Sleep Apnoea and why you should know about it

This is not fiction but it is a horror story many people don’t know they’re living in.

This video was recorded by a friend, worried by his wife’s interrupted breathing at night. It’s here with their permission because he used it to convince his GP she had Obstructive Sleep Apnoea (OSA) which is a killer.

There are different kinds of OSA, some central – to do with the brain – and some more peripheral involving blocked sinuses or collapsing nasal canals. They all stop the sleeper from breathing, sometimes hundreds of times a night, without them noticing. They wake up tired, often fall asleep during the day, including while driving, Some drivers have killed other road users due to this disorder.

But it’s often the sleeper themselves most at risk of dying because it deprives the brain of oxygen, and while the brain will keep pushing the body to breathe as carbon dioxide levels rise, it can’t overcome the physical obstruction itself. The result can be cardiac arrest or stroke.

If it’s you, your partner may have noticed your snoring and put up with it for a long time. Snoring isn’t glamorous, is it? But don’t ignore it, have the discussion my friend and his wife had and get an assessment via your GP. It will involve an overnight test and it could save your life.

So what can be done about it? Depending on your lifestyle, you might be advised to lose weight (too much of it can make your neck muscles floppy), reduce your alcohol intake (does much the same thing). Treatment includes the CPAP (Continuous Positive Airway Pressure) which pushes air into your airways via a mask so you don’t have to drag it in by your own effort. There are also devices that keep your bottom jaw in place if the apnoea is caused by your jaw and tongue falling back into your throat while you’re asleep. And the most minimal of interventions, the strips that keep your nasal passages open if these are inclined to collapse.

Watch the video, hear those agonisingly long pauses in my friend’s wife’s breathing, and take action if it could be you, Be informed; don’t die of ignorance.

The British Snoring and Sleep Apnoea Association (BSSAA) has information, also the British Lung Foundation.

Dupuytren’s Contracture – impact on work & leisure

Thand with Dupuytren's contracturehese are my hands. They haven’t always been like this but my mother’s were, in her later years, and at the time I really didn’t understand the implications. Somehow, I managed to believe that not uncurling her fingers was almost wilful and that she could if she really wanted to. Now I know she couldn’t. See the tiny nodules and pads on my right hand, white against pink? They’re quite new, the disease is active. See my left hand? If I fell off a cliff I could dangle from that pinky for hours because it doesn’t move and nor would it hurt. Left to my fate, I would eventually be a skeleton held defiantly and comedically in place by just that one finger.

The cause is over-enthusiastic connective tissue which first forms nodules, usually in the hands but sometimes in the feet where it’s called Ledderhose. These nodules gradually expand to form cords, and the cords tighten over time like a pulled thread in your best sweater, dragging the finger down into the palm. What causes the nodules and the cords though is anyone’s guess. There are indications of an autoimmune component with a genetic predisposition linked to north European heritage.

Treatment includes using a needle to disrupt the cords (needle fasciotomy), collagenase injection (an enzyme that dissolves the affected tissue), open surgery, and in some instances, radiotherapy.  For many people – maybe most, the results are temporary. This disease won’t be messed with. Upset it and it’s back with a vengeance ready to make you stick your finger in your eye when you wash your face, turn putting on gloves into a wrestling match, and leave you with a two-finger salute you never intended. Right-handers struggle with handshakes – do they avoid them and risk seeming stand-offish, or carry on regardless and hope the weird finger-in-the-other-person’s-palm thing doesn’t freak them out? Mugs are hard to hold, anything you aim a grab at can be knocked away by the curled-in digits before the remaining ones have got a grip, your typing skills go AWOL, and just try applying sunscreen, shampoo, or moisturiser.

There is no cure.

On the positive side, it isn’t life threatening, it doesn’t seem to affect any other body part (but cf feet), and give or take the inconveniences of grip and grasp, it’s hardly on the map when it comes to disabling conditions. Or is it?

Professionally, for me it wasn’t a problem beyond the fact that I couldn’t use a mouse so had a graphics pad installed on my computer. This was fine until hot-desking became a thing and, reminiscent of my own failure to appreciate my mother’s problems, managers serially failed to grasp that I couldn’t, well, grasp and needed a dedicated PC.

But what about other professions where hands are critical? I’ve heard of musicians having to give up playing, a physiotherapist unable any more to apply therapeutic manoeuvers, a vet who found himself without the rounded full-palmed touch he needed both for diagnosis and making an animal feel safely held. There is research but it isn’t very high profile and more participants are needed.

