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!

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.