Vision therapy.: Hi I've been having a few... - Headway

Headway

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Vision therapy.

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Hi I've been having a few conversation on here about vision therapy lately. There is a distinct lack of understanding in the UK medical establishment about this therapy. As you all know fatigue and other issues are largely caused by sensory overload, especially light sensitivity and visual problems. There is a facebook page called 'the ghost in my brain' it is linked unofficially to the 'mindseyeinstitute' in Chicago which is run by Dr Deborah Zelinski. She is a neuro-optometrist at the cutting edge of this field. I have also been in touch with some Dutch friends who tell me there is a good vision therapy centre called Eye4vision in Ridderkerk in the Netherlands. My Dutch friends do go to the US though for their vision therapy to see either Dr Zelinski or to see Dr William Padula. There is also Karen Monet in Ottawa Canada. As for the UK it's hit and miss. The only NHS establishment I could find providing treatment was at the Maudsley Hospital in London, it's a psychiatric hospital and the vision testing is for 'visual disturbances'. The University of Essex has a research group that started with Prof Arnold Wilkins who invented the Cerium visual technology system. He is a world leader in the field but the medical establishment in the UK will not recognise his work. From my own point of view it would have been impossible to have recovered so much without getting vision therapy, which, was truely astonishing when I put on the glasses I was prescribed. 14 months later and I don't need them anymore, my visual processing in regards to pattern glare is 'fixed'. After my experience I really struggle to understand why vision technology and therapy is not mainstream in the UK, I think it should be one of the first treatments because it treats the main factor, vision, in sensory overload. I think it should be combined with vestibular therapy which affect balance and spacial awareness and can be confused with visual problems.

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Feebie8 profile image
Feebie8

Hi Pink 🤗 what's happening?!

Yea my vision therapist has told me of the struggles of some of her colleagues to get a tiny bit of recognition (cant remember the ins and outs).

I think the lady I see has helped me loads. The glasses she prescribed had an instant effect. I cant remember the prescription or reason for them 😂 but I was able to follow moving traffic instantly without nausea or the dizzies. The floor was all wavy when I first put them on and every now and again I still feel like I'm looking out of a fish bowl due to the curvature of the lenses but I'm super happy with them.

Movement wise after an assessment she began tackling my inability to complete some fine motor movement which had a knock on affect with my gross motor movement, while aknowledging that identifying my lack of primitive reflexes too.

in reply toFeebie8

Wow, that last paragraph says it all. Is your therapist NHS or private?

Feebie8 profile image
Feebie8 in reply to

She is private. The first appointment was £75, the assessment was £350 the glasses were £225 and every session since has been £70. The brain injury unit had never heard of a behavioural optometrist 🙄 but my neuro physio had as she had experienced it with her autistic son...as you have mentioned somewhere (I think) it stems from treating autistic disorders but they are able to adapt the techniques to help us post concussion folk and many others are not recognised when they rightly should be.

I live on the north coast of Northern Ireland and she is miles away in Bangor County Down. She is called Susan Park of Bespoke Eyecare. Her story also begins with an autistic son but she was able to tailor it for me and the journey continues.

When I first began I was unable to crawl, literally could not remember how to make my body move to do it. I obviously knew/ know what crawling is but there was no pathway, no muscle memory, no memory - nothing existed in my brain or body to facilitate the movement. It was an eye opener I tell ya! Now I can combat crawl, alt arm and leg crawl and I'm still working on same arm, same leg crawl. I am working damn hard to get my movements recognised by my brain automatically again.

in reply toFeebie8

I don't know what you think but there needs to be some kind of recognition of these vision therapy services. It would be interesting to see if Headway could help recognising this therapy and sharing the information on their website. You said you had an instant improvement when you put your glasses on, I had the same, others I understand need to work on it. I suppose it depends on the visual issue.

Feebie8 profile image
Feebie8 in reply to

Yea I completely agree. As you know our journeys have been made up of trial and error, some bits work some don't, some help instantly some never do but we had to wade through the mud ourselves to get this far.

I got no help in Northern Ireland for months after, if Headway were able to throw their weight behind the unrecognised therapies, imagine how much time it would save having a therapy check list (or something) to work through. Not only would it save time, it could save lives too!

in reply toFeebie8

Hi Feebie

Have just written an e.mail to Headway asking if they could do something about bringing vision therapy to light. It may not help everyone but will help many I'm sure.

Maybe you should write to them too and explain your experiences and your disbelief at this not being a recognised treatment.

FlowerPower62 profile image
FlowerPower62

I am ready looking into this. (Thanks pinkvision for all your help) I accidentally emailed an optometrist in Stoke who was quite certain he could help, but I thy we're going to try the one in Stockport. (Both Johns!). I agree, wish Headway would get behind this. I was horrified at our rehab consultant's dismissive attitude towards it, she really didn't want to know.

in reply toFlowerPower62

John Glover, he and his wife are both into vision.

FlowerPower62 profile image
FlowerPower62 in reply to

Yes, had a nice reply from him. Will definitely go when Ian is up to it. thanks again for all your help.

Nackapan profile image
Nackapan

I've finally got a referral for a neuro opthalomogist. It's at Queens in Romford Essex.

I hope they can help.

My tinted glasses only seem to help a little. Well worth getting my eyes tested and giving them a try.

I looked into The Maudsley Hospital for some reason didnt fit the criteria??

I agree we in the UK need more understanding. Vestibular pysio is very good. It got me walking again. I start the day with the eye exercises given. Cawthorne exercises can be dind I'd bedridden ad I was at the start.

in reply toNackapan

Good I'm glad you have a referral and hopefully they can come up with a route for you to improve your vision. You may want to follow Feebie8 on here, sounds like she has found a good vision and vestibular package and you may find some information in her posts that may help you. Please keep everyone informed about your vision testing and how it pans out.

Nackapan profile image
Nackapan in reply to

I will thankyou. At least the nights at slowly getting lighter! I'm sure the light sensitivity a big part of it.

in reply toNackapan

I used to love the dark nights but now my light sensitivity has improved I want the sun, bring it on.

Nackapan profile image
Nackapan in reply to

I hate them as lights need to go on.

Ivalways been okay outside.

Enjoy the winter sun. 😃

Feebie8 profile image
Feebie8

Hi Pink 🤗

I just noticed this at the bottom of one of my worksheets,

Optometric Vision Therapy by Caroline M.F. Hurston BSc (Hons) FCOptom FBABO - For further help and advice phone 01480 406002).

I don't know if my VT was taught by this person or this is a "standard" but maybe you could look into her 🤷‍♀️ I'm not much for doing research yet these days 🧐😴

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