LOW VISION FATIGUE

Through most of my life I have experienced huge fatigue when looking/reading for any length of time over two or three minutes. Low vision friends tell of similar experience. Even with the latest and best electronic  magnifiers, this fatigue does not go away although it is lessened to some extent. You quickly get to the stage where you want to rub your eyes, scream and just do something else, anything else that is not visual.

Crazily it took me years to really rely on speech output and listen rather than look when reading or writing. It’s as if your brain compels   you to keep looking while you have some sight. It’s so obvious, this low vision fatigue that I could not believe it needed academic research to prove its  existence but…here is a link to a Dutch research project which, if you can rise above the language of the experts, supports low vision  fatigue as a  reality.

https://bmjopen.bmj.com/content/7/8/e015023

My  precis  of the research and my precis of personal and professional experience and shared knowledge is that prolonged low vision looking is bloody tiring and we need to adopt a way of life which avoids it where possible’.

It is the language that causes the misunderstandings. Low vision fatigue used to be called eye strain. But it was and is not the eyes themselves that were strained. Rather it  is the mental processes involved that soon lead us to feel necked.  Eye strain has for several years been poopooed and we have been rightly urged to look look look, to use our vision rather than lose our remaining vision. But the fatigue, of course, continues because it is real. We allowed the language to become confusing.

My Hope is that, when professional awareness training is delivered,(sadly too often by seeing people), low vision fatigue will be listed amongst the major experiences.

I imagine that very few readers will want to read the whole research project; but I offer the abstract below for those wanting a little mor in-depth understanding. But, again, there is a language problem. First you have to get your head round cognitive and   first-level codes and the like; but its good stuff   and well worth reading. Remember the punchline, though: ‘Low vision looking/reading is bloody tiring’. And maybe a good coping strategy is to make the best and most  appropriate use of assistive technologies.

Webpage: Exploring the patient perspective of fatigue in adults with visual impairment: a qualitative study | BMJ Open

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Qualitative research

Research

Exploring the patient perspective of fatigue in adults with visual impairment: a qualitative study

Wouter Schakel,

Christina Bode,

Hilde P A van der Aa,

Carel T J Hulshof,

Judith E Bosmans,

Gerardus H M B van Rens,,

Ruth M A van Nispen

Heading 2: Author affiliations

Heading 2: Abstract

Objectives:

 Fatigue is an often mentioned symptom by patients with irreversible visual impairment. This study explored the patient perspective of fatigue in visually impaired adults with a focus on symptoms of fatigue, causes, consequences and coping strategies.

Setting Two large Dutch low vision multidisciplinary rehabilitation organisations.

Participants 16 visually impaired adults with severe symptoms of fatigue selected by purposive sampling.

Methods A qualitative study involving semistructured interviews. A total of four first-level codes were top–down predetermined in correspondence with the topics of the research question. Verbatim transcribed interviews were analysed with a combination of a deductive and inductive approach using open and axial coding.

Results Participants often described the symptoms of fatigue as a mental, daily and physical experience. The most often mentioned causes of fatigue were a high cognitive load, the intensity and amount of activities, the high effort necessary to establish visual perception, difficulty with light intensity and negative cognitions. Fatigue had the greatest impact on the ability to carry out social roles and participation, emotional functioning and cognitive functioning. The most common coping strategies were relaxation, external support, socialising and physical exercise and the acceptance of fatigue.

Conclusions Our results indicate that low vision-related fatigue is mainly caused by population specific determinants that seem different from the fatigue experience described in studies with other patient populations. Fatigue may be central to the way patients react, adapt and compensate to the consequences of vision loss. These findings indicate a need for future research aimed at interventions specifically tailored to the unique aspects of fatigue related to vision loss.

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See:

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Heading 3: Strengths and limitations of this study

This qualitative study provides an in-depth exploration of the patient perspective of fatigue in visually impaired adults regarding symptoms of fatigue, causes, consequences and coping strategies.

Participants were selected from two Dutch low vision multidisciplinary rehabilitation centres through purposive sampling to reflect a range of demographic characteristics (gender, age and work status) and disease characteristics (ophthalmic diagnosis, visual acuity, visual field and disease duration).

