JON: Marie and I have had a bit of a row this week. It’s a pretty childish on both our parts but still miserable while it goes on.
The problem has two parts. The first part is that “we have a plan” for the processes and work involved in our up-coming house move. We have apparently discussed this at great length and depth. The second part is that I keep asking for details of the plan. Marie finds this very annoying as I keep asking about things that she claims we have already discussed to bits, and I can’t say I blame her.
However, rather than telling me that we have had the same conversation five times already and please (for god’s sake) will I pay attention this time – which would seem to me a reasonable strategy – what happens instead is that she starts to quiz me: “We’ve agreed this already, you know perfectly well what was decided, so you tell me the answer to your question”. Put under stress like this, my mind goes blank, my mouth dries up entirely and I may even start to shake. If she keeps pushing, I get angry and start to sulk. You don’t need to be a rocket (lettuce) scientist to predict that this doesn’t help.
We seem to be prone to this kind of problem where my memory causes grief. For example, I recently got the title of Marie’s book wrong, a small but emotionally significant error. And annoyingly I can remember a similar recent argument, but I can’t remember any of the details (and this is not a joke).
My psychologist has told me that this sort of thing is quite possibly not actually a memory issue but a question of not paying attention. The problem is that Parkinson’s makes it hard to multitask, so if I’ve been told something during a walk in the woods, I may not remember what was said as I was too focused on the task of walking. Which is of course annoying for Marie, who may feel that she talked to me at a time with few distractions as we were all alone in the woods.
Anyway, the latest row has passed and we are now friends again, just in time for me to bugger off to the UK tomorrow for a boys-only weekend. We used to be able to keep a row going for days, sometimes weeks, but (like erections) they just don’t seem to last as long these days.
16 September 2010
12 September 2010
Things to look forward to
JON: In my last posting I moaned about being OFF for far more of the day than I am prepared to put up with. Well, nothing's changed: my back hurts like buggery, various and varied bits of me feel as if they are in spasm, and if I ever find the incompetent git who designed this body – well, he’s not going to enjoy the meeting. Intelligent design? Ha, more like 5pm on a Friday … And it is raining again, not proper rain like we used to get when I were a lad, but this new fangled miserable drizzle that goes on for day after day after damp bloody day. Not that I want to appear negative in any way, because I do have a couple of things to look forward to.
First, I’m off to the UK next weekend to see some old, old friends who I’ve known since my school days (I would have said “since I was a small boy in short trousers”, but in fact my German mum made me a small boy in lederhosen …). Since we’re now all terribly middle-aged, I doubt there will be much debauchery, but I’m all geared up for drinking too much beer and talking bollocks.
And the week after that we’re going to the Parkinson’s congress in Glasgow. I’ll let Marie talk about that, she does cheerful so much better than me.
MARIE: In the course of our work lives, Jon and I have both attended numerous academic conferences – he to make presentations and build a network, me to sell books and build a business. We’ve both enjoyed this hugely, so when we heard of the World Parkinson’s Congress in Glasgow later this month, we were immediately interested.
It sounds pretty excellent, with four days packed with lectures, events, displays, games, posters – and full of people who really know about PD. An embarrassment of riches, really, and the difficulty is in choosing which bits to attend. We’re also hoping to meet others from the internet chat forum we frequent, I’ve promised to write a few articles for the Danish association’s magazine, and Jon is on a mission to take photos for a poster – plus we’ve signed up for every available optional extra, from the opening reception to the closing ‘brain game’ session.
Quite ambitious, and if Jon continues to feel as he does now, we’ll not manage everything. By luck and design, though, our hotel is very near the conference venue, so he can slink off for the occasional nap with or without me. It’ll be brilliant.
First, I’m off to the UK next weekend to see some old, old friends who I’ve known since my school days (I would have said “since I was a small boy in short trousers”, but in fact my German mum made me a small boy in lederhosen …). Since we’re now all terribly middle-aged, I doubt there will be much debauchery, but I’m all geared up for drinking too much beer and talking bollocks.And the week after that we’re going to the Parkinson’s congress in Glasgow. I’ll let Marie talk about that, she does cheerful so much better than me.
MARIE: In the course of our work lives, Jon and I have both attended numerous academic conferences – he to make presentations and build a network, me to sell books and build a business. We’ve both enjoyed this hugely, so when we heard of the World Parkinson’s Congress in Glasgow later this month, we were immediately interested.
It sounds pretty excellent, with four days packed with lectures, events, displays, games, posters – and full of people who really know about PD. An embarrassment of riches, really, and the difficulty is in choosing which bits to attend. We’re also hoping to meet others from the internet chat forum we frequent, I’ve promised to write a few articles for the Danish association’s magazine, and Jon is on a mission to take photos for a poster – plus we’ve signed up for every available optional extra, from the opening reception to the closing ‘brain game’ session.
