Category Archives: neuropsychology

Learning to write with cerebral palsy and learning difficulties

My sister has cerebral palsy and additional brain damage (mostly to her right hemisphere) that has caused her to have severe learning difficulties and epilepsy. When she was adopted as a baby my mom was told she never learn to speak, let alone read or write. As she grew older the hours of speech therapy definitely paid off, and at 21 she can have as coherent a conversation as anyone (although she does sometimes need to repeat herself to people who don’t know her so well). However, whilst she has always been very chatty, her ability to read and write has wavered. I remember us being at school together (she is only a year below me in school years) and she’d be sent home with reading books aimed at 5 year olds when she was around 9 years old. It would seem as though she was learning to read quite well after you’d gone through the book a few times. She seemed able to read entire story books like Bif and Chip, if someone had gone through the book with her first, but it soon transpired that if you covered up the pictures, or made her attempt to read a randomly chosen page out of order then she was stumped. She’d memorise the books and regurgitate verbatim what someone had read out to her previously! I think this is a ‘trick’ common amongst young children learning to read, particularly because those story books are boring and repetitive.

For as long as I can remember her idea of handwritten words resembled something a 2 or 3 year old might scrawl when pretending to do “grown up writing”. A series of p’s that looked a bit like this:

With the arrival of a computer in our house it must be said that her ability to write single words did begin to develop but again she was merely mimicking what someone had shown her. It wasn’t uncommon to find a Word document saved under a name like ‘fsddh’ and open it to be faced with a list of ‘words’ such as Dog, Bog, Mog, Fog, Sog, Rog. It was a while before she began to put words together into sentences. The first one she wrote with no supervision is annoyingly burned into my memory.

It simply read: “ Olana is a fat pig”

She’d gone around the house asking different people to write down a single word from the sentence so she could copy it and put it together as a surprise.

Reading and writing has always been a part of her education, although I’d say it was never the main focus. Basic numeracy, social and ‘life’ skills were possibly the more important aspects, once she’d mastered writing her own name by hand. She still struggles with counting money but is more than capable of using a calculator for difficult sums if she needs to, she can also read time quite accurately these days.

In the past two years something rather different has happened when it comes to writing. She is now twenty one, and lives full time at an independent living centre for disabled adults, where she attends many different classes including numeracy and literacy lessons which are taught as an outreach class through the local college. In these she is slowly learning to put together her own words for the first time ever.  I think one of the most useful things she has done in conjunction with these lessons is to have joined facebook. It’s turned out to be a perfect medium for her to practice putting together full sentences. The last part of this post will be made up of direct quotes from her posts and private messages she has sent me. As you will see it is almost as if she has developed her own way of writing, whilst it may not be correct in terms of spelling and punctuation most of the time, it is still readable to those who know what to look for.

Here is the first message she ever sent:

August 2009

i ded not no nat d es on face book now

This isn’t too hard to understand if read aloud as if phonetically, it says ‘I did not know that D is on facebook now’. (D is our brother). The problem with reading out loud as if phonetically is that due to her cerebral palsy she doesn’t always pronounce words correctly, so she often spells them the way she says them, not as how they ‘should’ be said. For example a Remote Control is called a ‘remoke’ in our house.

I’ve tried looking at theories of language to find comparisons between the way my sister writes and development of reading skills but to very little avail. I have noticed that when she talks she often falls into the trap of over generalising a rule to words that are not regular. So that she will say things like ‘we drived home’ instead of ‘drove’, which is something younger children only begin to do once they start learning to read and write at school, but never did previously.

There are certain consistencies in my sisters use of language when writing that we’ve learnt to interpret (and although we have tried to correct her on these they have remained). Examples of these are things like always writing ‘Pes’ instead of ‘Please’, which makes some sense if you hear how she pronounces please in speech. The most persistent and confusing of all however is her use of  ‘ec’ instead of ‘ing’, so ‘going’ is always ‘goec’.

