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…

Pampered

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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

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.

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.

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…