Participant’s symptoms of self-reported fatigue were checked with a well-validated instrument to assess fatigue severity.

A random selection of 10% of the citations was matched to the existing coding scheme independently by a second researcher to improve reliability of the coding process.

Limitations include the relatively small sample size and the relatively young age and high amount of rare eye conditions in our sample which may limit the transferability of the findings to the total population of visually impaired adults.

In Defence Of Braille

: Paul Gough Hopkins

Happy Birthday Louis Braille!

Why write all the following down when someone has already said it way better than I could have without sitting for a couple of hours to think it through.

I’m so thankful that I was taught Braille at school. I did protest at first and they let me try writing in large print for a year. I quickly realised that wasn’t an option for me and I was encouraged and enabled to go back to learning Braille and I applied myself with a vengeance. I was about 8 at this point.

Braille has also provided me with a living for 25 years this year so, in a very real sense, it is something I’m passionate about.

Please do take the time to read what the post I’m sharing says as it never hurts to have the support of others as Braille is often deliberately not taught when it should be and the large charities which supposedly represent blind people often undermine it.

Article Start

Heading 3: Áine Kelly-Costello

It’s Louis Braille’s 212th Birthday today. I had the privilege of learning Braille from when I was 4. This year, I’d like to offer a message to parents, teachers and aids who work closely with blind and low vision children throughout their education:

For every student who has very little useable vision, or is likely to lose what they have, or whose eyes get tired when they read – if you have the means but choose not to put the effort into ensuring they learn Braille at school, you do them a huge disservice.

Please don’t delay  just because their useable vision is decent right now or because they can still read large print. It doesn’t matter that they don’t use Braille all the time for everything. And, no, it also doesn’t matter that most things Braille helps with are technically manageable with a screen reader.

Here’s the thing.

Braille is *not* a language—it’s a code—but learning Braille is a bit like learning a foreign language. It’s a hell of a lot easier when you’re 5 or 10, than when you’re 18 or 25 or 50. Of course it can still be done later, but, like learning a language, it requires that much more regular effort and dedication, especially when that involves fitting it around the rest of a busy life, or possibly trying to learn it when vision has just taken a nose-dive.

Can we stop this unnecessary deprivation?

Here are three of many reasons Braille is still a useful tool in many situations. Braille-reading friends, feel free to add your favourites in the comments:

1. You can give your memory a break. Whether it’s glancing at powerpoint notes, facilitating a meeting or taking notes in class, Braille is exceedingly helpful. Listening to a screen-reader while trying to either listen to someone else or to speak yourself can be difficult and draining. Also, some subjects, like Maths, really are easier when you don’t have to keep screeds of details in your head.

2. Labels have many uses. Whether it’s reading the lift buttons, medication labels (where available) or remembering what some print pages you need to keep track of are about, Braille is a convenient and quick way to get that crucial info. Also, by the way, receiving Braille Christmas cards never gets old.

3. Pleasure reading and language learning. Screen-readers are great for many things, but shall we say they were not designed to ‘make poetry sound beautiful. Also, if you’re learning a foreign language, trust me—the ability to learn how to spell and be able to read without relying on a screen-reader is a life-saver if you don’t have bottomless patience.

So let’s do better. Let’s remember that Braille is one very useful tool in the toolbox and that if you withhold it from students who might benefit from it now or later, you, however unintentionally, do them a disservice.

Braille displays are slowly but surely becoming more affordable so the technological barriers are coming down.  Let’s not put any other roadblocks in the way. Every student  who might benefit from knowing Braille now or later has the right  to learn the code as early as possible.  That way, it gives them choices about how they read and write, not just now but for the rest of their lives.

A Care Home Perspective

I was moved to hear about an old school friend, now in a home, having to wait fifteen minutes before being cleaned  up after a bad bout of sickness.  Distressing, of course and we all dread not being able to take care of our own needs. But one of my first jobs after graduation was working as an orderly on a hospital ward. I had more vision in those days. Obviously I got all the dirty jobs as the lowly newbie on the team. Sorting bed pans, feeding patients, clearing up their sick was my norm and, in those days, many were sick after a general  anaesthetic. So is fifteen minutes wait bad care or  good care? I am sure I kept patients waiting while I finished mopping up another. Is fifteen minutes wait good or bad management? Well, this is about timing. There were very busy times and other times when there were enough of us to do it all. So what about resources?

