Disappointment

I said last week that I had at last been given a magically wonderful drug that had the power to get me to sleep and keep me asleep for more than the usual hour or two at a stretch. Well, that didn’t last, and I’m now if not quite as bad as I ever was, then not a whole lot better off either. The height of your hopes is of course directly related to the depths of your disappointment, so you can imagine how I feel about that.

My body is falling apart around me. It is beginning to give me symptoms that really do not, repeat not, belong this early on in the disease. I’ve got the shakes really bad on my right side, feet stubbornly sticking to the floor, I’m hoarse and dry mouthed, my short-term memory is pitiful and I get confused over the simplest things, I have absolutely no energy whatsoever but can’t sit or lie still for long enough to get the sleep I so desperately need. Some of this might be side effects of drugs, some might be plain ageing, and some might be PD symptoms that are or aren't treatable – I just really, really wish someone would work it out and help get me on a more even keel. Right now would not be a moment too soon.

Also somewhat storm-tossed this week is my relationship with my wife. Before PD I was an uncommunicative soul. ‘G’morning’ and ‘g’night’ might be all I said to her or anyone else all day, and perhaps ‘what’s for pudding?’ on weekends. Much of the time I lived inside my own obsessive world of work and science, failing to hear phones and door bells ringing, and indeed failing to hear much of what Marie might choose to say. This state of bliss was apparently preferable to the situation now, where I follow her around like a wet dog, demonstrating my affection at every opportunity and expecting confirmation in return. Her worst nightmare: a demonstrative husband. Okay, I can see that if she chose to marry me as I was before, then she too must have been busy with her own life and this new me is perhaps not what she wanted. But honestly: females, eh? There’s no pleasing them (and apparently no shooting them either).

It all relates, though, to a question Marie asked me the other day: how do I want to spend the rest of my life? What gives me pleasure, what gives meaning and content to my life, what is realistically achievable now with PD? This is not a simple question. I always used to think I’d keep working until they barred the doors to the lab, so I am not taking that easily to the idea of early (semi?)-retirement.

Answers range from ‘If it stays like this I'm jumping of a cliff ASAP’ (though perhaps a slightly empty threat seeing that we live in The aptly-named Netherlands), via ‘Doing some good somewhere’ (as if, Miss Idaho!), to ‘Having a good time’ (but what is ‘a good time’, and can pretending life is one long weekend really have meaning?). Seriously, there are things I want to do, but I am still unsure whether mind and body will hold up to doing them. I want to write Books of Learned Science, I want to write books of lighter learning to show that science is fun and relevant to daily life. I could also see myself taking up angling – first collecting the gear and getting anoraky about flies, then the Zen of sitting quietly and waiting for something to bite. I’m quite keen on nature photography (no, the other kind of nature photography), and #2 wants me to build chicken runs and rabbit hutches for all the livestock she plans to keep and eat when we move to a larger garden.

But meanwhile, what really gets done around here? Well, I dutifully go for my walk every day, but I often “forget” to do my voice exercises and my stretches. I just about manage to stay on level terms with my e-mail intray, but there have been two articles following me around like a bad smell for weeks now, one that I am supposed to proof-read and one where I am supposed to respond to editorial critique. Well, at least I manage to get this blog done.

Which leads to my last point today. The comment has been made: if you can write this blog, things can’t be quite as bad as you say, can they? Well now, I never thought real men bothered with spelling and punctuation – that was for nit-picking, train-spotting stamp collectors (and Lynne Truss). Getting the message across was what mattered, function over form for me every time. But now my typing is so abysmal that Marie has to fix it if anyone is understand a word I write, and by mutual agreement that means she also adds in various bits of fact and background, and allows her own perspective to shine through here and there. For instance, my input for part of the above read:

I'ev become her own worst nightmare – a husand who cares, and os demostrativ e with his before the PD I was an ncomunacitive soul, g'm mornong and perhahs were the only things I'd SAYY AALL DAY, But is turns out this is preferablt to being ffolowed round like a lapdog,, ho hum females eh there is no pleasing trhem … '

You can see the kind of issues of impartiality this can also throw up… That’s a big part of the point of this blog, though, to provide a weekly opportunity for me and her to talk about what has happened, what we think about it, and why the other is wrong. Well, it works for us.

