What is retinitis pigmentosa?

When I joined the BRPS in 1981, I was able to find out more about retinitis pigmentosa.  First of all I was told that retinitis pigmentosa does not describe one disease but a group of hereditary diseases of the retina. The first symptom to appear is difficulty seeing in low light conditions such as outdoors at dusk or in a dimly-lit room and is referred to as night-blindness. This is followed by the narrowing of the field vision which is called “Tunnel vision”.  This information indicated that my field vision was actually narrowing hence why I was bumping into things and not because of clumsiness as first thought. I found it difficult to understand at first because when I am looking around I do not see any objects standing in my way, in other words my brain is being told that there is nothing there but when I do actually bump into them or knock something over, I often end up with lots of bruises as if I have been in a fight!  I cannot see people standing by my side or when young children stand in front of me because I have lost my side vision; it always worries me when there are small children around me.  Furthermore, I can see no point in worrying about objects being in my way until I bump into them because until I do, they do not exist. I regularly check my vision field and I am aware that it is getting worse.

So, now we know that I bump into people because I fail to see them standing near or coming towards me due to a loss of side vision, meaning the area surrounding my visual field; I miss objects above, below and to both sides. The combination of hearing and sight loss also makes it difficult for me to realise when someone is approaching me from the side and often from the front. Imagine what it is like in a supermarket when shoppers with their trolleys are approaching you in all directions then you will realise how difficult it is for me to cope with this. Some people even leave their trolley unattended in the middle of the gangway and that is when I nearly always accidentally bump into them because I do not see them. There I am apologising while the owner gives me a disapproving look until they see my white stick then it is all smiles and they are apologising too! To solve this I push the trolley and whoever is with me hold the trolley at the front and guide it along. As I have got a computer, I decided to try  shopping  online but I was having some difficulty browsing through the items and it took me so long that I decided it was not for me. My daughter, Anthea told me that if I emailed my shopping list to her, she would order them for me and that has proved successful. I miss going round the supermarket but do visit occasionally with my daughter, Sharon. The good news is that since I have been using my long white cane, I have not bumped into anything because the purpose of the long white cane is to detect any obstacles at ground level and to the waist that may be a danger to the user. I know what my Rehabilitation Worker will say if she ever reads this because she knew only too well about my apathy towards the long white cane; she will smile to herself and say “I like it”.