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…

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.