In my last post I had a little moan about feeling just a tiny bit useless. But it now seems that I am not such a waste of space after all.
(1) I got an invitation to give a lecture in the UK
(2) I got a phone call from a multi-national company asking for my advice on a technical issue
Yes, it is nice to feel wanted. I was happy to deal with (2) and am still considering (1). Perhaps a lecture is a bit much to ask of myself – the last one I gave, about a year ago, was quite stressful and not as polished as I would have liked – but I am considering asking if the idea of a lecture could be changed to more of a discussion session which I think would suit me better. But the point isn’t really whether it happens or not, it is the ego-boosting knowledge that They want it to happen.
I’ve also got a few things to look forward to, first a visit with my grand children next month, second a trip to France in the autumn, and as a matter of literary style I should have a third item which I don’t, but I’m confident that one will turn up. (Me, confident? It must be the drugs!)
Not only that, but also many and varied health professionals have been calling up to make appointments to see me at home, as a follow-up to my three-day evaluation at the Parkinson Centre last month. ‘At home’ has a nice Victorian-afternoon-tea ring to it, does it not? However, letting hoardes of white-coated men and women know where I live sounds rather less fun. But useful, I’m sure.
So, now all I have to do is determine the optimal dosage regime for my pills, attend an average of two therapeutic appointments a week for the next several months, and work out the Byzantine regulations governing disability pensions in the UK, Netherlands and Denmark. Plus write a food science text-book, vacuum the floor, tidy my room, etc., etc.
To be honest, I think the main reason I’m feeling more upbeat is that I’m taking a higher dose of L-dopa. As a result, I have more energy, less muscle pain, less stiffness, better focus, etc. Maybe there is a downside to taking a high dose, but just for now I think any price is a price worth paying, I’ll discuss mood issues with my shrink, though, as I am rather handily seeing him (her?) for the first time this afternoon.
27 July 2009
18 July 2009
The bin
JON: Another busy week in flat land. First I had a meeting with my boss and a guy from Human Resources where we assessed the chances of my returning to productive work from my employers’ perspective. In brief, not a snow ball’s chance in hell
The next day brought a visit with the health insurance company’s pet doctor who again rated me as 0% fit.
So there you have it. I’m past it, superfluous, outmoded, passé, redundant, over, unnecessary, not fit for purpose, rejected, dejected and pointless. What do I do now, what do I do next? And will I be able to afford to do it, whatever it is? The rules that determine what sort of benefit I might receive seem Byzantine, but with luck and a following wind all should come clear in the next month or six.
The meetings went entirely as I had expected, so my reaction to them has come as a bit of a shock. This is the outcome I want - I want to get closure from a difficult situation with work, I want to get a disability pension, I want to have this whole process over with. The only snag is that now the opportunity has arrived I feel labeled. I was OK with ‘he’s been off work for a lo-o-o-ong time because he’s got Parkinson’s, poor sod’. But ‘he’s on disability with a progressive neurological disorder and will probably never write another piece of software, never design another experiment, and soon may no longer be able to put on his own socks’ – well, that is going to take a bit of getting used to.
I need to say to myself 10 times a day: ‘I’m a guy with Parkinson’s, and its OK, and today will be the best day of my life’ – which is true, because it’s all downhill from here. But if I say it quickly enough, I may not notice the last bit. Perhaps I am actually ready for some happy pills...
MARIE: If it wasn’t for this blog, I wouldn’t know half of what goes on inside Jon. I ask – open questions, searching questions, leading questions – but much of the time the only answers I get back are ‘perhaps, a bit’ or ‘nah, not really’ or words to similar un-informative effect.
Like earlier today, when I had a go at Jon for not helping out more around the house, saying how unfair it is that he gets to lie in bed and listen to the radio while I tear around the place with my mop and duster. And then I discover in his blog text that while I was complaining about the minor inconveniences of my day, he was sitting there quietly feeling that his entire life is being thrown on the scrapheap. How sensitive and supportive was that?
One more ‘gift’ of Parkinson’s: you get a lot of practice so you end up good at forgiving. Today I am on the receiving end.
The next day brought a visit with the health insurance company’s pet doctor who again rated me as 0% fit.
So there you have it. I’m past it, superfluous, outmoded, passé, redundant, over, unnecessary, not fit for purpose, rejected, dejected and pointless. What do I do now, what do I do next? And will I be able to afford to do it, whatever it is? The rules that determine what sort of benefit I might receive seem Byzantine, but with luck and a following wind all should come clear in the next month or six.
