“I have been asthmatic since the age of 16, and 10 years ago, I ended up with pneumonia after a bad asthma attack. I was admitted to Tallaght hospital where blood tests showed up something abnormal. I was shocked to be diagnosed with limb girdle muscular dystrophy, a progressive and incurable neurological condition. I was in my mid-30s.
I had been accident-prone since a young age and was always tripping and falling, but I thought I was just clumsy. It was initially just my legs that were affected by muscle weakness, but it has progressed into my arms and lungs.
In my opinion, I feel it is a blessing that I was not diagnosed earlier in life because I think it would have held me back and I wouldn’t have achieved a lot of the things I did achieve before my diagnosis. I have been in a wheelchair for the past 15 months and I feel safer in some respects because I don’t have the constant fear of falling.
If I fall, I need two people to help me up because I can’t bear any pressure on my knees. I have damaged cartilage in both knees because of all the falls over the years.
I don’t travel very far because a lot of the paths in the area I live in Rathfarnham are not wheelchair friendly, which is a big disadvantage. My social life has been curtailed quite a bit as so few places are accessible to me now.
I am blessed to have family and friends who are always around when I need them and neighbours who help by putting out the bins, delivering my newspaper every Sunday and anything else I might need help with. I get nine hours’ home help a week from Monday to Friday.
I work three days a week, and while I enjoy my work, I do get very tired. When I was able-bodied, I would jump out of bed and into the shower, then hop into the car to work. I took it all for granted. Now by the time I am sitting at my desk, I feel I have achieved a lot.
I have found that people are inherently good and I regularly receive random acts of kindness from strangers. Little gestures like opening a door mean so much to me. I appreciate every little bit of help I get from strangers, family, friends and colleagues.
I have been involved in Belvedere Youth Club in the heart of the north inner city for the past 22 years. I can no longer help out at club nights and summer camps, but I am on the executive committee. The disability sector and youth facilities are two areas that have been impacted by cuts and that the new Government really need to address.”
Source: The Irish Times
