Sparkling Wine, a Hotel and the Wimbledon Final

There are moments in life that remind you to stop looking too far ahead.

Living with Progressive Supranuclear Palsy (PSP) means the future is uncertain. I don’t know what tomorrow will bring, sometimes I don’t even know what the next few hours will bring. That uncertainty has changed the way I think about happiness.

It has taught me to embrace the good days when they arrive.

Tomorrow is our 29th wedding anniversary, so my wife and I have escaped for a night away in a hotel. Nothing too extravagant. Just a wheelchair-friendly room, a bottle of sparkling wine waiting for us, the Wimbledon Final on television, and the rare luxury of being looked after for a change.

This is a real gift for us.

When you live with a progressive neurological disease, you learn not to postpone joy. You stop waiting for the “right” time because you realise that today may be the right time. If your symptoms are quieter than usual, if your energy lasts a little longer, if you can share a meal, watch a tennis match together and raise a glass, then those moments deserve to be celebrated.

They are not interruptions to life.

They are life.

Tomorrow also marks 29 years of marriage.

Like every couple, we haven’t always agreed on everything, and we’ve certainly had our share of challenges. But through every stage of life, and especially through this unexpected chapter, my wife has remained the most important person in my life.

This isn’t the future either of us imagined when we stood under the wedding canopy nearly three decades ago. PSP was never part of the plan. Yet she has walked every step of this journey beside me with more patience, strength and love than I could ever have expected.

So this post is really a thank you.

Thank you for standing beside me when life became more complicated than either of us expected.

Thank you for helping me hold on to hope on the difficult days.

And thank you for making sure that, despite everything PSP has taken from us, it has never taken away what matters most.

Happy anniversary, Gayle.

Here’s to celebrating the good moments while we have them, and to making many more memories together, one day at a time.