I've been invited to give a lecture – it on a topic I've taught before, I already have a set of power-point slides that I can re-use, and I used to enjoy standing up and talking about my research. BUT – can I still do it?
The session is 8:30 to 10:15, which means rather a lot of talking. My speech therapist and I agreed some months ago that I was ‘cured’ in terms of our treatment goals, which were to get me to the stage where I could give a 20 minute talk without freezing, stuttering or losing the plot – and do so loudly enough for an audience to hear me, and clearly enough for them to understand me.
So, a check of the resources:
1. Do I know the topic? Well, yes, I’m quite the expert even if I say so myself. Check.
2. Am I good enough at public speaking? Again, yes. I have lectured for years, have spoken at many scientific conferences, and I managed to entertain a lay audience one year at the Cheltenham Science Festival. Check.
3. Is my body up to it? This may sound really lame, but even though I normally wake at 7:00 am and take my pills immediately, it is not until around 10:00 am that I begin to feel human – and, rather importantly, safe to drive. So to get to the university in time, I will need to take my pills around 5:00 am instead. But since the pills only give me 4-5 hours of peak functioning, the very early start will mean there is a risk that I might start exhibiting symptoms before the end of the lecture. But couldn’t I just take my next dose a bit early, I hear you ask (nothing wrong with my hearing, you know). Well, the snag there is that both under and over dosing give me similar symptoms of freezing, twitching, loss of speech and tremor. So there’s no confident check in this particular box.
Am I being an old woman? Maybe – but can I involve students as guinea pigs to test how much the PD has screwed up my ability to teach? Or am I scared of failure and therefore trying to avoid finding out by not even making the attempt? It seems somehow unethical to me to subject students to me when I’m off-peak – I mean, they will presumably turn up because they feel the need to hear about the subject, so who am I to deprive them of a more functional lecturer?
Or maybe I'm just having a bad day and there is in fact not a single problem that cannot be overcome:
Against quiet speech: use a MICROPHONE.
Against difficulty in remembering words: put the text on slides.
Against tremor: avoid using a laser pointer but go for a heavy stick (which damps out the tremor).
Against slurred speech: tell the students at the beginning that I have PD, and stress that I am neither drunk nor (particularly) nervous – and invite them to tell me if they find me hard to understand.
Against a 5am start: use wife as chauffeur (though a 6am start on meds is probably still inevitable).
I'll keep you posted as to how (and if) I do.
Showing posts with label speech therapy. Show all posts
Showing posts with label speech therapy. Show all posts
23 January 2009
22 September 2008
Big boys' drugs
My appointments with my speech therapist appear soon to be coming to an end – because, to my surprise, the therapy has worked. I admit that when the therapist asked me during my first appointment with her what I expected to get out of the treatment, I told her that my expectations were very low and that I predicted she would have a problem getting me to do the exercises she prescribed. Her answer then was both startling and honest: she would have no problem at all, but I might have one. Out of the mouthes of babes and therapists, eh? Somewhat uncharacteristically, I took this to heart, and with a wife nagging in the background have in fact been reasonably good (though far from perfect) about doing my exercises.
The basic principle seems almost too simple to be taken seriously: first make patient aware that speech is to low and unclear, then get patient to correct the problem through practicepracticepractice … For me, that has meant various collections of long words and short sentences to be practiced regularly, and recently also the use of a sound-level meter (a relic of my former life) which gives my scientist’s soul the satisfaction of being able to see in clear numbers whether I am speaking at an easily audible level. I’m not saying that I am now a model of clarity at all times as I still regularly forget to speak loudly enough, but the difference is that I now know exactly what to do when asked to repeat myself – and that I am able to do it. When I started the therapy, I could barely get through a dozen loud words before my throat went rough and sore, whereas now I can easily do 50 or more. Progress indeed, and I take back much of what I arrogantly thought of speech therapy before.
As I have mentioned before, we have also been playing with my medicine dosages, particularly reducing my intake of Sifrol (a dopamine agonist) in the quest to regain my mental capacities. The result is – predictably – serious physical deterioration but at least with moderate success on the cognitive front. Apparently dopamine agonists regularly have these adverse effects involving hallucinations, sleep disturbance, mood alterations etc., so I am in large, if not particularly healthy, company.
