The missus’ side of the story


The view from here

It really was getting tiresome, this coughing all night, and sometimes when he phoned me I couldn’t understand what he was saying so I’d shout “Talk to me when you get home; I can’t hear you on your stupid phone!” And the tiredness! He’d come home from work and forget about all the nice little jobs I’d lined up for him like mending the cupboard door or sorting out the temperamental flush in the downstairs toilet. One week he went out for a drink and came home hammered. “I promise, I’ve just had the one shandy!” he slurred.

The choking-on-food thing was beginning to feature heavily in family meal times so I suggested he get it checked out. “OK” he said. He didn’t. Then in May everything added up in a split second as we were driving to Devon for a short break with some of the family: “Sometimes I can’t get my words out!”

It’s hard to describe the complete terror: I knew this was MND.

I felt as though someone had thrown a bucket of iced water over me (ironic, huh?) and it was spreading from my heart to my limbs as the realisation found a home in my head and took root. As we spent 4 days with our infant grandson and his parents in heart-stoppingly beautiful surroundings I worked to damp down the rising panic, watching his every move and listening to his breathing as he slept. I tried to rationalise him out of the illness; he’s tired, work is really busy, it’s stress. But the monster was out of its box and it wasn’t going back.

The diagnosis in July was just a confirmation of what I already knew but I wasn’t prepared for the violence of my reaction; I shut myself in the bathroom, crying and rocking. Being a nurse can be a double-edged sword as I had cared for many people with MND and knew the path he faced. The fact that it was Bulbal Onset seemed particularly cruel as he’d never been much of an athlete but he would miss his voice.

I tried to carry on at work but the casually discussed end of life care for a patient, or a decision to put someone on thickened fluids were amplified, and all I could think of was Michael. Tears were never far away and I couldn’t concentrate; I wasn’t safe to work. After trying to continue for a few weeks to give him a feeling of normality I resigned.

Being a fake Christian

Michael’s faith had been annoying me for a long time. Experiences in another church had been damaging enough to send me on a 16 year journey through different faiths and belief systems and I had settled on Humanism as being the most practical (with a little Pantheism thrown in as I love trees). I knew that his faith would be more important than ever and that I couldn’t trust him to leave the cake alone after Church if it was on offer so I decided to go with him, faking it so I would fit in but not too much; I didn’t want to end up getting involved in stuff. I didn’t try any of the bargaining behaviours with God as it seemed like blackmail to ask a Holy Entity to cure my husband if I came back to Church. So I stuck a smile on my face and prepared to be bored, angry, and a big fat liar.

The moment I walked into the building that had been Michael’s home Church when he first moved to Abingdon 40 years ago was like a home-coming. Peace flooded my soul as I listened to the words which were so familiar to me but I had ignored for so many years. God was my friend and I was back. No fanfare, no being knocked out by the power of the Holy Spirit, just a warm feeling; God was saying to me “It’s good to see you, welcome back.”

I didn’t sing much, I cried through most of the worship, but somewhere in the calm of that familiar building I found my faith again. My third spiritual journey was about to begin and I was content and completely amazed. I had turned my back on God because I had no conviction that he even existed any more but in an instant I knew that he was with me and nothing could ever change that.

I bought a bible in large print with just the one column for my aging eyes and read my favourite parts with a growing feeling of calm. It was as if I had never been away.

Step by step loss

Every small adjustment to life with MND was a little loss. For as long as I can remember Saturday lunch was crusty white bread and red (tomato) soup for Michael and the boys but bread was the first food to go on the dangerous list. Soft pasta became the substitute with the occasional lapse followed by choking. Ben was always at hand, eager to carry out the Heimlich manoeuvre, but we haven’t needed his advanced first-aider expertise yet. Salad became a banned substance though not so sorely missed. Sleeping with my arm across his chest became uncomfortable as his breathing became more of an effort and alcohol was banned until conversation was no longer required as his speech became unintelligible.

I found myself doing more of the driving, much to the dismay of my sons who can’t shake off the memory of the number of collisions with stationary objects I’ve had just reversing off the drive. Snuggling up in bed became less comfortable as Michael needed to sleep propped up on a huge foam wedge to help him breathe.

The first conversation about a PEG angered me; Michael wasn’t ill enough to need that! So many of my severely affected stroke patients had PEGS but they were mostly in their 70s and 80s and didn’t have a good prognosis. I strongly resisted the first time it was brought up, angrily believing that the medical staff were in too much of a rush to start poking holes in my husband’s body. Michael, as ever, kept a level head and talked me round. Just.

The PEG was a visual reminder that he had MND. It felt like an attack on him and I found it very hard to deal with. As a nurse trainer one of my most frequent sessions was on PEG management and for me a PEG had bad connotations. You didn’t often get it removed. This was a major step in the wrong direction. Through it all he kept his sense of humour and proportion while I was busy catastrophising.

As 2018 waits for us I look back at 2017 with more joy than sorrow. More good things have happened than bad and we are closer than we have ever been. Our journey through the shadowlands has brought out the best in us and with God on our side we face the future with hope and contentment.

PEGs, PIGs and RIGs


No, not types of Image file… types of feeding tube

On Monday 27th November 2017 I went in the John Radcliffe Hospital to get a PEG feeding tube fitted. It was a precautionary move to get the operation out of the way while I was still healthy so it could heal. I wasn’t planning to use it straight away – at the moment I am on a soft diet and still could go to blended or liquidised diet before I had to think about getting fed from a tube directly into my stomach.

