What it's like to live one day at a time with Motor Neurone Disease
On global MND Day Michael Holden from Saintfield, who is a wheelchair user at just 44, and retired Co Down farmer Hugh McClean tell Lisa Smyth what their lives are like after finding out they had the condition.
Motor Neurone Disease (MND) attracted global interest two years ago with the Ice Bucket Challenge.
Victoria Beckham, Lady Gaga, Oprah Winfrey, Kim Kardashian, Leonardo DiCaprio and Simon Cowell were among a host of famous faces who took part in the fundraising challenge as it spread around the world.
Even Homer Simpson and Kermit the Frog got in on the act.
And of course thousands of people across Northern Ireland did their bit for the cause too.
By September 2014, there had been in excess of 2.4 million ice bucket-related videos posted on Facebook and 28 million people had uploaded, commented on or liked ice bucket-related posts - all in the hope of finding a cure for MND.
Despite the prominence of the campaign, and the millions of pounds raised to fund research into the condition, there is still no cure been found for MND.
Around 120 people in Northern Ireland are living with the condition today - struggling to cope with the distressing and unrelenting reality of this cruel disease.
To coincide with Motor Neurone Disease Awareness Day, we talk to two people living with the condition.
‘I don’t let it consume me... I started a website and learned to pilot a plane’
Michael Holden (44), who was diagnosed with Motor Neurone Disease five years ago, and has been using a wheelchair for the past 18 months, is married to Jennifer, also 44. The couple live outside Saintfield, Co Down, with their children, Georgia (8) and Noah (5). He says:
I had a weakness in my right leg so I went along to the GP and she made an emergency referral to a neurologist.
To be honest, I was worried that it might be cancerous so when she reassured me that it wasn’t, I wasn’t concerned about being given an emergency appointment — I was just happy that I was being seen so quickly.
I had no inclination of what it was at all. I thought it could be Multiple Sclerosis (MS) or Parkinson’s disease, but not MND.
At the start they were doing tests to rule out MS and Parkinson’s and that’s when they first mentioned MND.
I had to have a test which involves needles being put into your muscle groups and passing electrical currents through them, which was awful, awful, awful. After that they were able to tell me I had MND.
The doctor wasn’t able to give me many details at that stage. He told me that I would have to wait another six months to see how the condition progressed to get an idea of how quickly it was moving.
When I went home and told my wife, we had an afternoon of tears.
I can’t speak for Jennifer but I wanted to forget about it as best I could as it was just before Christmas. For the most part I managed to do so. I do think it is always easier for the patient to deal with it than for their loved ones.
MND isn’t something I have a lot of control over but it is a part of my life. It is there but I don’t let it consume me.
It is difficult for Jennifer, who is a classroom assistant. Our son has autism and her mother has Parkinson’s so her days are spent working and running about looking after all of us. I think she keeps going because if she stops and thinks about it, then it would be too much for her.
We’ve never told the children. We don’t talk about MND in the house. Our daughter and son just know that my legs don’t work.
I’ve been in a wheelchair for 18 months now. The condition is also affecting the front temporal lobe of my brain, which the consultant tells me is very, very rare. I have difficulty verbalising my thoughts and I can be very forgetful — I can dial a number and by the time I do that I forget who I’m ringing.
I find it hard to concentrate, too. I can be driving my children to school and I will think about work — the next thing the children are asking me where we’re going and I realise I’m driving them to work. I was an engineer but now I work in an overseeing capacity.
Another way I’m affected is when I’m having a conversation — if I’m thinking about something else, I can start talking about what I’m thinking about.
It’s very annoying not being able to do normal family things. For example, I can’t go out and play football and do all the things that able-bodied families can do. The Scouts have been very good because they have helped me to become a leader and that has helped me to feel like a father. Even when things haven’t been accessible, they’ve worked to make them accessible.
If you hear about someone you know being diagnosed with MND, don’t be afraid to speak to them about it. One of the hardest things we have found is that a lot of our friends deserted us. I suppose when people are used to going out to nice restaurants and one half of a couple can’t do that anymore, they continue on without you.
At the same time, I’ve had opportunities I wouldn’t have had if I hadn’t developed MND. I wrote a blog about being in a wheelchair that was picked up by a charity that taught me how to fly, which was incredible. My children dream of us being on a plane and a call being made looking for someone who can fly and everyone’s faces as I go up the aisle in my wheelchair.
I also started up a website, www.trip-ability.com, which is like Trip Advisor but is for people with mobility problems. It’s been such a success we’ve had to redevelop it to deal with the traffic and we hope to relaunch it at the end of the month.
When I was first diagnosed with MND, I didn’t want to meet anyone else with the condition but over the years I have met people through the MND Association and I have found it helpful.
Of course, it’s always difficult when you go to a meeting and someone has disappeared, especially when it’s someone whom you have talked to and befriended. Suddenly they’re not there.
I try not to think about the future, however. I’ve been assessed for the equipment which will speak for me but I try not to dwell on what may happen. Things are so much brighter if you have a positive attitude.”
