Eyesight

Has anyone else lost their peripheral vision? I knew mine was diminishing from about 3 years ago. Now I have done a test with optician which shows I have very little peripheral vision.

The test really was quite simple but it made me feel really sick and exhausted.

Does anyone know of a way to keep or even increase my peripheral vision.

I keep nearly bumping into people when I'm out as I don't know that they're there. I'm getting rather dangerous in my electric wheelchair as I nearly run people over if they come up beside me! If someone stands beside me I can't see them at all.

Is definitely associated with my ataxia according to optician and neurologist.

Any advise please?

Alison.

12 Replies

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  • I get the same with my CA. Supermarkets from a wheelchair are awful. Everything at the side is a blur.

  • Good to know I'm not alone. But my peripheral vision is not blurry it's not there at all!

  • Dear Alison

    We are all led to believe that separate parts of the body operate separately. This is because the western medical model has become more and more specialised. There have been some real advantages to this and in particular our acute medicine is great. Because of this specialisation, and this includes opticians, we sometimes lose sight of the connection of our whole system. The eyes are a part of this whole and reflect the state of our mind and body. Indeed there are therapies based around using the eyes diagnostically.

    You are concerned about your peripheral vision and the effect it's loss has on your ability to get around safely.

    What's going through my mind, and others may be able to help here, is that ataxia by its nature causes us to look inwards and in now noticing what we can't do or struggle to do, we are metaphorically shrinking our world and focusing on just what is in front of us. This is one of the body's standard defence mechanisms when threatened. To close down certain bodily functions and refine others. The 'fight, freeze or flight' response. This is a very basic response and one we have little or no control over when it's in full flight.

    So what to do?

    You may expect me to talk about eye exercises and the bates method here, and indeed I use them myself everyday and heartily recommend them, see my website for more on these. However before that I feel there is something more important to address.

    I'm sitting in my conservatory typing this on a sunny Sunday morning. As I look into the garden I'm aware there could be a number of ways of viewing it. With pleasure at the colours of late summer flowers, with interest in the antics of the birds as I watch an amorous wood pigeon stalk his reluctant mate! With dread as I think of all the jobs out there, I plan to cut the grass later, and I probably have other jobs which will clamour for my time and attention. I could choose to look inside and ignore the garden. If the window was dirty and smeary perhaps I wouldn't be able to look out at all. I could play games on my tablet, or just sit here and hope my wife doesn't come up with some bright idea of a job I could just do! All these thoughts are mine and happen in my head. As they drift about in the cotton wool I'm aware that each of them has an effect on how I feel. Tired, energised, resentful, sorry for myself, excited! All these feelings are my own too, some I may share if I think they will help me to do or avoid something.

    We can all get hung up in our thoughts and often are not even aware of how we are letting them affect us. Thinking we are a burden or a nuisance to others can have a deep effect on how we feel. Having future plans and hopes scuppered certainly caused me severe sadness, bordering on depression. I still have my memories. And I have new plans and new ways to see if I can achieve some of my old plans. Like Iain I do my best to focus on what I can do and work to keep as much going as possible.

    I remember a story I was told many years ago about an old man who loved the game of chess. He remarked one day to a friend that he was worried as he was only able to think 5 moves ahead, instead of his usual 15, including several scenarios.

    When he died in his late 80s his postmortem showed he had got advanced Alzheimer's and his brain had shrunk in his head quite dramatically. Yet his mental work with chess had kept him from showing the effects of his illness to others. Perhaps he didn't know he was ill. Sometimes knowing is a double edged sword. Although we now have a name, and possibly a cause for our wobbliness, being told there in no medical cure is a bit of a shock. There are however many things we can do to mitigate the symptoms and the foremost of these is to look the world squarely in the face and do what we can, then do a bit more.

    Alison, as you run people down with your buggy, smile and apologise! Smiling is infectious. Find the laughter in life. As Jenny and I approach older age we have a couple in mind to emulate. My aunt and her husband, he died 2 years ago aged 94 she is still with us at 95. Together they laughed at the difficulties and indignities of declining health and bits no longer working as they should. We want to laugh at life too. It's better than the alternative!

    Where I'm trying to get to, without preaching or putting down your fears and concerns, is that you are the best person to improve your eyesight. Provided you don't have glaucoma, macular degeneration or cataracts, the loss of peripheral vision is as likely to be caused by your world seeming to close in as by anything else. The best medicine is to expand your world and look for new interests, while noticing the familiar ones that still give you pleasure.

    I have read many of your replies on here to other posts and feel your warmth and concern for others in pain and difficulty.

    Please accept this rather long reply with the unconditional love it is sent with.

    Nigel

  • Ooo my this has given me food for thought.

    I was really thinking along the lines that this was another purely physical symptom - I do realise that all the physical symptoms are much worse if you are not positive. This I have seen for myself when I was depressed.

    I no longer feel depressed and now can genuinely say that I'm happy. This is a fairly recent turn around.

    I do laugh about most things including some of my symptoms. I confess I can't manage to laugh at all of them and often the smaller niggly symptoms get to me.

    But I can see differences in my state of health. At the moment I can do so much more than I could.

    I love my house and garden and I get a lot of enjoyment from where we live. I feel determined that this damn wobbly gene isn't going to stop me getting around my garden and getting up the stairs in my house.

    Previously I thought "it's genetic, there's nothing I can do to fight it", I now understand that was completely incorrect.

    If the visual problem is related to my way of thinking then maybe in time my peripheral vision will return. Here's hoping

    Thankyou so much for your detailed response.

