Testimonials
Katie's Story
Katie has Motor Neurone Disease and is one of our Continuing Care patients. Here she talks about how St Peter & St James has helped her through her illness.
"It began with my speech sounding less clear and sometimes chewing and swallowing felt different. As autumn turned to winter I got cold far quicker than normal and then my hands wouldn't work properly and walking felt odd. I was more tired and I burst into tears over things that previously I had taken in my stride.
"At Southampton Hospital I was told, on my own, that I had Motor Neurone Disease, which causes muscles to waste. No cure. Go home, carry on as usual. I was 38, divorced, with three children aged 14, 13 and 12 enjoying a relationship with David. I had a dog, 2 cats, a house, a garden and a part time job. I was happy with my lot. I had no time to be ill.
"This was early July 1987. Never having heard of MND I went to my local library. Two short paragraphs told me this disease was fatal lasting 5 years. Shocked and horrified I staggered home. I'd assumed from what the registrar had said that by the time I was 70 I'd be in a wheelchair.
"Suddenly my future slipped away, what would happen to my children? My ex had another family, my parents were dead and apart from my sister in London the family were widely dispersed. I didn't feel ill. I couldn't believe I would die. I would fight like mad. Talking about it made me tearful so I put it to the back of my mind as best I could and carried on.
"As I slowed down, David and the children had to help more with the chores and the home help did the cleaning. The electric wheelchair arrived in June 1989 as I kept falling over. Although I was mostly cheerful I felt guilty at altering David and the children's lives. Angry at having my active role taken away, I had to learn to accept help gracefully, grieve the loss of a useful body and with time, to feel comfortable with this altered self.
"For several reasons I gave up my home in late 1992 and split my time between David and my sister in London. Home carers helped in the mornings and lunchtimes and I received respite care at a London hospice, which I liked. After three years, my sister decided to return to work and we had to find somewhere else. Indistinct speech is an added problem of MND although the brain is not affected. The nursing homes I tried made no attempt to listen to me and treated me as a deaf moron who must be force-fed with their revolting food.
"At a very low ebb, the MND Association suggested St Peter & St James. I grew up in Haywards Heath and still had friends there. Right in the heart of the country with great views, the single story building is ideal for wheelchairs. Inside we felt the happy atmosphere. Sister Judy showed us around, talking to me as well as David. Everyone smiled and said hello - no one gushed or patted me. My spirits rose, I could be happy here! And since September 1996 I have been!
"I have Physiotherapy, aromatherapy and enjoy the Day Hospice where I can socialise, read and watch TV. The food is good and hot.
"I cannot praise the staff too highly - pure gold. Everyone is treated normally whatever their problem. Always professional, patient, caring and fun. At St Peter & St James you have the holistic approach - treating body, mind and spirit, it's all available. I know with MND I won't get any better but I don't want to sit around twiddling my thumbs until I die! I come from a cheerful, hard working family where you were just expected to do your best. I try to maximise what I can do and minimise what I can't. With all the options I'm never bored and in the happy atmosphere I feel good! It's a big relief for David and me that if, God forbid anything happened to him, I would be well cared for at St Peter & St James."