I think most care homes these days are profit-making concerns and this does not make them bad or exploiting as such; but fees and costs determine the possible efficiency from the patient’s   point of view and also for the continued worthwhile functioning of each home. And what about the carers in all this?

I only lasted nine months as an orderly but many carers remain lowly in the organisational hierarchy for years  and maybe clock up dozens of sick mopping-ups each day, week or month. Thank God they keep going for all our sakes. And, when its my turn to helplessly lie amongst my own sick, I do hope I will remain in the state of mind that reminds me to say thank you for what you do. 

Zooming In To Christmas Week

Of course, there is stuff to learn but the Zoom thing works well with  our screenreader technology and, as often happens, I see more of a face on screen and hear more of a conversation in my  headphones than round a  table  where taking  turns to speak can be not so disciplined. On Zoom, we have shared meals with friends,  enjoyed lots of church services, attended several concerts and learned lots from webinars. So we look forward to zooming through the Christmas period, not being isolated from our families and even doing a crossword which we can’t see to do ourselves with some very special friends. If you don’t know what Zoom is, I suggest you ask until you find out. You need a smartphone or a computer and, if you don’t want to be isolated, you need to get your bum in gear and set about learning to do these things, no matter how old you are. It all keeps the  grey cells busy.

A Beautiful Tapestry

I don’t know about you, but sometimes I miss out on a good thing just because of its title or a write-up.  But  don’t be put off by the title, A  Beautiful Tapestry, a Christian book, or even blindness and deafness. This one is way above all that. If you are held back by things in your life, if you want a good laugh, and, most of all if you are in need of some inspiration and encouragement, go ahead, spend a little money, enjoy and wallow in an unexpected spiritual kick in the behind.

Out And About Without Sight

I yesterday joined a webinar on navigation for blind and low vision people. Lots of words and many of them I did not understand. But for nearly 80 years I have navigated hugely round the world as a nearly blind person. I am rightly excited about the future of outdoor, indoor and unstructured environment navigation aids for us. But I see the technology as merely the icing on the cake and the final tool to add to the bag of tools I already carry round with me when I go out and about everywhere. The tool bag is as follows and I may miss some tools I take for granted. They are in no particular order or level of importance to me.

My brain

It seems to integrate lots of the below elements  almost unconsciously so I can call up the tools I need to make my journeys. 

My memory

I can recall journeys I made years ago, houses, factories and offices I visited, steps that tripped me by surprise, people who helped me when I was lost. In my head, I know the journey to the taxi outside Peterborough station and the layout of the Wolverhampton Eye Infirmary I have not visited since 1966.

My very limited vision

Although I see little detail, even as a child I could recognise the red house,the big tree,the large advertising board. All such items were landmarks of reassurance on a familiar journey.

My sense of smell

I know when I am in the newsagents,the chemist, the barbers or the vets and other shops offices or even particular parts of town. The hospital or Doctor’s smell as a child was absolutely enough toignite all sorts of emotions and memories.

Most useful in shopping malls Costa Coffee means I am outside Marks & Spencer’s; The smell of fish and chips tells me I am not in the newsagent’s next door.

.My smiling face

It’s a case of as others see us. Lots more help if you appear happy etc.

My wish to move about

I travelled the country to be with a girl or go for a new job.

My experiences

In my case an abundance of good experiences far outweighs the bad ones. But a senior losing her sight, tripping on a step, embarrassed at not recognising her next door neighbour: Well off to a bad start will take some remedying.

My parenting

My sensible and risk-taking parents allowed me to explore the world and picked me up when I faltered.

My mobility training

In recent years as my bit of sight weakened, A lovely mobility lady updated my white cane skills and laid the foundation for me getting a guide dog.

My self-esteem

Pretty high based on realising I am an expert at living with very little sight; not a victim of it or handicapped by it.

My guide dog

First guide dog at 78, I now walk faster and more upright than I have done for …ever.

