Good News and Bad News

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It all started with the video.

In late Sept 2017 my voice started changing and I knew it was time to tell more people… so I grabbed my friend Phil and met up to record a short video message to tell everyone about the diagnosis. Since then, after lots of coffees and chats, I thought it would be good to start a blog. I’ve not done one before so bear with me as I learn what to do. The good news is that Julia, my wife, has agreed to write some posts; so we should have some laughs…

This is where it all started:
You may have noticed that my voice has changed over the last few weeks…
Well there’s some good news and some bad news…


(Credit to Phil Adams for taking my ramblings and producing this masterpiece)

More information:
Homer Simpson does the 5 stages of grief in 21 seconds: 

MND association info:
Click the title “Are there different types of MND?” – and you’ll see it under there – “Bulbar onset MND”

Prayer team

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Why would a seemingly intelligent scientific person like myself believe in prayer?  At ‘A’ levels (many years ago) I did the “sciency” ones; Physics, Chemistry, Maths and Further Maths. And I did well enough to get into the best course for Electronic Engineering at Southampton Uni. So science and engineering is a passion.

In my first term at Uni I had a thought; “Does God exist?” If He does then I’d better find out what I need to do to get to Heaven; If He doesn’t exist then there are no consequences and I can do whatever I like with my life.  It just so happened that a guy I met in my year out, Nick, was on the same course, and in the same accommodation. So I quizzed him about God over lunch for a few weeks. He was very patient with me. Then one night I was feeling miserable but I remembered what I’d been told about God, and said out loud “If you are really there – you wouldn’t want me to feel this way”. Suddenly I felt a presence in the room. I opened my eyes but could not see anything; it was so loving and lifted my mood. The next night, I was feeling down again and I thought to myself this is never going to work two nights running. So I said the same thing and felt the presence of God again. Something clicked into place and that was the start of my journey with God.

Prayer Team
I still cannot believe a group of about 12 people would meet with us once a fortnight to pray for Julia and me. At first I found it really difficult, people giving up their time to pray for me regularly.  I’ve never had a prayer meeting for me and it seemed a bit weird.  But over the weeks I’ve got into it and now I wouldn’t miss it. We walk out of those meetings so encouraged, no matter what’s going on with my health.

Most of the team

What happens at these prayer meetings?
It’s not something I’ve experienced before.  Sure, I’ve prayed for people as a one off but never regularly and over several months. The group has developed and grown over the last few months. Now we start with a bit of worship, Mike brings his guitar. Then we give an update on how things are going – Julia is doing most of the talking nowadays. Next we look through a relevant Bible passage which someone (usually Alex) has chosen a week before and posted on WhatsApp. And finally the prayer starts.

And did I mention there’s a WhatsApp group of 23 people where we share news and prayer requests.

All that has been going for 10 months!

There are also loads of people I bump into or on Facebook that are praying.

Tonight the team are fasting and praying for 24 hours! Apparently there are a number of references in the Bible to fasting and praying when tricky things come up. “Sadly” – I can’t join them or I would risk the wrath of the Dietitian, but I can fast other things; TV, News and Facebook. Fasting is supposed to clear the distractions so you can hear God more clearly.

We feel so encouraged, supported and loved. I don’t think we would be so positive without all that prayer.

The Bed

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The bed has arrived!  We have moved to the downstairs bedroom and our shower room is complete.

A few of the neighbours have had a go on the bed. The massage feature got different reactions; the girls loved it but the boys said it felt weird. I like it – it is so relaxing.

We tried to snap Martin in half when he tried it…
But it only goes so far (perhaps the bed manufacturer had thought of that).

I’ve only just got used to the remote control – so many buttons. Though Dexter, our grandson, loves pushing the buttons.

I find it more comfortable than the foam wedge I was using because you can bring your knees up This stops you slipping down in the night and waking up in a heap at the bottom of the bed.

How am I doing?
Recently I’ve had trouble breathing lying down at night, so I’ve had to play with the bed and find optimal settings so I can sleep and breathe and I don’t feeling I’m sleeping in economy on a plane. So the new bed has been useful.

Sunday night I woke up coughing on my own saliva (as opposed to someone else’s? – Ew?!). It woke me up several times in the night. I was more tired than normal the next day. Julia recommended I try the Hyoscine patches that I got prescribed a while ago (in the days before the Scream Extractor) – It is a drug to help with travel sickness – but has the side effect of drying up your mouth.

Since going on the patches I haven’t choked in the night, A real result.  Those medical people are clever.

Wednesday I went to a scheduled ventilation appointment at the Churchill hospital. We expected them to say my breathing had deteriorated further and then give me another gadget to help me breathe at night, Non-invasive ventilation (NIV),  the device matches your breathing pattern and helps push more air in as you take a breath. A big step for both of us. Each time we get a new gadget it reminds Julia of the MND patients she has had in the past.

