Sharing Therapy Moments

I had a couple of very lovely 'therapy moments' today. I am really enjoying my placement - working with adults with communication problems has been very rewarding. 

 

Lovely moment 1. I see a patient with Multiple Sclerosis every day to work on improving her voice quality and self-monitoring of her understanding. She's about 60 and had MS for 40 years of her life. She is such a pleasure to work with - always engaged and motivated during therapy. No matter how tired she is or if she had a bad day, she would always want to do work with me. A dream patient! Well, today she reported that she has been feeling a lot more confident as a communicator and finds that her speech is getting clearer. She said she had a wonderful conversation with the other patients in her room yesterday and not once did any one of them asked her to speak louder or to repeat because she wasn't intelligible, which were frequently what her listeners had to do before we started our therapy. She said she felt good to be part of the conversation and was pleased that she remembered the strategies we've been working on and how well they've worked. 

I am most certainly not saying that I'm a miracle worker here. This lady's progress is because she has been so 'switched on' throughout the therapy process, making the effort to work on her homework everyday. Such engagement and motivation are key factors for good prognosis during any therapy. 

Lovely moment 2. With a lady with Vascular Dementia. She's 80 years old. Bless her. She also has a gamut of many other medical difficulties. I am currently doing assessments on her to find out what her swallowing and speech difficulties are. Saw her once before and we didn't hit off on a particularly great start. She was a bit agitated and didn't really want to do much with me.

But you need to understand that her behavioural difficulties are partly due to her medical conditions, and not completely due to her trying to be a 'difficult patient'. This is something that not many people comprehend. People who have brain lesions, injury or trauma at the cerebral frontal lobes or at the right hemisphere are likely to exhibit behavioural and cognitive impairments. This second time, I prepared myself that I might need to negotiate with her because I aimed to complete all my assessments. She was great in terms of agreeing to do them with me. During the assessments, she kept saying 'I can't do it' and pushed the booklet away. We had a very good chat at various times and talked about how she feels about her communication. Apparently she feels she can't communicate as she used to and people often say they "don't understand what she is saying". Her awareness that her condition is deteriorating has been eating her self-esteem and it was now clear to me why she was previously unwilling to engage. While she does have significant cognitive problems, affecting her ability to follow and participate in conversations, but if people can slow down or use more simple language, she can and is able to converse.  All I did was to listen to her and told her to be patient and try to focus on the positives. I think when we get ill, it is only too easy to focus on the negatives. Sometimes, when people are feeling discouraged, what they really need is simply active listening. Well, I did just that and felt very nice that I managed to help make her day a little brighter today. 

 

Doing what I do, I've come to realise that one's identity, self-perception and self-esteem can be so tightly intertwined with one's ability to communicate. I quite like this quote from Schiffin, a social psychologist, "Conversation is a vehicle through which selves, relationships and situations are talked into being." 

Schizophrenia

Just felt like writing a bit on schizophrenia today. I've got a patient on my caseload who had a stroke a couple of months ago and has a history of schizophrenia. Before I studied about this psychiatric illness, I remembered that I used to think it was all about having multiple or split personalities. But it turned out that that was more a myth perpetrated by the media than the truth. Schizo is actually more accurately defined as the splitting of mental functions - a discrepancy between thinking and feeling. The jury is still out as to what causes it but there is probably a genetic link to it and relates to a chemical imbalance in the brain. Many suffer from debilitating hallucinations and delusions which could be firm convictions of what they are perceiving even when you show them evidence that indicate otherwise. 

Check out this video:

http://www.youtube.com/watch?v=H_jYqSA_fJk

There is nothing scary about mental illness. I believe there is a continuum running from 'normal people'  (what is 'normal anyway?) to people who have psychiatric disorders e.g. obsessive compulsive disorder, schizophrenia, personality disorders etc. Interestingly (for me), people with mental disorders do develop speech and language difficulties since their communication with people is often negatively affected. They might even be unable to speak or have severely disorganised speech ('word salads'). Next week, I'm going to try to find time to assess my patient to try to get a reliable yes/no response and to assess his level of understanding. Since his stroke two months ago (which appeared to be quite a serious one), he had no spoken output at all and his level of understanding has been a big question mark for the team. So no one really knows how much he really understands since he can't really gesture or talk. Hope I'll get somewhere with him next week!

Ah! Brits!

