In her latest blog, Carla explains how the family have tackled the issue of Bob’s sight impairment to make life a little easier and more pleasurable.
With the multiple changes that we face on this journey we are all taking, it is difficult to know what to try and address first. As we all know, for everyone living with PSP everyone’s journey is ‘the same but different’.
For Bob it was the issues with his eyes that actually led to us getting the PSP diagnosis. To start with he coped well and for a period of time prism glasses and eye drops helped a little. Botox also seemed to help initially but second and third sessions gave no relief from the symptoms of blepharospasm (involuntary eyelid closure). Probably over the last 6 months things have got worse and deterioration has meant that TV’s guilty pleasures are not quite enjoyed as they used to be and Bob can’t enjoy reading either.
We never know when this illness will take its full grasp so as a family we are determined to seek out anything and everything that can support us in finding new ways to make life as pleasurable as possible. Bob was now wearing dark glasses most of the time and his eyes were closed probably 85% of the time.
Tracey (Bob’s daughter) bought Bob a talking watch, audio books and shows and a white stick and even a badge that states ‘I am sight impaired’ plus I began to explore what support we could get from any of the sight impairment charities and what was needed to get this support.
Firstly I needed a referral from the local GP to the eye specialist we saw at the beginning of this journey. The specialist kindly assessed Bob and he was certified at the beginning of this year as being severely sight impaired.
Now we had to find out what was available to make life easier. The sensory team from Exeter Hospital contacted us quickly and came out for a home visit with lots of info. They referred us to RNIB talking books and within 4 days we received our first talking books. Mid Devon Messenger, a local charity, also contacted us. They send out a memory stick every week with local news and happenings.
They also provided us with the machine to play the weekly memory sticks on – not being technical, I think it’s called a Sonic Player… We have also attended Exeter eye hospital and they provided Bob with wrap around sunglasses and glasses that are telescopic so he can try and read for a short time.
Once registered as sight impaired you can also gain an extra tax allowance and if you are under 75 years old you can claim a reduction on your TV license.
Every little financial help or physical help from equipment, technology and advice from professionals is definitely a benefit to ensure that life’s pleasures still give enjoyment and joy, even if they are accessed a little differently!