Struggling for support.
My husband Mick who is 64 years old was diagnosed with PSP by a neurologist in July 2016. It was the first time I ever heard of this illness. It wasn't explained really what it was, other than we should get our affairs in order. Bewildered, we drove the two hour journey home from Dublin.
Then the struggle began, getting appointments sorted and waiting nine months, twelve month and sometimes up to one year and a half. Ophthalmologists, Physiotherapist, MRI scans etc. I live with my husband out in the country –it is very very difficult to get these appointments. All this time Mick is deteriorating – as it is a progressive illness.
When I finally get a date, most of my appointments are an hour or more away from home. On Friday last I travelled from home at 7am to an appointment in Dublin and did not reach home that evening until 4.30pm. Then a further letter came the same week for an appointment back up in Dublin. I have to attend hospitals in Cavan, Monaghan, Louth and Drogheda for my husband's needs. If I can't make an appointment because he is fit to travel I have to wait ages again. There just simply is not enough help for this disease and not enough neurology support.
After a long wait, the Ophthalmologist last saw my husband in December 2017. He told us he would see Mick for a day procedure in a couple of months because his eyes were so bad and deteriorating. He sent an appointment for September 10th 2018. – His eyesight will probably be gone by then! I rang for an earlier appointment but was told this was their waiting list and that he might see him for a follow up appointment in May to see if it's gotten any worse. I know it will as I see the progression every day and he is falling. There is so little knowledge about this illness.
Mary Whelan