The physio did all the usual tests; taking arterial blood from my ear lobe, and measuring my lung function and cough and to all our surprise they all had improved from last time (4 months ago)!
Weird. Maybe all that prayer is getting answered slowly.

If you’re into prayer:  Thanks for all the prayers. Thank God for the amazing ventilation result this week and pray that the tiredness goes soon. Julia says I have regressed to a teenager; difficult to get me out of bed in the morning and grunting.

Also my speech is pretty bad I’ve got a gadget to help with that. More in the next blog posting…

The Reunion

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A few weekends ago we had a reunion of our church youth group from the 80’s.

I had offered to do a talk about MND but when it came to it my speech was not up to the task and so Julia stepped in and said she would do it. 3 days before she got bronchitis and lost her voice. So she put together a set of slides of embarrassing photos of me and her and prepared a narrators script.

Luckily our good friend Pauline said she would read it out; she’s into am dram so she did a cracking job of it and she didn’t need a rehearsal; she only saw the script 30 minutes before she presented it!

The talks were titled “Where was God when.. ?”

  • Martin talked about losing his son from a car accident – It was very open and honest. Really hard thing to go through.
  • And we did our story including the recent bit about the MND diagnosis. (I had a go at talking in the last few minutes of the clip – you can hear how my voice is now sounding.)

The whole weekend was brilliant – It was great seeing people I hadn’t seen for 30 something years, and luckily we all had to wear name badges to save embarrassment. Some people remembered everything and a few like me remembered a lot less from all that time ago.

It was like going back in time. They are a friendly bunch and all seemed to have gone through hard times of sorts in the last 30 years and come out the other side.

Shirley, Helen and Rachel organised the event – and put a lot of work and thought into the weekend – it started Friday evening and went through to Sunday lunchtime.

At one point we played Brucie’s Generation Game

– and they got us doing all sorts.. 

They even had the old conveyor belt at the end..

We had an 80s disco with all the old tracks!

Old photos came out and they even tried to recreate them.

Some of the blokes had a lot less hair, like me, and some had suspiciously too much hair like Steve, but I checked and it wasn’t a wig.

I was surprised how much energy I had that weekend.

P.S. The bed has just arrived! It has been tested by the neighbours and boys. I’ll be crafting the blog entry very soon…

The Electric Chair

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How am I doing?
My voice is slowly deteriorating especially in the evenings, and depending who I am talking to they either nod politely or, if it’s family, say “stop mumbling” or “that’s easy for you to say” or make up what they thought I said, and go off on a tangent.  I’ve had to start to bang the table when it gets out of hand, just to get their attention, and they start complaining because of what they thought I said. I think it is part of the “Litt humour” but it gets quite wearing. It is also quite telling; you can see what people are thinking when I’m trying to talk.

I read a book recently (I Choose Everything by Michael Wenham) where the husband of an MND sufferer used to translate for his wife and make up all sorts of things; I assume things like “Yes, your bum does look big in that dress”! It won’t be long before Julia starts doing that too…

On a plus side, Julia says I’ve become a much better listener; basically I’ve lost the ability to interrupt her and so I’ve taken to nodding a lot and responding with “hmmm” and raising my eyebrows at the appropriate moment (yes my eyebrows still work really well).

I’ve cut right back on the crisps, hula hoops and mini cheddars and everything is either blended or chocolate pudding-based.  I should have bought shares in those Tesco puddings, I have eaten so many of them. I have about one feed a day via Audrey – though Julia has to help me as the syringes are getting too stiff for me; either that or my hands are getting weaker.

The other day, playing on the floor with Dexter (my grandson) I found that lying on my back I can no longer lift my head up without getting my hands under my head and by the end of the day my neck is aching. I can hear Mum’s voice in my head; “Stop slouching. Sit up straight”. She was a physio and was appalled at my slouching when I was a teenager. I’ve realised that she was right and so I am now trying to sit up straight. I can imagine she’s looking down from Heaven and smiling.

We went Electric Chair shopping last Saturday; no it’s not that Julia has worked out I’m worth more dead than alive, not that type of electric chair, the one old people have that reclines under control of a little handset. Apparently I’ve got short legs and a long body and so the chairs that supported my head left my feet dangling, and with chairs where my feet were on the ground, my head wasn’t supported. So I had to basically try every chair in the shop until we found one where the top cushion lifts up to support my head and neck. But they did offer us coffee and biscuits (not that Julia let me have anything to eat!).

I also found out that it “rises” to help me out when I’m particularly lazy..

Oops too far..

Bed shopping was worse; as I lay on the beds and the lovely Pauline explained all the features I could feel myself nodding off, and by the third bed she had started to notice and offered that Julia could do her shopping and come back later so I could have a little nap.

The last bed had a massage feature. I sometimes get stiffness in my shoulders and back, and it felt so good, so I’m getting a bed with built in massage. It should be here in 3 weeks. Can’t wait!

Tiredness is still a killer; some days I overdo it, like going to a church service and socialising afterwards and the next day I’m sleeping all morning.

