Michael's Story - IMNDA

Michael’s Story

January 31st, 2022

 

My Journey, Michael Harte

“I first noticed something was wrong in December 2019 when I woke up several nights with a bad cramp in my right leg.

In January 2020, I was 3 days in bed over the long bank holiday weekend with a bad cold and pain. I was sweating profusely and getting more ill by the day but still thinking it would pass. Tuesday morning, I went to the doctor and was rushed to Ballinasloe Hospital where, within 2 hours I was brought to the ICU unit and remained there for 12 days. They first said my whole system had broken down and that it was a virus of some sort.

When I got out of hospital, I started to stumble and fall on occasions.  The leg cramps continued. I went to the doctors at Primary Care and got a really thorough examination for an hour and Dr McCormack came to the conclusion that it was foot drop. (A condition that happens when your foot doesn’t lift in the upward movement) As it wasn’t his area of expertise he suggested a leg brace and recommended me to see a consultant and in the meantime have a MRI scan done in Portiuncula Hospital. Results back didn’t show anything sinister on scan.

Due to Covid 19, I still hadn’t seen a consultant. I still had pain in my leg so went back to my own doctor Dr Harney who sent me to Mullingar Hospital in October for admittance. I was there for 10 days and went through many tests and was taken back and forth to Beaumont Hospital and the Mater Hospital by ambulance. Due to Covid, I was on my own when I finally got to meet the consultant in Mullingar who broke the news to me that I had MND – Motor Neuron Disease.  It was a clinically cold matter-of-fact statement and I went into compete shock and got quite upset as I instantly thought of my lovely sister Tess who had been diagnosed with MND 4 years earlier and had only lived a very short time after diagnosis. It was something that had never crossed my mind that I also could get. The consultant said he couldn’t do any more for me and referred me to the MND Clinic under the care of Professor Orla Hardiman for a full diagnosis definition on my condition.   When I got home I did a full internet search on Professor Hardiman and was very comfortable with what I read. No matter what, I would be in the best of hands.

I was assigned to a MND Nurse, Fidelma. She is super and one of the mobile nurses who look after MND patients around the country. Aisling is also another MND nurse who looks after me. When Fidelma first came to visit she was very reassuring and set up the appointment with Professor Orla Hardiman who diagnosed me with the strain of Muscular Spinal Detoriation. I was put on medication to slow down the detoriation process.

I can no longer go up any stairs/steps so my bed is in our kitchen/dining room. Work will start on turning our utility room into a wet room so that I have shower facilities and also that I will no longer have to endure the steps down into that room that’s there currently.  We are currently converting the garage into a bedroom for me. I had to get a new front door as the old one wasn’t wide enough to facilitate a wheelchair, something I wouldn’t have thought about,  and also a ramp at my back door to assist me get in and out of my home..

I have an Electric Armchair to sit on which is amazing and I have an air cushion for that. I am comfortable enough but I do have pain in my back but its being controlled. I have an electric bed too, unfortunately, I just can’t get comfortable sleeping and lying down is difficult. I am going to get an air mattress next to take the pressure off me.

I have a fold up, light wheelchair for any trips out in the car. I am getting a cool motorised Electric Wheelchair. I was amazed to be told that I had to do a driving test for several hours to be able to operate it. Health & Safety procedures are important. I use a Rollator inside my home to assist me move from the bed to the chair to the bathroom.

I have a Motorised Muscle Movement Machine that I sit at, that exercises my arms and legs. I don’t have to do any work. It does everything for me! I have a Nippy Ventilation Pressure Machine which I need to help me breath. It seems to take the heavy pressure I feel, off my lungs and chest. I use it day and night at intermittent times.

My wife, Maeve, is my Carer 24/7. She gave up her job with Athlone Community Radio to dedicate all her time to me.

Outside of my official treatments I have been treated to Seaweed Baths, Steam Baths, Nitrogen Gas Treatment, Body Massages, Hot Towel Shaves, Head Massage and Pedicures by some wonderful friends.

I have been on MND clinical trials for the past year at Beaumont Hospital, St James Hospital and Trinity College which may help me or indeed others in the future. I continue to partake in the clinic trials programme.

Last Christmas, I was very sick for 15 days with a bug. It wasn’t Covid or MND related but it took a lot out of me. I am back in good form now and looking forward positively.

On the plus side, I can still drive! We have an automatic car with hand controls. I don’t often get out of the car but it’s still good and it’s good for my sanity.

I was born in Glasgow, Scotland. My parents moved back to Sligo, Ireland with their 5 children when I was 16 after the sudden death of my younger brother Nicholas.    I was christened Michael, but I am also known as Mike and ‘Jock’! (Jock because I was born in Scotland). I met my wife Maeve (from Galway) in Sligo 42 years ago on the CB Radio! (That’s a whole other story!). We are married 37 years and live in Athlone for the past 27 years. I would have been a fit person with plenty of strength and energy until MND got a grip on me. I have had many changes of career and was always a hard worker. I liked to do my best always.

I wouldn’t think anything of getting up at 5am and working till the late hours.

I have plenty of hobbies, I love everything about Formula 1 and all motor sport and its memorabilia and could speak all day on the subject. I have met many great stars of the F1 circuit and treasure those moments. I did rallying as a driver and navigator in my youth.

I also loved swimming, scuba diving, surfing, and all water sports really.

I love photography and have been all over the world taking photographs. I am grateful for that time, experience and fun! Now I wade through great images and remember.

I have no bucket list…just taking it one day at a time. Life is too short to be in a rush.

 

This year I am partaking in a Silence Programme to raise awareness for MND… which will be difficult as I love to talk!

However, talking does tire me out, but this is because of my breathing. I get short of breath and need the Nippy Machine to help me.

When people visit me I keep my speaking time short. I then use Nippy and if they are still there when I finish I continue on talking! Anyone that knows me knows I always have loads to say!

My voice is very important to me. I still have lots of stories to tell….”

 

 

 

 

 

 

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