MARIE: I’ve just realized that we never followed up on our experiment with a low-protein diet (to avoid unhelpful competition between L-dopa and protein in the gut) – see posts from 4th July and 14th September.
Well, the good news is that our two experimental weeks on a low-protein diet didn’t seem to make any difference to Jon’s condition. It may become an issue later, of course, but for now we can continue with our normal diet. Which is just as well, because it was surprisingly difficult to live the low-protein life.
The general recommendation for a balanced diet includes 50-120 gr of protein per day for an adult woman, 60-150 for an adult man. A lightly protein-reduced diet is viewed as one hovering at the low end of the normal range, which for men means 50-70 gr of protein per day. That didn’t sound too difficult at first. As everyone knows, proteins are mainly found in meat, and there are lots of delicious vegetarian things to eat. Okay, Jon is pretty keen on meat, but not to the complete exclusion of vegetarian food. Surely we could find two weeks worth of veggie dishes that he would enjoy.
Then I had a look in the dietary guidelines we’d been given by the hospital and discovered that a vegetarian diet was not going to do the trick at all, what was needed was something closer to a vegan diet. All the lovely vegetarian dinners I had looked forward to involved eggs, cheese, cream and/or butter in fairly copious quantities. No good, as all are high in protein. Even wheat products (bread, pasta, biscuits) are full of proteins and had to be tightly controlled. Rice is a bit less protein-rich, so we could have risotto (without the parmesan and butter) and fried rice (without the egg). Potato has even less protein, so we went to town on boiled potatoes (without sauce) and potato salad (hold the mayo). Fruit and vegetables (excluding beans and peas) were a free-for-all, so we could have thick vegetable soups (accompanied by no bread), oven bakes (without the cheesy topping), fruit smoothies (without the yogurt), and stewed fruits (without the custard).
This was all immensely healthy, but not particularly tasty. Basically, once we’d had a survival ration of breakfast cereal and enough milk to temper a day’s worth of tea or coffee, we’d already used up half the day’s protein allowance. Fresh fruit and green salad is nice, yes, but not all day every day. IF this regime had made Jon feel better, I’m sure we would have found a way to live with it (but even vegan cookbooks are full of forbidden things like beans and nuts, so it would not have been easy). It’s a great relief that we can get stuck into meat and dairy again – although we do try to eat a little less of it now.
We’re also trying to watch our sugar and fat intake a little more. Nothing fanatic (as Jon says: eat well, stay fit, die anyway), but we had gotten a little bit out of hand and both needed reining in again. Just because you have Parkinson’s that doesn’t mean you can’t get diabetes too.
Showing posts with label protein. Show all posts
Showing posts with label protein. Show all posts
15 November 2009
14 September 2009
Shrinking
Last week we were in Denmark, attending a double 70th birthday party, and doing a bit of house hunting on the side. Marie also had to see some clients, get a tooth fixed, stock up on herring – general tasks of life. Meanwhile, I stayed with Marie’s parents who (unlike their daughter) are excellent at just letting me get on with life at my own pace. So I took lots of reading materials, two computers, a box file of scientific papers to read – and what did I achieve? Two and a half paperbacks read, admittedly thick ones, but in the old days I would polish off two books in a day. Not now – I have often forgotten the beginning of the sentence before I get to the end, which lends a certain surreal quality to much of my reading.
But if that is the case, you ask, how come I can writing this blog? Two reasons: I only write when my L-dopa is at its optimal level (and I then write very, very slowly and deleting a great deal as I go along), and Marie edits the resulting stream of strange consciousness into text afterwards. At the moment, writing the blog feels like hard work, as does sorting and editing the photos I took at the birthday party which is something I would normally actively enjoy.
The problem, according to shrink 2, is that for me to start on any task I need to be triggered into action. This new psychotherapist (shrink 2) seems to be even better than shrink 1, who was very competent but not an expert on Parkinson’s. Which was fine since it turned out that at the time it was she who must be obeyed who had the pressing problem (a problem which turned out to be me, of course – however, anyway, dot dot dot). Shrink 2, though, is an great expert on Parkinson’s and started out on our first date by describing me to myself with frightening accuracy, including the fact that I don’t get things done because I quite simply lack the drive – apparently very common with Parkinson’s.
Given that shrink 2 delivered an excellent diagnosis, could it be he has some form of treatment up his sleeve? The snag, you see, is that all this “triggering” can easily come over as “nagging” (especially, I suspect, when done by one’s beloved wife). OK, I accept that I need to be prodded, but it’s a very delicate balance between getting a helpful nudge and being nagged. Which really doesn’t help, but just makes me screw my stubborn behind even further into the sofa.
