – even though all we shared was the three letters PSP.
I am actually feeling really good at the moment with my daughter’s wedding getting close and with the sense that I am within touching distance of so many things that matter to me. I also have my new sports watch that measures wheelchair pushes, and it has given me a new daily challenge (I really suffered seeing my step count dwindle to 0 and not having another goal). My goal is 2,000 pushes a day, and at 12:06 p.m. I am already at 1,699, so today feels like a strong one.
But as has happened to me before, feeling good can easily slide into over confidence. I need to remind myself not to let that happen. After all, I have PSP, and I cannot allow myself to forget what that means.
That reminder came sharply into focus today when I saw the news about Jesse Jackson. I remember him clearly from my youth as a very dynamic activist and presidential candidate.
In November 2025 his family publicly announced that he had PSP. That announcement came after he had been diagnosed with PSP in April 2025, following what turned out to be a misdiagnosis of Parkinson’s. He had originally been diagnosed with Parkinson’s in 2017, three years before my own diagnosis. He passed away today at the age of 84. I know nothing about the specifics of his individual situation, so there are many factors that may not relate to me, but it struck me deeply that he received his PSP diagnosis only a month after I received mine, and now, less than a year later, he is gone.
It is true that our age gap is wide – I am 50 and he was 84. While age plays a role in PSP progression, it’s not straightforward – some studies suggest younger onset can lead to faster declines in certain cases, but individual factors like subtype and symptoms matter more. Jackson’s case was a stark reminder of how aggressive PSP can be, regardless.
I have often mentioned that when I come across an old video of a PSP sufferer speaking about their condition, the obituary tends to appear only a year or two later. Seeing today’s news was a powerful and sobering reminder of how quickly this disease can move.
I want to use that reminder in a positive way. As the excitement builds in my family, I need to avoid over confidence and avoid thinking I am on a false healthy level. I need to stay focused and avoid slipping, literally and figuratively, into a feeling of invincibility. Every step I take and every bite of food matters. These are the parts I can control as I do whatever I can to slow the progression. Ultimately my PSP is in G d’s hands, but I have my part to play as well.
I send my deepest sympathies to the family of Jesse Jackson and want to thank them for helping raise awareness of PSP. Sadly, in doing so, they have also shown how aggressive this disease can be.
