JON: We went shopping for treats recently. This was not your ordinary chocolate and cake shopping, but shopping on the grand scale – Olympic shopping, in fact. As I may have mentioned a dozen or so times before, I have had a very stubborn case of sciatic nerve pain, which is basically a pain in the bottom. Bad news on top of the Parkinson's. Enough is enough, and action clearly needed to be taken.
Being of sound mind and scrambled body, I went looking for a chair that I can bear to sit in for more than 5 minutes. While being dragged around to places where Marie wanted to buy pointless things like towels and coffee tables and seed potatoes, I have taken every opportunity to thoroughly investigate the market for comfy chairs … and then … Marie found and bought herself a comfy chair which reclines and swivels and probably also types letters. So as not to be outdone, I too found a chair. Only mine is electrified with 2 motors: one reclines, i.e. turns the thing from a chair to a near-bed experience, while the other very cleverly raises the seat and effortlessly tips me out. All I have to do is press a button, something I still find myself able to do without assistance. The chairs should be delivered in about a month, and I can’t wait!
In other news, Marie had to go see one of her clients in Holland. The last time she visited them I was left alone and somewhat miserable at home, so this time she dragged me along. This had upsides and down sides. On the up side, I had company, restaurant meals, and British TV to watch at the hotel. The downsides were exactly the same. As a special challenge, they gave us a room with the shower over the bathtub, which meant I had to forego the continental habit of morning showers because I quite simply cannot raise my leg high enough to get into a tub in the mornings. Instead, I reverted to evening ablutions, with Marie there to assist me in and out.
The journey to Leiden gave us plenty of time to talk. Or to be more exact: it gave Marie time to talk, but that was OK because she talked about me. At least I thought it was OK until it transpired that she was in fact somewhat upset with me. I was very surprised to be informed that I subconsciously resent the fact that Marie is healthy and I’m not, and that I punish her for this by being obdurate (look it up, it’s a finely calibrated insult). I flatly deny this. But of course it doesn’t really matter if it’s true or not, our problem is that we disagree. I suspect the PD is somehow to blame and that Marie will simply have to find a way to live with it.
Her other complaint was that I don’t do the things that I can do. Of this I declare myself guilty, mea culpa entirely. It’s not that I deliberately don’t do things, it’s just that I don’t remember to do them. I need to be reminded, and I can see how the need to prompt me to do almost everything must be irritating. For this I will play the PD card (i.e. blame it on the disease). Because of the PD, I occasionally forget to brush my teeth. Me! I’m a dentist; I recognise the importance of clean teeth better that most people, and I’ve cleaned mine twice daily for over 50 years. If I can forget to brush, surely it’s no wonder I also forget to go for my walk, and collect the mail, and take out the trash, etc. etc. etc. Since shouting at me appears to have little effect, we’ve agreed to try a tick list of daily tasks on the fridge. This too shall pass…
20 March 2011
14 March 2011
Hollywood PD
MARIE: I’ve been writing a few articles and book reviews for the Danish Parkinson’s Association’s magazine, and now Jon and I have just produced our first joint article. The editor asked us to go see the film Love and Other Drugs, and here is what we thought of it:
Parkinson’s: the Hollywood edition
The Hollywood film Love and Other Drugs has already been reviewed in the daily papers, so most readers probably know that it’s about Jamie, an unscrupulous motor mouth of a pharmaceutical sales rep (played by Jake Gyllenhaal) who falls in love with Maggie, a laidback artist with early onset Parkinson’s and a tendency to prefer sex to tenderness (played by Anne Hathaway). The genre is rom-com. The comedy element is delivered by Jamie and his younger brother, a nerdy IT millionaire with a penchant for internet porn, while the romance appears as the relationship between Jamie and Maggie develops from an orgy of naked body parts into something more profound – and this is where PD comes in as the difficulty the lovers must surmount.
The film has had mixed reviews and has been criticized for being too kind to big pharma, to the point of being one long commercial for Jamie’s hottest product, Viagra. We don’t agree. While it is true that the film provides no exposé of the industry, it doesn’t pull its punches in the portrayal of superficial, fast talking and deeply unethical sales reps’ attempts to influence egocentric, drug addicted and disillusioned doctors.
Gyllenhaal and Hathaway both do a great job, and they are certainly easy on the eye in the many nude scenes, although that is perhaps less engrossing for a European audience than for the more prudish American home market. And yet the film feels flat. We laughed, but weren’t in tears of laughter. We were moved, but weren’t moved to the other kind of tears either. So we probably agree with the other point of criticism, that Love and Other Drugs is really two films squashed together into one manuscript: a satire on the pharmaceutical industry, and a romantic story about the difficulty of abandoning yourself to love when one partner has a chronic disease.