It is of course also important that I’m nudged/nagged at the correct phase of my symptoms. No use starting the morning by discussing the day’s programme as I am unlikely to be focused enough to remember it later. No use suggesting I should go for a walk at noon as that is a low point in my day, whereas I’m at my physical peak between 1 and 3 in the afternoon. And no use trying to have a sensible conversation with me after 9 pm as I’m generally too tired to think by then.
On top of all this we are doing a diet experiment this week and next, based on the idea that protein in the diet can interfere with of L-dopa (because protein breaks down into amino acids that compete with L-dope for absorption in the gut). So one should never take L-dopa too close to a meal full of protein-rich foods, but for some people it is apparently worth going further and living on a generally protein-reduced diet. Finding out whether that also works for me involves eating a low-protein diet for two weeks to see if it makes me feel better. Can’t say I’m looking forward to it, but if there is a chance it could reduce the symptom fluctuations, I’ll give it a go. It might also help me loose some weight. 90 kg at the moment, and I’d like to get to 80 kg. I may make it, the low-protein food has been fairly horrid so far and I expect it to get worse. Ever the optimist, me.
But if that is the case, you ask, how come I can writing this blog? Two reasons: I only write when my L-dopa is at its optimal level (and I then write very, very slowly and deleting a great deal as I go along), and Marie edits the resulting stream of strange consciousness into text afterwards. At the moment, writing the blog feels like hard work, as does sorting and editing the photos I took at the birthday party which is something I would normally actively enjoy.
The problem, according to shrink 2, is that for me to start on any task I need to be triggered into action. This new psychotherapist (shrink 2) seems to be even better than shrink 1, who was very competent but not an expert on Parkinson’s. Which was fine since it turned out that at the time it was she who must be obeyed who had the pressing problem (a problem which turned out to be me, of course – however, anyway, dot dot dot). Shrink 2, though, is an great expert on Parkinson’s and started out on our first date by describing me to myself with frightening accuracy, including the fact that I don’t get things done because I quite simply lack the drive – apparently very common with Parkinson’s.
Given that shrink 2 delivered an excellent diagnosis, could it be he has some form of treatment up his sleeve? The snag, you see, is that all this “triggering” can easily come over as “nagging” (especially, I suspect, when done by one’s beloved wife). OK, I accept that I need to be prodded, but it’s a very delicate balance between getting a helpful nudge and being nagged. Which really doesn’t help, but just makes me screw my stubborn behind even further into the sofa.
It is of course also important that I’m nudged/nagged at the correct phase of my symptoms. No use starting the morning by discussing the day’s programme as I am unlikely to be focused enough to remember it later. No use suggesting I should go for a walk at noon as that is a low point in my day, whereas I’m at my physical peak between 1 and 3 in the afternoon. And no use trying to have a sensible conversation with me after 9 pm as I’m generally too tired to think by then.
On top of all this we are doing a diet experiment this week and next, based on the idea that protein in the diet can interfere with of L-dopa (because protein breaks down into amino acids that compete with L-dope for absorption in the gut). So one should never take L-dopa too close to a meal full of protein-rich foods, but for some people it is apparently worth going further and living on a generally protein-reduced diet. Finding out whether that also works for me involves eating a low-protein diet for two weeks to see if it makes me feel better. Can’t say I’m looking forward to it, but if there is a chance it could reduce the symptom fluctuations, I’ll give it a go. It might also help me loose some weight. 90 kg at the moment, and I’d like to get to 80 kg. I may make it, the low-protein food has been fairly horrid so far and I expect it to get worse. Ever the optimist, me.
04 July 2009
The centre of attention
JON: So, I guess you will want a report of my day of pampering at the Parkinson Centre, right?
Well, after some chatting, the occupational therapist asked me to do two things: boil an egg and peel an apple. I started with the apple, which turned out to be very, very difficult for me. Half way through, she pointed out that I’d forgotten to start the egg. That's when it all got a bit confused. They had an electric hob and I’m a gas-man, so now I was trying to do several things at once – work out the cooker, watch the egg, find an egg cup, finish peeling the apple, and find a plate to serve the apple quarters. Marie seemed to feel that this was a productive exercise – defining my boundaries, etc. I found it depressing, not having realized how far I’ve sunk into the mire. It was a bit like having my nose rubbed in my disabilities.
The psychiatrist thinks that although I’m not depressed now (or yet), I should make a pre-emptive strike by considering some happy pills before I do get depressive, and also possibly engage with a psycho-coach to help in ‘the process of coming to terms’. I am open to the first idea, and not completely closed to the second.
The social worker was very helpful and directed us to the right place to sort out our pension / social security issues (Marie talks more about that below).
