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.