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!

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…

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.