‘The doctor advised me to carry on with life as best I can, and that’s what I do’
Retired farmer Hugh McClean (74) was diagnosed with MND in 2012. He lives in Ballykinlar, Co Down, with his wife of 47 years, Bernadette (68). The couple have five daughters and two sons aged between 46 and 27, and 12 grandchildren between 17 and three-years-old. He says:
My daughter, Helen, is a nurse and we were having dinner one evening when she mentioned a twitch in my arm.
I hadn’t noticed it myself at that stage, and neither had Bernadette, but after Helen mentioned it, we became aware of it, so I went along to the GP.
At the time, I had been taking statins for about 18 months and the doctor thought that it might be a side-effect from that, so suggested stopping them for six weeks and seeing what happened. I went back six weeks later when the twitches hadn’t stopped.
The doctor thought it was benign but referred me to a neurologist and the diagnosis was confirmed on October 12, 2012.
I never ever thought it was MND and even when I was diagnosed I thought they had made a mistake, but the longer it has gone on I realised the doctors were right.
I didn’t really know much about it at the start. The only person I knew who had it was a farmer and that was 30 years ago. Everything I researched about it was very frightening, though. The diagnosis was devastating but the consultant did tell me that I have the upper limb variant, which is slow-moving.
He did predict what he thought would happen to me and I must say that, to date, he has been exactly right. So far it just seems to be affecting my arms and hands and in general terms it is progressing quite slowly.
I now have limited use of my arms. I can’t do things like fasten buttons or scratch my nose and that’s frustrating. I wouldn’t be able to make a cup of tea and I have to use a straw to drink anything. I also need assistance to get dressed and washed but I can still drive, subject to not much more deterioration.
I couldn’t manage without the help of Bernadette and our family. It isn’t too hard to cope with at the moment — I can still talk and walk, although we don’t know what group of muscles could be affected next. I’ve come to accept that whatever will be will be and I just take it one day at a time. I try not to think about what could happen. The doctor’s advice was to carry on with life as best I can and that’s exactly what I’ve done.”
- For more information on Motor Neurone Disease, log on to www.mndani.com, or contact the Northern Ireland branch secretary, Siobhan Rooney at firstname.lastname@example.org or telephone: 07434 839842
‘We were told it was probably MND on our 44th wedding anniversary’
And how Hugh’s wife Bernadette has coped ...
I had watched a documentary about a man with MND shortly before Hugh was diagnosed and I remember saying to him at the time what a brave man I thought he was.
When we saw the consultant and he said he didn’t like what he was seeing and examined Hugh’s shoulders and arms, I asked him if he was talking about MND and he told me I had put the words into his mouth.
It was fear, it was panic, I was overwhelmed by it. I still am at times.
The thing with MND is that you have to deal with it, there’s no cure, and when it’s slow progressing like it has been with Hugh, then you have some time to come to terms with it and the changes that are taking place.
We were told it was probably MND on our 44th wedding anniversary.We had planned to go out for a meal afterwards but we ended up wandering around in a bit of a daze for a while — all I wanted to do was go home.
Hugh copes with it very well on a day-to-day basis. He never asks ‘why me?’.
There are days when we feel very much in control and there are times when it just doesn’t seem good at all, but I would say that all in all we are living alongside the condition very well.
In the beginning I used to watch him all the time, looking out for changes that would show the disease was progressing but I don’t do that so much now.
I hope to be able to look after him, with the support of family and friends, for as long as possible. I know it isn’t going to be easy, it’s something that’s going to get more intensive as time goes on but I hope to be his hands and arms for as long as I can. Hugh has lost his freedom and, to a certain extent, so have I because I want to be there to help him as much as I can.
It’s a bit of a rollercoaster at times but apart from Hugh suffering from cramps he isn’t in any great pain, which I think is extremely important.
No neurological condition is nice, but I do think it’s important to stay as positive as you can.
We’ve had great help from the Motor Neurone Disease Association both practically and emotionally. In particular, our association visitor, Marie Holmes, has been a massive support to us.
We go along to their meetings and social events and it isn’t just a roomful of sombre patients waiting for death to strike.
The people are very pleasant and meeting other people who were diagnosed with the condition maybe 10 years ago and more gives us hope.
I think everyone getting an MND diagnosis should be told about the MND Association when they find out they have the condition because the support they give to everyone is essential from day one. Being told you have MND feels like a doomsday diagnosis. Hugh was diagnosed just before Christmas and I can remember putting up the tree and the decorations that year and thinking it was going to be our last Christmas together.
However, it is amazing what you can learn to cope with.”
How MND affects the body
Motor Neurone Disease (MND) is a progressive disease that attacks the motor neurones, or nerves, in the brain and spinal cord.
This means messages gradually stop reaching muscles, which leads to weakness and wasting.
It can affect walking, talking, breathing and swallowing, eventually making them impossible.
There is no cure for MND, which is a severely life-shortening condition for most people.
Life expectancy for about half of those with the condition is three years from the start of symptoms.
The Motor Neurone Disease Association serves all those people in Northern Ireland affected by MND.