So here’s the question: if you have Dupuytren’s and you’ve had to give up your work or something else important to you, would you warn your children about it, suggest they choose a different profession or interest, one that wouldn’t be affected if it turned out they had the condition? Or would you let them follow their dreams and then wish you hadn’t if they had to give it all up because of some rogue tissue not enough people were interested to help figure out how to stop? If even a smidgen of that is a ‘yes’, then please consider contacting your professional body if you have one, and asking how many of its members are affected and how many have had to give up or reduce their professional activity as a result. Let me know what you discover and I’ll see what can be done with those data by way of raising the profile of the condition and making it a meaningful thing to people it doesn’t (yet) concern.

Please also consider becoming involved with research towards understanding more about this ridiculous disease and eventually putting it back in its box.

This is the UK register.

This is the British Dupuytren’s Society.

This is the International Dupuytren Society

This is the Dupuytren’s Disease Support Group on Facebook

 

[edited 24th April to add International Dupuytren Society link]

 

‘BBC Dad’ – a viral video and a flak storm

There can’t be many people who haven’t seen the unfortunate chap trying to give a serious interview on live TV while his children invade his home office and a woman in the background does one of the best unscripted comedy extractions ever seen. The interviewee was political scientist Prof Robert Kelly, an expert on North Korea, and Mission Impossible Woman was his wife. At almost the same time as the ‘comedy gold’ took off, the internet laid into Kelly with judgments ranging from accusations of abuse (he’s a controlling, authoritarian man of whom his children and his wife are clearly terrified) to assumptions that the woman was the nanny based on her Asian appearance. The latter was quickly denounced when the actual evidence emerged and a new storm on the matter of racism began.

The abusive control freak, though? Watch the video – yes he pushes his daughter away while staying focused on the interviewer, and yes he tries to keep a straight face. But this was live TV remember? His daughter sits down nearby, not at all cowed by being held away from the screen; and the straight face only barely holds. Kelly’s parents said it was hilarious and that the kids probably thought it was one of their grandparent Skype sessions.

Another perspective, understood by parents working from home whose credibility is frequently threatened by unplanned domestic intrusions, felt his pain: ‘Oh Robert Kelly. We’ve all been there. All of us, and many of us more than once’. It’s 2017 and that’s how it works.

But beyond making judgments for which we have no evidence, I think there’s a really important thing we can learn from this and that’s to change our image of credibility. If Kelly had felt able to draw his daughter in instead of pushing her away and was accustomed to doing so in such situations as this, and if the rest of us could bring ourselves to understand him as an expert with a small child snuggled under his arm, this flak-storm could never have arisen. Surely credibility comes from knowledge and communication, not from pretending that experts don’t have a domestic life, a position that’s surely a leftover from times when men ‘went to work’ and women looked after all the noisy, messy stuff at home, out of the way.

For me it’s animals – cats marching across the keyboard or chin-rubbing the camera, dogs barking at doorbells, or neighbours, having not received an answer at the front, coming through the garage to hammer on the utility room door just in case I’d rather open that one where I can’t see who’s there. I’ve never done live TV but I promise I’ve discreetly shoved and quietly hissed my way through conference calls and the occasional professional presentation. Kelly has my admiration, as does this weather man who was more dignified than either of us.

Clip credit YouTube

Clip credit YouTube

 

Update 19th March 2017: This video appeared recently, spoofing the original by showing how a multi-tasking woman would have managed. A cheap shot at men? Well yes. Funny? Very. Also though inadvertently but exactly illustrating the revised image of expertise I suggested above. I might have requested a hair-and-makeup break when the bomb came in though …

 

 

 

 

 

 

‘What does psychology have to offer at end of life?’ – an EAPC re-blog

In her well-articulated article, Dr Jenny Strachan, Clinical Psychologist, Marie Curie Hospice, Edinburgh, United Kingdom, talks about what it is that psychology has to offer when there is no mental health problem to treat:

The ‘science of mind and behaviour’ has many branches. Developmental psychology explores how our minds and behaviours are shaped by our early years’ experiences. Cognitive neuropsychology investigates how they are determined by the structure and functions of the brain. Social psychology considers the influence of the groups, large and small, in which we belong.

If psychologists in palliative care stick to a narrow, ‘clinical’ interpretation of the role, that is, direct treatment of disorder, we miss an opportunity to promote and preserve the wellbeing of all our patients. Not to mention the wellbeing of fellow staff.

Psychology is not a complementary therapy. It should not be thought of as an ‘extra’ that we add in for the patients who are struggling. It is the theory-driven, evidence-based study of being human, and it has something to offer us all.

Exactly. Psychology comes from an academic study of ordinary people of all ages behaving the way people do in the range of conditions they encounter. It deals with extremes, of course it does, but it is rooted in normality and as such has always been more able to distinguish the extraordinary within that context from the extraordinary that marks illness than disciplines defined by the illness model of behaviour. When bad things happen to people – abuse, terror, war, poverty and deprivation – it should be no surprise that personal survival depends on making the best, consciously and unconsciously, of one’s own psychological defences. This is adaptive and normal even though its expression may seem far from being either.