I slept!

You might remember that I saw my neurologist a few weeks ago and begged her to do something about my insomnia, sleepwalking and night-time hallucinations. She diagnosed a probable REM sleep disorder. “Great”, thought the wife and I. “diagnosis precedes treatment which precedes cure (or at least improvement)”. The neurologist would consult the resident expert on REM sleep and post a prescription to me forthwith.

Well, forthwith wasn’t as quick as I expected, and time passes slowly when your head feels like a medical emergency. A week and a bit went by, then Marie rang the hospital and left a message of some desperation. Another couple of days passed, before I took things into my own hands and went to see my GP, armed with the neurologist’s tentative diagnosis. The GP happily dispensed drug A (he’s quite keen on drugs for a Dutch doctor). It was wonderful! I slept that night for the first time in months, just slept and slept and slept, almost 12 hours straight. It was absolutely glorious! Marie tells me she kept creeping into the bedroom just to enjoy the sound of my snoring.

And wouldn’t you know: the following day, as if by magic, a prescription arrives from the neurologist for drug B, a rather less powerful version of the same class of drug the GP gave me (without the benefit of expert advice). I don’t sleep like a teenager with drug B, and I feel alert enough to drive … but ooh, do I miss drug A and its lovely sledgehammer effect!

The other development of the week is that I have stopped seeing the nice physiotherapist round the corner who did the best he could for me but who I think was beginning to feel that his bag of tricks was getting rather empty. Instead, I will now go to the neighbouring town twice a week to see a specialist in movement disorders (Mensendieck therapy, if that means anything to you).

It’s early days yet, but I am feeling hopeful about this. Ms Mensendieck seems quite unfazed by my many complaints and inabilities, and she focuses on treating the causes of my problems with exercises that I can also do at home, rather than focusing (as did my previous physiotherapist) on treating the symptoms with massages and other muscle stimulation. I guess Marie will just have to take over the massages, and she is already used to giving me frequent short buzzes with the domestic sander (yes, sander) that physio #1 suggested might give some immediate relief from my back pain.

The nice Ms Mensendieck has already given me a present, a rather peculiar CD with advice on how to carry out daily activities despite having Parkinson’s. There is the slight issue with this CD that (a) it is in Dutch which I don’t speak and (b) it has been organized by a stamp collector into minute and repetitive sections, but nevertheless (c) it appears to contain valuable advice that Marie can help me decipher (not being English, she has no phobia about foreign languages).

Now I am just hoping – so very hard – that the next few weeks will prove that all my fears about aggressive forms of Parkinson’s are quite mistaken, and that many good nights’ sleep (and a lot of well-placed naps) will set me right again.

Frustrations

Another week spent all on my own while Marie earns her keep selling books at a conference somewhere. It has its downsides, and its upsides, but apparently it has no side sides.

So how did I cope? Well, we actually both rather enjoy it when the other goes away for a few days and we get to indulge our various foibles and anti-social tendencies in peace. Thus, with my quiet-loving wife away, I got to keep the radio on at all times, and loud. Likewise, the entire place was one glorious mess with that seriously lived-in feeling I (and the fruit flies) like so much, until about one hectic half-hour before Mrs Neatfreak was about to turn up again. This time, I also got to nap when and where and as often as I wanted.

But perhaps most significantly I went into work on Monday morning on the first day back after my four-week holiday at home. I might as well have stayed home for all the use I was in my insomnia-addled state. As it turns out, I must have looked exactly like I felt, because taking one look at me my boss suggested (and I agreed) that I’d be better off going straight home again on sick leave. OK, I have been unable to function properly for several weeks now, but that was on my own time. But now it’s official, and although this is neither the best job nor the best employers I have ever had, the very real possibility that I may never be able to work again looms rather large. Being officially sick somehow feels much worse than just being sick – it’s got that whiff of the scrap heap about it.

