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.

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.

Will it blend?

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Good news! – On Thursday my Speech and Language Therapist (SALT) tried me out on thickened fluids again.  She said my swallow may have temporarily got weak if I had a chest infection but when I bounce back it is good to keep eating and drinking whatever I can or the muscles will waste away.

I started with thickened squash and had red soup for lunch (tomato soup – a bit of a lunchtime tradition in our house).

So Audrey’s gone part time!

It was sooo nice to get back or real food!

I can now work through the blended meals in the freezer that we bought from Wiltshire Farm Foods and Oakhouse Foods before I had problems.

On Friday morning I realised the cough had gone too!  Whether swallowing food has cleared something I don’t know but I’m happy!

So I’m now eating real food and drinking again and topping up with feeds down the PEG, so there’s no pressure to have to eat, but to be honest I prefer it; all those flavours..

Apparently the internet is all about sharing meals you’ve had recently, so here are some of mine..

Frozen blended food warmed up in the microwave..

Bolognese with potato and veg

Sticky toffee pudding and custard

My beautiful assistant blending bolognese and pasta:

Chicken Casserole

Before

After blending

Very similar to Dexter’s food !

Oh.. and hula hoops..

For some reason, although they are not strictly blended or soft food they go down well, and I was craving them. I did my own test soon after I was told I could eat again. What was that thing I learned at work? “It’s easier to seek forgiveness than it is to get permission.” (Quote from Grace Hopper)

The dietitian came round yesterday and said I had to eat “naughty foods”; full fat milk, high fat puddings, have sugar on everything – basically get the calories in. I get the feeling she loves her job. You spend your whole life being careful about what you eat, watching your weight and then some healthcare professional tells you to throw all that thinking out the window and enjoy eating again!

She gave some really good ideas of what will blend well, things to avoid and ideas for meals so I can just blend what the family are eating. It’s much less hassle.

Will it blend?
The title of this blog posting is an homage to the boys favourite YouTube channel, where a guy tries to blend different things.. e.g. mobile phones, bricks, glow sticks, marbles..

So life is looking good at the moment… the cough has gone and I have loved getting back into eating and all those lovely flavours. Social stuff is easier. I can drink latte and on Saturday I’m going round to a friend’s for a Burns night; they have a blender lined up for me!

Thanks for all your encouraging messages and prayers.

Long term absence

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The fatigue is starting to impact me more

Before Christmas I was travelling to work 4 days a week and working from home on Wednesdays. I was coping with the 1 hour journey each way (part of “me time”) by having a 30 minute sleep at lunchtime in the first aid room and then another when I got home from work.

But over Christmas the fatigue has progressed:

  1. It feels like being on constant night shifts or jet lag
  2. When I wake up in the morning I don’t feel refreshed
  3. Concentration levels are not what they used to be, which is interesting when you’re driving
  4. I tend to take two naps in the day – an hour each
  5. When I have a “busy day” – which isn’t really that busy – I end up paying for it the next day, so I’m trying to find the level of activity that sustainable
  6. With limited energy you feel you’ve not accomplished much in a day and you have to choose what you spend it on

As a result I’ve decided to start long term sick from work, one year after the symptoms started. I need to spend my limited energy with family and friends. Luckily work is very generous in this.  One benefit of being TUPE’d between various companies over the last 16 years means I’ve picked up some good conditions that have been protected as I’ve been moved.  I never thought there was a good side to being forced to work for different companies – but it seems it has paid off now.  Now being back at Three is great – they have really looked after me in this; my management chain right up to the board have made it easy. I get the feeling someone is looking out for me.

Over the last few weeks I have missed:

  1. The work family – all the characters I work with – the good, bad and ugly. Nah – they’re all nice really!
  2. The projects – Three is quite a dynamic company always pushing ahead with projects, never a dull moment.
  3. Getting out of the house.
  4. The drive to work – an hour of forced “me” time each way – singing along to worship songs with no one able to hear.

So I’ve got to get into new routines. There is a risk I just stop and sleep all day – but I know that will be bad for my mental health.

It does feel like I imagine retirement is going to be like.

I suppose there are dangers of getting into daytime TV like Judge Judy, Jeremy Kyle and Good Morning, spending all day watching funny cat videos on YouTube or sitting watching Cbeebies all day with Dexter my grandson? Though we do like Duggee and his latest song (Click picture below to see..)

A good friend recently said she used her long term sick to get close to God, treated it like a job. I like the idea of that, chilling out with Him. We are getting a summer house for the bottom of the garden, fully insulated with power. It could be my new “office”.

I think I’ll do social visits to work, catching up with people and seeing what new crazy projects the guys are up to.

I’ve got a feeling before long Julia will go back to work, just to get out from under my feet.

If you’re in to praying, please pray I get into a sensible routine – and use my time wisely spending it with family and friends and getting closer to God. Also that I adjust to the new norm – I don’t think my identity is in the work I do – but there may be a little of it in there?

Audrey’s in Business

Having a coffee
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Over Christmas I got a chest infection along with many people. After the antibiotics were over I felt much better, energy had returned but the cough remained.  We saw the breathing physio at the Churchill Hospital, Oxford and she gave me some techniques to help make the most of my cough – this included training Julia to help by pushing on my chest at the right moment.

Julia wondered whether my swallow had deteriorated to a stage where small amounts of food or drink were getting into my lungs so on Monday we decided to try all food and drink via my PEG feeding tube – affectionately known as Audrey.  If this improved the cough then we would know.

We got in lots of Ensure – the dieticians said I would need 2 bottles 4 times a day plus 1 litre of fluid on top of that.

12 days supply of food

12 days supply of food

Breakfast

So breakfast now looks like this

Actually all meals look like that now – and I have to fit in 4 meals a day.

What have we learnt in the last 5 days of PEG feeding:

  1. Mealtimes are quite boring – you don’t realise the pleasure you get from tasting food.
  2. I used to have too many coffees a day – that has now stopped – though I do make a tepid coffee with caffeine for Audrey every so often to stop caffeine withdrawals.

    Having a coffee

    Having a coffee

  3. If you deliver the food down the tube too quickly two things happen – you burp and taste the Ensure and you get hiccups. With the first set of Ensure I was supplied with strawberry flavour which tastes horrible. For the next batch I asked for vanilla and cafe late favours; much better.
  4. If you put cold water down the tube then you get a funny feeling at the top of your chest – must be some sort of nerve thing going on as the water shouldn’t reach that high surely?
  5. The boys making toasted muffins late at night smells so tempting.
  6. So much social life revolves around food and drink – meals with friends, the odd coffee down the cafe or a pint. We will have to find alternatives.
  7. We are at Center Parcs at the moment, celebrating Julia’s 50th. Julia has said she will join me and has bought a load of Slim Fast shakes. I think she was feeling sorry for me.

    Saved a fortune not going to restaurants and cafes! Though when she wants to go for walks on her own – I suspect she’s popping into Bella Pasta for some real food.
  8. Julia says Bob Fleming (from the Fast Show) has moved in especially mornings and evenings. (Want to know who Bob Fleming is? Click the picture below)
Bob Fleming - Cough syrup

Bob Fleming – Cough syrup

If you’re into praying, please pray that my chest would remain clear and my cough would be effective.

I’m still feeling pretty positive – the chest infection was a bit of a downer but now that’s gone it’s back to normal – and we’re having a few laughs as always…

Silence Speaks

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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.

silenceSpeaks_having_a_chat

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 !

silenceSpeaks_m_smile