Hazel very kindly shared her story with at our 2021 AGM (Annual General Meeting). This is what she had to say…
“Thank you for inviting me to talk about the excellent rehab service I’ve received recently from Diana Evans, based in Sight Cymru. I know and recognise many of you as I was a trustee of this organisation for many years and volunteered up to three days a week in the resource centre.
Unfortunately I now have a condition called ‘lock-head syndrome’ which means that I can’t lift my head off my chest and I can literally only see about 6 inches in front of me.
I am unable to have a visual impairment diagnosis – as I can’t see the eye charts in the opticians or the hospitals. Although they can see I have lots of debris in my eyes, nystagmus and I experience symptoms of Charles Bonnet Syndrome.
I am also diagnosed with epilepsy (due to lack of oxygen to the brain) which means I see red, blue and purple orbs and flashing streaks of white lights.
I also experience multi-factorial imbalance – who needs a kaleidoscope or to pay money to go to on fairground rides, when it’s all here in my eyes.
I have been housebound now for 6 years, but I don’t see that as a problem, sure there are things that I just can’t do anymore but that made way for many new things that I can do. There just aren’t enough hours in my days, I love doing jigsaws whilst listening to audiobooks.
Diana came to see me following a referral from an O.T (Occupational therapist) regarding lighting. What is brilliant is that you can access this rehab service without having a diagnosis and also if your condition deteriorates you can be referred again, as I have.
I found Diana to be very informative and up-to-date. She assessed the situation very quickly and was able to refer me onto other agencies and suggested some very useful gadgets.
I felt very reassured that I was in capable hands and that Diana really wanted to make a difference to my life. She was amazingly calm and supportive and I felt together we could solve any problem. What was also great was that Diana took action straight away and engaged with other services in a very efficient and effective way. She is one of the best professionals I have had involved in my care.
The services Diana was able to refer me to were:
– Specsavers Low Vision: I have a date for a home visit and they have already provided me with a free lamp which has a magnifier built in (great for those pesky jigsaw pieces)
– Care and Repair: They have been out to change the main lighting and position of the lights in the living room and kitchen. The lights are now much brighter and don’t cause so many shadows.
– ACE project: Calum and his assistant from Sight Cymru visited to look at changing the settings and contrast on my phone and tablet to help relieve the strain on my eyes, to see the text better and lessen the glare.
As I already had a Lifeline alarm Diana referred me to Careline who assessed me for a free Amazon Alexa, which has been great help. Although at one point I seriously thought I had someone in my house when Alexa answered when one of the characters in my audio book asked a question.
Other things Diana suggested were things like a Dycem non slip mat, after I had knocked a bowl of crisps onto the floor (when you live on your own you can’t blame anyone else for these things). I’ve also bought a lettuce knife, cutting gloves and a plastic dish which can be used in the microwave and has a raised edge to prevent spills.
I also now have a ‘finger cut-off’ from a marigold glove on the tap so I can see it better as so many of my cups, dishes, plats have chips in them where I have knocked them on to the tap, how inventive is that!
Diana also checked I knew all about the audio books available. I belong to three providers now and also use YouTube too. I always have three books on the go at the same time, one in each room. It keeps my brain active and alert I say.
She also told me about ‘Ring’, a door bell system where you can communicate with whoever is outside the door before opening it and ‘The Last Cable’, a gadget to make charging phones and tablets much easier.
I cannot speak highly enough of the support I have received from Sight Cymru and know that if I have any problems I’ve only got to ring them and there will always be someone there ready to listen and help.
What a fabulous, quick and efficient service you provide. Thank you