My first encounter with MND was over 30 years ago. As a teenager reading about Prof Stephen Hawking, I was puzzled by the “weird” disease he had. I remember thinking: “this disease is so rare that it probably only happens to geniuses like him.”
It all started a few years ago and it almost came out of the blue. As a busy mother and the owner of our tea business, I was health conscious. Most mornings I would run a 5k on our beach. I felt invincible. One day in 2016 I noticed my left arm suddenly could not lift the cooking pot. Then in May 2019, my voice got slightly slurred. I stumbled and fell a few times when I was out running. I spent the next few months doing all sorts of tests, which didn’t find anything wrong. With horrible anticipation, eventually, my husband Dom and I were given an appointment to see Prof Orla Hardiman and her team in January 2020, who empathetically gave us the diagnosis. I have a slowly developing form of Motor Neurone Disease called PLS. They didn’t know the cause. There is no cure. Neither did they know how it would progress. I learn that it doesn’t just happen to geniuses, it could happen to anyone as rare as it is. Most patients were remarkably healthy.
The last 3 years after diagnosis have been extremely challenging. All the natural abilities I took for granted such as swallowing, speech and mobility started weakening, like an invisible hand that is turning down my power gradually. Communication is getting difficult; I miss Irish banter. Small things like giving away all my high heel shoes are heartbreaking. They are the constant reminders that this MND is not a nightmare that one day I will wake up from. Now instead of high heels, I am online searching for a powerful wheelchair that can be as light as a feather, and easier to transport; if only such a thing existed! My regular online chats with my mum in China are more like a silent old film now with me doing all the nodding. Although travel will be a big challenge, I am still secretly hoping after Covid I can one day travel again to China to see my mum.
Eventually, after all my online research pointed to the conclusion that this indeed wasn’t a misdiagnosis, I am now determined to live life as normally as possible. This would not be possible without my husband Dom. Unlike me, he accepted every item of equipment offered by the IMNDA and HSE early to assist my speech and mobility. Dom has taken over most of the manual tasks such as gardening, house cleaning, and driving the kids to their training clubs. As a foodie, I insist on cooking most of the time, albeit at a much slower pace.
We sell our range of tea in Supervalu stores Nationwide. They have been tremendously supportive after we broke the news to them. Thanks to Supervalu, and some brilliant local independent retailers, we can keep running our tea business which we enjoy doing, although it’s challenging, like every small business.
Our family went camping together around Ireland, France and Spain in 2021 and 2022. These trips are not only treasured times with our kids, they are also a defiant statement I feel compelled to make in fighting this disease. I also got to see our daughter excel in her leaving cert last summer and is now studying Medicine at Trinity College. Our son recently passed his senior-grade piano exams. I am counting all these big milestones …
I don’t think there is any silver lining in MND. However, it brings my friends closer. They rally around and make a routine to have tea with me regularly. I get to see them more often now than I did before, which is lovely.
I can’t finish my story without talking about Irish Motor Neurone Disease Association and the great work they do. IMNDA always help generously. We enjoy the visits from Louise and Aisling, who understand what it’s like in every patient’s life. We have laughter over a cup of tea without dwelling on doom and gloom. They like to say: every MND patient is unique. Keep your hope up.
While I am not the one who would fall for false hope, I have yet to find a better alternative. So we live as positively, and as normally as possible.
So here I am, raising the teacup with a small bit of hope and loads of love. Let’s all drink tea for MND. Donate whatever you can so that the IMNDA can continue with their brilliant work to help people who live with this horrible disease.
