Mike has had a fortnight of pampering and beauty treatments, starting with an essential oil hand massage at a meeting of the Oxfordshire MND Association. Our lovely friend, Kath, gave a demonstration and provided the oils for a wonderful afternoon of relaxation. Best bit by far was watching Mike’s Dad give a hand massage to one of the carers.

kath oil     Kath     kath flowers

It’s been a pretty good week for Mike. On Monday we saw our incredible MND team at the John Radcliffe and Prof Talbot was so impressed by the state of Mike he described him as an anomaly. A year ago we asked the tough question about lifespan and were told that bulbar onset, the flavour of MND that Mike has, is usually 2 years from the start of symptoms. That’s Christmas this year. But it is progressing much more slowly than at the beginning and isn’t doing what was expected at all! This is great news and must be a God thing.

Following the Chocolate Button Incident Mike only challenges his airway occasionally now with a spoonful of yoghurt so he has been losing weight; maintaining weight leads to a longer lifespan (as long as you don’t choke on what you’re trying to eat) so from next week he will be switching to a new feed. The dietician suggested that perhaps it was time for a pump but we like the flexibility of small bottles at mealtimes; if he didn’t have to wake up for a feed I think he’d just spend all day in bed watching Netflix.

If you’re of a delicate disposition you may want to skip this next bit because it’s about saliva. As is common in people with MND Mike’s saliva is thick and there’s a lot of it about especially when he lays down to go to bed or reclines in his special chair. This is quite annoying as his constant coughing keeps me awake and drowns out the TV, so something had to be done. Hyoscine patches have done a reasonable job but the past few weeks the saliva situation has been worsening. More medications were tried with no improvements and bouts of debilitating nausea and vomiting. So the only things left were Botox (works for three months) or radiotherapy (irreversible).

Mike chose the botulinum toxin which involves three injections into his parotid and salivary glands. Sounds painful. On a positive note the car park was quiet as it was a Friday and the consultants were all out on the golf course. Mike’s not great around needles but after a thorough explanation of the procedure decided to go ahead. I attempted to distract him half way through by falling off my chair but he still felt light-headed afterwards and needed a little lie down.

I don’t know about you but I can’t see a difference.

monkey glasses

You get less than this for murder


It was 28 years ago today that I forced Michael to marry me, almost 35 since I asked him to ask me out. Our wedding day is as vivid to me now as it was then; I can still feel the prickly net of my sleeves,  the drag of my veil as the wind drew it into the air and the pinch of my new shoes. But the best day of my life was the next day as we headed off in the old Volvo to our honeymoon, the freakishly hot weather easily winning the fight against the fans as the remains of yesterday’s confetti escaped through the windows. I opened our wedding cards as Michael drove and it sunk in that I would have him by my side for the rest of my life. Our future stretched out ahead of us and like the first day of the school holidays it felt as if it would last forever.

The diagnosis of MND was devastating but it hasn’t all been about loss. We are closer now than we have ever been, we get to spend more time together than we ever have and we have more freedom to do what we want than we could ever have imagined having at this stage in our lives. We have been on some amazing holidays, spent lazy days in the garden, had outrageous pyjama days and eaten ice cream in bed at 1 in the morning. We’ve also now got the biggest bedroom in the house and a Super King Size Duvet! Life is good.

Many things are still reassuringly the same; he came in this evening with a dozen red roses and the familiar refrain: “I stopped by the graveyard on the way home”, except this time he used his recorded voice.  It has become normal to me in a short space of time. Laughter is at the heart of our marriage as much today as it was on the day we vowed to stay together forever and Michael’s speech made me laugh until my sides ached. He began by saying “I’d like to thank Ju for turning up today as she usually works on Saturdays”  and his humour has in turns exasperated and saved me as we weathered life’s challenges together.

So happy anniversary darling boy, and let’s hope you get your miracle because I would rather like your company in my twilight years.

50 shades of brown; adventures with blending



If you mix all the parts of a home-cooked meal together they will inevitable look brown. To make brown you mix a primary with its complementary colour, for example blue and orange or red and green. There’s no going back; once it’s brown it can’t go back, just change shade.

We set out on a voyage of discovery, using three different kinds of blender; the hand-held, the mini and the juicer. After a week on tube feeds Mike would have eaten anything, so he was happy to try everything, which is just as well because there’s no hiding it; some of the food ended up looking like it had been eaten once already.

In celebration of Mike putting Audrey into semi-retirement our lovely neighbours, Chris and Baerbel, threw a “Will It Blend” event for him. The usual suspects all turned up (we are blessed with a fantastic group of friends in The Square) and the blending commenced!

Baerbel, our talented and welcoming host.


On the left, Sag Aloo (homemade with fragrant potatoes with spinach, cumin, garam masala, garlic, onion and other yummy ingredients). We added some of the juice from the cauliflower curry after our first attempt because it did not blend. Not at all. The end result was fair although the spinach was resistant to anything more than wrapping itself round the blades.

On the right is Baerbel’s wonderful chicken curry. It blended beautifully and although it resembled something which should never be mentioned at the dinner table a little coriander garnish and it looked fine.

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Of course, it’s never going to look as attractive as Karen’s un-blended plate, and we drew the line at trying naan and samosas.

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Sarah added some well-cooked basmati rice and cauliflower curry, which was very soft, and Mike tucked in!

