Living with MND... get the most out of life

Ahead of a ‘Drink Tea for MND’ event on June 21, MICHAEL CLANCY, who has a rare form of the disease talks about his diagnosis, volunteering and making every day count
Living with MND... get the most out of life
Michael Clancy

FOR most Irish men and Irish women, 2016 was a year of remembrance, commemoration and celebration. For me it was just that, but it was also a year of profound sorrow.

Oh it started off okay- ish. I had gotten indications from a doctor in the latter part of the previous year that following a battery of tests, I may have a rare form of Motor Neuron Disease (MND), but nothing definite.

“We’re still doing tests. It’s a process of elimination.”

The only things we had eliminated were Parkinson’s disease and multiple sclerosis. But who knows, it may be something else. I am an optimist, I think, or maybe I’m just in Egypt (in De Nile).

I just knew I was not right. My speech was beginning to slur so I had to slow down to make myself understood. People told me it was fine but I felt it was a lot worse.

I also found my balance, coordination and strength (power) was diminishing. But I had to keep up the facade; I didn’t look ill so it was that bit easier to pull it off. You get terribly inventive when you want to hide that which is not obvious to others.

My mother turned 86 in December, 2015. She was in a nursing home, a diabetic with advanced dementia. Thankfully, she still recognised me as one of hers, albeit at times her son, her brother or even her husband. She knew I was hers. I did not want her to know that there was anything the matter with me. She could do nothing for me other than worry. I felt she didn’t need the worry so why tell her? Please forgive me, Mam, I hope you understand.

Last year turned real sour for me and my family on Sunday, May 1, when Mam passed away suddenly but peacefully on the 45th anniversary of my father’s death. He was 50 when he died.

Two months later, on June 27, the man above came calling again and this time he took my beautiful wife.

It is said that the good Lord will not burden you with more than you can carry. He must have a strange sense of my strength, because he is surely testing my resolve. From May to July we had five funerals of close family members.

I made contact with Irish Motor Neurone Disease Association (IMNDA) in mid-May through my SALT. Within one week I was interrogated — joke, interviewed — by Fidelma in my own home. I couldn’t believe the speed of action. She had assured me not to worry when I told her that I did not have a definitive diagnosis yet. She said that will be all sorted when I meet the Professor.

Life then took over, as happens. They say “Man makes plans and God smiles”. Monique (my wife) and I had planned to go to Brighton for our daughter Dawn’s graduation. She had completed her Physiotherapy Masters in February and the graduation was on in July. We had said we would go so I could not disappoint her. She was home two weeks later for Monique’s months mind Mass. All the family were gathered in the kitchen that Friday night when Sophie (our married daughter) and Patrick (her husband) said they had a bit of good news. Sophie said Patrick had entered one of his hanging flower baskets in a competition and had won first prize. She then asked if we wanted to see photos and handed two or three to her sisters and brother. Within about five seconds there were screams, tears and hugs. The photos were scans of the baby that is due in mid-February. And that, I believe, is the circle of life.

Michael with his grandson.
Michael with his grandson.

I did meet with the Professor and her team. You know when you get bad news health wise. One of the first questions asked is “How long?” You may get the “well it’s hard to say, things are complicated, it depends on blah de blah de blah”. Basically — how long is a piece of string?

The Professor explained to me what my variant of MND was and what to expect. Then she said to me that I would not die from MND. I felt like she handed me a ball of twine and not a piece of string.

Susan, my sister, expressed my situation very well when she said “If Carlsberg did MND, then my version (PLS) would be their version”.

I am living with MND. I’ve had,what some would say, a hard year. But I get up out of bed every day, I leave the house, I meet people. If I went into myself and stayed indoors, I may as well be in the grave beside Monique. I will be there someday but not before time. I meet people and they tell me I’m doing great and I’m looking great. I tell them I think my glass is half full. I say this but there are times when I find it hard to believe. I suspect at times that some bugger keeps changing the glass for a smaller one though.

I’m nothing special. I’m extremely fortunate to have a very loving family. I suppose I could claim a tiny bit of credit for that. I find in life you get out what you put in, or at least some.

I believe in the spirit of volunteering and giving of one’s time, knowledge, experience or whatever freely. Because believe me that – Well done, Good job, You’re great, You’re the best or even a simple Thank you is well worth all the effort. The best volunteers are not paid money. Not because they are worthless but because they are priceless.

I am a volunteer in many different areas of life. 41 years Army reserve, 39 years Rugby clubs, 20 plus years Rugby Referees etc... I never wanted to be a passenger in any group I was involved with. I always wanted to be a driver. This enabled me to push myself to the limit, get the best out of myself in every situation and most of all enjoy life to the fullest in everything I did in my life. I am now not just a member of IMNDA, but also a volunteer for the association and will do whatever I can for as long as I can. I intend banking some brownie points before I will need help. That’s just the way I’m built. Like I said, I’m nothing special. Just doing what I can while I can.

Every year since 1997, the MND community worldwide has marked June 21 as the global day of recognition of ALS/MND — a disease that affects people in every country.

June 21 is a solstice — a turning point — and each year the ALS/MND community undertake a range of activities to express their hope that this day will be another turning point in the search for cause, treatment and cure of this awful disease.

Michael Clancy is bravely fronting the National Motor Neurone Disease Awareness Campaign and he is encouraging everyone to lend a hand and Drink Tea for MND during this significant month of June!

Michael has decided to share his story about living with his terminal disease in the hope that greater awareness will raise vital funds for those living with this degenerative and debilitating condition, which has a devastating effect on patients.

Drink Tea for MND is a great way to gather round some friends and raise funds for people just like Michael. You can Drink Tea pretty much anywhere — in your home, local pub, restaurant, GAA club, workplace, community centre, garden... go on, go on, go on!

To get your Supervalu Tea pack all you have to do is email fundraising@imnda.ie or Freefone 1800 403 403 – it’s that easy.

If you can’t organise a tea day, they can make a tea donation just Text MND to 50300 and donate €2. (Some network providers charge VAT, meaning a minimum of €1.63 will go to IMNDA. Service Provider LIKECHARITY 0766805278) See www.imnda.ie

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