The dietician, rather predictably, told us to eat less and exercise more, and we agreed. We also chatted about the protein problem. The problem is this: L-dopa is a form of amino acid, so it competes for absorption with any other amino acid present in the gut. Proteins from food are broken down in the stomach into amino acids. Thus, eating lots of proteins can hinder the absorption of L-dopa. Normally the advice is just to avoid protein-rich foods around the time that you take your L-dopa medication, but it could also be that a general low-protein diet would make me feel better. It works for some, but not for all. We agreed to try it for 2 weeks (at a suitable time) to see if it makes a difference for me. I guess even placebo can be a good thing in the right circumstances, it’s just that being an ex-dentist I have a professional problem with gift-horses…
On the whole it was a very productive day. The downside is that it forced me into confronting my current problems and, worse, those that are yet to come. My policy of denial was working OK for me before, but now I have to think about these things. Plan A was to be shot at the age of 90 by a jealous husband, plan B now seems to involve electric wheelchairs, bed-baths (lots of lather, please nurse) and buckets of liquidized food. Ho hum.
MARIE: Is that a light at the end of the tunnel, or just an on-coming train? It seems we may, at long last, be able to make some progress on Jon’s status regarding work and pension, and thus begin to tame the many uncertainties that have been stressing us out - few things, in my fortunately limited experience, being worse than uncertainty and the sense of powerlessness it brings. Well, actually, everyone knows that there's nothing worse than a paper cut, but uncertainty comes second.
At the utterly marvelous and intensely exhausting day we had at the Parkinson Centre this week, Jon was seen and assessed and advised by many experts all of whom agreed that there was more they could do to help him but that it was highly unlikely this would render him a viable prospect on the job market, and that the focus should therefore be on helping him adjust to and cope with a life of leisure (which sounds a lot better than it is when it comes from being incurably ill at the age of 56).
It has been almost a year since Jon went on sick leave, which is cause for an evaluation of the prospects for his return to work and of the effect of efforts made towards ‘rehabilitating’ him back into the labour force. Which both appear to be essentially nil, in the eyes of his works doctor and supervisor. This in turn raises the question whether Jon should apply to be assessed for disability pension now, or remain in limbo for another year before the assessment is forced on him. I had a long and helpful chat with the government body that awards these pensions, and was told that it was exceedingly rare for them to overturn the opinion of a works doctor.
That means we now have a clear path: first see the works doctor (appointment in two weeks’ time) and get his opinion, then see supervisor and personnel department to confirm details of salary, pension and insurance (hopefully on the same day). Next, see Jon’s normal neurologist (next month) to get her opinion. Then, if (as we now firmly expect) everyone agrees that there is no hope of Jon retuning to work, apply for disability pension, wait up to 10 weeks for the response, and draw a sigh of relief at one less uncertainty to keep us awake at night.
JON: On re-reading the text below, I realize that only an obsessive-compulsive pharmacist could possibly be interested, so unless you are indeed an obsessive-compulsive pharmacist or possibly a PWP, skip the rest of this post. (People With Parkinson’s who can’t skip, can just crawl to the helpful button marked X.)
The neurologist who adjusted my medication last week was very careful to stress that when adjusting treatment (drug, dosage, timing, frequency, etc.) it is VERY important to change only one thing at a time – and then went on to suggest that I make two changes: switch from Sinemet to Madopar dispers (a rapid-uptake form of L-dopa) and start to take a daily Azilect (rasagiline, a MAO-B inhibitor) which supposedly prevents breakdown of dopamine in the brain and thus leaves me with a higher level which is a Good Thing.
So, as Dr Phil might say: ‘how’s that workin’ for ya?’ And the answer would have to be CRAP. Back in the good old days (i.e. last Thursday) on Sinemet, I took 3 doses a day at 5-hour intervals. It sort of worked, but not well. Basically, the pills took upwards of 2 hours to take effect, I then felt good for an hour or so, then downhill until the next dose. We did a straight swap to the same dosage and frequency of Madopar. It takes effect quicker (1 hour or less), but also seems to wear off quicker, and the good bit isn’t as good. I’ve been very strict and not allowed myself any ‘tweenies’ which I have to admit I did back in the old days. I’ll give it a little longer but am not feeling hopeful.
Well, after some chatting, the occupational therapist asked me to do two things: boil an egg and peel an apple. I started with the apple, which turned out to be very, very difficult for me. Half way through, she pointed out that I’d forgotten to start the egg. That's when it all got a bit confused. They had an electric hob and I’m a gas-man, so now I was trying to do several things at once – work out the cooker, watch the egg, find an egg cup, finish peeling the apple, and find a plate to serve the apple quarters. Marie seemed to feel that this was a productive exercise – defining my boundaries, etc. I found it depressing, not having realized how far I’ve sunk into the mire. It was a bit like having my nose rubbed in my disabilities.