As it is, I am in such a state that I can’t even pretend to ‘keep my hand in' by reading the latest papers, staying in touch with close colleagues, putting in the odd appearance. I had quite a few plans for what I wanted to do last week without Marie here to distract me with fripperies like mealtimes and fresh air. I had great plans to make progress on this book I am supposed to be writing with two good former colleagues, aiming to finish one chapter at the minimum. I was also going to look into a bit of Java script for a website I am building. And I had a good book waiting for me, and I was going to call my kids, etc etc etc. As it turned out, I failed on all counts and got very close to zero – zilch – nada done on any of these plans. Did I feel bad about this? You bet I did. Sure, I am still sleeping badly (see earlier posts), but I didn’t feel so sick that I could expect to achieve nothing at all. A big disappointment, and perhaps the beginning of some kind of learning curve involving the adjustment of expectations so that I can set myself an achievable goal and get to feel good about accomplishing something, rather than asking too much of myself and failing miserably and depressingly.

From everything I've read so far, I'm supposed to be in a kind of honeymoon period with drugs working at peak efficiency and all things running smoothly. When I got the diagnosis of Parkinson’s, I thought ‘okay, I'll take my pills and that will be that for years and years. I'll drive – work – run marathons – be normal.’ Instead, I'm a complete wreck. Where am I going wrong? On general health, I’m better than ever: I’ve quit smoking, hardly drink at all, take gentle exercise almost daily, but that appears to make little or no difference.

My huge worry is that I have been misdiagnosed and that I have in fact got one of the ‘Parkinson’s Plus’ conditions (a fear not helped by me recently reading Life in the Balance by Thomas Graboys, an admirably honest autobiography about Parkinson’s with Lewy body disease which causes dementia). Honestly, I’m crawling up the walls with anxiety. On the other hand, it is also entirely possible that all my present troubles stem from not sleeping – but I’m still stuck up here near the ceiling waiting for a prescription for new sleeping drugs. No matter what, PD is a progressive disease, so I can predict with some considerable degree of confidence that next year will be worse than this year. Ho hum. I wonder what other little jokes the universe has in store for me ….

Bah, humbug!

It seems that once you let them into your life, there is no escape possible. What did I have before? A bit of back pain and a slight twitch. And what do I have now? A bit of (slightly different) back pain and a bit more of a twitch – plus a medical team consisting of
1. GP
2. Neurologist
3. Physiotherapist
4. Speech therapist
5. Pain clinic specialist
6. REM sleep expert
with each their opinion of how to solve my problems. Well, nobody is saying it ain’t Parkinson’s, but the ideas for treating the symptoms and improving my daily quality of life vary. A number of things get tried, and if any change occurs it is hard to say afterwards what exactly caused it.

As I said two weeks ago, I’ve been worried about my cognitive skills (and still am), but unsure whether my slow descent into a forgetful multi-napper is caused by Parkinson’s, by serious sleep deprivation, by side effects of my medication, or by some as yet undiscovered issues. When I saw the neurologist a few days ago she was surprised that I was functioning so much worse than at my last visit and agreed something must be done. Insomnia and disturbed sleep are quite common in Parkinson’s, and since I am lucky enough to be treated by one of the national PD centers, they have a resident REM sleep expert whom the neurologist will consult as to what sleeping pills might best avoid the ultra-vivid dreams and sleep-walking episodes that I have been getting from all the other meds I have tried so far. Fingers crossed! The life I have been leading the last few weeks – unable to stay awake for more than half an hour at a time, attention span of a concussed lemming, ridiculously dependent on my poor wife, gobbling down pills by the fistful – is just not acceptable.

And another thing: we’ve had a bit of a heat wave (in my present mood, I blame the doctors) which finally appears to have broken today – and just as well, since I have been at real risk of running out of clean laundry. I’m not sure about this, but it seems like my internal temperature gauge may be faulty. I get extravagantly warm and sweaty over 95% of my body, but at the same time have some weird chilly spots, such as cold knees (silly) and cold back of the neck (more unpleasant). Marie confirms that my skin feels a bit cooler in these places. So on the one hand I sweat through one T-shirt after another and have to take frequent showers – somewhat problematic because it takes me so frustratingly long to get in and out of my clothes that by the time I’ve got dried off and dressed again, it is time for my next nap. And on the other hand I am constantly having to warm up my bag of cherry pips to apply heat to my cold bits. There really are days when I think my body is just out to get me.