Barry’s Story

My name is Barry Jennings and I’m from Balla, Co. Mayo.

I got diagnosed with bulbar palsy, a type of motor neurons disease in June, 2018 at the age of 31.

In the Christmas of 2017 I started noticing problems first. I have always had nasal problems and during the Christmas period I was playing music. I was singing and noticing I couldn’t sing as good as I used to so went to my doctor and was sent to an ENT specialist. Everything showed up fine and I was put on some nasal sprays and rinses. At a wedding of a friend of mine, in early 2018, my friend was joking thinking I was drunk because I was slurring my speech, I had only had a couple of pints so I knew this wasn’t the case. I went back to my doctor, Elaine Broderick in Balla and upon talking to her, she asked, did I ever dribble when drinking and I said I had. She said it would be no harm to see a neurologist.

I had only started a new job surveying water meters and within a day or two she called me and said I had an appointment the following day, I was hesitant as I didn’t want to ask for time off but thanks to her persistence I agreed.

I went to Galway University Hospital to the Medical Assessment Unit and was tested for various things. It was thought I might have myasthenia gravis, so I was put on tablets for the weekend but unfortunately they didn’t change anything and I went back into hospital Monday and by the Wednesday I was given the dreaded diagnosis from Dr Hennessy.

It’s true when they say on TV that when you get devastating news your hearing gets muffled and I had a ringing in my ears from the shock! Thankfully my wife was with me and she was strong enough to take in the information from Dr Hennessy and Teresa, who was very good at explaining and understanding. That was the worst day of my life. We took a walk around the hospital and as you can imagine every emotion was felt. Sadness that I may never see my nieces and nephews grow up, anger thinking what did I do to deserve this and utter shock and disbelief in thinking the doctors must be wrong.

I went home and had the horrible task of facing my loved ones with this awful diagnosis. As time went on I met Fidelma, one of the amazing MND nurses and with her honestly and positivity, I slowly felt better. Initially, I intended on learning everything I could about this disease but very early on I decided I didn’t want to know the lifespan details or the odds, I’ll learn what I need to and get on with living my life. I found that’s the ultimate decision, give up or keep going, it’s as simple as that.

Thankfully I’m very lucky in my progression rate, bulbar palsy starts with your speech and nearly 4 years on I still have a relatively understandable speech. I have lost most of the power in my hands, arms and shoulders. Not being able to play guitar, drive or beat people in FIFA anymore have been major losses but I can still lift a pint of Guinness 🙂 and thankfully my legs aren’t affected yet.

With the daily help from my wife and help from my PA Pádraic, my family and friends, I am very well cared for. I now realize that taking each day as it comes is the best way going forward for me and that’s what I’ll continue doing.

At the end of the storm, there’s a golden sky.