Quite ambitious, and if Jon continues to feel as he does now, we’ll not manage everything. By luck and design, though, our hotel is very near the conference venue, so he can slink off for the occasional nap with or without me. It’ll be brilliant.
06 September 2010
Making the best of things
MARIE: I recently read a book (not in English) that purported to give advice and support for the chronically ill and those who care for them. I really tried to like this book despite its poor organization, but it fell down in the usual place: no, it does not give support to carers, it just instructs us on how to support those we care for. It shouldn’t come as much of a surprise to me, really, but it was still disappointing.
However, I did take one gem away from this book which made the hours spent reading it well worthwhile. It is the expression amor fati, which loosely translates as “love of fate” or “love your fate”. Wikipedia tells me this motto was coined by Nietsche who I suspect may have meant something like “just accept that life is cruel and ugly and that you can’t do a thing to change it”. But I have decided to understand it more as “embrace your circumstances rather than fighting them”.
It’s so easy to feel sorry for yourself and bitter at the restrictions PD brings to both the person with Parkinson’s and the carer, and I admit we both do that now and again – Jon perhaps more than me because not only is his glass always half empty, it also has a dead fly in it. Neither of us has ever asked “why me?” which seems to be a question that occupies people with some level of faith, but we have been upset that, not to put too fine a shine on it, shit happens and it happened to us (in the picture it happens very neatly indeed).
On the other hand, while the disease has unquestionably slammed shut a number of doors, it has also opened others that we had never even considered. For Jon, for instance, taking early retirement has made him a far more sociable person who stays in touch with old friends and colleagues on Facebook, visits his grandchildren with keen regularity and generally enjoys talking to people about things other than his work – a major change and improvement, I can tell you!
For myself, the disease has led me to start writing about PD – this blog, regular articles, and working on a few book manuscripts – which I greatly enjoy. And it seems there is a decent chance it will lead me away from my current job in an ailing industry (academic publishing) to new and more meaningful work on the carer project that I talked about a few posts back. At least, reactions have been positive all round from carers, health professionals and patient associations I have discussed my ideas with. Will I also be able to secure the funds to make the project possible? I don’t know, but I’m feeling really hopeful. Amor fati in action!
However, I did take one gem away from this book which made the hours spent reading it well worthwhile. It is the expression amor fati, which loosely translates as “love of fate” or “love your fate”. Wikipedia tells me this motto was coined by Nietsche who I suspect may have meant something like “just accept that life is cruel and ugly and that you can’t do a thing to change it”. But I have decided to understand it more as “embrace your circumstances rather than fighting them”.
It’s so easy to feel sorry for yourself and bitter at the restrictions PD brings to both the person with Parkinson’s and the carer, and I admit we both do that now and again – Jon perhaps more than me because not only is his glass always half empty, it also has a dead fly in it. Neither of us has ever asked “why me?” which seems to be a question that occupies people with some level of faith, but we have been upset that, not to put too fine a shine on it, shit happens and it happened to us (in the picture it happens very neatly indeed).On the other hand, while the disease has unquestionably slammed shut a number of doors, it has also opened others that we had never even considered. For Jon, for instance, taking early retirement has made him a far more sociable person who stays in touch with old friends and colleagues on Facebook, visits his grandchildren with keen regularity and generally enjoys talking to people about things other than his work – a major change and improvement, I can tell you!
For myself, the disease has led me to start writing about PD – this blog, regular articles, and working on a few book manuscripts – which I greatly enjoy. And it seems there is a decent chance it will lead me away from my current job in an ailing industry (academic publishing) to new and more meaningful work on the carer project that I talked about a few posts back. At least, reactions have been positive all round from carers, health professionals and patient associations I have discussed my ideas with. Will I also be able to secure the funds to make the project possible? I don’t know, but I’m feeling really hopeful. Amor fati in action!
29 August 2010
Panic on Dutch Street
JON: One of the minor irritations of being an expat is that I keep having to prove my identity to many and varied financial institutions all of whom require proof that I am me and that I live where I claim I do. They say this is to combat money laundering, which can apparently be prevented by the presentation of a utility bill. Annoyingly, different firms require different information: some want my passport, others are happy with a gas bill; some want originals, others will make do with a photocopy.