As the dosage has been reduced, I have gotten twitchier and twitchier, stiffer and stiffer, more and more prone to freezing in place. This is no fun at all, let me assure you. It takes enormous effort to get a movement started, and once I’ve got going it is hard to stop so it is not long before I run out of space. The last week or so I have regularly become trapped in corners, inside T-shirts, and somehow ended up turtle-style on the floor when all I meant to do was pick up my shoes. Shoes in themselves are another area of frustration as I now find it almost impossible to get shoes and socks on, and equally difficult to force my feet into the leg holes of knickers and trousers. Do you know how demoralising it feels to have to sit there like some useless lump while your wife helps you into your underwear? Very bloody demoralising indeed, is the short answer.
This obviously cannot go on, the way it is wrecking the quality of life of both myself and #2. I had hoped to wait a little longer before going on levodopa both because it feels too soon for such a fairly drastic step, and because many (but not all) experts suggest it is better to wait as long as possible – the idea being that there is a finite “window” of treatment when levodopa works well, after which severe side effects normally set in. On the other hand, I could also get run over by a bus, attacked by killer bees, or develop the lung cancer I so richly deserve after being a two-pack-a-day man for decades. And then what would have been the point of postponing levodopa and suffering through more of this current misery? So this morning, the decision was taken to switch me to levodopa (Sinemet) right away. Marie and I are both pinning our hopes on this giving me real boost – watch this space!
The basic principle seems almost too simple to be taken seriously: first make patient aware that speech is to low and unclear, then get patient to correct the problem through practicepracticepractice … For me, that has meant various collections of long words and short sentences to be practiced regularly, and recently also the use of a sound-level meter (a relic of my former life) which gives my scientist’s soul the satisfaction of being able to see in clear numbers whether I am speaking at an easily audible level. I’m not saying that I am now a model of clarity at all times as I still regularly forget to speak loudly enough, but the difference is that I now know exactly what to do when asked to repeat myself – and that I am able to do it. When I started the therapy, I could barely get through a dozen loud words before my throat went rough and sore, whereas now I can easily do 50 or more. Progress indeed, and I take back much of what I arrogantly thought of speech therapy before.
As I have mentioned before, we have also been playing with my medicine dosages, particularly reducing my intake of Sifrol (a dopamine agonist) in the quest to regain my mental capacities. The result is – predictably – serious physical deterioration but at least with moderate success on the cognitive front. Apparently dopamine agonists regularly have these adverse effects involving hallucinations, sleep disturbance, mood alterations etc., so I am in large, if not particularly healthy, company.
As the dosage has been reduced, I have gotten twitchier and twitchier, stiffer and stiffer, more and more prone to freezing in place. This is no fun at all, let me assure you. It takes enormous effort to get a movement started, and once I’ve got going it is hard to stop so it is not long before I run out of space. The last week or so I have regularly become trapped in corners, inside T-shirts, and somehow ended up turtle-style on the floor when all I meant to do was pick up my shoes. Shoes in themselves are another area of frustration as I now find it almost impossible to get shoes and socks on, and equally difficult to force my feet into the leg holes of knickers and trousers. Do you know how demoralising it feels to have to sit there like some useless lump while your wife helps you into your underwear? Very bloody demoralising indeed, is the short answer.
This obviously cannot go on, the way it is wrecking the quality of life of both myself and #2. I had hoped to wait a little longer before going on levodopa both because it feels too soon for such a fairly drastic step, and because many (but not all) experts suggest it is better to wait as long as possible – the idea being that there is a finite “window” of treatment when levodopa works well, after which severe side effects normally set in. On the other hand, I could also get run over by a bus, attacked by killer bees, or develop the lung cancer I so richly deserve after being a two-pack-a-day man for decades. And then what would have been the point of postponing levodopa and suffering through more of this current misery? So this morning, the decision was taken to switch me to levodopa (Sinemet) right away. Marie and I are both pinning our hopes on this giving me real boost – watch this space!
31 July 2008
Intermittent faults
We bought a new computer at the start of last week, and life has never been better – NOT. My sister-in-law is quite scathing about the state of new computers, pointing out that no other industry would get away with selling products in such a shoddy state of half-finished mess. Who would buy a shirt with half the seams still to be sown, a collar that only works if worn with an expensive scarf, and all the buttons provided in a separate bag? That, she claims, is the state of most new computers, and it is hard to disagree.
Most of my week was spent fighting our home network, trying to coax various bits of the machine into communicating, rooting around to locate old software install disks, etc. An absolute nightmare, and not even over yet as we have had to conclude that some problems can only be down to hardware failure (a non-responsive USB port and a network card with that hateful thing, an intermittent fault). In fact, this is a pretty good metaphor for Parkinson’s. On good days, most of your body works with only minor patience and jollying along needed, while on bad days parts of the body system just refuse to respond at all. At times the shifts can be really sudden. You’re walking along fairly happily and BANG your legs stop working and your feet stick to the ground (so moments later it starts to rain). Such fun.
