PSP Costs….

It costs your future.

It costs your present.

It costs the futures and the presents of many of those around you as well.

It costs financially. Not simply because treatment, equipment and care are expensive, but because the disease often forces people to stop working. In many families, both the patient and the caregiver lose their income. It also costs because the disease moves far faster than the systems designed to support it. By the time funding, equipment or services are approved, your needs may already have changed.

It costs your home. You find yourself renovating to make it accessible, buying specialist equipment, adapting rooms and, for many, welcoming a full-time carer into what was once the most private part of your life.

It costs your energy. It drains you like a parasite, turning simple tasks into difficult ones. It invites sadness into places where joy once lived.

It costs relationships. Some people quietly drift away. Others struggle to know what to say. As frustration, grief and apathy grow, you can find yourself withdrawing from the very people you love.

It costs your independence. It forces many into a wheelchair and takes away the freedom to travel or even leave the house without help.

It costs your peace of mind. Living with the knowledge that difficult symptoms lie ahead, that there is currently no treatment to slow or stop the disease, and that the journey is likely to be shorter than you had hoped, is a heavy burden.

It costs.

The price is not measured only in money, although that is significant. It is measured in lost opportunities, altered dreams and the cruel speed with which everything changes, leaving little time to enjoy the rewards of a lifetime of work.

There are countless other costs too—medical appointments, endless paperwork, adapting every aspect of daily life, learning to accept help you never imagined needing, and so many others that cannot possibly be listed.

And yet, it has also given me something unexpected.

It has given me a perspective on everything that came before it. Looking back on my life through a different lens has been enlightening and thought-provoking. Through writing, it has awakened me to what truly matters, what endures, and what deserves my time and energy. It has also reconnected me with old friends. Time and perspective have allowed us to leave behind old misunderstandings, the simple drift of busy lives, and rediscover friendships that I thought had been lost.

But that perspective has come at far too high a cost.

I believe and trust in G-d that there is a reason for all of this, even if I cannot understand it. From our human perspective, though, all we can see is the cost.

And yet, despite those costs, people find a way forward.

They continue to laugh.

They continue to love.

They continue to make memories.

They continue to find purpose.

I know.

Because I am one of them.