All patched up

MARIE: It can be hard to see things clearly if you’re too close to them (I guess that’s why it’s always easier to solve other people’s problems), so although Jon and I both think his new Exelon patches are doing him good, we weren’t really certain how much good.

So it’s been really good to hear from several people who don’t see Jon every day that they have noticed a clear improvement in him. The physiotherapist told me Jon seems keener and is definitely quicker round the torture chamber of exercise machines, our neighbour said he’s been more cheerful lately (after a demonstration of Jon’s ballet moves), and my family who invaded us for several days over Christmas felt he is more engaged and with it.

To cap it all, he had a truly splendid New Year’s eve party. Okay, he was very slow of foot when we arrived and did have a muddled half hour early on when he told several jokes with the punch line first, but from that point on he was on an upward trajectory. A daybed had very thoughtfully been provided by our hosts – it generally really helps when Jon can have a half hour’s time-out now and again, and he’d made liberal use of similar arrangements during Christmas, but for New Year’s eve the bed remained untouched. In fact, by the time everyone else was getting ready to go home some considerable time after midnight, Jon was in his stride and could easily have stayed on.

Of course this miracle of stamina was fuelled by regular applications of drugs. Jon now takes L-dopa every two hours from 6 in the morning until 10 at night, and he just carried on with this schedule for many extra hours. That, probably in combination with the alcohol and the fags he bummed from other guests, kept him in high spirits.

The price, predictably, was that he was still flying high when we got home and didn’t get much sleep that night. In the first 24 hours of 2012, I don’t believe he managed more than 3 hours’ sleep in total – and nor did I. He got up at 6:15, turned on all the lights and let the cat out, then went back to bed. So I got up at 6:30, turned off all the lights and let the cat in, then went back to bed. So he got up and made a loud cup of tea. So I got up and had a wee. Then we both went back to bed – and 5 minutes later the first pill alarm of the day went off. Sometimes you just have to cut your losses, so we stayed up after that.

In the subsequent 24 hours Jon’s sleep ratio was reversed, and today he seems about back to normal. It didn’t use to take that long to recover from a night out when we were young and PD-free, but never mind, it’s a price well worth paying.

Help and support

JON: The story so far … Jon, intrepid explorer of the properties of custard and kindred products, has launched an offensive to take back his brain, bowels and other body parts. Hence, the first thing I did on getting home after the neuro-psych testing a few weeks ago was to put together my oscilloscope whilst muttering darkly that “this is going to show them … dementia, HA! (mad cackle)”. So that’s the brain reclaimed, now for the other two.

If I remember rightly (and that’s somewhat unlikely given the current state of my neurons), I described the neuro-psychological testing and new drug in my last blog. A few days ago, we went back for another visit. Whereas last time was about diagnosing my problems, this time was more about identifying my strengths and finding coping strategies. First of all, it was established that I had taken the new diagnosis fairly well considering that I’d essentially been told my brain is turning to mush from both Parkinson’s and dementia. I have not become depressed or brooding, and nor am I in denial (I tried, but Marie wouldn’t let me). Apparently, that means I am well placed to tackle my cognitive deficits.

The neuro-psychologist suggested that I need to take many, short breaks so I don’t wear out my poor old brain and that I should try to become more organized in my surroundings. Marie and I have always disagreed, and frequently fought, about the point at which a room goes from being “homely” to being “a vile mess”, and it seems Parkinson’s is now on her side. In the interest of order, I threw away my collection of old copies of the New Scientist. It was nice to have them, but when would I read them? Probably never, I can hardly keep up with the new issues – although I have just remembered an issue which had a piece on Parkinson’s …

Further, I should consciously decide what things are worth remembering and what not – like not bothering to remember appointments and birthdays because I can just look at our wall calendar, not remembering about shopping or dinner because Marie can do that, but deciding what to focus on remembering from my Danish language school. Lastly, the neuro-psychologist suggested that I would benefit from attention training, though I have no idea where that would come from as cognitive rehabilitation is apparently not on offer.

That’s all well and good, but is it enough? I doubt it … but listen, what is that sound coming over the hill? Hurrah, it’s the cavalry coming to the rescue in the form of a very fine drug named Exelon. Exelon by name, excellent by nature, I say. I started using the patches three weeks ago. At first I felt a bit better, but being ever the pessimist I waited for the debilitating side effects to make themselves known. However, I have had no ill effects, and, as the Beatles sang, it’s getting better all the time. Next week Marie will ring the hospital to report this happy news and get a prescription for truckloads of this wonderful stuff.

In other news: as Marie mentioned in her last blog, she asked the local authority to send someone round to see if I’m feeble enough to be offered regular help. We were expecting to have to fight for support, either practical or financial. Well, it just didn’t happen. They treated our case as urgent, sent someone round within the week, did a thorough evaluation of my daily need for assistance, and made a decision on this within days. It’s something of a shock to me, coming from the UK, to be given the help we need with such speed and ease. On the other hand, Marie and I both feel a bit off about it – I’m kind of embarrassed that an outsider should see me as someone in need of help every day, and Marie says she doesn’t like the idea of me being sick enough to be treated as an urgent case.