Positive development of the week, though, is that I have started to see a speech therapist, and that much to my surprise her suggestions seem to be rather helpful. Okay, the first session was spent teaching me how to breathe, a task that I have successfully accomplished without outside help for the last 50+ years, but it now appears that I have been doing it wrong, breathing in when I should have been breathing out, or possibly vice versa. That didn’t impress me too much, but subsequent sessions (3 per week, so this woman really has a lot of time for me) have focused on getting me to speak louder and slower, and on getting rid of my Parkinsonian tendency towards a pre-pubescent pitch. I can do it, but not for long (yet), so much of the work involves recognizing the problem, becoming aware of when my speech slips, and training to make clearer speech more like second nature. By the way, when Ms Therapist took my history, she asked if I thought my wife was going deaf as apparently lots of Parkinson’s patients simply refuse to believe that the problem is with their speech. I don’t think Marie is going deaf – lots of people have been asking me to repeat things for years – but in a show of loyalty she had been wondering about it herself.
My speech problems also involve my mouth being generally rather dry and going completely, spectacularly arid when I am stressed – my tongue sticks to my palate, my lips stick together, I can’t swallow, and pretty bloody miserable it is too. The general dryness may well be a side effect of drugs, although I manage also to suffer from the more common Parkinsonian dribble (which is not actually caused by too much saliva, but by ‘forgetting’ to swallow).
Dry mouth is annoying, arid mouth debilitating, and dribbling rather embarrassing. Sipping water gives some instant relief but is of little long-term help as water is too wet – basically, what you want instead is something slightly slimy like saliva that will coat the surfaces of the mouth and stay there. Thus, if I weren’t already straining against my belt, I could perhaps solve the problem by sipping cream or constantly sucking lemony sweets. As it is, the only other option is fake saliva made, somehow, from pigs’ intestines. I have tried it, and believe you me: I’m not going there again!
Most of my week was spent fighting our home network, trying to coax various bits of the machine into communicating, rooting around to locate old software install disks, etc. An absolute nightmare, and not even over yet as we have had to conclude that some problems can only be down to hardware failure (a non-responsive USB port and a network card with that hateful thing, an intermittent fault). In fact, this is a pretty good metaphor for Parkinson’s. On good days, most of your body works with only minor patience and jollying along needed, while on bad days parts of the body system just refuse to respond at all. At times the shifts can be really sudden. You’re walking along fairly happily and BANG your legs stop working and your feet stick to the ground (so moments later it starts to rain). Such fun.
Positive development of the week, though, is that I have started to see a speech therapist, and that much to my surprise her suggestions seem to be rather helpful. Okay, the first session was spent teaching me how to breathe, a task that I have successfully accomplished without outside help for the last 50+ years, but it now appears that I have been doing it wrong, breathing in when I should have been breathing out, or possibly vice versa. That didn’t impress me too much, but subsequent sessions (3 per week, so this woman really has a lot of time for me) have focused on getting me to speak louder and slower, and on getting rid of my Parkinsonian tendency towards a pre-pubescent pitch. I can do it, but not for long (yet), so much of the work involves recognizing the problem, becoming aware of when my speech slips, and training to make clearer speech more like second nature. By the way, when Ms Therapist took my history, she asked if I thought my wife was going deaf as apparently lots of Parkinson’s patients simply refuse to believe that the problem is with their speech. I don’t think Marie is going deaf – lots of people have been asking me to repeat things for years – but in a show of loyalty she had been wondering about it herself.
My speech problems also involve my mouth being generally rather dry and going completely, spectacularly arid when I am stressed – my tongue sticks to my palate, my lips stick together, I can’t swallow, and pretty bloody miserable it is too. The general dryness may well be a side effect of drugs, although I manage also to suffer from the more common Parkinsonian dribble (which is not actually caused by too much saliva, but by ‘forgetting’ to swallow).
Dry mouth is annoying, arid mouth debilitating, and dribbling rather embarrassing. Sipping water gives some instant relief but is of little long-term help as water is too wet – basically, what you want instead is something slightly slimy like saliva that will coat the surfaces of the mouth and stay there. Thus, if I weren’t already straining against my belt, I could perhaps solve the problem by sipping cream or constantly sucking lemony sweets. As it is, the only other option is fake saliva made, somehow, from pigs’ intestines. I have tried it, and believe you me: I’m not going there again!
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