Bingo

MARIE: We went to a rather brilliant event earlier this week on non-motor symptoms (NMS) of PD. First, a scientist specialized in brain chemistry talked about how Parkinson’s affects the brain and how that in turn affects all sorts of different physical systems, and afterwards a neurologist specializing in PD explained how practicing neurologists treat the various NMS.

Jon and I have read quite a lot about PD so there wasn’t a great deal that was brand new to us, but there were lots of interesting details and ideas. One striking point is that NMS are often overlooked during neurological appointments, and that neurologists generally believe their patients are much less affected by these symptoms than the patients themselves think. Another point, which was also made at the Glasgow conference last year, is that NMS tend to affect the quality of life more than the motor symptoms do.

At the end of the afternoon, we got to take home a booklet on NMS, originally prepared by the European PD Association (which you can download for free). Good stuff in there too, but also one point that raised an eyebrow or two with us: that “new research shows that up to 90% of people with Parkinson’s have at least one non-motor symptom, and about 10% have up to five non-motor symptoms”. Either that is a case of serious under-reporting, or Jon has been spectacularly unlucky, because he certainly has more than five NMS.

From the list of about 30 recognised NMS of PD, he has (and is being actively treated for) neurogenic pain, apathy, REM sleep disorder with vivid dreams, and erectile dysfunction. In addition, he has several symptoms that are not currently being treated with prescription drugs: anosmia (reduced sense of smell), pins and needles in the legs, and a tendency towards constipation – plus Jon is concerned about signs of dysphagia (trouble swallowing) and I am concerned about his difficulties with concentration and attention.

So that’s seven definite NMS and possibly two more on the way for Jon – or, as he would say, he’s won the symptoms bingo by a mile. Or has he? We’ve met very few Parkies who sleep normally, and not many whose sense of smell is unaffected. Likewise, when you take the trouble to ask people directly about specific symptoms rather than just asking how they are in general, you often hear about poor digestion and mood issues. So I reckon Jon’s a bit unlucky with his many NMS, but not that unusual.

It’s only in the last decade or so that neurologists have started to take NMS seriously. My sister, who worked as a nurse on a neurology ward some 10 or 15 years ago, still remembers the important meeting when the neurologists called together all the staff to reveal their great new discovery that Parkies also have NMS. The nurses, of course, were thoroughly underwhelmed by this revelation as they had known about NMS for ever simply from spending time with their patients. It’s good to know that neurologists are now finally getting on board, but it will still be up to each Parky and each carer to stay informed, bring up any troublesome NMS, and insist that they are treated just as seriously as the motor symptoms.

I had a dream

JON (with apologies to Dr King and Wobbly Williams…): One of the better aspects of having Parkinson’s is that the drugs are fairly effective. Okay, I’ll never be an Olympic athlete, but if I take my 26 or so pills per day (yes, I rattle when I walk) then I am fairly functional most of the time.

At bedtime, I take a couple of Rivotril which work both as muscle relaxants against my leg cramps and, probably more importantly, are pretty effective against my REM sleep disorder. You may recall this from posts past, but to recap: during REM sleep, “normal” people’s brains switch off their bodies to only the eyes move when you dream – hence the name Rapid Eye Movement (REM) sleep. This switching off doesn’t always work if you have Parkinson’s.

What you get then is vivid dreams that you act out, with much loud talking, thrashing about in bed, and possibly sleep walking. I did all of this before I got on Rivotril. The dreams all followed a similar pattern, where I was protecting someone or something from a serious threat. Thus, I have been Obama’s body guard, have performed life saving surgery and been engaged in child protection. All important and rather stressful stuff, particularly in the middle of the night.

At least I have never attacked Marie in my sleep, though it is apparently fairly common for the REM sleep disorderly to have a go at their bed partners. On the other hand, always keen to take the path less traveled by, I incorporated extreme bed wetting into my routine – not of the incontinent variety, mind you, but where I would get out of bed, carefully position myself and then treat the mattress as a urinal. The wet would eventually wake me and I would then slink off and wake Marie so she could deal with the mess. Not a happy time for either of us.

However, this is all a few years back (it’s taken a while to get ready to talk about it). I still occasionally get vivid dreams, but instead of acting them out I now wake up, go for a wee (in the right place) and then back to my own bed – which is mine alone as I twitch and snore and need the full width of the double bed to turn over at night, so sharing isn’t really a sane option any more. Last night was a bit different, though, in that instead of waking up properly I went into Marie’s bedroom. And the conversation went as follows:

Jon: We have to talk.
Marie: What about?
Jon: Don’t be alarmed, but I really think we have to let the slaves go
Marie: What slaves?

It was only at this point that I woke and realized I’d been dreaming. Since there seemed very little point in continuing the conversation, I just went back to bed (though I did check under the bed and can confidently state that our house is entirely slave free).

A complicated guy

MARIE: Monday was a big day for us: Jon’s first visit to the neurologist in the morning, and a talk by a physiotherapist at our local Parkinson’s Disease association in the evening.

Jon had asked to be referred to Bispebjerg hospital as that is one of two centres in Denmark specializing in PD and we think Jon’s PD is a bit special. Unlike in Holland, Jon got a grown-up neurologist, and like in Holland he got a very thorough examination – we were there almost an hour and half and came away feeling that the neurologist had really taken her time and made sure she understood Jon’s case properly before making any recommendations. Very reassuring.

The upshot of it is that Jon does indeed present a somewhat complicated picture. He takes a lot of drugs in the mornings but still suffers from PD symptoms. He takes much less of the drugs in the afternoon but still ends up with side effects. Go figure! There’s also his REM sleep disorder, the apathy and off-label use of Ritalin, his dopamine agonist intolerance, and retirement from work very soon after diagnosis. All in all, not your garden variety case. So Jon is now being referred for a SPECT scan and for examination “upstairs” at the so-called day hospital which sounds rather like the excellent Dutch ParkNet centre: a place where several specialists come together to make a very thorough examination of the patient, possibly over several days of observing fluctuations in function and drug efficiency. Of course, Jon won’t actually get to go until after the summer holidays, but it’s good to be in the system at last.

The neurologist was surprised that all Jon’s L-dopa comes as quick-release tablets which is apparently very unusual and could possibly be the cause of (some of) his difficulties. He is to try exchanging a few of the quick-release tablets for the standard type and then conferring with the PD nurse over any further changes. Sounds sensible to us, and today is the first day on the new regime.

However, there’s been a worrisome development with Jon repeatedly either forgetting to take his drugs at all or taking the wrong dose. This has happened at least half a dozen times over the last few weeks. The trouble seems to be that when a drug dose is due, he’s at a low level not just physically but also cognitively. He’s already got a drug alarm on his mobile phone and a pill box with the days doses measured out and the timings written on, but this hasn’t helped. Neither of us has been able to come up with any solution other than that I take responsibility for his drugs from now on. Not really a happy outcome, but better than the diseased misery that ensues within an hour of a missed dose.

On the upside, the physio talk was excellent, very well attended, and, as it happens, organized by yours truly. Of course the recommendation was for taking lots of exercise which is bound to cause Jon some grief over the next weeks until I give up on him again, but it also got him chatting to several of the other members. A social life in the making?