September 2009

i am goec to bed naw can i toc to u at 11pm pes

(I am going to bed now can I talk to you at 11pm please)

I’ve tried to work out why ‘ec’ has replaced ‘ing’ in her mind, some ideas are that when she pronounces ‘ing’ she is making a ‘cah’ or ‘kuh’ sound at the end so puts a ‘c’, or that on a keyboard capital G and C look quite similar so she’s confusing the two letters. It could even be a bit of both I suppose. If it is that she’s confusing G and C on a keyboard you would expect this confusion to occur in other words where g is replaced with c. I have found a few examples of this:

September 2009

can you pes gum up

(can you please come up)

October 2009

i am up set be gos alex hos goc naw

(I am upset because alex has gone now)

It seems that she will replace G’s with C’s when the G occurs in the middle or ending of the word, and will replace C’s with G’s if the word begins with a C. However, she does know that ‘Ch’ makes a different sound to a C on its own as is demonstrated in this example:

October 2009

i am sore fo chuteg a wa

(I am sorry for shouting at you)

Here she doesn’t stick with her usual ‘ec’ to replace ‘ing’ either. She’s made shouting into two distinct sounds created from ‘chu’ and ‘teg’, usually she never misspells ‘you’. Words ending in ‘y’ often become words ending in ‘e’ or ‘i’.. so Happy will be ‘hape’. I believe this is a common error made by young children when learning to write.

My favourite message from her was sent very early on and reads:

olana can u sop tacec the nec at of me i dot lic et won u sa i cut rit pes

(Olana can you stop taking the Mick out of me, I don’t like it when you say I can’t write, please)

I know it’s wrong that this made me laugh, but I never really took the Mick out of her (promise!)This referred to a private message she’d sent to our Mom asking her if she could get a new computer but she didn’t write the word ‘computer’ she instead wrote ‘cum pot’!  In all seriousness though, I think it’s fantastic that she’s doing as well as she is despite having suffered such severe brain damage, she continues to exceed ours and the medical professionals expectations daily.

Her ability to put together sentences is growing, although the words aren’t spelt all that well they are usually easy enough to decipher. We went to see Tim Minchin perform in December last year and her status became ‘I lic tim minchin’ (lic is like, although she probably wouldn’t say no to licking him either!) She also wrote this message on his facebook fan page:

faku tim fo a gut cho nysnat i am gated theat i cud not met you i wech you cyt ta ta am fran can you dot

(Thank you Tim for a good show last night, I am gutted that I could not meet you. I wish you could *something I don’t understand* can you do)

As you can see sometimes the messages aren’t always all too clear, and I still struggle to understand everything she writes. The problem we then have is she can’t read her own words back, whilst she has no trouble constructing her little sentences if you ask her to read what she has written say a day later she won’t be able to tell you.  Such as ‘i cum sot paec tec toc doc’ My best guess with this one is something like ‘I can’t stop playing tic tock doc?’ but I’ve no idea really.

She is also getting better at writing by hand, although her letters can still be quite big, she now spaces words out a lot clearer and will attempt capital letters where necessary.

The oddest thing about all of this I find is her comparably low ability to read despite her continued  progress in her writing skills. Her brain-damaged being mostly right-sided is consistent with the suggestion that language and writing abilities are predominantly processes controlled by the left hemisphere. However, reading is also thought to be dominantly a right-sided processes, the strangest thing here is her inability to not only read ‘proper’ sentences but also failing to read back things that she herself has written. I hope that she can continue to develop her literacy abilities as she gets older, although at 21 I’m not sure how far she can progress or what is already set in stone, I guess only time will tell but for now she’s doing just fine.

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Filed under brain damage, cerebral palsy, disability, family, literacy, neuropsychology, Personal

Let There Be Light! A breakthrough in microtechnology that is giving blind people back some sight.

I couldn’t imagine loosing any of my senses, least of all my sight. To go blind slowly over time must be one of the most challenging illnesses a person can have to face. Knowing that there is nothing that can stop a hereditary degeneration of your sight must be heartbreaking, to say the least. Just imagine having the memory of what a flower covered in morning dew looked like as a sunbeam touched the tip of the petal, or being able to recall how you used to look in a mirror but can no longer see yourself, to know that there are wonders beyond most peoples own imaginations that are possible to observe in a sunset and to have all of that knowledge, that discover, taken from you along with your independence has to be one of life’s most unfair consequences of genetic illnesses.

Like any disability that worsens over time you’d hold on to the hope that one day science will find a cure, but it would seem an unfathomable wish for them to cure blindness. This is why the news that came out this week of a microchip that has the potential to restore at least the basic functions of sight seems almost too good to be true.

Some forms of blindness are caused by a degeneration of the photo-receptors within the eye. These are the cells that allow us to interpret light signals into meaning, by building on signals received about colour and brightness. With this information our brain is then able to construct the images that allow us to perceive the world around us. Clever, clever nature.

