New best friends

MARIE: Two weeks ago I wrote about the difficulties of teaching Jon to handle the duodopa pump himself, leaving me with more maintenance than I had counted on. Four weeks ago I wrote about how his frustrations at the diseases sometimes turn to aggression directed at me. I am very happy to tell you that I now have two new helpers who promise to bring relief to one issue each.

Firstly, the frustration. I know – I’ve read, I’ve been told, I can work out for myself – that someone with cognitive impairment is probably incapable of changing his behaviour. So, to stop Jon becoming frustrated, we have to find his “triggers” and teach me how to avoid them or how to deflect and defuse potentially problematic situations. To that end, I have talk to a very capable and knowledgeable woman whose job title I don’t know how to translate – something like neuro-behavioural-development consultant. What she does is go out and talk to the carers for people with problematic dementias to help us learn to act and react in more appropriate ways. All the relevant people have said this sounds like a good idea in our case, so now I’m just waiting for the paperwork to go through. I’m hoping for a long and fruitful relationship.

Secondly, pump maintenance. A further two weeks in and we’re essentially no further forward with teaching Jon the pump. I don’t have a problem with getting up to fit the pump every morning at 6:30. I don’t mind helping Jon get it on and off when he has a shower – and on those occasional mornings when I have to leave early, it won’t kill him to skip the shower. But I was beginning to feel very constrained by the need to be home every evening no later than 10pm to take the pump off. This was mostly in my head, because I’m actually rarely out till late. We’re talking maybe half a dozen times a year, when I’m invited to something that Jon prefers not to attend but that I want to attend until the very end.

What triggered my frustration was an invitation to the traditional January party of a group of wonderful women I’ve known since university. I had offered to bring the dessert, but now I was realizing that I’d probably have to leave before it was even served in order to set out on the hour-long drive home to my pump duties.

As luck would have it, that same morning we got a visit from the home nurse who comes once a week to inspect Jon’s stomach tube. I mentioned my frustration. She told me a nurse could come to sort out the pump if we liked. I asked how long in advance we’d have to book such a service. She said as early as possible to help with their planning, but “if you’re out and suddenly realize you’ll be late, or if you’re stuck in traffic or something, just ring us and we’ll pop round to sort it out”. Isn’t that just the most amazing service? I was so happy and relieved I wept!

I think we’ll use the night nurse about as often as we use the disabled parking badge, which is to say roughly once in a blue moon. But it makes the most enormous difference to know that the option is there the moment we really do need it. I feel like I have my freedom back, and I think Jon is pretty content not to have to feel guilty about dragging me away from my occasional pleasures in the big city.

Pumping

MARIE: Today is the one month anniversary of Jon getting the duodopa pump. Long enough to review the effect on Jon’s PD and on our daily lives.

On symptom control, Jon still got some dyskinesias, but nowhere near as bad as before, and certainly not to the point where it bothers him. Enough to still draw a bit of attention, probably, but we’re kind of used to that now. However, the most important point is that when I asked him if he thought the pump was worth the effort, Jon said unequivocally yes, he would crawl over broken glass for the relief it gives him from OFFs.

He used to struggle horribly in the morning, when he’d often have to wait more than an hour for the pills to start working enough that he could get out of bed. Now, he’s frequently up less than half an hour after I’ve started the pump. And with the occasional extra dose (he can take up to 6 a day), the day passes with the occasional little dip, but not a single real OFF. I don’t think any of us without Parkinson’s can quite imagine how horrible an OFF is, but I can see how much it means to Jon to be rid of them.

On the practical side, it’s wonderful to leave the tyranny of pills behind us. Admittedly, there’s a bit more to the maintenance than I expected. I knew we’d have to manage the pump, but (like an idiot) hadn’t counted on the cleaning and anointing of the entry point. It’s kind of gross, but we’re learning to deal with it.

Teaching Jon to manage the pump himself is a bit more uphill. I don’t think he’ll ever be able to set it up and connect it in the mornings because that’s when he’s at his lowest point functionally. Right now, we’re working on him getting comfortable enough with the procedure that he can disconnect it and reconnect it when he has his shower, and perhaps also look after the entry point himself. We haven’t decided yet about responsibility for the evening procedure when his tubes need flushing, so for the time being I’m handling that. We’ll take it one step at a time and see how far we get.

The last issue is ‘wearability’, and I have to admit I’m a bit disappointed with the options. The trouble is that the unit is quite large and heavy, must be easily accessible, and is attached to Jon by about 40 centimetres of plastic tubing with a large connector in the middle. Together with the pump you get the gear to carry it around your neck like a camera or as a shoulder bag, or as a bum bag, or in a shoulder holster like a gun, or in the inside pocket of a vest (the over-garment), or in side pickets of a vest (the under-garment). However, all the gear is made from somewhat unattractive materials, except the black leather shoulder holster, which is sadly the most uncomfortable to wear. We’ll be seeing a lot of other pump users at the annual meeting in April, and I’ll be very interested to see how they’ve balanced discretion with accessibility and comfort.