Happy New Year

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About a year ago … they said I wouldn’t make it to Christmas so it has been livelier than I expected. I think it’s a God thing.

I want to thank those who kept us in their thoughts or prayers.

A good friend, Mary, popped over to drop some DVDs off and she said I look healthy for someone who’s supposed to be dying! I took that as a compliment.

I’m getting used to the breathing machine (BiPAP). I can now sleep for 3 hours with it on.

On Christmas day the family came round to our place bringing an entire Christmas dinner from as far afield as Grove and Bicester. There were 22 of them and we had a brilliant time. The oldest was Julia’s Dad at 82 and the youngest our newest nephew, Zachary, at 5 weeks and they both slept through most of it. I escaped and slept through the meal but joined everyone to open gifts which included another inflatable Jesus.

We’ve told the boys any moaning coming from the bedroom is probably me getting out of bed as it’s beginning to get really difficult. Julia says it’s my heavy head.

The collar is getting interesting as my neck gets weaker; I’ve broken two of the supports. (Must be my heavy head!)

If you’re into praying: I feel quite healthy at the moment – just tired. Breathing is getting tricky. O2 sats are normal but it’s taking more effort to breathe.

We wish you all a happy and blessed new year.

chest infection

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For the last 2 or 3 weeks I have been battling a chest infection with broken nights because of a rattly chest and cough. Julia thought it was due to reflux, where my 2-hourly feeds come back up and get dumped in my lungs. So she asked for a feed pump that basically delivers feed at a lower rate over 12 hours. We start it at 8am so it is done by 8pm and we charge it overnight so there are no leads to trip me up.

I like it because once I have got up at 8am I can go back to bed and sleep all morning with the pump feeding me – no 2 hourly feeds.

My sister Jo says it looks like butterscotch angel delight; if only.

I had another trip to EMU in Abingdon on 22 November where they did a chest x-ray and took bloods and said the infection had gone. All the rattly chest business is old stuff that I would need to clear.

This time Julia got a cuppa tea and a chocolate biscuit. 

Prayer Group was round our house last Friday. All the kit we would have had to put in the car and the tiredness meant it wasn’t practical to have it at church. We were left with a calm and peaceful feeling in the house which was due to more than Dexter sleeping at his Mum’s that night.

A good friend Brian popped over to pray after having been woken in the middle of night before with me on his mind and since he prayed for me it has been easier to clear my chest; no more panic to get my breath. I’ve slept really well since then and I’m feeling a bit more human.

The day after Brian came over to pray for me we had a ventilation appointment with the physio. The lovely Anna tweaked my scream extractor (cough assist) to take 2 breaths in and out before the cough phase and then as I cough it is oscillated to try and move all the stuff up. She also trained Julia to do what I can call professional GBH: manual cough assist.

I will have to use my BI PAP (overnight breathing machine) again as Anna said my bicarbonate levels were up a bit showing I wasn’t breathing deeply overnight. Now that the saliva is under control I think it will work better.

When last at EMU they raised the subject of the lilac form. Basically we discussed whether they would jump on my chest if my heart stopped and we decided not to, which seems a good idea.

Julia told the doctors we had a back-up plan…….

In the Bible (Matthew 10 v 8) Jesus commands us to heal the sick and raise the dead. I haven’t seen any people raised from the dead but I’d like to set a challenge for few friends. We called them team Lazarus.  (John 11)

I haven’t got the strength in my arms to shave so Andrea my sister in law shaved my face. It was a bit scary but no blood..

 

I got a head, neck, and shoulders massage this week from the lovely Kath, a holistic therapist, which was sheer bliss. I’m planning to make it a weekly occurrence. https://www.kathannholt.co.uk/  

If you’re into praying: please pray for no more rattly chest and getting used to my overnight breathing machine in a few days.

Busy Week

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Last week we had to call another ambulance.

I had an episode of reflux where some feed ended up in my lungs and up my nose. It was scary; I felt like I couldn’t breathe but my Oxygen sats. were the best they’ve been over the last few months. My nose was running and the saliva problem got worse as my body reacted to the feed. My cough wasn’t strong enough to clear it so we used my cough assist and suction machine. Unfortunately my gag reflex is super sensitive (another joy of the MND) – so Julia was looking in my mouth to see the stuff that needed suction and quickly stepped aside as I wretched. It was hilarious!

    

After 20 minutes I was worn out so we agreed to call an ambulance.

