There has been so much change, and yet it still feels like the calm before the storm. I’m not naïve—I see the changes: the walker, the difficulty getting around, the apathy, the emotional weight of retiring from my career, no longer being able to drive, the falls, and the near misses. But it still feels surreal. I’m not in active treatment like others with incurable or terminal conditions. I’m in this strange, almost peaceful, yet deeply frightening zone I can only describe as “the calm before the storm.”
To build on my ‘Ark’ analogy from last week—I am at peace with the situation and it is relatively calm, perhaps too calm. I see the ripples: balance issues, muscle pain, eye problems, behavior changes. But I know the storm is coming. The rapid decline is ahead.
I’m a person of faith, and I believe nothing is inevitable. Maybe I’ll be sitting here in 10 or 20 years writing about something completely different, having received a miraculous intervention. I also know that everyone eventually reaches their end, and that every minute of life is precious. I also know many people face struggles far more painful than mine. Yet…
I’d be doing a disservice to the fear that sometimes overwhelms me when I think about the “rapid decline” phase of PSP. That’s the part that feels like the start of a rollercoaster ride—strapped in, the train slowly climbing, knowing the drop is coming.
PSP is a ferocious rollercoaster—not the fun kind. When the rapid onset hits, it’s fast and violent. I would not be honest if I didn’t say that it truly scares me. The unpredictability, the speed, the loss of control—it’s all terrifying. And while I try to stay grounded and hopeful, that fear is very real and very present.
It’s a fear I know my wife and family share. In some ways, their journey is even harder. But I can’t write for them. We each process pain and reality differently. My wife—my chief caregiver, though she never asked for that title—is in this with me completely, and we will ride the storm together—but we share different, although overlapping, fears.
And then, honestly, there are moments of denial. Sometimes I feel like a fraud. With no treatment, and especially when I’m sitting and not dealing with balance or walking issues, it can feel almost normal. In fact, some of the symptoms I initially associated with Parkinson’s—like tremor—have faded. I feel like myself again, at least for a moment.
The truth is, I experience such a range of emotions that it’s hard to articulate. I came across this study this morning: https://link.springer.com/article/10.1007/s40120-022-00420-1. It helped put some of those feelings into words. “Interesting” perhaps isn’t quite the right word—I certainly wasn’t shocked by it. But Figure 3, in particular, captured something I’ve struggled to express. It maps the emotional journey of people with PSP in a way that mirrors my own—moving from confusion and fear to moments of adaptation, resilience, and reflection.
A lot of my blog posts blog have focused on two words that seem at odds: fighting and adapting. I’m doing both. I’ve made big changes to improve my quality of life and reduce the stress that was causing acute difficulties. That’s adapting—maybe even accepting—and this will continue as we make changes to the house for the likely needs. But I’m also still fighting: trying to stay positive, stay healthy, and give myself and my loved ones the best quality of life for as long as possible.
I don’t have magic answers. But I think I’m doing pretty well, all things considered. And I thank G-d every day—many times a day—for the blessings I’ve had and still have.
We all have our challenges—and for many of us, it is the uncertainty of what lies ahead that is perhaps the most scary thing. In this, I call upon my faith and my G-d to steel me for the journey and to protect my loved ones through it.
One Response
Good day Ben!! I’ve read this recent blog. It is very truthful! I am still moving on my own. Was at neurologist on July 6th, and he said right now I am stable. I’ve had PSP for 5 years, 7 months. I take turmeric vitamins every day. Put turmeric and ginger spice powder in my green tea every morning. I drink about 4 cups of green tea every morning. It has ltheanine in it which helps keep the tau tangles in your brain from getting worse. Reason for turmeric on or in everything is because people from India have the lowest amount of folks with any degenerative brain diseases. I’m also using lots of pepper with turmeric spice cause pepper helps it activate quicker! Take 2 digestive enzymes each day, as well as ginko biloba , COQ10, and alpha lipoic acid. I’ve been using all the above for the last 7 months. I was finally diagnosed with PSP in January, 2025. Then I started googling everything about it, especially how it affects your brain. I think you were diagnosed with parkinsons to start with. I was as well. Til I had the MRI, December 2024, then met with neurologist January 2025, and he showed me the hummingbird in my brain. I’m thinking you can probably get turmeric and ginger spice powder, black pepper, in Isreal. Perhaps give them a try. And green tea to help. With PSP, we are all at different stages. I’m not giving up!! I haven’t had any backward or forward falls yet. I do stretches everyday and walk up to 10,000 steps everyday. My husband will be my carer when the time comes. Hoping to put that off as long as possible. Trying to stay positive, and keep on moving!! My neurologist said to stay as active as possible . So I am. Also glad that now you say your home is your castle, kingdom!!. I have a sign in my house now that says – When the Queen is Happy, There is Peace in the Kingdom! Hoping you make a sign for the king in your house!! I’ve written a book here, hope you can stay well!! The fight is on!! It will be on my terms!! I’m 65 and want to live to be 100!! Lol!! Hoping!@