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Mike and his buddies enjoy a moment of male bonding over the lovely curry and a choking episode on an onion bargee.

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Blending all of Mike’s meals soon became routine; our biggest problem was getting whoever was on the washing up rota to stop ignoring the blender.

Tesco Pepperoni Ready Meal blended well but needed some extra pasta sauce. I keep a jar in the fridge and just slosh some extra in if it’s looking a bit too stodgy.



Tinned peaches in syrup with fresh mango. Even ripe, the mango didn’t blend until the tinned peaches and syrup were added.

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Spaghetti Bolognese with a “garnish” of peas and some pasta sauce which had been warmed up.

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Macaroni cheese blends really well and doesn’t need anything added to make it a good consistency. With some parmesan and black pepper it looked OK and tasted lovely.

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Spaghetti with meatballs was not great when blended and needed a lot of extra sauce to make it wet enough to swallow.

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Gauging how much sauce or gravy to add to the meat element of a meal is an art; too much and it looks like wet brown cement. Too little and it looks like tree bark.


Hunter’s Chicken.Pretty gross unfortunately.

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Ham hock with mustard sauce, mashed potato, cabbage and carrots combined. While this looks quite disgusting it was a great success.


Chicken casserole has got to be the most successful meal when it comes to appearance; it was helped by being cooked slowly so the carrots were extremely soft.

5 Chicken caserole

Spaghetti Carbonara blended very easily and although it looked like cold Ready Brek tasted lovely. Apparently.

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This is what roast chicken, mash and veg looks like. More green than brown really.

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So on to the blenders…………

The hand held blender was pretty rubbish when it came to large volumes, leaving chunks in the bottom of the jug. The smoothie maker sometimes struggled with pasta and chicken and was a beast to clean as food gets under the seal and the seal is tricky to remove. The Kenwood Mini comes out top as it blends well and is the easiest to clean although it took a few tries (and swears) to work out how to click it into place on the base. It’s perfect for blending each part of the meal separately but as it’s quite small you’d struggle if you wanted to blend the entire plate full in one go.

So for now we’ve settled into a routine of cooking and blending and Mike has decided to lay off the Hoola Hoops to see if this stops his persistent cough.

Center Parcs, liquid food challenge and the snuggly duvet.  



Out of season Center Parcs is slightly cheaper than a good hotel so for my 50th we set off for Longleat and their Executive Apartments! Although close to the centre of the action it was still a good 10 minutes’ walk to the Aqua-thingy but it didn’t stop Michael wanting to swim the first evening. After a nap to recover from the driving we packed our swimmies and set off to the pool. Girding our loins we navigated our way through the unisex changing rooms, narrowly avoided having a group wee in the gents (glasses were in my locker by this point!) and headed for the heated outdoor pool. It was magical; the trees were lit with a million fairy lights and the steam from the pool drifted across the forest. Mike wore a kayaking top to prevent any damage to Audrey which worked really well. We bobbed in the warm water until our heads began to freeze and an elderly man who had probably left his glasses in his locker too energetically squeezed my thigh.

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Unaccustomed to any form of exercise we headed back to our apartment on the slow and breezy land-train and got heckled along the way by a four year old who shouted, “Haha! Slowest train ever!” A grown up in our carriage leant out and shouted back, “Yeah; but at least we’re ON the train!”

cp train

(Image from Trip Advisor)

I joined Mike in his liquid only diet, buying 24 Slimefast shakes (Tesco Deal!) as I could do with losing a few stone. The first day went well; I actually looked forward to having my Café Latte shake for breakfast. The second day went almost as well with Chunky Chocolate added to the menu (wasn’t chunky) but by evening I began to feel really sick. My stomach churned as I tossed and turned in bed and for breakfast I could only face an actual hot coffee. Even now, as I write about this trauma, the nausea is rising. I lost half a stone in four days but I wouldn’t recommend this as an enjoyable weight-loss regime. (If anyone wants some free Slimefast Shakes I have a load hidden in a drawer in the kitchen but you’ll have to come and get them in because the sight of them makes me barf).

The highlight of the trip was the bed linen. Mike is forever complaining that I hog the duvet with cutting comments such as “Is it on the floor your side?” interrupting my pre-sleep state of relaxation. The linen at Center Parcs was crisp, cool, white and covered a snuggly, Super King duvet. So on my birthday we did what any married couple escaping from their noisy family did; we hit the web in a quest to track down the best set of bed linen in the world! I listed elegant ivory and duck-egg blue covers and pin-striped V&A bedding sets.


(Not our room.)

Being a generous person, I let Mike choose. This is what we got:


(Also not our room.)

The Super King duvet actually does touch the floor either side leaving plenty spare to go round Mike’s sleeping form on his foam wedge.

Returning home to a broken toilet and faulty central heating system didn’t take anything away from the break we had in the beautiful forest of Longleat. Accessibility for tired legs isn’t great with a few areas only available if yours work. The Plaza and Venue both had loads of stairs and little curvy pathways but there is a lift if you can find it. Little motorised trucks can be requested if you have mobility problems but have to be booked well in advance and are on a first-come-first-served basis. I think if we went again we might look into a portable electric scooter for flexibility. It will do me good to jog after Mike; maybe I’ll lose another 7 lb.

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.