    Still interested in anyone else's thoughts or ideas

    Thanks

    Alison

  • My new mantra is "open up your world". I'm working on it. Let's see if it gets better 😉. Thanks for your advice

  • Thanks for sharing and being honest about your ataxia journey.

  • Hi Nigel,

    You wrote "We are all led to believe that separate parts of the body operate separately. This is because the western medical model has become more and more specialised. There have been some real advantages to this and in particular our acute medicine is great. Because of this specialisation, and this includes opticians, we sometimes lose sight of the connection of our whole system....."

    You're quite right of course. Have you ever read up on the revolutionary "Sherrington Physiology"? There's a good article on it at:

    brain.oxfordjournals.org/co...

    Mind, brain and body is one system not many.

    Yours,

    Abs

  • Hi,

    Whilst I like Nigel's posts, and I'm all in favour of being positive, and I like the lift and new outlook it has given you, I dread now being the one that might bring some bad news. But Nigel did add "Provided you don't have glaucoma, macular degeneration or cataracts....."

    Are you sitting comfortably? There's a lot of information to read here.

    Though there can sometimes be others, most Ataxia related conditions come with four main eye disorders:

    (1) MS can also cause Optic Neuritis, usually only in one eye.

    (2) SCA's and others can cause Optic Nerve Atrophy with fading and vision loss.

    (3) Friedrich's, Mitochondrial Ataxias and anti-GAD antibody Ataxia can all cause Diabetes, which can cause patchy sight loss (Diabetic Retinopathy).

    (4) Friedreich's Ataxia, Mitochondrial Ataxias such as NARP, and certain others, can cause slow loss of peripheral vision, due to a complication called Retinitis Pigmentosa (or "Pigmentary Retinopathy"). RP for short.

    Given your symptoms, and what you write that your Opthalmologist and Neurologist have said, you sound like you might actually have Retinitis Pigmentosa (RP). You need to see them again to ask them to confirm this.

    A short video showing normal then RP loss of peripheral vision in a Supermarket (video is a little shaky at times), with bright light levels:

    Normal compared to the darkened peripheral vision with RP in low light levels:

    The Royal National Institute for the Blind has information about this type of RP vision loss.

    rnib.org.uk/eye-health/eye-...

    Anyone experiencing these types of problems, especially with ataxia, should see an Optician or Opthalmologist and their Neurologist.

    Losing such a big part of your sight leads to a kind of grieving process as you come to terms with it, but it can be done, it just takes time. An you're certainly not alone. There are ways to overcome some of the disability it causes, and there is a lot of help available for people with sight loss, partial or fill. In fact, only 3% of all people registered blind are actually completely and totally blind, most can see a little, even if just aware of light and dark. In the case of RP, chances are good sufferers will retain central vision into old age.

    Assuming you are in the UK, you could ask your Opthalmologist about getting your sight loss registered - only they can do it for you. You would be eligible to be registered as partially sighted as both eyes are affected. Being registered has numerous advantages:

    help.rnib.org.uk/help/newly...

    Meanwhile, if anyone has RP but doesn't have a formal diagnosis of the subtype of their Ataxia yet, RP is a big clue to follow up on!

    I hope this helps you to find the right kind of help.

    Yours,

    Abs

  • On the upside, there is hope for treating RP. A new study just started in the UK to restore central vision loss due to a related conditon called AMD (Age-related Macular Degeneration) using Stem Cells, building on previous successes in America:

    bbc.co.uk/news/health-34384073

    There is also research looking to do this for RP peripheral vision loss. Maybe you could try to get into a research programme.

    Yours,

    Abs

  • Thanks so much for this information. I actually feel like the second video but with the central area a little bigger.

    Must say I feel quite scared now.

    I need to go back to the optholomogist in Nov for another test so I shall ask the question then. I'm dreading the test as it made me feel sooo ill!😞

    However I shall continue with my new positive mantra and see what happens with the test.

    I actually live in France but I will ask the optholomogist about registering my sight problem.

    Thanks again 😊. I shall let you know what happens

  • Supermarkets can be a nightmare, fluorescent lights,chrome shelving, glistening packaging. Not to mention the echoes and noise level. Just visiting the optician can be dreaded, all those lights and chrome fixtures.

    But then anywhere with 'mood lighting' such as restaurants, or theatres and cinemas

    with subdued lighting even when supposedly brightly lit, can cause disorientation with vestibular problems.

  • Hi Alison,

    You're welcome for the information. I'm just a little sad about what the information means for you if it is RP. But yes, do check to make sure before you worry about it too much. I'm glad to know that Nigel's motivational and emotional uplift stuck though!

    Alas, RP is one the things that goes with some Ataxias. It's okay to feel a bit scared: it's not a nice prospect. Sight is such a central thing to most of us, and losing much of something most of us take for granted, be it balance or mobility, let alone sight, is a tough one to emotionally come to terms with.

    One tip which might help (in case you're not already doing it by direct experience), which is to remember that central vision doesn't adapt as quickly to changes in light and dark as peripheral vision would. So in your house, try to keep different rooms equally lit, and then try to make sure the light is on before entering a room - that way, you're moving to and from equally lit areas, no adjustment needed. Same when out and about, try waiting a little for your eyes to adapt when entering or leaving a brightly lit shop, e.g. from bright lit shop to darker street.

    Yes, do please let us know what happens with the Opthalmologist.

    Take care of yourself Alison.

    Yours,

    Abs

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