Sammy Brill has muscular dystrophy and has been battling for funding for personal assistants to allow her live a life less dependent on her family. This is her story, as told by Fiona Tyrrell.
I HAVE MUSCULAR dystrophy and have been wheelchair bound all my life. I have been battling for funding for personal assistants to allow me to lead a fully independent life for over four years.
I don't want to be dependent on my family. I will be turning 30 later this year and what 30-year-old wants to be still living at home?
The health service seems to think that just because my mother is there, she should take care of me. Having your mother as your carer can be difficult. It's hard for her to look after me as well as be my mother, not to mention taking care of the rest of the family. I believe that everyone should have the right to live independently.
I am a very independently minded person. I have been to school and did a certificate in social studies in Athlone Institute of Technology. However, I need 24-hour care. I need help getting out of bed, to get showered, get dressed and go to the toilet. I can't prepare my own meals.
Three years ago, I got my own flat from the local authority. I had to fight hard for it. The council promised me a wheelchair-accessible house, but would not give me one until I had secured full-time care from the HSE.
The health service would not give me personal assistants until I had secured the house. It was very frustrating. I even considered moving to Dublin. Eventually, the council agreed to provide me with accommodation in Athlone, where my family lives.
There was not a house available so I got a flat. The council slightly adapted the house to suit my needs. That took one year to complete.
Still, I was over the moon when I moved in. There are times when I still can't believe it. Once I had the flat, the HSE gave me an extra nine hours of care. That meant that I could spend two nights a week in my new flat.
I did that for a year. Now I have carers for four nights a week, which means I am without official care for 42.5 hours a week. I rely on friends and volunteers. My sister often gives up her weekends to come and stay with me. But that is not fair. She is 15 and needs her own free time.
The kindness of people's hearts doesn't last forever and there are periods when I am on my own. The HSE keeps saying there is no money for more carers, but that is not good enough.
I am constantly worrying about who will be with me during those hours when I don't have personal assistants. A few weeks ago I had to go to hospital with breathing difficulties. The doctors in AE couldn't find anything wrong with me and said it was stress related.
I am quite limited in my mobility and I have to use a breathing machine at night.
Although I have been in a wheelchair all my life, I was able to stand with the aid of callipers and sticks until my teenage years. When I was 13, I had a spinal operation and I got pneumonia six months later. My legs got tighter and tighter. Walking on bent knees was getting more and more painful. I made the decision to go into the wheelchair full time at the age of 15 because I couldn't stand the pain anymore. I still get a lot of pain in my hips, which are dislocated, and my back.
I'd like to have a part-time job, but it is difficult. I'd have to get a taxi to and from work, which would work out quite expensive. Also, regulations mean that a disabled person can only earn €120 a week before they start losing out on their disability benefit. This discourages disabled people from bettering themselves.
I've tried to get work from home, but have had no luck. I am kept busy, however. I am the secretary on the executive committee for Muscular Dystrophy Ireland (MDI).
Last month, I went to Brussels to attend a European conference to do a presentation on housing and social inclusion. I am also running a speed-dating fundraiser for MDI next month.
• If you would like to attend Sammys speed-dating fundraiser in Athlone, call 0863404516 or MDI at 01 8721501.
• Readers who would like to talk about their own health experience, good or bad, can contact this column at healthsupplement@irish-times.ie
Muscular dystrophy: a genetic disorder
Muscular dystrophy is the collective name for a group of genetic disorders, which involve the progressive weakening and wasting of muscle.
Some forms of muscular dystrophy arise at birth or in childhood, others may not manifest themselves until later in life. Each type of muscular dystrophy arises from a different genetic mutation or deletion which is inherited from one or both parents, or is due to a spontaneous mutation. This means that there are many families who have more than one member with the condition.
There is no cure for muscular dystrophy but a great deal can be done to relieve many of the problems associated with the condition and to improve quality of life.
This can include promotion and maintenance of good health in general, prevention of muscle contractures through exercise, physiotherapy, orthoses and surgery, and preservation of respiratory and cardiac function.
Information supplied by Muscular Dystrophy Ireland. For further information contact 01-8721501 or e-mail info@mdi.ie