Time flies when you’re having fun. Who would have thought that life after taking a step a little out of the fast lane, stopping to drive, and finishing your relationship with Grape/Malt Alcoholic beverages, which you loved, would be so vivid?
Yesterday was a day I initially thought, on waking this morning, very little happened. A doctor’s appointment, a lawyer appointment, gym with my trainer, physio, a little work, some drafting of a theoretical book, some Jewish prayer and study, a little Netflix and football (soccer) on TV, some time with the kids and my wife—nothing out of the ordinary there. Also, I did 40 minutes of walking with Nordic walking sticks and a yoga workout. In general I rested and concentrated on my health and wellbeing.
But then, when I peeled back the edges on this weird reality that I have, there were at least six PSP/PD moments that stood out, and it’s interesting to see there were two huge near misses in there, which perhaps define the strange reality of life at the moment.
It offers an insight to the strange reality I find myself in and is important for me and people because it shows the days that don’t include the headline moment and pass for normal in my world.
Near Miss 1 – The avoided choke
They say with PSP and PD that avoiding two big things is absolutely critical; one of the two is choking or swallowing issues. I’ve previously written, a couple of years ago, that this was one of the big early symptoms and risks for me. It’s a huge issue and risk for PSP (and PD too).
As always, it’s “user error” and about awareness. Yesterday, for the good and bad: for the bad, I decided to eat too many almonds at once (we’re talking five or six), and as I chewed them, I realized I was headed for disaster. My mouth dried up (I’ve had significant dry mouth challenges for a few weeks now), and for the good, I sensed genuine fear and huge danger. For a split second, I held back, took a huge “STOP,” and then patiently took the almonds out of my mouth.
It has served as a huge warning for me, which, together with the taste saga from Shabbat, was an amber alert to be careful in the mouth area. By the way, I admit to testing the alcohol weirdness, and it still remains the same, although Gin now is seemingly in the good-to-go camp.
Near Miss 2 – Looking up at the sky is not good
As I was outside the house talking to a neighbor and my wife, a jet was going noisily overhead. As I’ve stated, I have a real issue with my eyes called Vertical Eye Palsy (one of the markers of PSP), and whether related or probably not, I looked up at the jet in the sky, and my balance completely left me, and I started to fall backwards. Somehow I was able to sort of do a few steps back—like a drunk dance—and just about avoided a massive fall down. Near miss 2 and lesson learned—again.
The above two items could easily have turned into nightmare scenarios. Theoretically, they could happen to anyone, but having incredibly low balance and a throat very prone to choking due to muscle degradation exposes the risk.
In many neurological advice documents and reports, they guard against falling (through exercise, balance work, and using a cane or other aids, etc., and of course not trying to be foolish) and, similarly, with choking and swallowing problems, are probably the two biggest recommendations health professionals make. I’ve actually practiced falling many times with my PT, and clearly some of the tips have paid off. I just need to be so much more careful than I was yesterday.
Startle Response came back for a visit
It was a symptom we spotted three or four years ago, and the late Professor Nir Giladi (OBM) defined it as “Startle Response.” I was sitting watching Netflix (Drive to Survive, if you must know, but you’d probably guessed from a recent post) when one of my kids came into my vision.
I screamed about as loudly as could possibly be achieved and scared both of us for a few seconds. They, of course, were, “I didn’t do anything,” and I was, “I didn’t mean it,” and then we had a little chuckle (neither of us particularly convincing).
Two unbelievably vivid dreams
Like I’ve never had before, to the extent that I remember them in pretty vivid detail—both would simply be classed as nightmares normally, but they were just incredibly vivid. I was able to write them down in detail, whereas I simply can’t remember a time when I remembered a dream before.
A scary social media post
I know I shouldn’t do it, but I did (I’m my own worst enemy, I know). I read on social media of a caregiver of a patient who was complaining (and people were comforting her) with the view that her husband was acting like a “terrible two”—a two-year-old. They were being comforted by replies that they had others support but a reminder that it wasn’t his fault—it’s the disease. This is perhaps my worst nightmare. It has spurred me into action to work out, well in advance hopefully, whether there’s any way I can significantly reduce the odd by, (a) work on myself to prolong this from happening for as long as possible, (b) work with my wife on how we’ll cope and deal with such situations, and (c) pray as hard as I can for this not to happen, or at least for us to get through it.
There’s probably more mixed in, but it’s an interesting reflection on the dangers that lie at the short-term and long-term door and, more importantly, two things: (1) it was okay because, for lots of reasons, it was in many respects an okay day, and (2) it reinforced how I need to push, push, and push to train myself and take care to beat the odds by a long, long way.
So much of this is in my hands to prepare and take care, and yet so much of it is fundamentally out of my hands, for which I need to pray (and hope others do so also).
It was a good day overall, genuinely, but on reflection a little more interesting than I want going forwards. People who were concerned about how I would spend my time – clearly don’t to worry. I am actually resting much more but it does seem like I have a little ways to go.
