Living with MND — My Dad
My dad was diagnosed with Motor Neuron Disease (MND) in October 2020. I was devastated.
The symptoms started in June 2020 (although, we’d go on to realise there were signs a lot earlier!). It began with him coming home from work and saying how weak he felt generally, how we was losing the ability to grip the ratchet straps on his truck and the pain in his shoulders. My family and I, brushed it off saying that he was just tired and he needed to rest. Throughout Summer 2020 he was working regular 13/14 hour days consisting of driving upwards of 400/500 miles a day.
As the summer progressed, dad started to have regular falls, where his knee would give way and he couldn’t stop the fall. This was a real tough time, seeing dad come home with cuts, bumps and bruises. One morning I heard a knock on the door and there was dad, standing there, weak, helpless, covered in blood and cuts all over his face. This was heart-breaking, but dad being the proud man he is, said he was fine. That’s what really hurts me, seeing someone who is so proud, such hard-working and so selfless deteriorate in this way. It’s hard to explain just how difficult it is. Dad won’t mind, I’ve included a photo below of the damage from his last, serious fall.
The weakness and pain never subsided, even with rest, and the falls continued, so we thought it was best to check it out.
The Doctor sent dad for MRI scans on his spine, neck and head as we thought it could be a nerve issue. Maybe a nerve was being squeezed and causing the symptoms he was experiencing. We didn’t have a clue, but hoped these could tell us what was going.
In my head I was fearing the worst. Over the years, I’ve watched programmes about MND sufferers and their story including people that are suffering so much they want to go to a clinic in Switzerland and take their own life.
The results of the MRI’s came back… there was nothing obvious wrong. Again, I’m thinking the worst. I never told anyone what I thought it was. I didn’t want it to be true. The Doctor referred dad to a specialist neurologist at JR, Oxford.
The neurologist examined dad’s MRI results and done a few basic tests with him. Him and his staff are fantastic in the way they dealt with dad, answered all of our questions and their general manner. The neurologist wanted dad to take some thorough nerve tests and also to have a complete blood test. Tests complete. A week later mum and dad headed back to the JR to see the neurologist. The neurologist had asked dad to come with his wife, and just her due to COVID rules. I had a horrible feeling all night, waiting for them to come home with the news.
I was sat in the kitchen waiting for them to get home, the door opened, they walk in, very quiet and sit down with me. Admirably, dad cracked a joke that he had a new car… I was confused… he said, “I’ve got Motor Neurones Disease”. Bam! That hit me like a train. The news I never wanted to hear had become a reality. I instantly broke down. I couldn’t believe it. Even though I had feared it was MND for weeks, it still hit me so hard. I then phoned my sister to break the news. Probably the toughest thing I’ve ever done.
The next few weeks were a bit of a blur, digesting the diagnosis, starting to tell family members and friends. The positive news from the neurologist was that, in his opinion, dad was fairly early in the disease cycle. At this point, dad was still walking unaided, driving, sleeping in his own bed and generally himself.
Dad stopped driving the truck in November 2020 and started to work from home doing the paperwork and focussing on organising the logistics. It’s been so nice being able to spend so much time with him, just not in the way I had hoped. Pre-COVID, the time we spent together, just us two, was at football. The best father-son time ever. We experienced the ups and downs of lower league football, the rainy away days get drenched and the sunny ones getting burnt. I wouldn’t swap it for the world! I really hope we can experience another one or two before the inevitable happens.
Throughout November and December dad has deteriorated. It’s plain (but gut-wrenching) to see. He now needs assistance to walk, to eat, to visit the bathroom and to wash. It’s sad to see how much the quality of life is impacted. The disease seems to have hit the left side of his body worse. His left arm is in a lot of pain all the time, as a result, he found it difficult and distressing to sleep in his bed. He’s now sleeping on the leather recliner in the front room. Mum’s amazing, she sleeps down there with him. She won’t admit it, but she sleeps better on the sofa anyway… haha.
I need to mention mum in this as she has been amazing. Whilst incredibly hard I think it is to see my dad going through this, and ultimately I know this will kill him, imagine this happening to your partner of 50 odd years, husband for 46. I’m hoping she can talk to a professional soon, as it has hit her so hard, understandably so. The support we’ve had from the family has been incredible and it means so much.
And then there’s my sister, Sam. She has been my rock through these past few months, my shoulder to cry on. We go for daily walks and we listen to each other and can discuss anything. She’s so knowledgeable about the problems we’ve encountered and without her we’d be lost.
At the start of December, I wrote to Jose Mourinho, I thought if Jose would respond it would make dad smile. Amazingly, Jose did write back, offering his support, thanking dad for his lifetime of support to Tottenham Hotspur and how sad he was to hear of the news. Jose also included a club scarf. As I read Jose’s letter out to dad we all broke down. Something so little, meant so much to dad and to me. Thank you Jose.
We had a lovely Christmas, given the circumstances, plenty of laughter and good food. I really hope it’s not our last one with dad, if it turns out it was, it was amazing.
As I write, it’s now got to the stage where dad needs more aids. We’ve bought him a new leather riser-recliner which can stand dad up. He’s also now more independent, in that he no longer has one of us aiding him to walk around. He’s got himself a walker, a zimmer-frame if you will, he hates it being called that though… haha. Seeing him move around on his own is heart-warming, knowing he still has some independence. It makes him feel so much better too.
We’ve also organised a stairlift to be fitted as getting upstairs for a wash was becoming very difficult and distressing. One night last week I got dad upstairs, just about. But he was in so much pain and felt so helpless and frustrated. We got him into the shower and on to the shower seat and he just broke down. Seeing dad so distressed and in tears was horrible, there’s nothing I could do or say to help him, he just wanted to be left alone. I went into my bedroom, closed the door and broke down.
Dad has good days and he has bad days. It usually rests on whether he has a good nights sleep or not. The good days are good, dad makes jokes and is a joy to be with. The bad days are tough, he is distressed, in pain and extremely frustrated. I try to understand how he feels by asking him things every now and then. I can’t even begin to imagine what he’s thinking. He’s so selfless, he hates asking for help because he doesn’t want to inconvenience us. I can’t make it any clearer to him, that any of us would do anything for him. Whenever I think of this it reminds me of a quote I once heard from Ricky Gervais, “If you can laugh in the face of adversity, then you’re bullet proof”. Dad laughs most days, at some point, mainly at his own jokes. This makes us all smile. Happy memories.
I did, and I didn’t, understand how devastating MND can be. It’s so destructive. It takes away all quality of life. But, it’s my dad and my best friend, I will do anything for him.
So, that’s a brief insight into what the last 4 months has been like from my perspective. I wanted to start writing my thoughts down as I really think it’ll help me cope with what’s going on. If it can help anyone else at all, brilliant. If not, it’s just me clearing some space in my head.