4 minutes later two paramedics turned up in a car (first responders) and a while later two more arrived in an ambulance. Fortunately, in the meantime we had got the chest cleared.  Julia said it was “the green uniform effect” and suggested I get a cardboard cut-out of a paramedic.

I didn’t have to go to A&E up at the John Radcliffe in Oxford; they managed to get me an appointment in our local hospital for a chest X-ray to show it had all cleared. The doctor gave me a 3 day course of antibiotics just to be safe.

They are so nice down at EMU (Emergency Multidisciplinary Unit) at Abingdon Hospital – Julia even got a cup NHS tea.

A couple of days later the same thing happened but we managed to clear it without the green uniform effect.

Julia emailed the surgery and the GP got back within the hour, even though it was his day off! He added Dom Pérignon (Domperidone), the true champagne breakfast – to speed up the transit of food through my stomach.  Now I am on smaller feeds 6 times a day starting at 7.30am  Doesn’t she know I am a teenager !?!

Kevin becomes a teenager

So now we are taking the suction machine and the cough assist wherever we go. I don’t know where I would be without Julia; probably in hospital. I love her more than ever…

Head and Shoulders

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So my shoulders have lost their strength and when I have a shower I cannot dry my back. Julia ends up drying me. She is good to me. I feel like royalty; I’m sure the Queen has someone who dries her back.

I haven’t yet asked Julia to wear her nurse’s uniform while she cares for me but it’s just a matter of time…

 

Andrea, Julia’s sister, is also a carer and she’s offered to give me a bed bath – I hope she’s joking – so I’ve got a phrase at the top of the text to speech app ready: “Help! Get this woman off me!”

Also in bed I have trouble moving about to get comfy especially when I slide down the bed in the night. Julia says it like having a seal in bed.

My neck is getting weaker so I’ve had to wear a collar when I’m not sitting in my chair or bed.

Julia bought an Avid Merrion collar..

But I like my Head up collar:

I found it rubbed under my chin and the ventilation physios gave me a gel pad to help.

Sad news: the chocolate puddings are gone as swallowing them was getting too tricky.  I’m on soups or yogurts without any bits (a bit like Dexter).  And I have trouble with soup spoons, even in my stronger right hand, so I have to use a cup for the soup.

Luckily I can still have McDonald’s chocolate milk shake, though it takes much longer to drink nowadays.  And do you know they contain 433 kcals! (all part of maintaining my weight).

I’ve become a full teenager; Julia wakes me up for my breakfast feed at 9am then I’m back to sleep for a few hours till my 12 noon feed. I’m sleeping for 14 hours minimum a night! I’ve also got into duvet days where I spend most of the day in bed getting up for tea.  I’ve tried to cut down on the Netflix and Amazon Prime bingeing.

I’ve had a blood test but the GP says it doesn’t show anything horribly wrong to explain the tiredness – so it must be part of the disease.

If you are into prayer; Please pray I’ll get used to my BiPAP breathing machine for overnight  – it is proving hard to get used to as it seems to be fighting with my breathing. At my last ventilation appointment the numbers had gone down so I probably need to start using it.

The voice

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The hardest thing so far has been losing my speech. Looking back I seemed to have gone through the grieving process, spending quite a lot of time in denial, but now I’ve got my head round it and it seems simpler. Julia says I’m stubborn – I take that as a compliment. I can now speak fluent Teletubby which impresses my grandson Dexter.  But sadly Dexter won’t be learning English from me just now.

What can you do when your speech starts to go:


Alphabet charts
Point to the first letter of every word; this gives some clue and breaks up the words to make it easier. And we have been advised to get different phrases written out for the bathroom and bedroom so I can just point to a phrase when I need something quickly.
Alphabet charts in action:

Voice Banking and tablet or phone:

Model Talker
,  the company I did my voice banking with, have created three different voices over the last few weeks to solve problems with clarity and pronunciation. How does it sound?

Only joking!  Here’s my voice:

The Apps give you some phrases and you can add  or edit any hard to predict phrases you need. Sounds complicated but it becomes simpler as you get used to it.  The Speech and Language Therapist has loaned me a Microsoft based tablet with the grid pad app.

I also managed to get my voice on my Android phone; using a free app like “Speech Assistant” is easy, but a time may come when I can’t hit the right key on a very small phone keyboard and I have to use the tablet a bit more.

