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This isn’t a medical blog – it’s a patient’s perspective. Keep that in mind.
I’ve seen other patients mention this, and honestly, as I write this, I feel like I’m on one of these plateaus. As much as I don’t want to tempt fate, I committed to give a patient’s view and these plateau’s in my view are important.
What Is a Plateau in PSP?
Progressive Supranuclear Palsy (PSP) moves fast – often progressing over less than 10 years from the first symptoms (mine began in 2020). But it’s no straight line; it stumbles in jagged steps. There are stretches where decline hits hard, and you scramble to adapt. Then, for what seem like random periods, things ease off.
For example, I had a bad fall and a choking incident a few weeks ago. That forced changes:
- Switching to low/no-texture foods
- Moving permanently downstairs
- Taking steps to avoid falls
Since then, I haven’t had a major incident for a couple of weeks (except for two minor falls and one significant freeze). As a result, I’m feeling pretty good – calm and relaxed physically – though none of the core symptoms have improved, and my neck muscles remain as rigid as ever.
In my experience, these plateaus often follow major adjustments – like switching diets or moving to a walker or wheelchair – where the benefits of those changes temporarily give some breathing room against certain symptoms. I don’t know how long this will last, but it feels like a breezy window compared to the stuffy, confining nature of PSP.
Disorientating
These brief interludes can feel disorientating. The body and mind get used to “war mode,” and then suddenly it goes quiet, leaving me a little bewildered – the intensity fires down.
Bizarrely, these lulls stir guilt in me. All that energy – family’s, friends’ – poured into my “crisis mode,” and now? It feels almost undeserved. I hate that so much is poured into my needs when I’m feeling relatively steady. Maybe that’s just me, but who knows? It’s like the world’s still braced for impact, and I’m the only one catching my breath.
Welcome
Still, these plateaus are extremely welcome and very much needed. They feel like a merciful pause on the rollercoaster. Positivity creeps back – I venture out more, like yesterday’s epic wheelchair trek with the dog, wind whipping past as if PSP took a coffee break. I know I’m less of a pain in the neck, and that alone lightens the load.
Caution Urged
Of course, there’s no predicting when the next step on this journey will come. Please G‑d it never does – but it always seems to. The trap? Overconfidence. I’ve learned to savor the calm without tempting fate – not letting it trigger a decline.
Two examples weigh heavily on my mind:
- Because choking has been under control, it’s tempting to expand my diet to more textured foods. I won’t allow that – one slip, and it’s feeding tube territory. I’ve stared that down once; not again.
- The same goes for walking. Taking liberties could bring on an unnecessary fall.
With PSP, you have to reap the rewards of these periods of relative calm because there are enough dark moments. It’s a chance to regroup, refresh, and remove PSP as the main subject of attention. Reading other blogs, you hear these plateaus described as “golden weeks” or “the eye of the storm.” I hope this plateau lasts a long time, but I won’t get over-confident, let my guard down – or self-sabotage.
Do you – if you’re a patient or caregiver – experience something similar? Feel free to share your thoughts.
