Hello, it’s Marie writing again. Is that because Jon is too busy to blog this week? Well, that’s exactly what he has agreed to let me talk about.
Jon has been on sick leave since early August, so getting on for 5 months. By law, he has been seen about every six weeks by a doctor appointed by his employer. This is Holland, though, so the doctor is not just there to catch out malingerers but also to assess whether people with long-term conditions, such as Jon, can somehow be eased back into some level of structured work. So far, the doctor has deemed at each visit that Jon is totally unfit for work and has apparently not felt there was any point in the employer making any special concessions since, presumably, this would be unlikely to have much effect.
At the same time, both Jon and I and the neurologist believe that Jon is now just about as well as he is ever going to be, physically and cognitively. He struggles with stiffness and difficulty bending and twisting (he said in an early blog that he now eats like a hobbit, but he sure moves more like an Ent), he tires easily both physically and mentally, and he still has some issues with short-term memory – though it is vastly better than on the previous PD meds.
So does that mean Jon will in fact never work again? We suspect that may in fact be the case. Whether or not you can continue in normal paid employment with Parkinson’s obviously depends to some extent on what your job is. So Jon has been able to continue working longer as a research scientist than he would have managed had he been a dentist in need of fine motor skills. On the other hand, with a less cognitively demanding job better suited to part-time working he might still have been able to carry on for some time longer. Hard to say, and I guess you just have to go with the hand you are dealt.
Let’s leave the mildly terrifying issue of what that means for our finances to one side – whatever happens, we will still be vastly better off than most people on the globe, so no whining (yet). Much more importantly right now is the question of what Jon is in fact supposed to do with himself and his time.
What does he want to do, what is he able to do, how much can he commit to doing? He has said in earlier blogs that there are many interesting and rewarding things he would like to do, and that he probably could do now although at a much reduced pace. He has several ideas for books he would like to write alone or with old colleagues, he continues to act as peer reviewer for several scientific journals, and he is kind of keen on the idea of taking up artsy photography, and he likes the idea of frequent holidays to interesting places. In the good old days before Parkinson’s, Jon was a complete monomaniac, totally obsessed with his work, so in a way I welcome these slightly broader interests.
BUT: what does Jon actually get done, then? Very little indeed, as far as I can see. And it’s hard, you know. Anyone who has had an extended period of unemployment knows how time just crumbles away to no purpose when you have too much of it. And even when you have something you want to do, a fairly clear goal, having too much time in which to achieve it – indeed, having no deadlines except those you set for yourself, and no colleagues or customers waiting for you to finish the task – can mean that nothing much gets achieved at all.
When you have all the time in the world, everything can wait until tomorrow, and nothing much matters anyway. So you end up sleeping late, wandering around the house in your dressing gown until midday, filling empty hours with pointless day-time TV. I know, I have been there, and now Jon is there. It’s not a happy, satisfying place to be – a break is only a break when it is a break from something; alone it cannot fill your life with any degree of satisfaction. And I can see that it is harder for Jon to find the motivation to dig himself out of this hole than it might be for most, because whatever task or hobby he takes on, he cannot be sure that the disease will allow him to continue or to finish it.
So what can one do? Well, we talk (some) and I try not to be too moralistic and prescriptive. We have also talked to our psychologist about it, and I should think we will again – he does ask some really incisive questions that we both spend quite some time mulling over. One area we both have to work on is sharing household responsibilities, partly as a way of giving some structure and purpose to Jon’s days. And now one of Jon’s co-authors on the book he has not been writing has set them both the challenge of finishing a draft chapter each by next weekend. Maybe that will kick-start something.
I just so wish that Jon could get really excited about something, the way he used to do. I miss the Jon who was so deeply engaged in whatever he was doing that the outside world (and me with it) just disappeared into insignificance. I don’t suppose that Jon exists anymore, but some approximation would be so very good
30 December 2008
22 December 2008
What we did on holiday
I have no intention of showing you all (or indeed any) of our 2000+ slides or of going into great detail, so suffice it to say we went on a guided tour through Cambodia, Vietnam and Singapore, and we had a great time.
We booked the trip earlier in the year when we were pretty optimistic about my health, and had some worrying months while I went downhill, so my improvement on the new PD meds came in the nick of time. In fact, having the new sleeping pills meant that I suffered much less jet lag than others in our group because I could control my sleep. And bliss, oh bliss, I was (and still am) sleeping normally – or what passes for normal when you have Parkinson’s and jerk about when you dream.
Going as part of a group (of 12) meant that I didn’t feel guilty about opting out of a few activities as that would not leave Marie with no-one to share with. So, instead of climbing about temples or crawling through Vietcong tunnels, I could take a nap in the bus and wait for the others (including an overweight and hyper-energetic 75-year-old grandmother) to get back. It also helped that everyone we travelled with, both tourists and guides, were really helpful and understanding. My bags were carried for me, I had first choice of seats, and was expertly handed in and out of numerous boats.