Strachan is talking here about terminal care but as a clinical psychologist for adults with intellectual disabilities, that was our approach before the emphasis on therapy took hold. There was triumph in finding a way for someone to use a cash point independently, in devising a one-off experiment to establish reliability of eye-pointing for a complex decision or assessing whether or not a man accused of masterminding a criminal act was faking his disability so as to appear incapable, and enabling a woman about whom many of us had concerns regarding her apparent passivity, to show us she knew exactly what getting married meant and that she wanted to get on with it.

To me, therapy is a last resort for most people because it means we’ve failed as applied psychologists to promote well-being as a key activity, whether with vulnerable groups specifically or in society at large. Our discipline establishes and extends bodies of knowledge in every area affecting humans, from building design to neurobiology, group processes and social influence, the impact of the prenatal environment, causes and management of criminality, and the social dynamics of ageing and dying. Which begs the question – why are we so focused on delivering cognitive therapy to people who may not have needed that at all had we put the same effort and priority into prevention and resilience?

I see Strachan’s article as a call for psychology to re-establish itself as the multi-dimensional science it is; one that, instead of spending all its time pulling people out of the river, is able to look upstream to see what is pushing them in*.

 

 

*This is a paraphrasing of a quote by a senior nurse in (probably) the Nursing Times at least thirty years ago and for which I can no longer find the source. The idea has been around that long and still it seems new.

Feeling anxious? Try this breathing gif

//platform.twitter.com/widgets.js

 

Edited to show Giphy as the source of the graphic.

You got a new Echo, now what?

The Amazon Echo (also Dot) has been available in the US for only two years and it’s even newer to the UK.  Maybe you got one for Christmas and you’re wondering where to start with it – the instructions in the box are a bit sparse, it must be said. Listed below are some links and tips born of adopting a small Echo zoo when they arrived in the UK in October/November.

  1. It’s interactive, you speak to it and it responds. Mostly it does what’s expected but sometimes it doesn’t, much like your cat. You won’t go far wrong if you think of it as slightly more domestic pet than gadget.
  2. Its repertoire is expanding all the time so keep checking up on its skills.
  3. Skills? What skills?! Ok, we’ll come back to these.
  4. First things first – did you download the Alexa app? Good, that’s how you get connected and it’s also where you set your location so it knows your time zone and all sorts of other things relevant to the information it can give you such as the weather, travel, and – ahem – the time.
  5. You can find a bigger version of the app on your computer. Go to alexa.amazon.co.uk and locate your device, you can run or adjust a lot of things from there.
  6. You probably have an Amazon account if you bought the device for yourself, but what if it was a gift? The recipient – you or the person you gave it to –  needs one or the device won’t connect to anything. It doesn’t have to be a paid account, it’s a place where data from the device is stored.
  7. So now you have your Echo connected and it knows where it lives. Run through the list in your app or on-screen and get to know it, then go looking for skills. They’re still a bit US oriented but they’re mostly free and they add depth to what your Echo can do. Choose news sources to add to your Flash Briefing, link your Spotify account if you have one, ditto Audible thecho app clipen you can fall asleep while Alexa reads to you or works through your favourite playlist. You can set a sleep timer so it doesn’t play all night; just say ‘Alexa (or Echo or Amazon, whatever you’ve named it – sadly Mrs Shufflebottom isn’t available) set sleep timer for 20 minutes‘ and you’ll hear either, ‘Ok, I’ll stop playing in 20 minutes’, or ‘Sleep timer set for 20 minutes’.
  8. Radio stations are accessed via TuneIn which is the free default skill for that purpose. All the main BBC stations and many of the local ones are listed although it can be tricky getting the Echo to recognise some of them. TuneIn seems apt to drop its feed occasionally too which means the station suddenly stops playing even if your device is still connected to the internet via your wifi. If that happens, do remember to give it the ‘Stop’ instruction or you risk having the bejabbers scared out of you when it comes back on some hours later. The Stop command also lets you try restarting the station straightaway, usually successfully.
  9. Your diary: Echo uses Google calendar. It won’t integrate with an iOS calendar so if you want to ask about your forthcoming appointments, you’ll need to sign up with the Big G. It’s painless unless you’re someone who breaks out in a rash at the very idea of Google knowing what you’re up to.
  10. Sometimes it won’t hear you, sometimes it will hear its name, or something that sounds similar in the middle of a TV programme and try to respond. Coughing can trigger a device named Echo and ‘electric fence’ woke up one of my Alexas. Quite what gave rise to the response, ‘I haven’t got any money‘ is anyone’s guess.
  11. Talk to it. ‘Good Morning‘ gets you a good morning back and often a daily factoid; request a Knock-Knock joke or a haiku or just something funny; challenge its ancestry or place in the AI hierarchy with Who is your master? Where do you live? Do you know Siri? Teenage boys will no doubt find many other questions to ask. The software is sassy but prim and it can handle itself, but do remind its interrogators that their remarks will be stored on your Amazon account where you will review it in time for next Christmas.
  12. Ok, links:
  • The unofficial Amazon Echo user forum  Largely helpful although some of the most knowledgeable can also be the most, erm, problematic. T’was ever thus.
  • Love My Echo More of a newsletter and often contains tips and tricks, including nerdy interactions rooted in Star Wars and Star Trek. Try ‘Alexa, beam me up‘ or maybe ‘Alexa, start the self destruct sequence’.
  • Your manual. Read it so that when someone on a forum thread gets antsy, you can advise them that, yes, you have RTFM and the FM didn’t help which is why you’re here.
  • C|NET’s list of commands, including Dad jokes because obviously …
  • Easter eggs – little hidden gems the software builders put there for programmer types to find and the rest of us to pretend we found after we read the list.
  • A discussion of data storage – where does all that stuff your kids (or your gran) yelled at it actually end up and who can see/hear it?
  • Some problems and fixes from C|NET.
  • More Easter eggs via the Business Insider. See how quickly we’ve moved on from how can I make this work to how silly can I be with it even though I’m a proper business type?

