Bionic man

JON: As you know, I’ve been considering getting a Duodopa pump. I was initially slightly nervous about the surgery etc., but after much research I am now looking forward to getting it fitted. I told the neurologist so earlier this week, and she has set the ball rolling with departmental patient review meetings, pre-hospitalization tests, counseling from a specialist nurse, and much else besides. Marie asked how long the process would be and got the beautifully imprecise response that “this could happen quite quickly, really” – which we take to mean that with luck I’ll just about get it done this side of Xmas.

There is a saying that if it looks too good to be true, then it probably is. The pump certainly looks good from a symptom relief perspective, but there are numerous practical snags with the device: the entry point of the drug delivery tube into my insides must be kept meticulously clean, the drugs must be kept refrigerated at all times and have limited shelf life, the external unit I’ll have to carry around weighs about a pound, maintenance of the PEG tube sounds a bit complicated, the batteries need to be regularly changed, and much else besides – but comparing the before and after, there is no doubt in my mind that life will be better with the pump. All this was confirmed by the pumpees we met at their annual bash last month.

Rather than me trying to describe the pump, I’ll give you links to a pair of YouTube clips: The first video shows the effects of Parkinson’s and the efficacy of the standard treatment. In the second video we see the effects of using the Duodopa pump, and they are impressive. One of the patients agrees to switch off his pump, so that we can watch him crumble from a perfectly normal person into a frozen wreck unable to control his fingers sufficiently to restart his pump.

I’m like that some mornings. I want the pump to make that frozen, miserable me GO AWAY.

Balancing acts

MARIE: Did I mention that I’ve been going to see a psychologist? There was a small problem with anger management…

I think Jon and I did pretty well with the PD diagnosis, we ‘passed the test’ and found a reasonable way to live it. The dementia is harder. The way the symptoms started, baffling, sporadic, unconnected – well, I just took that as Jon being difficult and negative and unengaged. So I’d get upset. And because I was terrified that there was no improvement in sight, my upset had to be forceful enough to keep the lid on a maelstrom of fear and loneliness. My anger was explosive, volcanic, uncontrollable – and deeply unpleasant for both of us.

The dementia diagnosis made sense of much that had been confusing and frustrating, and made it clear that my anger needed to be dealt with ASAP. It’s unpleasant, though possibly understandable, to shriek like a banshee at your husband for yet again having forgotten what he’s just promised to do, but it’s horrendous and destructive to savage a man with dementia for his poor memory.

Something had to be done. Just getting the referral and making the appointment was a relief as we both acknowledged that there was something pathological both in the object of my anger and in the expression of it.

It is amazing how few appointments it has taken to restore equilibrium. I’ve been six times and expect the seventh to be my last. I’ve learnt to identify the ‘dysfunctional thoughts’ that trigger my anger, to take a step back and observe them in the cooler light of common sense. I’ve learnt that I don’t have to hide my fear and sadness behind a mask of anger, but can open up to those close to me without breaking (them or me). And I’ve learnt to carve out a space for myself away from all thoughts of disease (this revolves around my garden and a beekeeping course – whatever floats my broccoli).

I have also read and re-read an excellent and very practical book of advice on caring for dementia in a way that keeps both parties happy and content – I highly recommend Contented Dementia by Oliver James. It’s focus is on Alzheimer’s, but the advice also applies to other dementias.

Calm has again descended on our household. Not some otherworldly, anesthesized calm, but a normal, everyday calm that enables me to be mildly miffed at Jon in a perfectly normal, unthreatening way and that leaves him feeling, I suspect, slightly put-upon rather than cowering in a corner.

Not everyone with PD gets dementia, though it does happen to many in the late stages of disease – we were just particularly unfortunate that Jon got it so early on. At least now we finally seem to be finding the same kind of balance with dementia that we managed to find with Parkinson’s. Not a moment too soon.

Numbers

JON: This week it was my birthday – for the 59th time! The only bright spark is that at least it’s not 69. In fact, a recent article in the New Scientist about the popularity of various numbers said 42 was most people’s favourite number (presumably courtesy of The Hitchhiker’s Guide to the Galaxy where ‘42’ features as the answer to the meaning of life, the universe and everything). ‘69’ came second favourite, probably because the rude connotations appeal to small boys of all ages and genders.

I’ve been working for days on turning my 59th birthday into a good rude joke involving the number 69, but I’m stuck. In fact, I used to enjoy swapping jokes and banter with people, and I think I was funny (at least to highly intelligent native speakers of English, and occasionally to Marie). However, I think I have become unable to tell jokes properly. I find myself delivering the punch line first, miss out essential parts of the joke, rarely manage quick banter – and I just don’t think I’m that funny anymore.

Why? I suspect two factors: progression of the PDD, and / or the lack of an audience. The people I hang with at the Oak House may be incredibly funny, but how would I know without speaking Danish? But I doubt it, they generally seem like a fairly dull bunch. Places like this are known as ‘Gods waiting rooms’, i.e. places where we go and wait to die (another potential joke lurks in a mispronouncing ‘to-die’ to sound like ‘today’ – ho ho ho, aren’t I the witty one?).

I think I’m beginning to settle in at the Oak House, though. I’ve formed a plan together with one of the regulars to produce some artwork to decorate a large wall in the kitchen with a new molten wax technique (well, new to me, anyway). I think I’ll enjoy that.

I have also been made a guide to the Oak House for a potential new ‘inmate’. As I may have mentioned, Marie attends every meeting relating to Parkinson’s or dementia in a 100 km radius. At one, she met a nice couple from the next village. The wife is ‘normal’, the husband has early-onset dementia. Somehow I’ve agreed baby-sit at his first visit to the Oak House, show him around and make him feel comfortable. A bonus is that he has lived for many years in Britain so is potentially someone easy for me to talk to.