It is a rare treat to see Parkinson’s portrayed on screen, especially with a young PWP in the lead. It’s good that for once the disease is not delegated to a few tremulous extras at the back of a nursing home scene. It is perhaps less good that Maggie’s only symptoms are a mild hand tremor and some clumsiness, that her medication seems rather peculiar, and that she apparently has no need of a regular neurologist.
But Awakenings from 1990 (with Robert de Niro in one of his best performances), the only other film we know of about Parkinson’s disease, is no truthful document either. There is quite a gulf between the film and the reality presented in the book on which it is based, Dr Oliver Sacks’ Awakenings from 1973.
Does it matter? A cinema film only lasts a couple of hours, and Love and Other Drugs also needs to make time to be fun and a bit naughty. It doesn’t pretend to be more than it is: not great art, but good entertainment with perhaps a little bit of an edge. You don’t learn much about the symptoms of PD, but there are pretty effective (short) passages about how the disease affects every day life, relationships, hopes for the future and (self) confidence. Likewise, we liked the descriptions of Jamie’s wild hunt for a cure – on Maggie’s behalf, but without her consent – and of Maggie’s first meeting with other Parkinsonians.
At least the audience will know more about Parkinson’s Disease after watching Love and Other Drugs than one would know, say, about prostitution after watching Pretty Woman, or about paleontology after watching Jurassic Park. This is entertainment, but not just entertainment. And that’s actually good enough.
Parkinson’s: the Hollywood edition
The Hollywood film Love and Other Drugs has already been reviewed in the daily papers, so most readers probably know that it’s about Jamie, an unscrupulous motor mouth of a pharmaceutical sales rep (played by Jake Gyllenhaal) who falls in love with Maggie, a laidback artist with early onset Parkinson’s and a tendency to prefer sex to tenderness (played by Anne Hathaway). The genre is rom-com. The comedy element is delivered by Jamie and his younger brother, a nerdy IT millionaire with a penchant for internet porn, while the romance appears as the relationship between Jamie and Maggie develops from an orgy of naked body parts into something more profound – and this is where PD comes in as the difficulty the lovers must surmount.
The film has had mixed reviews and has been criticized for being too kind to big pharma, to the point of being one long commercial for Jamie’s hottest product, Viagra. We don’t agree. While it is true that the film provides no exposé of the industry, it doesn’t pull its punches in the portrayal of superficial, fast talking and deeply unethical sales reps’ attempts to influence egocentric, drug addicted and disillusioned doctors.
Gyllenhaal and Hathaway both do a great job, and they are certainly easy on the eye in the many nude scenes, although that is perhaps less engrossing for a European audience than for the more prudish American home market. And yet the film feels flat. We laughed, but weren’t in tears of laughter. We were moved, but weren’t moved to the other kind of tears either. So we probably agree with the other point of criticism, that Love and Other Drugs is really two films squashed together into one manuscript: a satire on the pharmaceutical industry, and a romantic story about the difficulty of abandoning yourself to love when one partner has a chronic disease.
It is a rare treat to see Parkinson’s portrayed on screen, especially with a young PWP in the lead. It’s good that for once the disease is not delegated to a few tremulous extras at the back of a nursing home scene. It is perhaps less good that Maggie’s only symptoms are a mild hand tremor and some clumsiness, that her medication seems rather peculiar, and that she apparently has no need of a regular neurologist.
But Awakenings from 1990 (with Robert de Niro in one of his best performances), the only other film we know of about Parkinson’s disease, is no truthful document either. There is quite a gulf between the film and the reality presented in the book on which it is based, Dr Oliver Sacks’ Awakenings from 1973.
Does it matter? A cinema film only lasts a couple of hours, and Love and Other Drugs also needs to make time to be fun and a bit naughty. It doesn’t pretend to be more than it is: not great art, but good entertainment with perhaps a little bit of an edge. You don’t learn much about the symptoms of PD, but there are pretty effective (short) passages about how the disease affects every day life, relationships, hopes for the future and (self) confidence. Likewise, we liked the descriptions of Jamie’s wild hunt for a cure – on Maggie’s behalf, but without her consent – and of Maggie’s first meeting with other Parkinsonians.
At least the audience will know more about Parkinson’s Disease after watching Love and Other Drugs than one would know, say, about prostitution after watching Pretty Woman, or about paleontology after watching Jurassic Park. This is entertainment, but not just entertainment. And that’s actually good enough.
05 March 2011
Evolution and adaptation
MARIE: We have a book called The Comforts of Home for Parkinson’s Disease which we bought quite soon after Jon was diagnosed when we were looking both for information and also, in hindsight, for reassurance that PD was quite manageable if only one followed the seven-step plan or abided by the five M’s or remembered the twelve golden rules. As it turns out (happily and sadly), books about Parkinson’s don’t tend to offer up the shallow comforts and wild promises of more main-stream self-help books.