Anyway, the upshot is that I have been granted a budget of 12 hours per week to pay for my own personal carer to attend to my every whim, such as drying my back and putting on my socks and sorting out my drugs. So who have I decided to appoint to this vital role? Why, it’s … Marie. It makes no obvious difference to our life as this is what she’s been doing anyway, but it compensates a little for the loss of her income from a “proper” job (she hasn’t had one of those since June) and it might enable us to buy in a bit of help with the cleaning and the lawn mowing. The hourly rate is rather pitiful, but it’s an improvement on nothing at all.

Shake, dribble and drool

JON: New drugs – again. My neurologist has prescribed some new drugs, but for once these are not pills but patches (one per day) which cuts down very slightly on the number of pills I have to take each day. With luck I may stop rattling and again be able to sneak up on Marie and the cat.

If you are reading this, you have probably already read Marie’s last blog. She says that she admires the way I have taken the recent news about scary D, although she also finds it disconcerting. I just find it plain weird.

It turns out that I score around about normal in several of the tests. There is a reason for this (arrogant though it may sound): prior to the PD I had very high cognitive functions (i.e. I was pretty damn smart). And as Marie put it, the higher you are on the staircase when you start going down, the further you have to go before you hit the bottom. So now I’m down to rating as normal. Me, normal? That’ll take some getting used to.

Anyway, Marie pushed me into telling my children the results. First she wrote them, and then she made me ring them. Left to my own devices I might well have skipped that little task. I always worry that my speech will let me down on the phone, and the one thing I hate the most is sounding like a gibbering idiot. OK, you may think I should be getting used to that by now, but it’s something I’m quite ambivalent about. Is the embarrassment from appearing to be gibbering worse than actually being a gibbering idiot? And would anyone but me be able to tell the difference?

As you will have noticed from her post, Marie’s reaction to the neurological news was pretty strong. It’s as if a switch has been thrown, as if we entered the neurologist’s clinic as two healthy people, but left a few hours later as a demented patient and his carer. But I feel fine, you know, and the probability is that I will continue to feel fine. Sure, in time I may begin to shake, dribble and drool, but so far so good. The only fly in the ointment is the label on the box of patches which boldly states “for the treatment of dementia in Parkinson’s disease”. Not the most tactful bit of product information I’ve ever seen.

The process for both PD and dementia is one of gradual change. One does not suddenly become demented, it’s a slow process, with luck a very slow process. At the PD meetings we go to there are lots of others with PD. Some are doing OK and have been doing OK for over ten years, while others crumble as we watch. I plan to be in the former group.

A note on general ignorance: At my Danish language class, I did a spot of awareness raising. My target was a 17-year-old girl who just can’t get her head round the fact that there are chronic diseases that don’t get better ever. Girl of 17 to Jon: “So, have you still got the Parkinson’s, then?” Jon (rolling his eyes) to Girl of 17: “YES, of course I do.” Girl of 17: “Oh,” (smiling the bright, vacuous smile of the terminally normal), “perhaps it will get better on its own.” Meanwhile in the corridor, another well-meaning and misguided person is praying for me.

It’s all a bit much. Unlike in America, land of opportunity and an odd taste in outdoor reading matter, it seems you can’t even buy a decent machine gun here, presumably for fear the bullets might hurt some herrings.

So who's normal?

MARIE: We went up to town a few days ago for the results of Jon’s neuropsych evaluation. Not good news, as he was basically presented with a long list of things that aren’t as easy for him as they should be – like planning, executing plans, staying on track, analyzing, evaluating, structuring, those kinds of useful skills. On the other hand, he scored better for verbal skills than he expected, so that’s something at least.

Of course you can’t test whether someone’s cognitive skills have declined if you don’t know what they were like before, so the psychologist started by taking a thorough educational and work history, from which she concluded that Jon was “originally a highly intelligent male”. A rather surreal factoid is that his mental capacities are now approaching bog-standard normal, which represents a significant loss for him.

There are a couple more tests to come in the next month or two, a fresh MRI scan to compare to the one he had four years ago in Holland, and a spinal fluid sample to be tested for the devil knows what. I believe this is mainly to exclude a few unlikely unpleasantnesses. And to be honest, sufficient unpleasantness has already hit the fan. Jon is now the not-so-proud owner of a box of Exelon drug patches labeled “against Parkinson’s disease with dementia”.

He’s only been using the patches for three days so we have no idea yet whether it will help, but at least it looks like he’ll be spared the rashes that force some people to stop. It seems you start out on half dose for a month to see how well you tolerate the drug, and if no ill effects appear, the dose is then doubled. So it’ll be a while before we can report on the effect.

Jon is taking the whole thing very calmly which I admire while it also puzzles me and maybe just ever so slightly concerns me. I’m not as resigned as he is and tend to get a bit teary-eyed – occasionally also in public, which is marvelously embarrassing.

Anyway, this last bit of bad news prompted me to call our local authority to ask them to come and assess the situation with a view to offering us help of some sort. To their credit, they decided to treat the matter as urgent and are sending someone round in a few days. Whether they will offer help that comes anywhere near to being helpful remains to be seen. I’m kind of expecting an uphill battle.