Today I had 2½ falls – the “½” was more of a slump than a full-on crash. Afterward, my son and I had a debate about why, thank G‑d, I’ve never broken anything. I credit my daily yoga and my finely honed falling technique. Honestly, I believe that if I were still in the shape I was before I started exercising, back aching, stiff, and sluggish, I’d be a complete wreck by now. That old version of me would have crumpled under the strain. My son, however, has a different theory. He says I’m “bulky and not brittle,” which I think is his diplomatic way of saying I’ve got plenty of inbuilt padding. Or, less diplomatically, that I’m a big lump. We’re probably both right, along with a healthy dose of luck or divine providence, depending on your perspective.
The risk of falling is something I hear about often from families and carers. Most people with PSP are older than I am and often not nearly as “well-padded.” One fall can lead to a trip to the ER, then a hospital stay, then a decline in mobility, and from there it’s a slippery slope – less movement, more weakness, depression, and a loss of independence. I’m lucky, but I can’t take that for granted. I have to be so, so careful.
Impulsiveness is a real challenge. I was chatting with a caregiver recently, and he mentioned how impulsive his loved one with PSP can be. I could relate immediately. I’ve always been impulsive, but now it’s magnified. We both laughed, a little nervously, about the phrase: “I’m okay, I’ve got it.” It’s become a kind of code for “I absolutely do not have it.” I’ll try to get up too quickly, not stopping to think through a safer plan. It’s a dangerous habit, and I know it. But knowing and doing are two very different things.
The strain on carers is enormous. This morning, around 7 or 8 a.m., after being up since 2, I decided to go downstairs. I was bored, my eyes weren’t working properly, and I could only see a narrow, blurry field of vision. Because of ongoing renovations, our downstairs bathroom is out of order, so I had to make the trek upstairs and back down. Of course, I fell. I couldn’t get up on my own. I called for help, and my daughter came running, but she couldn’t lift me. Only my son can manage that – being in an elite special forces unit has its perks, apparently. So, for the first time since I was five, I bumped my way down the stairs on my backside. It was humbling. I’m not an easy patient, and I know I can be a pain in the neck. It’s exhausting to stay alert all the time. Sitting here now, I can see that clearly. But give it a few hours, and I’ll probably forget again.
Signs of progression are hard to ignore. My balance is worse, I feel slower, and my eyes are more often blurry, watery, and narrowed. I know this is part of the progression of PSP, but I refuse to accept it as inevitable. I have to keep pushing, mentally and physically. That’s part of why I’m writing this – to remind myself, over and over, to stay careful, to keep moving, to keep doing the work.
Letting go is sometimes necessary. Tonight, my daughters and future son-in-law went bowling. I wanted to go – really, I did. But it just wasn’t practical. I have to be okay with sitting it out. I have to be okay knowing that, even if I can’t see the pins or use the lane without bumpers, I still would’ve won. Obviously.
A note to fellow patients and carers. As patients, we have to do everything we can to manage our impulsiveness – to pause, plan, and move carefully. As caregivers, we need to understand that this impulsiveness isn’t just us being “dumb”; it’s part of the disease.
I’m also thinking of starting a small WhatsApp group for PSP patients and caregivers to share tips, ideas, and support. I know there are Facebook groups, but a WhatsApp group has a different, more intimate vibe, and I’m keen to try it. If you’re interested, please use the new contact form on the right-hand sidebar of the blog to get in touch. I’ll share details on how to join from there.
So, we move on. Time for sleep. Here’s hoping for a better few days ahead.