But The Comforts of Home does give lots of very useful advice and tips, and indeed our home is turning into a PD-enabled comfort zone. We don’t want the place to look like a home for the disabled (though interestingly, it was in fact the home of a disabled woman and her husband before we moved in), but nor do we want to disguise Jon’s illness as if it was some shameful secret.
So he’s got his big floor-to-ceiling pole to help him get in and out of bed and a handgrip in the shower plus another one ready to be fitted next to the urinal when necessary. Yes, the urinal – the plumber who installed it said the only other time he’d put one in a private home was for a gay couple. But a standing wee is much easier than sitting, particularly in the middle of the night. We also went for a toilet with extra height (easier to get up off), an extra-large shower cubicle with an extra-wide door and room for a stool, and lots of bright lighting.
In the living room we’ve done away with throw rugs and just have one large rug that’s been stuck down with carpet tape to reduce the risk of tripping. The sofa has hard boards under the seat cushions to give better support, we’ve abandoned our beloved deep easy chairs because they were just impossible for Jon to get up from, and after a year-long search we have now finally found an ‘electric chair’ that both reclines and has a seat lift and even looks quite reasonable – not cheap, as the beast has to be upholstered in leather so Jon can glide frictionlessly in and out of it.
Moving into wardrobes and cupboards, bookcases and drawers we’ve tried to take into account that Jon finds it difficult to reach high shelves and impossible to reach low ones. From that perspective, the current kitchen is a problem area as most of the lower cabinets have shelves rather than drawers. Anyone would find it difficult to reach stuff at the back of the bottom shelf, and for Jon those areas are about as accessible as the top of Mt. Everest. There’s no new kitchen in our budget just now, but we should be able to scrape together the funds for a refurbishment in a few years.
All in all it’s a bit of a balancing act. When buying new stuff or doing up the house it makes sense to pick products and solutions that will continue to work as Jon’s PD gets worse, but on the other hand it’s important to keep living as normally as possible and not start relying on aids before they’re really necessary – because, as the occupational therapist says, you use it or you loose it. In that spirit of grin-and-bear-it, we’ve just been to the sales for a pair of padded ski pants for Jon so he has one less excuse for skipping the ‘daily’ walk. For some reason, the cat is terrified of the trousers and goes into immediate panic mode when he sees them. They’re hardly the height of fashion, but I honestly don’t think they’re that bad.
But The Comforts of Home does give lots of very useful advice and tips, and indeed our home is turning into a PD-enabled comfort zone. We don’t want the place to look like a home for the disabled (though interestingly, it was in fact the home of a disabled woman and her husband before we moved in), but nor do we want to disguise Jon’s illness as if it was some shameful secret.
So he’s got his big floor-to-ceiling pole to help him get in and out of bed and a handgrip in the shower plus another one ready to be fitted next to the urinal when necessary. Yes, the urinal – the plumber who installed it said the only other time he’d put one in a private home was for a gay couple. But a standing wee is much easier than sitting, particularly in the middle of the night. We also went for a toilet with extra height (easier to get up off), an extra-large shower cubicle with an extra-wide door and room for a stool, and lots of bright lighting.In the living room we’ve done away with throw rugs and just have one large rug that’s been stuck down with carpet tape to reduce the risk of tripping. The sofa has hard boards under the seat cushions to give better support, we’ve abandoned our beloved deep easy chairs because they were just impossible for Jon to get up from, and after a year-long search we have now finally found an ‘electric chair’ that both reclines and has a seat lift and even looks quite reasonable – not cheap, as the beast has to be upholstered in leather so Jon can glide frictionlessly in and out of it.
Moving into wardrobes and cupboards, bookcases and drawers we’ve tried to take into account that Jon finds it difficult to reach high shelves and impossible to reach low ones. From that perspective, the current kitchen is a problem area as most of the lower cabinets have shelves rather than drawers. Anyone would find it difficult to reach stuff at the back of the bottom shelf, and for Jon those areas are about as accessible as the top of Mt. Everest. There’s no new kitchen in our budget just now, but we should be able to scrape together the funds for a refurbishment in a few years.
All in all it’s a bit of a balancing act. When buying new stuff or doing up the house it makes sense to pick products and solutions that will continue to work as Jon’s PD gets worse, but on the other hand it’s important to keep living as normally as possible and not start relying on aids before they’re really necessary – because, as the occupational therapist says, you use it or you loose it. In that spirit of grin-and-bear-it, we’ve just been to the sales for a pair of padded ski pants for Jon so he has one less excuse for skipping the ‘daily’ walk. For some reason, the cat is terrified of the trousers and goes into immediate panic mode when he sees them. They’re hardly the height of fashion, but I honestly don’t think they’re that bad.