In people with degenerative eye conditions such as retinitis pigmentosa (RP) the optic nerve is left mostly intact. There are two ‘treatment’ options available at the moment, the first involves forms of gene therapy and other protective factors, which have been shown to slow degeneration in people with this and similar conditions. However, this has to be received at an early enough stage of the degeneration.  The second option is what this current research focused on, and sounds more like something from a science fiction film than reality. They invoke electrical stimulation of the surviving retinal networks to try to produce some form of visual experience in people who’s level of degeneration is beyond that which might be helped by the other form of ‘treatment’. More specifically in this case a microchip is implanted under the transparent retina to act as electronic man-made ‘replacement’ photoreceptors.

The chips are able to sense light and create signals from this at many pixel locations. This is achieved using “microphotodiode arrays” or MPDA’s.  There are 1500 pixel generating arrays on a chip, and each acts independently as a light sensitive electrode, this is subsequently able to provide an electrical stimulus to the neurons nearby. In this way it is unique to other approaches, within each element is the electrode set allowing for the electrical stimulation of neurons to be caused by the reception of light. There are also photodiodes found within the chip which allow for varied amplifications to be transmitted based on the level of light reception.

With the chip in place within the eye, the photodiodes are able to capture an image each, several times a second, simultaneously.

Illustration from the original paper found here . It gives a better demonstration of the set up of the microchip with the electrodes and MPDAs, and also a nice picture of an eye is always a winner. (I can remember dissecting an eye in alevel bio, it was fascinating)

It’s enough to make your head hurt to think about, I mean really. There are 1500 elements able to transmit signals from the photodiodes, which are able to capture an image in a ridiculously small time frame and transfer this into meaningful information by way of electrical impulses to the bipolar cells that would have originally received information from the rods and cones of the eye. With the amount of current that is sent by each electrode determinable by the brightness recorded by each photodiode.  Oh, did I also forget to mention that the chip that all of this occurs on is a mere 4mm square in size!

In this trial study of ‘the chip’ three people with hereditary degenerative blindness were given the implant. They were tested 7 to 9 days after the implant with some psycho-physical tests. If they achieved well on these they went on to be tested for recognition of everyday objects. Due to the electrical nature of the chip it was possible for two test conditions to be employed for all these tests, a chip ‘on’ and chip ‘off’ baseline condition, which allowed for statistically significant results to be acquired.

All three patients were able to detect single electrode single pulse simulations, the perception of this varied slightly between patients but they all reported seeing the stimuli.

They went on to distinguish letters from one another, patient one begin able to tell the difference between U and I, and patient three going further by successfully distinguish four letters presented at random. Patients were also tested on pattern recognition, two of the three were able to correctly distinguish the direction of grid patterns, showing that the chips have high spatial resolution capacities.

Patient two show better recognition in further tests, and interestingly was the only patient of the three to have the chip placed in a slightly different part of the eye. In these cases the patient, identified as Miikka, was able to name objects presented in an unknown dining table situation, including distinguishing between a fork and spoon, as well as an apple and banana.  In subsequent optional tests he went on to read his name (a clip that many will have seen on the news) and pointed out the fact that they’d made a spelling mistake!

The fact that they’d only had the chips in place for just over a week and this was having an impact on their perception of light is impressive enough, but for one participant to go on to read their own name is quite incredible for a first trial.

It’s difficult to find fault in this study, you could say it only worked very successful on one subject, but that wouldn’t be fair at all. It seems promising that all of the patients were able to respond to light stimuli in the first instances.  There are any number of individual differences that might account for the relative different levels of impact that the chip had on all three participants.  One might try to say the media exaggerated the findings in some way but the majority of the reports I saw were very careful to give a full background of the type of blindness that this is appropriate for, as well as the fact that it is very new technology and that it doesn’t ‘restore full sight’.

No questioning then that the results are truly remarkable, and although the success wasn’t replicated in all three subjects, all involved had slight improvements above the level of vision that they had previous to the implant. This research is clearly going to continue to develop into something more and more complex throughout its research future and I hope it can go on to be offered to people with RP more widely in years to come.

It is not often that there is a developement of such magnitude that I’d feel comfortable ending on such a hopeful and positive note but I really do think that this will one day be able to improve the everyday lives of those who have degenerative eye sight. I hope that it’ll go on to allow them to regain the independence that has been taken from them by their conditions and also relieving some of the demands on the carers who have to become their replacement eyes at the moment.