Another thing is that one of the symptoms that has had me most worried was my sudden aversion to coffee starting about 18 months ago. I used to drink gallons of the stuff, but suddenly it had a powerful acrid/burning smell. But I noted to my great delight that Vietnamese coffee smelt like coffee used to do. The difference, I think, is that the Viet coffee is sweetened with condensed milk (8% fat) and I suspect the high fat content absorbs whatever unpleasant component it is that I have become sensitized to. Oh, yes, and after very thorough testing I can also confirm that I now appear to tolerate beer really rather well again…
The last two days of the trip were interesting. Marie sprained her ankle getting onto the bus from the airport to the hotel. It looked painful and she said it was painful, but after sleeping with her foot in a bag of ice and borrowing a crutch from the concierge she was keen to do the night safari at Singapore zoo. I found it exhausting jogging to keep up with the woman. But seriously, you should have seen us when we first arrived at the hotel: she hobbled painfully straight to bed whence she directed me to ring for ice and fetch towels and pillows and dig out the painkillers and get the door and put the kettle on – and I performed a perfect pantomime of rushing around in slow motion. But it was good to be the one doing for once, rather than being done for.
So was the trip worth it? Yes, definitely – we got to spend a lot of time together in a stress-free environment, we got to feel immensely lucky and privileged compared to the locals, and we got to see and do and eat a lot of new and interesting stuff.
Back home, I have noticed that I am not doing so well on memory issues. Other people my age joke about senior moments, like when I forgot the name of the Prime Minister. Embarrassing at least, somewhat worrying at worst – I retrieved the name after 10-15 seconds, but they were a long few seconds. With Parkinson's, you know there’s a greater risk of dementia, so it’s harder to laugh off the lapses in memory. Do these lapses affect my ability to work? Well, I had another of my regular assessments with the work doctor who claimed to detect a slight improvement since he last saw me two months ago. He may be right, although I’m tempted to put my apparent improvement down to the mild sun tan I picked up whilst away. Anyhow, I’m still assessed as 0% fit for work, it just may be a slightly smaller zero this time.
We booked the trip earlier in the year when we were pretty optimistic about my health, and had some worrying months while I went downhill, so my improvement on the new PD meds came in the nick of time. In fact, having the new sleeping pills meant that I suffered much less jet lag than others in our group because I could control my sleep. And bliss, oh bliss, I was (and still am) sleeping normally – or what passes for normal when you have Parkinson’s and jerk about when you dream.
Going as part of a group (of 12) meant that I didn’t feel guilty about opting out of a few activities as that would not leave Marie with no-one to share with. So, instead of climbing about temples or crawling through Vietcong tunnels, I could take a nap in the bus and wait for the others (including an overweight and hyper-energetic 75-year-old grandmother) to get back. It also helped that everyone we travelled with, both tourists and guides, were really helpful and understanding. My bags were carried for me, I had first choice of seats, and was expertly handed in and out of numerous boats.
Another thing is that one of the symptoms that has had me most worried was my sudden aversion to coffee starting about 18 months ago. I used to drink gallons of the stuff, but suddenly it had a powerful acrid/burning smell. But I noted to my great delight that Vietnamese coffee smelt like coffee used to do. The difference, I think, is that the Viet coffee is sweetened with condensed milk (8% fat) and I suspect the high fat content absorbs whatever unpleasant component it is that I have become sensitized to. Oh, yes, and after very thorough testing I can also confirm that I now appear to tolerate beer really rather well again…
The last two days of the trip were interesting. Marie sprained her ankle getting onto the bus from the airport to the hotel. It looked painful and she said it was painful, but after sleeping with her foot in a bag of ice and borrowing a crutch from the concierge she was keen to do the night safari at Singapore zoo. I found it exhausting jogging to keep up with the woman. But seriously, you should have seen us when we first arrived at the hotel: she hobbled painfully straight to bed whence she directed me to ring for ice and fetch towels and pillows and dig out the painkillers and get the door and put the kettle on – and I performed a perfect pantomime of rushing around in slow motion. But it was good to be the one doing for once, rather than being done for.
So was the trip worth it? Yes, definitely – we got to spend a lot of time together in a stress-free environment, we got to feel immensely lucky and privileged compared to the locals, and we got to see and do and eat a lot of new and interesting stuff.
Back home, I have noticed that I am not doing so well on memory issues. Other people my age joke about senior moments, like when I forgot the name of the Prime Minister. Embarrassing at least, somewhat worrying at worst – I retrieved the name after 10-15 seconds, but they were a long few seconds. With Parkinson's, you know there’s a greater risk of dementia, so it’s harder to laugh off the lapses in memory. Do these lapses affect my ability to work? Well, I had another of my regular assessments with the work doctor who claimed to detect a slight improvement since he last saw me two months ago. He may be right, although I’m tempted to put my apparent improvement down to the mild sun tan I picked up whilst away. Anyhow, I’m still assessed as 0% fit for work, it just may be a slightly smaller zero this time.
Subscribe to:
Posts (Atom)