I have been reading an interesting book about British behaviour and conversation codes. It tickles me because for the past year and the half, I've experienced all their quirks but was not always quite quick enough to discern their meaning between the lines. Sometimes they annoy me because I don't 'get' precisely what they are saying; but at most times, they leave me with a one of those inexplicable silent smile or smirk. 

1. Brits love irony

Irony means saying the opposite of what you mean. The British may not always do that, but as a non-Brit, you really gotta be alert to the possibility that they will be! I've long learnt to never take what they say at face value. 

E.g. when you ask them a straightforward question such as "How are the children?" Be equally prepared for a straight answer "Fine thanks", and for an ironic one, "They are delightful - charming, helpful, studious, obedient through and through." To which the reply should be, "Oh dear... one of those days aey?"

2. The understatement rule

Apparently, most Brits frown upon earnestness, gushing, boasting, expressive zeal and emotion. (Just remember they are the opposite of Americans!) They would rather feign and go for deadpan indifference or calm understatements. I remembered that I was really grateful to my Phonetics tutor for being such a supportive tutor and was openly expressing my appreciation to her. She ended up looking stony as if I had hit her handbag on her head. There was a very awkward silence. Later my Brit friend said, "Ermm... you just did quite an un-British thing there, which probably embarrassed her [the tutor]... um Brits tend to say 'thank you' with a bit of wry humour and try to keep it understated." Alright then.  

So a debilitating, critical illness may be described as = "a bit of nuisance"

A truly horrific experience = "not exactly what I would have chosen"

A sight of striking beauty = "quite pretty"

An outstanding performance = "not bad"

An act of abominable cruelty = "not very friendly"

An unforgivable stupid misjudgement = "not very clever"

A disgustingly filthy restaurant with unbelievably rude service = "I wouldn't recommend it"

To be able to discern what is between the lines, you really have to watch their facial expressions (especially that raised eyebrow!) and tone of voice. These are the betrayers. Now I know what my classmates mean when they say "I've barely started my revision." Hmm. 

3.  The self-deprecation rule

This goes hand in hand with their tendency to understate. This is customary and is always done so subtly, you really have to catch it when it happens! How many times I must have taken what my friends said at face value and didn't realise that I had completely misinterpreted them! 

Here's a good example from the book: 

So you meet this man and find out he is a brain surgeon. When you ask him why he chose this profession, he might say, "Well, em, I read PPE (Philosophy, Political Science, Economics) at Oxford, but found it all rather beyond me. So er, I thought I'd better do something less difficult."

You laugh (of course), saying that brain surgery surely couldn't be easier. He then quickly enters into another self-deprecation, "Oh no, it's nowhere near as clever as it's cracked up to be. To be honest, it's like plumbing with a microscope - except that plumbing is probably more accurate."

Then when you later find out that he had a scholarship because of first class honours at Oxford, he says, "I was a dreadful little swot." 

The Brits are a quite funny sort, aren't they? 

Finding Hope and Focus

Day 5: Neurological Ward

I am at another placement now. This time - a hospital. I have been observing therapy sessions of my clinician with a lady  who recently suffered from a hemorrhage (vessel bleed) on the right side of her brain. She is a young mother with a 4 year old child. Her hemorrhage is related to other cardiovascular and neurological disorders that she had since young. Very sadly, the part of her brain that is most severely damaged is the hippocampus. (The hippocampus plays a critical role in the storage and encoding of memory.)

As such, she now has severe amnesia which affects the storage of new events in her long term memory. New events that we perceive or experience may be coded into our store of long term memory with the help of the hippocampus if our brains deemed that should be so. This lady would say something and forget that she said it within 5 minutes and repeat it again. She is often disorientated as she can't retain the memory of what she did that morning, what day it is, and what she did during therapy yesterday. This makes learning and recovery difficult. The prognosis for such memory disorders is often poor and it is possible that she may need 24 hours care for some time to come. It is obvious that she used to be a very articulate and intelligent lady before the incident. Like the tide, the memory loss ebbs and flows. The knowledge of this loss may be temporarily forgotten but when the memory of it returns, it hits her hard. And her cycle of grief begins again. How does one get over a grief that refuses to be remembered to be stowed away? 