The original paper is:

Subretinal electronic chips allow blind patients to read letters and combine them to words

Eberhart Zrenner, Karl Ulrich Bartz-Schmidt, Heval Benav, Dorothea Besch, Anna Bruckmann, Veit-Peter Gabel, Florian Gekeler, Udo Greppmaier, Alex Harscher, Steffen Kibbel, Johannes Koch, Akos Kusnyerik, Tobias Peters, Katarina Stingl, Helmut Sachs, Alfred Stett, Peter Szurman, Barbara Wilhelm, Robert Wilke.

and a full free PDF can be found here !

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Science is vital rally

Today I attended the Science is Vital rally in London outside the treasury to encourage Osbourne to rethink his proposals to cut the funding budget for science.
A plethora of scientists and others were there to show their support, and the afternoon was filled with speeches by people such as Dr Evan Harris, Simon Singh, Ben Goldacre, Colin Blakemore, Dr Petra Boynton, and a smattering of comedy sci!
All in all it felt like a very unified afternoon, and manged to get me thinking and hopefully will have raised the media awareness which we so need! I don’t want my future to be compromised by a government I didn’t even vote for, but it currently looks like this will happen.
I can’t write too much as I’m using my iPhone and it’s irritating to type on, but the rest of this post will be quotes from the day from signs I spotted to what people said..!

Science beats living in a cave
Putting on a stained lab coat dr evan Harris ‘i wasn’t a very good doctor and I was worse at doing laundry’
‘screening for applications at Eton are such that they elimate taking in those with the gene for shame and regret’- dr michael brooks. ‘we are living in a scientific age and deserve scientifically literate MPs’
Colin Blakemore pointing out that less than half of 1% of the GDP is actually invested in science.
Dr Petra ‘nurture young scientists’
Cutting the budget will compromise the training and saftey of young social
Scientists. Cuts in this country will have an impact on being able to do collaborative research with poorer countries, limiting both of our growths.
Science saves lives!!!
Ben goldacre donned an anorak and shared these gems: Nerd Power! The notion of a Brain Drain- already loosing brightest minds in academia to higher paying city jobs. “you either use it or you lose it”.

Things we can do to help!
1) sign the petiton http://scienceisvital.org.uk/
2) write to your MP
3) get others to sign the petiton!!!
4) come to the lobby on oct 12th
5) go along on the evening October 26th to the royal institute and make your views known!

Science is vital, come on guys you know this. Science is in everything, and affects us all! Get on it. Stop the stupidity and spread awareness.

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Barley Eating – Video

My mom managed to capture the last 30 seconds of Barley eating. I think it’s interesting how she’s trying to completely clear her bowl (in the side that she is already eating from) so one might suggest she is still feeling hungry when she walks away from the bowl, presumably because she ‘thinks’ it is empty!

The saga continues…

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Barley’s forgotten her food again. Hemispatial neglect symptoms in dog continue.

More images of Barley eating, these are from the 6th September, this time she didn’t eat her whole bowl and again ate only from the right hand side.

So the left hemispace neglect symptoms seem to still be present. I’m working on getting a video and mom has said she’ll try to get the vet to maybe get a scan of barley’s brain so will post those if/when they happen.

Have been in touch with a researcher in my dept at Royal Holloway who forwarded the info on to a researcher at UCL’s NIC. He seems very interested in it, and pointed out that Balint induced neglect symptoms in a dog in his early studies on neglect.

Again, anyone with any information that might be useful please get in touch with me. I should get back to writing up my research project, draft is due in next week and I’ve not written a great deal so far.

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Update: Apparent symptoms of neglect in Barley

It’s difficult for me to write with 100% accuracy about her progress as I am at university 80 miles away from home so am relying on interpretations from emails/photographs and updates via the phone from my mom (who is being incredibly helpful, so big thanks is due!).

But Barley’s most recent progress seems quite promising. My mom said she’d noticed Barley’s ‘fussy eating’ (as she calls it) about 2/3 weeks ago after what was likely to have been another stroke since her first major stroke just over a month ago, which left her with a strong left side weakness which she is now recovering from. The photo’s she has sent today indicate that if she is showing  signs of neglect or another similar neurological condition that these  symptoms are beginning to subside. However, I still think that they way in which she is eating is still very interesting, see the below photos for an illustration.

There seems to be a definite right side preference for the food bowl, (image one) and she clears a whole half almost down a straight line bisection before she moves across to the second ‘half’ of the bowl on her left hand side (image 3). The fourth picture seems to indicate she has changed position slightly, as in the previous photos she is standing right in front of the bowl and in this image she seems to be at it’s side. Again I’ll stress that I do not know precisely how she is eating, I keep trying to get my mom to work out video on her photo so we can have a more accurate step by step portrayal of this.

