My condition is a visual loss caused by Retinitis pigmentosa (RP) which is an ever worsening condition to the point now where I’ve very minimal vision. I am 68.
My dear lady wife is more than good to me, and supports me as my carer. I also through Roscommon Disability Support Group have 6 hours PA support which is hugely valuable to me. I could use as many hours as I could get because every hour improves the quality of my life. I would be severely curtailed in my life if I had no hours.
I’ve a great passion for cooking, and I still work in butchering – which is interesting as its all done in braille! I see these activities as therapy to keep my head straight.
Rural transport for us, we live 3 miles outside of the local village and we have one private bus per week. It stays in the town for 2 hours and then returns. This is a paid for service – I can’t access any public transport.
We’re appreciative of any support we get but more PA hours would change the quality of my life significantly.
Does that seem fair to you?