My Sometimes Disservice to Those with PSP

I am a positive guy. I have a half-full attitude, and I draw strength from my faith, which means I talk about these topics, sometimes too much.

Don’t get me wrong. I believe in these things deeply. I believe in making the most of whatever environment you’re in and whatever challenges G-d gives you. It’s why I often quote Viktor Frankl and his remarkable philosophy, the extraordinary attitude he maintained in the wake of the Holocaust.

But let me set the record straight, not for the first time.

Just as I am absolutely convinced that Viktor Frankl would not have wanted to lose his entire family in the Holocaust in order to write Man’s Search for Meaning, there is no way on this planet I would want PSP.

There is no way on this planet I would want my family to go through what they are going through.

I am doing my best to make the best of a very tough situation. I do believe, honestly, that you should approach every situation in life with a positive attitude. But I do not want anyone, even for a moment, to think that this is something I want, desire, or derive any satisfaction from.

By chance, I watched a video of myself from ten years ago on YouTube, a lecture I gave in Barcelona during a three-year stint as VP of a 3D printing company. It showed me, starkly, how much I have changed.

In many ways I am still the same. I look broadly the same. I can recognise myself. But in another sense, I truly cannot.

My movement, my smile, my balance, my voice, my weight, my mobility, my eyes, my energy, my youth: all completely, irreversibly different. Everyone ages over ten years, but what I saw today was something else entirely.

My heart pleads for every carer and patient living with this terrible disease. My prayers this evening are that a cure is found, or a levodopa equivalent that meaningfully slows progression and reduces suffering, as soon as possible.

We live with this every single day. But I come back to what I feel is the core purpose behind this blog: in whatever situation you find yourself, you have a choice about your attitude. My attitude remains positive.

I saw my three children together today, albeit very briefly; all of them happened to be home at the same time. To them it was probably a nothing moment, but we talked, we relaxed, we laughed.

It made everything worth it as crazy as it may seem. It made all the struggle and all the hard effort worth it.

It made tonight’s one hour and forty-five minutes of whatever we call it, freezing, powering down, brain fog, bearable. It made it worth every minute of maintaining my attitude, embracing every opportunity, dealing with every challenge, and continuing to write to help me process this for myself and for others living it.

Sending my love to all PSP patients and carers.