The meetings went entirely as I had expected, so my reaction to them has come as a bit of a shock. This is the outcome I want - I want to get closure from a difficult situation with work, I want to get a disability pension, I want to have this whole process over with. The only snag is that now the opportunity has arrived I feel labeled. I was OK with ‘he’s been off work for a lo-o-o-ong time because he’s got Parkinson’s, poor sod’. But ‘he’s on disability with a progressive neurological disorder and will probably never write another piece of software, never design another experiment, and soon may no longer be able to put on his own socks’ – well, that is going to take a bit of getting used to.
I need to say to myself 10 times a day: ‘I’m a guy with Parkinson’s, and its OK, and today will be the best day of my life’ – which is true, because it’s all downhill from here. But if I say it quickly enough, I may not notice the last bit. Perhaps I am actually ready for some happy pills...
MARIE: If it wasn’t for this blog, I wouldn’t know half of what goes on inside Jon. I ask – open questions, searching questions, leading questions – but much of the time the only answers I get back are ‘perhaps, a bit’ or ‘nah, not really’ or words to similar un-informative effect.
Like earlier today, when I had a go at Jon for not helping out more around the house, saying how unfair it is that he gets to lie in bed and listen to the radio while I tear around the place with my mop and duster. And then I discover in his blog text that while I was complaining about the minor inconveniences of my day, he was sitting there quietly feeling that his entire life is being thrown on the scrapheap. How sensitive and supportive was that?
One more ‘gift’ of Parkinson’s: you get a lot of practice so you end up good at forgiving. Today I am on the receiving end.
13 July 2009
Ever more therapy
JON: One highlight of the week was our third visit to the Parkinson’s centre, where our coordinator gave us feedback from our previous two visits. Much advice had of course already been given by the experts, but the coordinator told us that there would be follow-ups with
1 A psychiatrist and a psychologist who work together and who would help to ‘coach’ me (whatever that means!) in the process of developing a life after work but with Parkinson’s.
2 An ergo-therapist (that’s an occupation therapist to you and me) who will come to our home and teach me how to cook and tie my shoelaces and other useful things that I’ve learnt at least once already but now need to re-learn in a new step-by-step approach that avoids my big issues with multi-tasking.
3 A physiotherapist – actually, this will be the woman I have been seeing for the last year or so, but the centre will suggest various adjustments to the therapy and will also encourage home visits as that can apparently be much more useful.
I am amazed at the lengths to which these people will go to help me. I rather doubt that an NHS ergo- or physiotherapist would make many home visits. Nor, I am reliably informed, should I expect this ultra-high level of service if/when we move to Denmark (though I can certainly expect better than the threadbare NHS). So I am ‘enjoying’ it while it lasts and getting as much benefit as I possibly can.
The other highlight of the week was an invasion by Marie’s nephews (10-year-old twin boys) and Marie’s sister without whom the visit would have brought us to our knees. I have a only distant memory of what 10-year-old boys are like (since my son is now 28-ish). The boys were in fact very well behaved, but the energy they expended was just phenomenal. I spent much of my time hiding in the bedroom with my radio (internet radio being a great boon to the expat community), mainly emerging for meals and the occasional sedentary game, all of which I duly lost as any good uncle should (though I managed to do so without actually trying).
1 A psychiatrist and a psychologist who work together and who would help to ‘coach’ me (whatever that means!) in the process of developing a life after work but with Parkinson’s.
2 An ergo-therapist (that’s an occupation therapist to you and me) who will come to our home and teach me how to cook and tie my shoelaces and other useful things that I’ve learnt at least once already but now need to re-learn in a new step-by-step approach that avoids my big issues with multi-tasking.
3 A physiotherapist – actually, this will be the woman I have been seeing for the last year or so, but the centre will suggest various adjustments to the therapy and will also encourage home visits as that can apparently be much more useful.
I am amazed at the lengths to which these people will go to help me. I rather doubt that an NHS ergo- or physiotherapist would make many home visits. Nor, I am reliably informed, should I expect this ultra-high level of service if/when we move to Denmark (though I can certainly expect better than the threadbare NHS). So I am ‘enjoying’ it while it lasts and getting as much benefit as I possibly can.
The other highlight of the week was an invasion by Marie’s nephews (10-year-old twin boys) and Marie’s sister without whom the visit would have brought us to our knees. I have a only distant memory of what 10-year-old boys are like (since my son is now 28-ish). The boys were in fact very well behaved, but the energy they expended was just phenomenal. I spent much of my time hiding in the bedroom with my radio (internet radio being a great boon to the expat community), mainly emerging for meals and the occasional sedentary game, all of which I duly lost as any good uncle should (though I managed to do so without actually trying).
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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