After being diagnosed with myasthenia gravis in 2018 and later cerebellar ataxia, Gerry has had to adapt to life with two neurological conditions. The retired teacher and Roman Catholic Deacon shares how his symptoms first appeared, and how support from his family and our charity helps him keep living a full life.
“Life has changed, but life is still good” – living with myasthenia gravis
I thought people would think I was drunk
The first thing I noticed was how tired I was getting. But with how fast paced my life was, I just put it down to being busy. Until I was preaching at Mass one day, and all of a sudden my voice went.I started to slur my words. I remember thinking, “Goodness, people will think I’m drunk standing on the pulpit.”
A few days later it happened again at a funeral and I had to really concentrate hard not to slur my words. Afterwards, I said to my wife, “My voice is away again.”
Then one Saturday it went completely. I couldn’t speak properly at all. I was admitted to hospital straight away and they thought I’d suffered a stroke. A consultant neurologist came to see me a couple days later and told me I hadn’t had a stroke, it was myasthenia gravis.
“I’d never even heard of it before and asked if it could be cured. He said no, but with medication and taking it easy, we should be able to manage the symptoms.”
I’m not very good at taking things easy
I was a school teacher for 40 years before I retired. In 2013, I was ordained as a Roman Catholic Deacon, and that changed my life completely. Since then, I’ve been involved in funerals, weddings, baptisms, assisting at Mass and preaching. I was also a hospital chaplain for 12 years which was such a privilege. It wasn’t easy. It was emotionally and physically demanding, and people were frightened and often just needed someone to talk to.
Because of my health, I eventually had to step back from my chaplaincy and much of my parish ministry. But even now there are still people coming at me from all sides asking for help. The word “deacon” means “to serve” in Greek, and that’s what I’ve always tried to do.
Even this week I’ve had phone calls asking me to do baptisms, and I’m meeting a couple about their wedding. I prefer it this way though. Otherwise I’d be sitting in the house and life would just be going by and I’d be missing out. I take my chances.
Living with myasthenia gravis and ataxia
Going onto steroids after my diagnosis helped in some ways, giving you a little boost when you’re tired, but they also have side effects. My hands bruise easily and they can make you feel bloated.
One of my biggest symptoms is still my eyelid. Sometimes it droops right down. I’ve got special glasses for driving that help lift the eyelid, and they’re brilliant. The tiredness is probably the hardest part to explain.
As if that wasn’t enough, I was later diagnosed with cerebellar ataxia. The ataxia affects my balance and it’s a nightmare. I’ve had so many falls and damage to my shoulders over the years.
“Having both conditions together makes the exhaustion even worse. I have to concentrate on every step when I’m walking so I don’t fall, and that alone makes me more fatigued. They’re not a good combination.”
I’d be lost without support system
My dear wife, Phyllis, is a huge support. She wouldn’t say it herself, but she’s a brilliant carer. I don’t know what I’d do without her. She looks after me every hour of every day and I’d be lost without her.
Another support system I’ve come to rely on is Muscular Dystrophy UK. Last year I met Graham, the charity’s Advocacy and Support Officer in Northern Ireland for the first time at Lagan Valley Hospital and he was so lovely. He’s really great. He keeps everybody updated with emails and information and he’s always there if you need advice or support.
The charity really made a difference when I needed a new mobility scooter. The first one I got was ok for walking places, but it was too big and heavy to go anywhere in the car. I can’t lift much anymore and my wife couldn’t manage it. It killed me watching her struggle as I always used to do things for myself and her.
We found a lighter scooter that was much easier to handle and folds up easily. When I mentioned it to Graham last time that I bought a scooter, he said, “Gerry, why didn’t you contact me? We would have helped.”
So this time I knew we could get support with the cost. He explained how I could apply for a wheelchair grant through Muscular Dystrophy UK and guided me through the process. It’s made a huge difference to my independence.
So many people would be lost without the support from the charity. It’s great to know there are people like Graham there to help.
