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Last night, I wrote what can only be described as a rather gloomy post about my Shabbat: how I had fallen, choked, missed meals, and felt the mental and physical challenge of using the manual wheelchair for the first time. It wasn’t pleasant reading (or writing), and I’m not here to pretend that everything is rosy and perfect. The decline is real and at high speed, but today has been a much better day.
I’ve decided to use the electric wheelchair indoors, at least during times when I’m feeling stronger. It’s highly unlikely I’ll freeze or cause damage while using it inside, and that simple change has made a massive difference to my ability to get around and my peace of mind. However, I’ve stopped trying to use the walker inside the house because it leads to far too many falls.
Another positive step is that my wife ordered a rear control attachment for the electric wheelchair that allows a carer, friend, or family member to drive it without having to push what feels like 7,000 kg of my body weight around outside (see https://www.youtube.com/watch?v=V-xqEWkfld8). It doesn’t solve everything, but it’s a big improvement.
Perhaps even more importantly, I mentioned last night that I was planning to publish my third book, and today it’s live on Amazon and Kindle! I’m not shouting about it here because, for me, the real achievement is the writing itself, not the sales (although I’d appreciate it). You can find it on Amazon & Kindle by searching for “Around the World in Kosher Ways”. This book is special because it has nothing to do with PSP. It’s a humorous collection of stories from my life before all this, centred around the mini adventures I had while working. It felt good to reflect on the amusing moments in the past.
(For anyone who needs Hebrew I have made a loose Hebrew translation using AI but please ask me for it).
We’re also moving forward with plans to get a carer, and I’ve come to terms with that need.
So, right now, mentally I feel good, positive even, though physically nothing has changed since yesterday. But it’s amazing to see the mental and emotional shift that can happen in just one day. That’s part of why I blog: it gives me a chance to take stock, reflect on how I feel, and capture this unpredictable, imperfect journey. If you’re navigating your own challenges, remember that sometimes the smallest changes can make the biggest difference.