My white cane

Just now it is safe in the cupboard, not needed for the time being but ready for action at any time. It is a symbol that I can’t see and might need help; it finds steps and obstacles and it gives me that sense of being OK when I am out and about.  Sometimes, although I have a gorgeous guide dog, I make a white cane journey just to keep up my skills.

My In Your Pocket Phone

I don’t have a navigation app but I do have an app which tells me within 5/10 metres where I am, what’s around and enables me to label points of personal interest such as dog bins, safe crossing points and even overhead branches. I would like it to work indoors.

My confidence

Same as self-esteem based around a good parental start and years of positively getting on with stuff.

The wind

Being aware of the moving air near the door coming out of a strange building or a sudden blast of wind marking the end of a wall or hedge

The sun

I am always aware of the position of the sun in the sky when shining  along with a knowledge of the time of day.

The overall colour of things

I don’t see much detail but have a sense of the overall colour of a building, poster,  shop front  or vehicle, even person. This is a huge help and, in the right context, my brain can make much of this meagre visual information.

Others

Its crucial to learn to be relaxed when asking help or receiving  help/rescue  from others.

Shoes and the sole of my feet

The sound of the floor under my feet, the echo as I enter a larger room, unevenness of pavement, up or down slopes; Just a few of the clues my shoes give me as to where I have got to on a known journey.

 aMY SIGHTED GUIDE

With In Your Pocket phone in hand, I walk with a seeing guide and mark vital spots on the journey. The phone speaks them to me every time I pass by.  Absolutely essential  in the country park environment where we live: Twisty paths, lakes and a river.  No other signposts for me and no street names.

Redundancy

I have so many tools I can manage pretty well if some are not available to me at any time.

My mental maps

Hugely powerful tool made up of millions of in the head impressions of journey and place peculiar to me. I can even remember my home when I was under five years old and the journey to the air raid shelter  in the garden.

I have had a virtual navigation existence for yonks  and if you want to learn more, encourage other blind and low vision people to share their expertise possibly but not necessarily before embarking on study or creating nav solutions.

HELLO HELLO HELLO IS ANYONE THERE?

I think I am one of the mad visually and hearing challenged persons who seems to say hello to everyone I meet – at least round about where I live. Mad or eccentric? Possibly both but there is method in my mad eccentricity despite the embarrassment caused to my children and others.

In the first place, if you don’t see precisely where people are and which path they are taking as you approach them, a timely hello often draws the useful response and you are not likely to walk into each other, assuming, of course, I cotton on to their presence at all. Smile.

In the second place, One does not want to be guilty of passing by a friend or neighbour without acknowledging them in some way. In our position we want to be on good terms with everyone, never knowing when help might be needed and we don’t want to be stand-offish.

And this business of not knowing whom we are talking to is a real poser. We are not so brilliant that we can recognise a voice in the busy street and there is no chance of facial recognition, of course…. Or is there?

Possibly most of us have our own stories about embarrassingly not recognising friends or family. Many times has my daughter had to say: ‘It’s your daughter Dad’ and, not long ago, I was waiting for my wife outside a shop. She had a dark German Shepherd guide dog but I greeted and nearly hugged another little lady coming out of the shop with a dark shopping trolly in tow.

Returning to facial recognition, tThe technology people are on to this one. Our phones can recognise faces and the wonderful Orcam glasses can be taught to speak the face of a friend as you approach him or her, provided you follow the right instructions beforehand to make it possible. But there is another old-fashioned way of finding out whom you are talking to in the street which, again, might appear mad and eccentric. So try this one if you are brave enough: ‘I know it sounds silly but I don’t know who you are’ and see what your neighbour or even your mother-in-law says in response.

Good luck and give it a go. The trick is to learn never to feel embarrassed.

Embarrassment

The other morning, I was almost home and met a lady with a little dog. We chatted mostly about me and how I was. Then she crossed the road and went into her own house. Yes, she was the daughter of our closest neighbour and I did not recognise her, not seeing her face or fully hearing her voice. If I had known who she was, I could have asked her specifically how things were going for her with a current problem I know about and it would not have been a one-sided conversation. So why can’t I overcome my embarrassment and say ‘who are