Eileen Butler's Story of MND
Eileen has kindly agreed to be an ambassador for this year's Voice4MND Campaign and share her story of MND.
"Hi, my name is Eileen Butler and I was diagnosed on 16th May 2023 with Motor Neurone Disease.
In December 2022 I noticed some words I would say were slightly slurred. At first I didn’t put too much pass on it but when my husband and children noticed, I decided I better go see my GP. On his advice I was sent to my nearest hospital in Drogheda, Co. Louth, where I got a CT scan to see if I had had a stroke, or if there were any tumours on my brain. Nothing showed up and I was told I would need to see a neurologist, but would be waiting at least a year on the public system. I got my GP to refer me privately and in the meantime I got a mri of my brain and neck ( as my neck wasn’t able to support my head at this stage). Again nothing showed up on these tests. I waited for my appointment and went on the morning of Wednesday 16th May 2023 myself and my husband drove to Beaumont hospital, where we were given the devastating news, that I had Motor Neurone Disease.
"We then had the difficult task of telling our children. We have four but they are all young adults or teens."
We came home in a haze. Our whole future just seemed to have been wiped away in a matter of a few minutes. It just didn’t seem real. I looked fine, I was able to do all my usual things but only my speech and neck muscles were affected. We cried and hugged and hugged and cried, trying to accept it. We then had the difficult task of telling our children. We have four but they are all young adults or teens. And the ironic thing is, in January 2022 I took our two youngest ones to Glendalough for a hike. One of them got a camera for Christmas and he busy taking photographs of the lovely views. We had only commented that we hadn’t met anyone when a few minutes later we passed the late Charlie Bird, his wife Claire and their dog. I explained to our two boys the awful disease that Charlie had and how sad it was that his life was being cut short, little did I know a year later I would have to tell them that I had that same disease.
"These two ladies have now become friends, the kettle goes on and we have a cuppa and a chat."
My parents, sisters and closest friend were all then told. Lots of tears, teas, coffees followed but the saddest thing was I realised that this disease is not just affecting me, but my whole family, my friends and I knew then we were all in this together. And a year on the support from them all and also my neighbours and the community is amazing. My house was like a florist shop at one stage with soo many beautiful bouquets people had dropped in. The mantle- piece was filled with lovely cards from everyone. Everyone was and still is very considerate and caring, and I’m always been told if there’s anything they can do for me, I’m to call.
And then started the different appointments and therapies and tests. So at the moment I attend Speech and Language therapy and Physiotherapy. I have a nurse from the clinic in Beaumont call out to me every month to my house and I also have a nurse call out to me from the IMNDA. These two ladies have now become friends, the kettle goes on and we have a cuppa and a chat. Their visits are soo important to me as sometimes there are things that may not be mentioned in a clinic setting but in your own familiar surroundings you will be more comfortable to talk about something that is bothering you or upsetting you.