Neurological (Brain) disorders express themselves in an incredible number of ways. Patients may be diagnosed with multiple sclerosis, traumatic brain injury (e.g. due to car accidents), brain tumors, stroke, meningitis, motor neuron disease, arterial venous malformation, etc. I meet pain and loss at this ward. I sense them sometimes when patients lower their heads down as they pass me, when their smiles betray a brave front, and when a young 30 year old man (with multiple sclerosis) asked me, "So what's it like out there?" The Buddha said suffering is a part of life. Suffering is a language every human being speaks. The Buddha also said cessation of suffering can come with mental discipline (the right mindfulness). But if a person's brain (of which the sense of mind and self originates) is damaged, how might this "right mindfulness" be cultivated in order for suffering to be ceased? 

But you should not think that all's gloom in the ward. I derive immense deep pleasure and learn a lot from supporting, interacting and working with them. Also present and revealed in gentle beautiful ways is beneficence. I meet her when I notice my bed-ridden patient (with a degenerative disease) holding hands with her blind and deaf husband, when I observe the dedication of the therapy team and nursing staff, and when I see the 71 year old mother of a patient sitting by her daughter every single day for hours.

"I find hope in the darkest of days and focus in the brightest. I do not judge the universe." Dalai Lama  

Clinical Enjoyments

It was a good day. I ran two sessions today. Both were successful, from my perspective. Of course there are always points for improvement (and I definitely take them onboard seriously) but in terms of the objectives I had set for each session, I was quite pleased at how they went. 

My first session was a speech intelligibility group, with three clients. In this group, there are two gentlemen - one is 73 years old, the other is 38 years old. I also have a lady, who is 50 years old. All of them had a stroke and consequently now have varying severity of language and speech disorders. As you might know, for most people whether you are right or left handed, the left side of our brain is the side that processes language and speech. All three of them encountered a stroke on their left hemisphere. Because their language and speech processing systems were damaged, they have both aphasia and speech apraxia. 

Both conditions are probably very unfamiliar to most people, unless you have them or have family members/friends who have them. Just to set the context, maybe I should explain a bit about the conditions most of my  clients have...  Aphasia is a language disorder that affects every aspect of language - understanding of spoken words, talking, reading and writing. E.g. my client might have trouble spelling at a one-word-level; or difficulty comprehending what someone is saying. Or reading might be very effortful at a paragraph level. The key thing to understand here is that aphasia is not just a difficulty in using language but it is also a difficulty in thinking. We might not realise this but we usually think in terms of language. Some of my clients reported that their ability to plan/reflect/know what they want to say or are saying is diminished. Their mind becomes somewhat 'blank' - languageless in an isolating sense. Almost as thought someone erased the blackboard in their minds. Or when someone says something to them, it simply doesn't quite register or click in their minds. 

Speech apraxia is a difficulty in planning and sequencing speech sounds. It is due to brain damage in the speech motor area. E.g. my client might say 'loung' instead of 'young', 'buflaytter' for 'butterfly', 'hhhhhandy' for 'handy'; 'defli' for 'definitely'. People with apraxia have difficulties initiating speech and in controlling sounds within words. Errors are very unpredictable. One moment it might be a bit better, in another moment, the sounds might not come out at all. E.g. sometimes if they want to say 'vest', the 'v' sound just doesn't roll out exactly when they want them to. But when they are not thinking about producing that sound, or if they are not trying hard to say that sound, the 'v' in 'vest' might come out smoothly and clearly. 

As you might imagine, aphasia and apraxia can be very isolating and frustrating. Relationships change. Work may no longer be possible. Communication becomes so difficult, it's tiring. To say that they make everyday, basic communication difficult is to understate the impact of their impairments on their daily lives, their self-identities and their loved ones. 

During our group sessions, we often discuss about issues surrounding coping and living with aphasia and apraxia. Today we spent two hours discussing strategies they could use to increase their listener's comprehension of their speech. Naturally, it led to a discussion about everyday barriers they face. These barriers may be external (e.g. strangers who interrupt them and do not give them time to speak; people who pretend to understand them when they obviously didn't, etc.); or internal (e.g. choosing not to talk to strangers due to low self-confidence; choosing to keep quiet during conversations for fear of judgement; embarrassment in stating upfront that s/he had a stroke so as to request for patience when communicating, etc.). We shared such a fruitful and engaging conversation. We laughed, shared, and listened. I was so pleased to see them spontaneously offering suggestions and being supportive to one another. Today, one of them said that the group sessions have helped him to feel more confident as a speaker outside of the clinic setting. :) In a way, over the past 12 sessions, I've seen them develop as a group. It's a lovely feeling being their therapist. 

