Drink Tea for MND Ambassador 2024

Diarmuid Hickey - Living with MND

My name is Diarmuid Hickey, 56, a husband, father, and educator. My wonderful wife Báirbre, my children Colm (26), Ciara (23), Ailbhe (20), Ella (16) and Yoshi the dog are my family. I work in education as a Deputy Principal in Coachford College, a state school with 850 pupils located in the beautiful Lee Valley. This is my 32nd year in Coachford. Sport, physics, travel, and education are some of my passions. After finishing my Gaelic football and soccer days I moved to running and had completed 20 marathons up to Covid.

My journey with MND began in January 2022 when I noticed I had difficulty with my right hand using nail clippers and clothes pegs.  I soon noticed that my right shoulder had also weakened, I couldn't do two consecutive press ups, could do a few more in the past.  I mentioned my issues in passing to my GP Dr Pat Lee in March.  Pat is a very calm man but it was clear that this could be more serious than the fairly benign symptoms might indicate. He later told Báirbre that my difficulty managing to tie my left cuff button was telling.  Pat sent me for a series of tests that all proved clear, and with MND that is not reassuring.  He then referred me to Dr. Helena Moore, neurologist in Tralee.

Thus began the most difficult months of my journey with MND. Dr. Google became my companion and life alternated between (i) being convinced I had ALS, MND’s deluxe version and (ii) being convinced that I was catastrophising, ‘ridiculously’ fearing Dr Google’s doomsday’s end game.  Anxiety has always been part of my  life but in this period its levels escalated to new heights.  It was a difficult time.

Báirbre and I first met Dr. Moore in late May.  We knew that a process of elimination of other possible causes  would begin and fully expected that there would be a wide range of them on the table. It was a shock to find that there were only a few.  A few weeks earlier I had started having fasciculations, twitches that can be an indicator of ALS, in the now more weakened right arm.  Dr. Moore also saw some in my left arm, not good. Dr. Moore told us it did look like ALS but some more tests were to be done to eliminate other unlikely possibilities.

June was a long, anxious month. The final tests were done, including a very interesting nerve conduction test which intrigued the physics teacher in me.  We still hadn’t shared any of our concerns with family or friends, due to Leaving Cert and final college exams at home.

We returned to Tralee on July 5th 2022 for Dr. Moore to confirm the diagnosis of MND, the ALS version. A defining day. Dr Moore was wonderful, my type of person: direct, honest, informative and empathetic.  Báirbre and I stopped in Killarney on our way home, and over a glass of wine declared that we would manage this together, that there was life in the old dog yet. We chose to process the diagnosis together ourselves first before we shared the news with others.

That day my anxiety lifted completely, and hasn’t returned at all, my brain had given  me one break.

Ciara was away on her J1 in America for the summer and we waited until her return at the end of August to share the news with our children all together.  We then shared the news with our extended family.  School returned a few days later and I made a decision to tell all my colleagues together, to ask them to consider the matter dealt with and that we would all then continue as normal.  It was the right decision for me, their  silent support has been unyielding, with no awkwardness. 

With the phenomenal support of my Principal, Áine-Máire, I took the decision to continue working for the time being bearing in mind the advice “don’t make big decisions when big things happen”. I am conscious that the nature of my job allowed me this choice and not everyone is afforded this privilege.  My life continued pretty normally for the 2022-’23 school year with the gradual failure of my right hand and a slight limp being the main symptoms.  I continued to work as normal, primarily in leadership/management as a DP. I also kept teaching my sixth year physics group. The only noticeable change for them was when I returned after the spring 2023 break suddenly  ‘identifying’ as left-handed, they took it in their stride, nothing phases physics students. Working in education and teaching are a core part of my life.  It was wonderful to continue as normal for the year, a real bonus.  Away from school we all worked to make the best of every day, trips were no longer put on the long finger. Special family holidays and trips with just Báirbre and with individual children to different events are fabulous memories. A Katie McCabe screamer in the Emirates, Jacob Ingerbrizian’s world record on a sultry summer evening in Paris, jazz in Chez Papa,, and glorious local wine on lifelong friends Margaret and Ted's patio overlooking the Med stand out.  Falling down stairs when “I don’t  need to use the lift” in Cork Airport, not so much.  MND puts manners on you.

There was considerable progression over the next summer, particularly in my back, and I returned to school in August with a walking stick.  I didn't return to solo teaching unfortunately but have adapted well otherwise. I became slower and slower, and then when I requested it, the fairy godmother that is the IMNDA, provided me with the use of a powered wheelchair.  I am back on the corridors with a vengeance. The chair was named ‘the Hawk’ in honour of the late, great physicist Stephen Hawking.

Currently I attend Prof Aisling Ryan’s clinic in Cork once every six months where I receive a wide range of care. I also have excellent community support from HSE physios, S&L therapists, OTs, and public health nurses.  We have met fabulous professionals on our journey who all go the extra mile.  The IMNDA work hand in hand with the HSE teams to maximise support.  The IMNDA are simply a wonderful support at all times.

I have made myself available to the research teams in TCD/Beaumont Hospital, led by the simply amazing Prof Hardiman, a remarkable person. I am glad to be able to basically donate my body towards scientific research while still here. It has been fascinating to watch quality research in action, rest assured these special people will get there, it’s a matter of time.

We navigate our journey as a family with all its ups and downs, each of us in our own way and in our own time. It’s not easy. There is no right way.  We are lucky that the whole family is in Ireland, four of us at home in Ballincollig and two in Dublin, but at times those in Dublin probably feel far away.  My own family is nearby in Blarney, also wonderful in every way.

Lou Gehrig the baseball star who had ALS in the 1930s is an inspiration to me and I live by his famous quote “I might have been given a bad break but I have an awful lot to live for”

Considering the Stoics lived two thousand years before Charcot’s discovery of ALS they offer me great wisdom as I navigate this journey. “What I advise to do is not to be unhappy before the crisis comes” Epictetus

“I cannot escape death, but at least I can escape the fear of it” Seneca

We take every day as it comes and make it as good as it can be.  Every day brings new challenges, it’s the nature of the beast that is MND. It is all about finding silver linings, day by day, week by week, and they're there.

We accept the cards that we are dealt with every day and promise to play them as best as we can.

In Memory of Diarmuid Hickey who has sadly passed away. Our deepest sympathy to his family.