Finally, Serious Face now, there’s a great deal of potential in this device for use as assistive technology and a good many people seem to have bought them for elderly parents and people with failing vision or other disabilities that limit screen or touch use. Be aware of the data storage issue – if you’re running the app you’ll see (or hear) whatever your gran puts into it. If that’s her shopping or To Do list and you’re the one actioning those, well great, but she needs to know it ALL goes on there.

If you can manage that, or if it’s you operating the system on your own behalf, there are two skills you might want to consider. Ask My Buddy keeps a list of contacts that can be alerted by the user if they need help. Saying, ‘Alexa ask my buddy to contact X’ will trigger an email/text/phone call to that person while , ‘Alexa ask my buddy to send help‘ will result in alerts being sent to all the contacts. Obviously it’s not a substitute for emergency services but may be handy if the user is unable to get to a phone but is within shouting distance of an Echo device. It’s free for a limited number of contacts.

The other skill is called Debby Onsite and it’s geared to giving reminders about where you put something. It can also, if you’re up to a string such as, ‘Alexa, tell Debby onsite the timer means let the dog in‘, tell you what the alarm or the timer that’s just going off is supposed to indicate. Just say, ‘Alexa, ask Debby onsite about the alarm,’ and the response is something like, ‘You’ll probably find the alarm means let the dog in’.

These are early days, this device isn’t Mia but nor is it HAL (that said, if you ask it to open the pod bay doors …). It has a long way to go, but its capabilities even now are very promising and it can only become easier and more useful as the software and skills ranges develop. Meanwhile, chat to it, let it read to you, play music, cheer you up; set timers and alarms without getting it covered in flour or cat litter, expect the unexpected. Say ‘please’ and I swear it blushes. And if you’re into IFTTT, start writing your own skills for those of us who aren’t 🙂

 

Disclaimer: these are my own discoveries made through recent ownership of Echo devices and trawling of support forums. It’s a non-exhaustive, non-technical intro to the sorts of things I’d like to have known when I first set mine up, and it’s likely to be time sensitive in that much may change in the coming months. Please use the links to follow up on technical issues because you really really don’t want that from me!

The Recovery Letters

The Recovery Letters is an online project started by James Withey who invited anyone who had experienced depression to write a letter that might help others. In his words:

The Recovery Letters are all written with the intention to try and alleviate some of the pain of depression, to make the loneliness slightly more bearable and above all to give hope that you can recover. We see recovery as self defined but can include living alongside symptoms or being symptom free, being stable on medication or medication free but most of all living a life with some meaning. [They] are written from people recovering from depression, addressed to those currently suffering.

Depression doesn’t discriminate. It’s not interested in who or what you are, how much you earn, or your professional successes. We know this, or we should, from the numbers of high profile sports and TV personalities beginning to disclose their struggles with the condition, although people still express disbelief – what could he possibly have to worry about? or she’s such a strong person, you’d never think that could happen. It does though, because depression often comes from nowhere and drains all those achievements of value, making them worthless and turning the person who achieved them into a fraud – a burden to everyone around them.

These letters are real; they’re not fictional and they’re not all easy to read. My former boss, past chief executive of a large mental health trust, has a letter there, and so have ISome of them will be coming out in a print book next year, published by Jessica Kingsley. A companion maybe for people still finding their way through; a primer for those wanting to know more so they can try to understand or help someone who may be drowning while wearing the bravest of faces.

James asks that visitors to the site please read the About page  for context before going on to read the letters.