If you’re into praying: Thanks for praying, I’m feeling pretty good at the moment. Obviously I’d like my voice to be intelligible as long as possible. We are fairly busy at the moment; rearranging rooms so we can sleep downstairs and we’ve got Henry fitting a downstairs shower and re-doing the main bathroom so it a bit chaotic. Please pray for calm and peace.

On a lighter note, thanks to Karen for sharing The Lost Voice Guy BGT clip on Facebook today – it made me laugh a lot…

Cough Assist

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So, I went to my 3 monthly MND clinic appointment last Monday. I have had 3 courses of antibiotics for chest infections since Christmas and so I was interested to see what the team thought was the next step. Do I go on antibiotics full time or is there something else?

They thought I should put Audrey back in business part time – get my calories via the PEG tube and “eat for pleasure” – which basically means eating lots of chocolate puddings.

My MND nurse, Rachael, is a brilliant advocate for me; she got straight on the phone to the ventilation unit at the Churchill Hospital and asked if they could see me today – they ended up seeing me straight away.  So we popped into the Churchill after the appointment.  I went straight in to see the physio and they took the usual measurements – my cough was stronger than last time and they gave me a new gadget – a Cough Assist.

It is basically a fancy pump that pumps air into your lunge to inflate them – and then switches to sucking – to help you do a big cough. It feels like your lungs have been hoovered –  in a nice way – leaves them feeling really clear.

Ben tried it and he said it reminded him of the Scream Extractor from Monster Inc. So that’s its new name – or SE for short.

The NHS is fabulous – everyone we meet is so keen to help, solve issues and make this journey more comfortable.

Over the last week – I have been coughing less. I use the Scream Extractor twice a day and it keeps things clear. I haven’t coughed all night since using it, much to Julia’s relief.

It also allows me to take some risks and eat blended food now and again – Saturday the lads from the neighbourhood got together, ordered an Indian take away and blended mine.  The beer messed up my voice but it was worth it. A brilliant evening. Mike even did the hot towels!

If you are in to praying – please pray that I’ll not get any more chest infections or coughs.

50 shades of brown; adventures with blending

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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.

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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.

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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.

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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.

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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.

My first MND Association meeting

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I finally went to an MND Association meeting in Oxford!  I had been reluctant to go to meetings in the past as I was concerned that I may get a distressing view of what’s coming in the future.

But I plucked up courage and went along with Julia.

The meeting started with two talks; one on work the occupational therapists are doing to get wheelchairs to MND patients quickly. In the old days it used to be a 2 year wait! Not really an option with this fast-moving disease. And then it was really tricky to get all the parts together for a suitable wheelchair to satisfy the person’s needs, and because the disease is progressing those needs may have changed by the time the wheelchair arrives. So they set out to work with the three main manufacturers to make a standard Neuro-chair with everything on there the person may need. It has sped up the process, simplified the ordering process and means they have everything to adapt the chair as things change.

The second talk was on biomarkers. These are markers in spinal fluid or blood that could lead to a test for MND / ALS. At present there is no blood test or scan that can show if a person has MND and so it is a process of ruling out other diseases and that takes time.  So the researchers have done a series of tests to find biomarkers in the blood and correlate with MND and contrast with healthy individuals and also diseases that mimic MND. The results look promising and they are kicking off a study across two centres to get plenty of data and a reliable test.

And then we got a chance to chat with people living with MND, their families and the volunteers that run the MND association.

It was good to chat to Lesley Ogden, lovely secretary of the local branch of the MNDA , a friendly voice at the end of a phone right after I got the diagnosis in July 17, who also sent me loads of useful info.  She is planning an event in South Oxfordshire and it might be in Abingdon. Handy for me.

One guy had very limited mobility and loads of gadgets. When I found out that he was fiercely independent and lived on his own I was seriously humbled. It made my symptoms feel like they were relatively mild in comparison. Apparently he can control his whole house from his tablet; now I have to see that!

Some had the slow variant of MND, PLS, and had had it for over 10 years.

Some needed wheelchairs and some were like me; it had not impacted their legs.

It was great to compare stories and challenges we had faced. One person had a similar onset to me; starting at the top of the body and working down. However it had impacted her arms first and she first noticed it when she had trouble putting the washing out on the line. After several months of no one believing her, she got the diagnosis. She also had difficulty getting her coat on and recounted funny stories of asking strangers on a train to help her put her coat on with varying degree of success.  Some people were only too happy to help, while others thought she was a nutter!

And a few people had faith in God – good to see I was not on my own. It will be interesting to see how it has affected their faith.

I met a local guy that had written books of his experience: Michael Wenham:  My Donkey Body and I Choose Everything: Embracing Life in the Face of Terminal Illness

  

We all swapped email addresses and intend to meet up over the next few weeks. It was the first time I’d had a proper chat with people going through the same experience and it was really encouraging.

They are an amazing bunch – so much bravery – and so positive.