The psychiatrist thinks that although I’m not depressed now (or yet), I should make a pre-emptive strike by considering some happy pills before I do get depressive, and also possibly engage with a psycho-coach to help in ‘the process of coming to terms’. I am open to the first idea, and not completely closed to the second.
The social worker was very helpful and directed us to the right place to sort out our pension / social security issues (Marie talks more about that below).
The dietician, rather predictably, told us to eat less and exercise more, and we agreed. We also chatted about the protein problem. The problem is this: L-dopa is a form of amino acid, so it competes for absorption with any other amino acid present in the gut. Proteins from food are broken down in the stomach into amino acids. Thus, eating lots of proteins can hinder the absorption of L-dopa. Normally the advice is just to avoid protein-rich foods around the time that you take your L-dopa medication, but it could also be that a general low-protein diet would make me feel better. It works for some, but not for all. We agreed to try it for 2 weeks (at a suitable time) to see if it makes a difference for me. I guess even placebo can be a good thing in the right circumstances, it’s just that being an ex-dentist I have a professional problem with gift-horses…
On the whole it was a very productive day. The downside is that it forced me into confronting my current problems and, worse, those that are yet to come. My policy of denial was working OK for me before, but now I have to think about these things. Plan A was to be shot at the age of 90 by a jealous husband, plan B now seems to involve electric wheelchairs, bed-baths (lots of lather, please nurse) and buckets of liquidized food. Ho hum.
MARIE: Is that a light at the end of the tunnel, or just an on-coming train? It seems we may, at long last, be able to make some progress on Jon’s status regarding work and pension, and thus begin to tame the many uncertainties that have been stressing us out - few things, in my fortunately limited experience, being worse than uncertainty and the sense of powerlessness it brings. Well, actually, everyone knows that there's nothing worse than a paper cut, but uncertainty comes second.
At the utterly marvelous and intensely exhausting day we had at the Parkinson Centre this week, Jon was seen and assessed and advised by many experts all of whom agreed that there was more they could do to help him but that it was highly unlikely this would render him a viable prospect on the job market, and that the focus should therefore be on helping him adjust to and cope with a life of leisure (which sounds a lot better than it is when it comes from being incurably ill at the age of 56).
It has been almost a year since Jon went on sick leave, which is cause for an evaluation of the prospects for his return to work and of the effect of efforts made towards ‘rehabilitating’ him back into the labour force. Which both appear to be essentially nil, in the eyes of his works doctor and supervisor. This in turn raises the question whether Jon should apply to be assessed for disability pension now, or remain in limbo for another year before the assessment is forced on him. I had a long and helpful chat with the government body that awards these pensions, and was told that it was exceedingly rare for them to overturn the opinion of a works doctor.
That means we now have a clear path: first see the works doctor (appointment in two weeks’ time) and get his opinion, then see supervisor and personnel department to confirm details of salary, pension and insurance (hopefully on the same day). Next, see Jon’s normal neurologist (next month) to get her opinion. Then, if (as we now firmly expect) everyone agrees that there is no hope of Jon retuning to work, apply for disability pension, wait up to 10 weeks for the response, and draw a sigh of relief at one less uncertainty to keep us awake at night.
JON: On re-reading the text below, I realize that only an obsessive-compulsive pharmacist could possibly be interested, so unless you are indeed an obsessive-compulsive pharmacist or possibly a PWP, skip the rest of this post. (People With Parkinson’s who can’t skip, can just crawl to the helpful button marked X.)
The neurologist who adjusted my medication last week was very careful to stress that when adjusting treatment (drug, dosage, timing, frequency, etc.) it is VERY important to change only one thing at a time – and then went on to suggest that I make two changes: switch from Sinemet to Madopar dispers (a rapid-uptake form of L-dopa) and start to take a daily Azilect (rasagiline, a MAO-B inhibitor) which supposedly prevents breakdown of dopamine in the brain and thus leaves me with a higher level which is a Good Thing.
So, as Dr Phil might say: ‘how’s that workin’ for ya?’ And the answer would have to be CRAP. Back in the good old days (i.e. last Thursday) on Sinemet, I took 3 doses a day at 5-hour intervals. It sort of worked, but not well. Basically, the pills took upwards of 2 hours to take effect, I then felt good for an hour or so, then downhill until the next dose. We did a straight swap to the same dosage and frequency of Madopar. It takes effect quicker (1 hour or less), but also seems to wear off quicker, and the good bit isn’t as good. I’ve been very strict and not allowed myself any ‘tweenies’ which I have to admit I did back in the old days. I’ll give it a little longer but am not feeling hopeful.
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