Carpe diem

MARIE: As we’ve said, with the duodopa pump comes better symptom control, and with that comes a greater freedom and eagerness to participate in life. And boy, do we participate. Although Jon’s PD is better controlled now and he has almost gotten rid of the debilitating OFF states, Parkinson’s continues to nag at us to make the most of now, because you never know what’s round the corner. Could be more good, but could equally well be another downwards slide, new symptoms, drug intolerance, whatever. So we are seizing the day and carping the diem.

First, of course, was the trip to the UK that I told you about in the last post. Then last week we had a visit from two UK friends with Parkinson’s – enormously enjoyable for Jon as he turned the best room in the house into a huge electronics workshop for the duration. Also much talking, walking and eating. Sightseeing not so much, as it’s no mean feat to get three Parkies to feel up to an excursion at the same time. On the other hand, that was perhaps also the joy of it: that there was no need to pretend or to push oneself as everyone except me was in the same boat.

Next week we get a long visit from Jon’s oldest friend, and I shall take the opportunity to nip out for a few days. I’ve asked for the home nurse to come and help with pump matters morning and evening, but in between the two of them will be on their own. I think they can do it, and that Jon is eager for the independence of a few days without my constant presence. We’ll let you know how that goes.

After that comes a short visit from another foreign friend, a two-week period of staggered visits from the family to celebrate Jon’s big birthday, and then we’re off to a pump users’ meeting in a different part of the country so will take the opportunity to make a small holiday of it. Then my parents come down for the soon-to-be traditional month of hard gardening labour, we must organize a visit from our good Dutch friends, we’ve got another two domestic holidays booked and are planning another UK trip, there’ll be an invasion of nephews at some point, and also my equally big birthday later in the summer, and…and…and…

Looking at our schedule, I am torn between despairing at the amount of stuff we have planned – how on earth am I going to find the time to write the next book? – and on the other hand thinking that this is exactly the reason why I don’t go out to work: so Jon and I can squeeze every last drop of good out of life while there’s time. I may not go out to work, but I still struggle to find the right work-life balance.

 

On Jon’s part the issue is more straightforward. Yes, he has gotten rid of the horrible OFFs, but he still has unpleasant dips in his general state. These he can counteract by taking an extra dose (using what we call the ‘happy button’ on the pump), but the ideal time to take it is just before he needs it. That means he’ll have to learn to predict which activities will deplete his dopamine levels so he can act early and avoid even the smaller dips. He had quite a bad dip last week when he went out bowling with the Oak House guys. The fun of it carried him through until he had run utterly out of dopa, and it took him quite a while to get back in the saddle. But he’ll learn, we’ll learn, and meantime life is still a whole lot better than it was.

Travels with the pump

MARIE: We’ve just had a long weekend in the UK – partly to see Jon’s daughter’s new house (and family and friends, of course), and partly to test out traveling with the duodopa pump. We were both mildly apprehensive. Would we be believed by airport security when we told them that Jon now has a tiny metal part inside him and can no longer go through the scanner? Would they accept that we carried all Jon’s gel form medication in hand luggage? No way would we ever let drugs go in the suitcase, a delay or misdirection of luggage with drugs doesn’t bear thinking about. Would the drugs stay cool in their special thermal bag for the duration of the journey? And would the hotel be able to keep the drugs cool for us, yet allow easy access to fresh drugs in the morning?

I am so happy and relieved to say that the answer to every one of the questions was a clear YES. Apart from having to carry the thermal bag around – which would be quiet heavy for a long trip – travels with the pump are significantly easier than travels with pills. Going across time zones? No problem. We used to try and stretch or compress drug timings on travel days to fit both with time zones, long days, and urgent bursts of activity. Now, the meds are just constantly flowing, there’s no need to plan or discuss anything, Jon just presses the lovely extra-dose button, and off we go. Put the pump on in the morning, take it off at night, and don’t worry about a thing in between. Oh, the relief. It’s wonderful to know that we’ll be able to travel by air again without any anxiety.

Two more things helped make the trip a success. It was clear on our last trip to the UK that the whole business of travel and any lack of home comforts at the destination really wears Jon out, to the point where he hasn’t the energy to enjoy the purpose of the trip. So this time we broke it up. We flew over, but instead of getting the airport train and then waiting for a ride and then having a social situation, we simply checked into the airport hotel and stayed the first night there. We’ll definitely do that again, it’s now vastly better to have two unstressful travel days rather than one demanding one.

