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”

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.

You get less than this for murder

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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.

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.

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…