Enough with the questions!

MARIE: We have just spent three jolly hours deciphering and responding to an 80 (eighty!) page questionnaire in Dutch about every aspect imaginable of Jon’s Parkinson’s. It sure is hard work being ill…

Seriously, though, this is a good thing. It is stage one of a thorough examination of the State of Jon which will be conducted over the next several weeks at a specialist Parkinson’s centre connected to the hospital he goes to. First you answer a million questions and solicit statements from all the different therapists involved (physio, psycho, the lot), then you (i.e. patient and partner, they insist on that) go to an appointment with a neurologist and a care coordinator where they go through your various answers and determine where there appear to be issues that need to be dealt with. Then an entire team of specialists are brought together to deal with these issues during a full day of consultations where you could be seen by physiotherapists, speech therapists, ergo-therapists, social workers, nurse-practitioners and any number of other experts. And lastly, there is another neurology appointment where recommendations are made and plans put forward for future treatments.

It’s crappy bad luck that Jon has got Parkinson’s, but if you’re going to get iot, what amazingly good luck to get it in Holland! Again and again we are bowled over by the efficiency, speed and thoroughness with which the health service works here.

So what do they ask about, then? Well, everything. For instance: have you ever fallen over? If so, how often? Where? How hard? In which situations? Do you feel faint first? Are you conscious throughout? Do you do anything to stop it? Could you do anything to stop it? Are you afraid of falling over? How afraid? Is your partner afraid you will fall over? Does the fear of falling over stop you doing activities you enjoy? Which activities? Is that a problem for you? Do you want to talk to someone about it? – I expect that you begin to see how easy it is to ask 80 pages worth of questions and still stay relevant to the matter in hand.

And these were the easy questions that could be answered on the spot. More time consuming was finding the names, addresses, phone numbers and e-mail addresses of every health professional Jon has seen in connection with Parkinson’s, listing every medication he has ever taken with precise dosages and frequencies, and micro-recording his every activity for several days for a reflective diary. But I really do think this will turn out to be time well spent. Watch this space.

JON: Since my last whine the sun has come out and all is well. Well, perhaps not ‘all’ but certainly ‘most’... well, more than last time I blogged, at least. In fact I’m feeling much better than I was, the sciatica is easing, I can sit almost normally, and I have a choice which side to lie on Most likely the sciatica has little if anything to do with the Parkinson’s; chances are it is just wear and tear and this old(ish) body slowly crumbling.

The high spot of the week has been filling in the 80 page questionnaire, with lots of comprehensive list of symptoms – on some pages I got a BINGO! when I could tick all the boxes: yes, I’m stiff; yes, I’m constipated, yes, I’m shaky; etc. etc.

But there were also pages where I ticked only a few boxes, such as where they asked about problems with eating and appetite. These I assume are symptoms that are yet to manifest themselves. Oh joy. The guide to the questionnaire did say very firmly that not everyone gets every symptom and that one shouldn’t get worried about the length of the lists of symptoms. Do I believe that, though? Bah, humbug!