 

And the other thing that helped was that we swallowed all pride and asked the family for help with lifts and a really comfortable place to sleep. I have regularly suggested to other carers that they should ask for help from their families instead of waiting for people to guess at how they can help, but I’ve not been good at taking my own advice. I was really quite overwhelmed at the generous help and consideration we got on this trip, the trouble they were prepared to go to in order to give Jon the best basis for having a good time. Which he most certainly did, as did I. We’ll be back, as he’s taken to saying.

By the way, it was funny to note how un-embarrassed we have both become. This was the first time the family had a chance to see the pump and Jon’s extra orifice, so he prepared to do a little show-and-tell. I’m not sure if it was discretion or a slight squeamishness on the part of his audience, but that didn’t take long at all. I guess by now Jon and I are so used to the evidence and paraphernalia of disease that we don’t think of it as anything out of the ordinary. Maybe we need a little reality check.

 

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.

Good news and bad news

MARIE: We're back from hospital, now with the duodopa pump. It went well, on the whole. The specialist nurse is an absolute marvel, very knowledgeable and personable and magically available. Most of the others were kind and efficient, though rushed.

On the first day, Jon got a tube stuck up his nose, down his throat and into his stomach. That was, as promised, the nastiest part of the entire experience (especially since the procedure had to be repeated twice for technical reasons). That done, a few days were spent teaching us to work the buttons on the pump and fiddling with the dosages, which can be very finely tuned. There is a morning dose to get Jon started, a background dose throughout the day and evening, and an extra dose that can be taken as needed in anticipation or reaction to anything stressful or strenuous (such as having a shower or going shopping).

That settled, everything when quiet over the weekend, with surgery set for Monday morning. As lots of people were sent home or sent on for the weekend, I managed to get Jon moved to a window slot for an excellent 6th floor view of snowstorms over Copenhagen.

Surgery was to insert the PEG tube through which runs the inner tube delivering drugs direct into the duodenum, which is where L-dopa is absorbed. All went well and Jon was soon back in his room. He was fine a first, but when the local anesthetic wore off, it got pretty uncomfortable. So they gave him morphine for the pain and left a sleeping pill on his bedside table, just in case. The trouble was, he woke up about 3:30 am and took the sleeping pill - far too late, of course. So that first morning was quite scary. His blood pressure was ridiculously low so his legs simply gave way several times, and he talked the most complete nonsense. I was very glad to have both the specialist nurse and my sister, who is also a nurse, there to deal with the situation and assure me it was a passing problem. Indeed, after a very long nap, Jon was entirely himself again.

So after a few more days of pump training, now focused on maintenance and cleaning, Jon was discharged. We were perhaps a bit nervous the first day or two at home, but now begin to feel really quite comfortable about the workings and effects of the pump. It is definitely a relief to just have to handle it mornings and evenings (it comes off at night) instead of having to deal with pills every two hours. And although the dosages may need to be adjusted slightly, the symptom relief is clearly very much better and especially very much more reliable than what Jon got from the pills.

So that's the good news. The bad news is that sorting out the biggest problem, i.e. the physical symptoms of Parkinson's, allows the second-biggest problem, the cognitive symptoms, to be seen more clearly. They've been a big concern for me for some time, and I believe Jon is now getting an inkling of the extent of his impairment. That must be frightening, frustrating, infuriating, intolerable. And what is he to do with those emotions, where is he to direct them? My way, is the answer.

He's been really quite unpleasant to me recently (but fortunately not to anyone else). It's been mostly verbal and mostly of a passive-aggressive nature, but earlier today he actually shook his fist in my face as if to punch me. I didn't think he actually would, but it’s an escalation of frustration and the inability to express it which could conceivably in time lead to worse.

What with the pre-treatment stress, the ten days in hospital and now the holidays coming up, we have spent far to much time grating on each other. I hope that a bit of physical distance in the new year will put us on a more even keel. To that end, I have arranged to borrow an office nearby two days a week for a writing project. With the three days Jon is out at the Oak House or with his "butler" that means we'll get several hours apart every weekday. I hope that's enough.

PS: Jon has seen this post and accepted that I upload it, but does not want to comment.