Obviously, all sorts of things have happened in the meantime, far too many to go over in one post. Here are the highlights, starting with a kind and offensive question.
Towards the end of their week-long visit, we took the grandchildren on a rainy-day excursion to the small national aquarium. By this time, Jon’s energy reserves had been whittled away by constant (welcome) company and daily activities way beyond his usual routine, so he was not at his best. Instead of traipsing round marveling at the sea horses and petting the star fish, he went and sat in a quiet, dark corner. And yes, he looked tired and drawn. But did a helpful 'aquarian' really have to come up and discretely ask if Jon needed to borrow a wheelchair? The question flustered both of us. Is it really so noticeable when Jon is off? Indeed, how great is the difference between how we think we seem and how we actually appear to others? Jon decided to turn down the offer, and an hour or two later was feeling much better – and we told the kids right away, as a sort of exorcism. Let’s hope it’s a good long time before anyone asks that particular question again.A cautionary tale concerns a drugs muddle directly related to the enormous amount of time it has taken to get Jon accepted into the local health care system. We left Holland with a small suitcase full of drugs, enough to last Jon through the spring, in the certain expectation that he would see a Danish neurologist long before reaching the bottom of his stash. How wrong we were. It is only next week, a full seven months since his last appointment in Holland, that Jon finally gets to see a Danish neurologist. The stash is almost gone, and at the bottom of it were the last L-dopa tablets Jon was prescribed in Holland – significantly, from a repeat prescription made out by a faceless colleague of his regular GP. In Holland, as in many other countries, they aim to give patients the cheapest type of medication, so we didn’t really react when Jon was given a generic tablet instead of his usual brand-name pills. It turns out, though, that these were not quick-release tablets as they should have been. It took the best (worst) part of a week of deterioration and despair (quiet on Jon’s part, loud on Marie’s) before we realized what was wrong. We now know for an indisputable fact that it is hugely important that Jon’s tablets are quick-release, and we know always to double-check what the pharmacist gives us.
An uplifting tale, sort of, is the story of how we changed a wheel on the car. It is unnecessary to tell you exactly what manner of idiocy caused us to find ourselves with a flat in the first place. What matters is that the incident clearly illustrated the frustrations of living with PD: Jon wanted to do it and knew how, but was physically unable, while Marie definitely didn’t want to do it, didn’t know how, but could be talked through the process. We are generally extremely, debilitatingly incapable of performing any DIY task together, but for once – perhaps for the first and last time ever – we performed an exemplary piece of teamwork. Nice to know it’s possible, though we’ll try not to make a habit of it.
On the upside, Marie has just finished work on her latest paid project. There is a good chance that more work will come her way from the same customer later, but then as shorter projects and not so deadline driven. Finance-anxiety may set in at some point, but for now we both enjoy the extra time – to be spent together, and on volunteer work for the local Parkinson’s association, and on/in our increasingly wonderful garden.