The fact that she’s managing now to eat her entire bowl without promting is a nice postive sign, I suppose as cool as it is that she’s showing these signs of a neglect I do really want her to get better and make a good recovery. I’m not all about ‘the science’.

I’ll end with this image of Barley being looked after by our new Puppy called Moya (who’s in training to be a dog for the disabled for my mom who has a degenerative spinal condition. I love Moya, she is awesome even if she ate my teddy bear last time I went home!)

Thanks to all of you who’ve seen the post about Barley and have shared it around. If anyone has any suggestions as to how I might better test for neglect signs other than with her food bowl please don’t hesitate to put them forward! I’m also not sure how long neglect can last in a dog when it hasn’t been induced medically for scientific research purposes. So I’d be most grateful for any info from those with veterinary science backgrounds or experience with such things as well. All other information about this condition that anyone may have would be really great to see too!

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My dog has unilateral neglect!

So I really thought that I’d written a post about Unilateral Neglect before but apparently I’m just imagining that! Perhaps my confusion is because I did write an essay about it for the first course I took last year, and hence forth I’ve become all muddled and confuddled that I can no longer differentiate from the work I ‘have to do’ and the blog posts I enjoy doing…

Anyway, this is the most perfect time for me to write about unilateral (or hemispatial) neglect, as my dog appears to be displaying the symptoms! Brilliant isn’t it? I shouldn’t be this excited but I can’t help it.

Meet Barley:
She is a 16 year old Whippet x. Lurcher who used to spend her days chasing bunnies and sometimes catching them, but now just potters about the place and would rather just stare at a field of rabbits and keep walking than bother to do anything about them. A few months ago Barley had a stroke, she suffered severe left side weakness and although has gained a lot of mobility back still has a slightly wonkey head. I believe she is still having small strokes and that she must have had one about a fortnight ago that affected her posterior parietal cortex. My reasons for suspecting this are outlined below, after my brief explanation of unilateral neglect symptoms in humans.

Okay, so here goes the ‘science’. Hemispatial neglect can occur following damage to the right or left posterior parietal cortex, most commonly occurring however in the right and usually as a result of a stroke. The form of neglect can be both extrapersonal, representational and/or personal. In right hemispherical damage the effects tend to be longer lasting and more severe, though most patients do recover over time.

Extrapersonal Neglect

In cases of extrapersonal neglect patients fail to be aware of objects on the contralateral side of their lesion, in most cases this means that they neglect objects in the left side of space. For patients to be diagnosed with hemispatial neglect no other explanation such as a motor or sensory deficit can be present (Vallar, 1998). This form of neglect can involve near space (or peripersonal space) or far space, or both. Often patients will recover over time from hemispatial neglect syndrome. It’s common for these patients to fail to draw the left hand side of a picture, as illustrated below, or for them to even eat food only from the right hand side of their plate and not realise that there is still food on the left to be eaten.

Figure illustrates the left side neglect of a patient.

Representational Neglect
In these cases patients neglect the contralesional space in their memories and imagination of places, objects and people. Representational neglect is far more common to right hemispherical damage and is found in conjunction with the extrapersonal visuospatial neglect described above (Bartolomeo, D’Erme, & Gainotti, 1994).

Personal Neglect
Personal neglect differs in that the patient fails to recognise or use parts of their own body that are on contralateral side of their brain damage. Patients are reported to be unaware of their own limbs, claiming for example that the left leg attached to them belongs to somebody else and is not theirs. This form of neglect is less common than that of extrapersonal neglect, and may involve additional regions of damage. Right personal neglect following a left sided lesion is extremely rare although some cases have been reported (see Peru & Pinna, 1997).

Now of these three forms of neglect I believe it is quite likely that my dog Barley is suffering from extrapersonal neglect following some sort of damage to her Posterior Parietal Cortex in her right hemisphere. The photographs below show my reasons for thinking this is likely. (Thanks go to my Mom for taking these photographs and emailing them to me!)

First image

Number One. Bowl still relatively full of food.

Number Two. Barley eating her food.

Number Three. Barley thinks she has finished eating.

It is pretty clear from these images that she’s really neglecting to ‘see’ the food that is in her left visual field! If mom turns the bowl around so that the food is then on the right hand side of the bowl she continues to eat, albeit a little confused as to where this food has magically appeared from but still.

I hope that these images and experiences of Barleymow have helped illustrate this neurological disorder well, and I will keep tracks on how Barley is doing over time and write about anything new or interesting that happens.

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