He was inducted during our pre-Easter celebrations, a day starting with enormous pastries to celebrate my birthday, followed by an excessive lunch with beer and schnaps. At home waited the promise of a birthday dinner consisting of a HUGE steak, a small amount of salad, and as much apple crumble and custard as I could possibly eat.

I’m told many Parkies go off their food because all the drugs can give you nausea, but that has happily not happened to me (yet?). But I do regularly increase my intake of red meat by viciously biting my cheeks. PD has got to be at fault there somehow, though I’m not at all sure if anything can be done about it.

ON and OFF

JON: Since my last post, I’ve been soldering on – no, not a typo: I’ve actually done some soldering which has come out OK, or more than OK if I say so myself. Of course these things are binary, it either works or it doesn’t, and this time it worked at the first attempt. So my fine motor skills seem to be OK as do my cognitive skills (to me, at least…).

I’ve also done some painting and photography. I’m rather pleased with the photographs, less so with the painting. But I’ve only done a short course on painting this winter and my work compared fairly favourably with that of the other students. Actually, my paintings weren’t great by any measure, but I have the excuse that while each lesson ran from 6:30 pm to 9:00 pm, my medication effect rarely lasted much beyond 8:00 pm. The photography, however, is a long-standing interest, so I feel more competent with that. Attached are a couple of my pictures – it may not be high art, but I like them.

Admittedly, though, the last week or so has been on the unpleasant side. I take my drugs at the correct time, but some times they don’t work. With increasing frequency they fail to take effect at all and I’m reduced to shuffling along like an old man (OK, maybe I am an old man). Thinking becomes hard, muscles become weak, I ache and find it hard to remember that I will feel better soon.

My brain let my body down twice last week. On Monday morning I was fine when I got on the bus to the Oak House day centre, but (expletive of you choice here) felt utterly shattered when we arrived. I took an extra dose of L-dopa, slept for over an hour, and eventually started to feel better.

On Friday afternoon, things were reversed. I had a good day at the Oak House and got on the bus to go home feeling fine, but after being bumped around for what seemed like several hours but was in fact less than 20 minutes, I almost had to crawl to get to the front door. Once inside, I just flopped, took some quick release L-dopa, went straight to bed and just lay there waiting for the pills to kick in – repeating my little mantra of ‘it will get better’ and as always it did get better. But the waiting is the worst.

It turns out that it’s not uncommon for the effect of the Parkinson’s drugs to become erratic. So now I’ve been offered to have a duodopa pump fitted that will deliver the L-dopa more smoothly. It seems to have some pros and cons. On the plus side it allows a fine control of the L-dopa, but on the minus side as far as I can tell a PEG tube would be inserted through my skin and directly into my stomach and left there. I’ll presumably get a switch, or possibly a knob, to control the dosage. Marie seems quite taken with the concept of gaining an extra appendage, though the maintenance is a slight worry.

We’re going to an information day with lots of people who have lived with the pump for years, so I’ll know much more before it’s decision time. Watch this space.

Picking a fight?

MARIE: Have I mentioned that I’ve had a sore shoulder for a few months? It seems more than a little peevish to talk about my minor inconvenience in view of Jon’s rather larger troubles. But as I have discovered that one stems directly from the other, I’ve given myself a license to whine.

My right shoulder has been bothering me since summer, really, a nuisance when I wanted to reach, push or carry, and with reduced range of movement – to the point where Jon not so grudgingly had to take on responsibility for bra removal each night. The poor man, he has to do everything!

Our GP eventually sent me to an orthopedic surgeon who diagnosed a ‘frozen’ right shoulder and gave me a remarkably unpleasant injection of steroids to deal with the semi-permanent infection in the joint, then directed me to the physiotherapist for follow-up. As the right shoulder slowly got better, the left one felt neglected and started to act up, so had to be given the same treatment. Both are now on the mend, though I expect to get to know my physiotherapist considerably better before I’m back to normal.

So what’s that got to do with Parkinson’s? Well, the surgeon and the physio agree that my troubles almost certainly stem from helping Jon – the firm hand under his arm when we’re out walking, pulling and pushing when he needs a hand to get up, and standing in awkward positions when helping him dress and undress. It’s also quite likely that the mental stress of dealing with the dementia diagnosis isn’t helping – I have a history of stress settling in my shoulders.

Spouses of chronically ill people are generally prone to suffer from more health problems than those with well spouses. That’s related to stress (both physical and mental) and to a tendency to forget to look after yourself properly because you’re too busy looking after someone else. In my case the mental stress of dealing with the new diagnosis is unavoidable BUT I feel that the physical stresses could have been easily avoided if someone had bothered to teach me how to help Jon without hurting myself.

As you know, the council now employs me as “home care help” to look after Jon (don’t get too excited, this is in lieu of the carer’s allowance you have in the UK and is about as generous). However, the contract comes with no training whatsoever. All the “professional” home care staff go through careful training, particularly about helping with transfers (i.e. shifting position, such as standing up, sitting down, turning over in bed) because it’s that’s a high-risk area with such work.

Does that make my shoulder an occupational injury, and my employer culpable for not training me in safe working methods? Not this time, perhaps, because the shoulder problem started before my contract, but maybe next time? If I’m up to it, I might make a glorious fuss if it happens again. One needs to pick one’s fights carefully, and that strikes me as one with potential mileage way beyond myself and, indeed, Parkinson’s.