A damn fine day…

Today was interesting, initially in a bad way, but I managed to turn it around and pushed the PD flat on its back (for a time…).

The last two nights I have experienced extraordinarily deep sleep (for me), deep enough to perhaps dream, even, which is indeed a rarity these days. Unfortunately, the reason behind the welcome slumber was not from the “good” category: after much reflection, I can only attribute it to a near collapse from exhaustion.

The past several months have seen a quite rapid acceleration in symptoms after almost two years (maybe…) of relative stability: so long as I stuck to my medication regime religiously, I could reasonably factor in such anomalies as a particularly hard work out or an unrelated stressor and get fairly predictable results. Not always good results, but at least predictable.

Recently, I have lived 24 hours a day between the two “off” extremes of Parkinson’s.

1. The over-medicated induced dyskinesia wiggles and odd movements and;
2. The under-medicated dystonia of a shut-down of my right side, initially manifested through a severely painful “muscular contracting claw” of my right foot and wrist muscles (actually, a little bit of my left side is shutting down now, too, so I got that going for me ).

In a truly novel juxtaposition of what I would have thought mutually exclusive symptoms, for the final 30 minutes or so of transition from one to the other (these range from “soft landing” transitions to at times 5-6 brutally intense daily swings), I am currently experiencing both symptoms of over and under medication simultaneously.

The short conclusion to draw from this is that, as the French would say, “I’m fauxed” until and unless Deep Brain Stimulation works (scheduled for September).

That certainly does not mean that I cannot function, however. The tricky part is handling the psychological accompanying symptoms of both “off” conditions: over-medication is fatiguing and difficult on the body, but the induced mood is invariably positive. Not so with under-medication. With the dystonia comes severe, nearly un-relievable depression and ennui (indecisive listlessness).

Only nearly un-relievable, however, and that’s what made today so interesting (good interesting). After spending the morning bringing Jared to get his braces removed  and doing house chores, the depressing fatigue was so great that all I could think of was laying down and giving up (for the day, that is).

I had two alternatives.

First, up my medication with the certainty that in an hour I would be severely over-medicated, but at least in a decent mood and capable of being marginally productive, or;

Second, try to suck it up, maintain the medication regime I’ve established (which still puts me over, but a manageable over-medication), and try to literally power my way through for 30 minutes until my “normal” dose.

Please let me insert here that sucking it up sounds like a good idea when detached from the reality of the situation, but it was one of the hardest things I’ve done in my life. I only attempted it because I got good and pissed off, angry like I haven’t been for a very long time (ask Jared…).

I did it.

I actually weed-wacked (a nightmare of wrist intensive, loud, back-hurting labor) the entire yard for the first time since last fall (not pretty, both yard and me). I managed to power through the dystonia, limping, but never relinquishing the weed wacker or having to rely on my canes, and got through to the other side.

The rest of the day was spent on the slightly to moderately over-medicated side, I got lots done around the yard and on the boat, and even customized a T-shirt to wear to celebrate the event real time (all while blasting classic rock). If truly interested, please email or text and I’ll send you a photo, but the T-shirt is not suitable for children (well, only for one child – me!).

It’s 7:25 pm now, and I just went through a transition while writing this (more sucking it up). With a bit of luck I will be able to carry this experience with me for the following days, weeks, and months, but nothing is ever as easy as it seems. Still, it was a very difficult and a very good experience. It will be interesting to see how/if I sleep tonight. It is now 8:30 as I post.

When all is said and done, it was one damn-fine day.

Cheers,
Pete

 

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