01 March 2011
Things I no longer want to do
JON: I had an invitation recently to act as external examiner at a university back in the UK. My first reaction was to grab it with both hands as a sign that I can still do the sort of stuff I used to do. However, on more mature thought, and after some discussion, I decided to turn it down. Why?
1 When stressed I start to gibber, stammer and generally become hard to understand, even for those who know me well.
2 I absolutely NEED to take mid-morning and afternoon naps, or at least lie down for half an hour or so to recharge (a.k.a. let the drugs kick in).
3 If I under-dose, I slow right down and become unfit for any kind of purpose. I worry that the time change, though only one hour, could be enough to mess up my internal clock.
4 If I over-dose, I get slightly high – not a problem if I’m out being social, but hardly appropriate for an external examiner. It’s a serious responsibility to take on and should not be conducted by somebody whose poor tiny brain is liable to turn to custard every so often.
So I stayed home. And what did I do instead of examining eager young minds? Well, for many people Sunday is not so much a day of rest, but a day of DIY, and to me every day is a kind of Sunday. So do I engage in DIY? Pha! I find people’s claim that this is somehow “fun” quite absurd and possibly borderline pathological.
What we (and of course by that I mean Marie) did instead was hire a handy man for a day. He’s done a fine job, with Marie supervising. Which is something of a miracle, because whenever she and I attempt to do anything DIYish together it typically degenerates into World War III. I must admit it’s slightly emasculating to have someone else do your DIY – I used to be reasonably good at it (at least, when I put a shelf up it generally stayed up). But this way is soooo much better for our marriage and for my back.
Mind you, such good sense only prevails for a while. Marie was up in town for work the other day and I thought to surprise and delight her by stacking some of the vast quantity of firewood we’ve just had delivered. She was indeed delighted, and I suppose that goes some way towards a) re-masculating me and b) making up for my very sore muscles.
BREAKING NEWS
The Danish bureaucrats have pondered, pontificated and procrastinated and phinally decided that I am a person of sufficient worth and value that they will allow me to become a member of the Danish public. There are a few restrictions: I may not get to vote, rape or pillage, and I am to be force fed herring for breakfast, lunch and dinner until I can pronounce the Danish for ‘my postillion has been struck by lightning’. But these are tiny inconveniences compared to the great boon that is the possession of the magic CPR number that will now allow me to insure myself, open a bank account, get a doctor’s appointment and generally start living like I belong here.
1 When stressed I start to gibber, stammer and generally become hard to understand, even for those who know me well.
2 I absolutely NEED to take mid-morning and afternoon naps, or at least lie down for half an hour or so to recharge (a.k.a. let the drugs kick in).
3 If I under-dose, I slow right down and become unfit for any kind of purpose. I worry that the time change, though only one hour, could be enough to mess up my internal clock.
4 If I over-dose, I get slightly high – not a problem if I’m out being social, but hardly appropriate for an external examiner. It’s a serious responsibility to take on and should not be conducted by somebody whose poor tiny brain is liable to turn to custard every so often.
So I stayed home. And what did I do instead of examining eager young minds? Well, for many people Sunday is not so much a day of rest, but a day of DIY, and to me every day is a kind of Sunday. So do I engage in DIY? Pha! I find people’s claim that this is somehow “fun” quite absurd and possibly borderline pathological.
What we (and of course by that I mean Marie) did instead was hire a handy man for a day. He’s done a fine job, with Marie supervising. Which is something of a miracle, because whenever she and I attempt to do anything DIYish together it typically degenerates into World War III. I must admit it’s slightly emasculating to have someone else do your DIY – I used to be reasonably good at it (at least, when I put a shelf up it generally stayed up). But this way is soooo much better for our marriage and for my back.
Mind you, such good sense only prevails for a while. Marie was up in town for work the other day and I thought to surprise and delight her by stacking some of the vast quantity of firewood we’ve just had delivered. She was indeed delighted, and I suppose that goes some way towards a) re-masculating me and b) making up for my very sore muscles.BREAKING NEWS
The Danish bureaucrats have pondered, pontificated and procrastinated and phinally decided that I am a person of sufficient worth and value that they will allow me to become a member of the Danish public. There are a few restrictions: I may not get to vote, rape or pillage, and I am to be force fed herring for breakfast, lunch and dinner until I can pronounce the Danish for ‘my postillion has been struck by lightning’. But these are tiny inconveniences compared to the great boon that is the possession of the magic CPR number that will now allow me to insure myself, open a bank account, get a doctor’s appointment and generally start living like I belong here.
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