This week I had to go to the bank (again) to get a certified copy of my passport. I’ve done this several times before with no problem, but this time the clerk wanted to know why I needed the copy. I hadn’t expected this question so had no rehearsed script ready for this. Unfortunately, stress, surprises and snap decisions go very badly with Parkinson’s disease. So although I attempted to answer, my mouth just seized up and I simply could not get a word out. Fortunately Marie was with me and was able to “sort me out”, which basically involved getting the clerk to repeat himself and then attempting to make a dignified retreat. I don’t think anyone noticed (much).
Anyway, the following day we returned (same bank, different branch – I do have some pride left), but this time with the letter explaining why the foreign financial institution wanted the information. And of course the clerk in the second branch was perfectly happy to certify my passport, disdainfully waving away the letter that the first clerk had insisted on.
If you, first clerk, are reading this, you know who you are ... and just remember that you know where I live.
This week I had to go to the bank (again) to get a certified copy of my passport. I’ve done this several times before with no problem, but this time the clerk wanted to know why I needed the copy. I hadn’t expected this question so had no rehearsed script ready for this. Unfortunately, stress, surprises and snap decisions go very badly with Parkinson’s disease. So although I attempted to answer, my mouth just seized up and I simply could not get a word out. Fortunately Marie was with me and was able to “sort me out”, which basically involved getting the clerk to repeat himself and then attempting to make a dignified retreat. I don’t think anyone noticed (much).
Anyway, the following day we returned (same bank, different branch – I do have some pride left), but this time with the letter explaining why the foreign financial institution wanted the information. And of course the clerk in the second branch was perfectly happy to certify my passport, disdainfully waving away the letter that the first clerk had insisted on.
If you, first clerk, are reading this, you know who you are ... and just remember that you know where I live.
Here is the hole I hoped would open up to swallow me:
21 August 2010
Dysphagia
JON: I’m having a bit of a down-day today, and it doesn’t help that I’ve the time I’ve spent on the internet has been very fruitful. The thing is, sometimes ignorance is bliss and knowledge turns out to be quite uncomfortable (I should know, I’ve got 3 degrees). But I assume that if you are reading this blog, then you are not going to be fazed by a bit of new information.
I’ve been trawling the web for information on dysphagia, which means difficulty in swallowing, and found an excellent posting in the Parkinson’s UK Forum by Cutiepie. (considering the odd names people choose as user names on the forum, Cutiepie is almost sensible). Spurred on by a question from someone who is having problems clearing her throat, Cutiepie has posted a long and thorough text explaining the problem and its manifestation launches – a true magnum opus (I’m not being condescending or patronising – it’s really good). So try the link to Cutiepie, because we all need to be aware of the dangers of dysphagia.
It used to be said of smokers that “it’s not the cough that carries you off, it’s the coffin they carry you off in”. Well, the same is probably true of PD which is generally hailed as a disease you die with rather than die from. Not altogether true as poor balance can lead to perilous falls. But even more commonly (I think) it’s the coughing and choking on food that will get us, either quickly where we turn blue and urgent, or slowly with an lung infection due to aspiration pneumonia (breathing food into the lung where it causes an infection).
So make sure that people you know are familiar with how to perform the Heimlich manoeuvre. Dysphagia is not restricted to PWPs, of course, it also plagues stroke victims and it happen to normal people too. Careful, even mindful, eating is called for – but realize that biting your tongue, lips and cheek is almost normal as we Parkinsonians loose control of the muscles of the head and neck.
I’ve been trawling the web for information on dysphagia, which means difficulty in swallowing, and found an excellent posting in the Parkinson’s UK Forum by Cutiepie. (considering the odd names people choose as user names on the forum, Cutiepie is almost sensible). Spurred on by a question from someone who is having problems clearing her throat, Cutiepie has posted a long and thorough text explaining the problem and its manifestation launches – a true magnum opus (I’m not being condescending or patronising – it’s really good). So try the link to Cutiepie, because we all need to be aware of the dangers of dysphagia.
It used to be said of smokers that “it’s not the cough that carries you off, it’s the coffin they carry you off in”. Well, the same is probably true of PD which is generally hailed as a disease you die with rather than die from. Not altogether true as poor balance can lead to perilous falls. But even more commonly (I think) it’s the coughing and choking on food that will get us, either quickly where we turn blue and urgent, or slowly with an lung infection due to aspiration pneumonia (breathing food into the lung where it causes an infection).
So make sure that people you know are familiar with how to perform the Heimlich manoeuvre. Dysphagia is not restricted to PWPs, of course, it also plagues stroke victims and it happen to normal people too. Careful, even mindful, eating is called for – but realize that biting your tongue, lips and cheek is almost normal as we Parkinsonians loose control of the muscles of the head and neck.
These guys, however, appear to have had no trouble swallowing their food...
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