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I feel very fortunate that my cognitive skills have stayed strong, at least relative to before, and that I have been able to use them in ways that matter to me. It is something many people take for granted, but I certainly do not. At least, not anymore.
My mind now wanders to far and wide places to fill the void where I used to physically travel. Sitting at my computer replaces the seat I once occupied on a plane to a client workshop or meeting, although failing eyesight is causing a bigger problem every day.
In many cases, people lose their previous level of mental cognition. Others lose the ability to leverage what remains because they can no longer communicate what they know. From the research I have done, most PSP patients (well over 70%) experience cognitive impairment. Many suffer a form similar to Dementia or shades of Alzheimer’s, with which PSP shares the Tau protein. Thankfully, I have retained that capability so far and continue to find avenues to exercise it through chess, writing this blog, working on my book, and creating guides.
One thing that has not changed is my impulsiveness. None of this is part of a well-thought-out plan. It is simply a response to thoughts that pass through my mind. For example, this morning I was saying Psalms (Sefer Tehillim) for a sick baby and realized that much of it is lost on me because of my limited Hebrew and lack of appreciation for poetry. But today, for the first time, I understood it differently. In true “Ben style,” I wrote a 25-page guide to help myself and others appreciate it better. It is not what most people would do, but it felt right.
I admit I am fearful about losing this skill. The thought of going through life unable to share my ideas and perspectives terrifies me. Therefore, I am being as active as I can now and flexing the muscle while I can. I do this partly in the hope that flexing the muscle helps improve its longevity.
This ability is a blessing, and I do not underestimate its value. More than any physical challenge I face, the cognitive one matters most to me. The fear of losing it, or even having it diminished, is overwhelming. I cannot control the future; I can only deal with the present. For now, my plan is simple. I will make the most of the intellectual capacity I have today.
It is worth noting that in many cases, cognitive ability does not fully disappear in PSP patients. Often, they simply cannot communicate it, which creates enormous frustration. My hope is that caregivers and families will do everything possible to help patients express their thoughts rather than assuming those abilities are gone. Even if it is harder or takes more time, I believe most patients would value being included in key decisions.
So here I am. I am writing, creating, and living with intention. I do this not because I know what the future holds, but because I know what I hold right now. I hold the power of thought, the gift of expression, and the courage to keep going.
