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…

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.