What does 'disability' mean to you?

Shall we take a few moments and think.... what image comes into your mind when you think of the word 'disability'? What do you see when you think of that word? 

Someone who is blind? Deaf maybe. On a wheelchair? (That often comes up doesn't it?) With an illness? Possibly. Someone who probably needs quite a lot help or can't do basic things for him/herself? 

Years ago, a lady said this to me, 'You are a TAP.' 

'What? What does that mean?' I asked. 

'Temporarily Abled Person.'

That was something that started me thinking about how some of us tended to perceive ourselves and people with 'disabilities'. It's something that we don't usually talk about, if at all, because it can make people feel uncomfortable. Also, I guess if we don't see it, we just don't really think about it. 

One of the best, most important things I've picked up in my course is a refreshing, logical and ethical way of perceiving what 'disability' entails. It started with the World Health Organisation (WHO) who established that our old way of looking at 'disability' was way too simplistic at best and completely flawed at worst. We were missing the main idea of what it means for that person who is faced with an impairment - however temporary or permanent it may be. Previously, 'disability' was all about the person with the problem. It's his/her problem - deal with it. You are deaf because you have deafness. You have deafness because you are deaf. This is not only disempowering but it also sets up a consciousness that creates a false dichotomy between deaf and non-deaf; disabled and abled; non-normal and normal; you and us. But something's missing in this equation. What role does society play? Surely, I am 'disabled' as far as society 'disables' me as well? 

I may be say, on a wheelchair. But if no structural provisions are available around me to allow me to be independent (e.g. buses that accommodate me, MRT with lifts, buildings with ramps), now surely that disables me?  Taking another example of a person with deafness. The impairment is that this person can't hear certain sounds at a certain range of frequency. Perhaps s/he was born with a cochlear dysfunction. (FYI, it's very rare for a person to be completely deaf. People with deafness can hear but usually at a restricted range of frequencies and need sounds to be amplified.) But, according to the WHO (and to common ethical sense really), this is only a partial definition of his/her 'disability'. The other half of the equation - i.e. societal barriers - is equally important, if not more so. In other words, if he/she is denied access to a hearing aid or cochlear implant, denied admission to mainstream schooling or equal opportunities at work, then it is not that this person is disabled, but this person has been disabled. It is probably a reflection of social and cultural progress when people within the society are able to see beyond a person's impairment as 'his/her problem'; but to be attuned that 'disability' has many dimensions to it - of which you and I are a part of. 

the diving bell and the butterfly

An ordinary day. At seven the chapel bells begin again to punctuate the passage of time, quarter-hour by quarter-hour. After their night's respite, my congested bronchial tube once more begin their noisy rattle. My hands, lying curled on the yellow sheets, are hurting, although I can't tell if they are burning hot or ice cold. To fight off stiffness I instinctively stretch, my arms and legs moving only a fraction of an inch. It is often enough to bring relief to a painful limb. My cocoon becomes less oppressive, and my mind takes flight like a butterfly. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas's court. You can visit the woman you love, slide down beside her and stroke her still-sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realise your childhood dreams and adult ambitions. 

I've just finished reading this wonderful true life story by a man whose only means of communication is to blink. One blink means no; two blinks mean yes. Bauby had 'locked-in syndrome' since his brain stem stroke, a condition that made him a quadriplegic - trapped in a motionless body but alive with a beautiful mind. For the past two weeks, Bauby was with me as I entered his world on the tube. I read each word in a way I don't usually do for novels, as I realised how much effort it must have taken for him to express each and every letter. This was a young chap (father of two young kids) whose life completely misfired all of a sudden, yet he could reflect all of life's misgivings with such wry humour that made me smile and sigh at the same time. He communicates using an alphabet board. Not a usual ABC sort - but one that arranges letters according to the frequency of its use in the French language. So the 'listener' has to read out each letter on his board and watch out for his blinks that will indicate 'Stop, that's the letter I want'. And together, both Bauby and the listener spelt out and inferred what he wanted to say. 

Humour might get lost through this exchange, but it was the only thin thread through which Bauby was able to maintain his connection to the world that forgot him too easily. It's a Conversation in which was unsaid probably said more. The alphabet board was set up by his speech and language therapist actually. In a lovely way that reminds me of how meaningful my job will be, Bauby blinked:

The identity badge pinned to Sandrine's white tunic says 'Speech Therapist', but it should read 'Guardian Angel'.