In August I had to give up bread as it wasn’t going down so well… and November I moved to full soft diet except crisps which seem OK (bizarrely) and recently I had a run in with a chocolate covered raisin. Just last week a bit of cake gave Dan a bit of a fright as I choked in the kitchen – it was supposed to be a quiet fridge raid – but as I said at Dan at the time “it was worth it”.

My Speech and Language Therapist, talks about taking risks  and getting the balance right between quality of life and taking no risks at all. She’s pretty smart and I think I’ve got the balance about right.

Anyway, for the PEG insertion they starve you the night before and then you’re taken down on your bed to the Endoscopy suite. You wait, watching the other guys ahead of you coming round in their beds, thinking I hope they’ve not had what I’m having. And then you have the “walking wounded” – looking pretty good and just waiting to get picked up.

Me enjoying the peace and quiet on the ward:

Eventually they take you through and inject something in the cannula that makes you feel really happy; they don’t knock you out, just sedate you. You don’t remember a thing and don’t feel any pain. A few seconds later it seems you’re coming round in the waiting area and then you’re taken back to the ward on your bed. The journey back seems a lot quicker that the journey there – I guess you’re still under the influence of the sedative.

One more night of peace and quiet on the ward, (maybe the sedative is still working its way round your body?) and then home.

And that’s where the challenge began. I think I told you about emotional lability before, where MND messes with your ability to control your emotions from time to time and you find yourself either laughing or crying at inappropriate moments. Well, with the newly fitted PEG the painkillers were working well, as long as I didn’t laugh.  My sister bought me a card that made me laugh so much I had to put in back in the envelope for a few days..

It even looks like me – I don’t know where she got it.

And back at home, everyone made me laugh; Julia’s stories of what the boys had been up to, the boys play fighting and even baby Dexter’s fake coughing he’s just started doing recently caused me to double up in pain.

I had to hide away in our bedroom and ask Julia to stay away until I was asleep. Luckily it only lasted a couple of days.

So now I have this tube going into my stomach. You’d think it would leak, but it doesn’t seem to. At the moment I have to flush it daily and on the 10th day onward I’ll have to twist it to stop the body from growing round the end of it. Fortunately for me Julia teaches nursing assistants to care for people with PEGs so I’m in good hands.

One of the nurses asked me what I was going to call my PEG… so I asked friends on Facebook and got some interesting ideas; I had thought ”Phil” – but I thought it may get confusing with the Phils I knew. Someone suggested Jake as in Jake the PEG – but I didn’t like the association with the crimes of Rolf Harris. Others suggested Peggy and Margaret, a long form of Peggy (and I can just hear Little Britain: “Margaret!”)  but my favourite is Audrey, from the film The Little Shop of Horrors, short for Audrey II the “feed me” plant.

Three weeks on and I’m getting tired of Audrey getting caught in my flies so I’ve strapped her up with a Statlock to avoid any nasty accidents. I’m cleaning and flushing her unsupervised every day without any calamitous occurrences and it feels less of an intrusion. Thankfully Dexter hasn’t discovered the new plumbing yet………

Silence Speaks


On the Sat 11 Nov 2017 we did a sponsored silence. The MND Association run a campaign every October called #silenceSpeaks to raise awareness of the fact that over 80% of people living with MND / ALS will lose their speech and have to find alternative means of communication.

We decided to do it as a family so that the boys could experience what we may face later – and we went for 24 hours, starting around 8pm Friday. We named the team after our house; Loud House.

Getting the boys together for a team photo was a challenge…

The rules were you couldn’t speak but had to find alternative ways to communicate. The boys soon found apps on their phones and started pre-programming inappropriate insults to use at the press of a button. We also found loads of Sound Boards – Homer Simpson was my one of choice.  Plenty of “OK”, “Uh-huh”, “Yeah”, “Yeah – probably” – so it sounds like you’re listening.

About 8pm Friday night we started. I was out down the pub… so that was interesting. Noisy environments make it difficult to hear the text to speech on the phone so I tried typing and passing round the phone.

Saturday the house was unusually quiet..

We had some group discussions using our text to speech apps… and it was chaos. By the time you had typed your reply in someone else had asked a different question.. and the phrases that the boys has pre-programmed were all rude and unsuitable .. so lots of laughing had by all.


We went to the Barns Cafe

silenceSpeaks_having_a_coffeeAgain difficult to hear the phone app, a bit of pointing and nodding and Emma doing some talking for us to decipher what we were after.

Just realised how difficult it was to say “thank you”. In normal life people expect you to talk and reply back to them quite quickly. We must have seemed quite rude.

I guess if you lost your voice people would get to know you and take time. Maybe. Or perhaps you’d be reluctant to go out.

What did we learn at the end of 24 hours of relative quiet?

  1. Talking through Text to Speech apps makes your fingers ache
  2. It is quite difficult to shout up the stairs to get the boys attention.. maybe we need some kind of air horn?
  3. It is very slow to communicate without speech
  4. The final thing we learned was the generosity of friends; in the end Team Loud House raised just over £3,000 ! – Amazing!

The MND Association also said we were one of the highest fundraisers for this year’s #silenceSpeaks.

On a personal note. I’ve recorded my voice using voice banking. I used Model Talker but there are a few around. It’s a clever system where you record 1600 phrases and then a computer uses that to create a model of your speech. You can use that model in Text to Speech software to produce a voice that sounds like you… and it does sound just like me! I was amazed. Obviously you have to record your voice well before the MND has a chance to impact it. So thinking ahead is essential.

Thanks for all your generous sponsorship !