It is much slower typing things out but you have two options:

  1. Option one; type it roughly and get the other person to read it. Brilliant for noisy environments like the pub and you don’t have get each word 100% correct. A few typos aren’t the end of the world and you’ll find people finishing off your sentence, so less typing.
  2. The other option is making use of the synthesised voice, either pre-programmed phrases or typing. This option is not very forgiving of typos; you have to get it 100% right or gobbledegook comes out.

What I have learnt:

  1. Although I know what I’m saying the listener probably hasn’t a clue. Luckily Julia gives me clear feedback on that one!
  2. Hand movements – like Charades – works on the simple repetitive things but not on more complex. i.e. we have an understanding that doing a ‘C’ shape with my hand stands for “coffee”.
  3. Maybe I should have listened to Mr Tumble and learned sign language whilst watching Cbeebies with Dexter?
  4. We have used Facebook messenger quite a lot but Julia finds it frustrating when Jonny suddenly answers a question that I sent him on messenger out loud.
  5. Julia misses my voice – I never imagined that would be a side effect but now it seems obvious. I’m so grateful to Abi from church who mentioned it in the first few days of my diagnosis. I did voice banking a year ago when my voice was up to it. Julia now associates my electronic voice with me. If you have MND and your voice is pretty good get voice banking done ASAP, you won’t regret it.
  6. It gets you thinking what you are going to say/ask ahead of time. E.g. when I went down the pub with my good friend Dave I pre-programmed a set of questions and some phrases so it saved some time typing.

How am I doing?
I’m quite tired. Julia says I’ve regressed to full teenager; I sleep most mornings and I feel I’m not getting things done. I used to miss breakfast so now she wakes me up at 9am for a feed and medicines.

One theory is that I’m struggling to breathe at night and that’s what’s making me tired. So they have given me a BiPAP – Non Invasive Ventilation.  It is a bit weird but I’m getting used to it slowly.

I’ve started to struggle with the blended food so now I do soups for lunch. Good news is that the chocolate puddings are still going down really well! And Audrey (my PEG tube) is getting more use – up to 4 times a day.

We love the MNDA

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I hadn’t fully realised that the majority of the key NHS people I’ve been seeing are funded by the MND Association! In fact the MND clinic that I attend every three months doesn’t cost the NHS a penny. So the MNDA not only fund research, fund equipment but they also fund positions in the NHS with wonderful people and that makes life as comfortable as possible for people like me and our families. We love the MNDA!
So we must raise loads of money for them! Even a fiver would help. Thanks.

Our story was featured in the latest MNDA campaign. (click here to see latest campaign)

Here is a team photo of the wonderful people that have been looking after me:

I can’t imagine living in a country where you don’t get free healthcare at point of use and I can imagine that this would cost a lot of money if I had to pay. The whole team is wonderful and so positive.

So how many people does it take to look after one person with MND?

Oxford unit:
Consultant Profs Talbot and Turner
Initial Diagnosis and I see one of them every 3 months at the MND clinic at the West Wing of the JR Hospital Oxford.

MND Nurse – Rachael
I see at every clinic appointment, but I know I can contact her at any time with queries. Always very positive!

 

MND clinic visitors – are there coordinating the MND clinic and make the whole experience friendly. They know where you are meant to be and generally look after you in the clinic: Lesley, Dave and Penny – all MNDA volunteers!:

Ventilation unit physioAnna – keeping me breathing, my airways open and my chest free of infection. She supplied the Scream Extractor. Recently she said my lung function measures had improved!  That’s not supposed to happen.

SALT: Charlotte – Speech and Language Therapist – making sure I don’t take too many risks while eating and showing me techniques to get the most out of my lousy swallow.

SALT : Tracy and Gemma – I banked my voice with Tracy last year in August – and now I’m using a tablet called a Grid Pad to aid my speech which sounds a bit like me.

Clinic Dietitian Laura and the community Dietitian team. I had a PEG feeding tube fitted in November last year and now I’m using it to get the nutrition. I eat a small amount “for pleasure” – mainly chicken tikka masala and various chocolate puddings.

Occupational Theapist: Jenny: 
I’ve just started seeing Jenny as my neck is starting to get weak and painful towards the end of the day. I have just received a Sheffield Snood – or Head up Collar.

GPs
Manage my day to day needs including various courses of antibiotics in January and adjusting puffers. They recently gave me a pink puffer  – which actually tastes pink.

Oh and last but not least..

 

My own private nurse / wife, Julia in between nagging me to stop choking she makes sure I get the best care and reads up on what we should be doing to make my quality of life as good as possible. I never imagined marrying a nurse all those years ago would be so useful!

Many thanks for your generous donations!

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.