2 years ago today, the 21st December 2018 I was given the official diagnosis of MND, I already knew I had it, Dr Google had told me that many a time!  But I had been having lots of tests to rule it out, and there was that tiny glimmer that the MRI scan may show a trapped nerve in my neck, or the blood test would show I had Lymes disease.  Both of these issues can mimic MND symptoms so until they’re ruled that out you have a very small glimmer.  I recall the MRI scan clearly, even though I was drugged up on diazepam as I’m terribly claustrophobic, I recall dancing in the corridors and hiding behind the curtains.  Lesley had enlisted the help of my sister Deanna to cope with me so they kept steering me back to the waiting room.  After the dreaded scan was completed I asked the radiographer if she could tell me anything.  She cheerfully said “I can’t officially say but the good news I can tell you is that nothing sinister is showing up!”  How many people want something sinister to show up? I wanted it, I wanted something to be there, anything, I’d take a tumour on my spine over MND any day but of course she didn’t know that.

So on that day we met with my neurologist at Bedford Hospital, we sat in his room, for some reason he asked to examine me, I think he was buying time as that seems pointless now.  He then confirmed that he was pretty sure I had Motor Neurone Disease, can’t remember much else, except when I asked him how long I had left he replied 6 months, maybe a year, Lesley was crying, we stood up he shook our hands and wished us both a Merry Christmas.  That’s the brutality of MND, there is no treatment, and there is no cure.  Now you could be excused for thinking that I have outlived his original prognosis and I have but I have only survived this long as I have chosen intervention.  Dr Manford was correct really as within 6 months of that appointment I needed help with my breathing, within 10 months I could no longer eat.  So if I had chosen not to accept help, and some people do, simple fact, I would not be here.

I walked out of that appointment, I talked to the neurologist, I went home and probably ate dinner, today 2 years on I can’t do any of that.  The neurons in my body, the neurons that talk to my muscles are dying and no-one knows why or how to stop this happening.  I can no longer talk, I communicate via an alphabet chart mainly, I point to the letters and Lesley works out what I am saying.  The problem with this is I cannot spell for toffee, it can be frustrating for both of us but also there are funny moments.  After one particular testing Sunday afternoon, Lesley said she was tired of playing charades every day and could we have some ‘quiet time’.  ‘Quiet time’ was always my saying when I was annoyed with anything it was funny when she used it, even I laughed, that rarely happens these days, tables had turned.

Thinking back to my last blog a lot has happened, my body has changed as you all know I am very resistant to any changes at home, but I give in eventually.  In September, I finally gave into the idea of a hospital bed it was getting harder to get out of our standard double and Lesley’s back was hurting bending down so low to get me dressed.  So just 4 days after agreeing it arrived, our bed was moved back upstairs and a single bed brought down and placed next to my hospital bed for Lesley to sleep in. Who knew our dining room was so roomy!  It was ok to start with but then I just couldn’t get comfortable in it, I can’t sleep lying down as I struggle to breathe so I need to be propped up, well I kept sliding down and was continually tapping on the side of the bed for Lesley to get up and move me.  After about two weeks of waking her up every hour I think she was ready to put a pillow over my head, so I decided to try sleeping on my recliner chair in the living room.  This has worked a treat and I have been known to sleep 12 hours or more in this chair! 

 
October saw the delivery of my electric wheelchair, I passed the driving test both indoors and outdoors, it’s very comfy a bit like my recliner chair but on wheels.

By now I was needing my ventilator more and was using it for around 20 hours a day, the beginning of November I was due a check up at Papworth Hospital, the appointment was for 9:30 am, these days it’s not that quick getting out of the house so we were up early to be prepared my pet hate is still lateness!  All was going to plan until Lesley attempted to get me in the car, suddenly I couldn’t shuffle, normally with her hanging onto my trousers and helping me I could do it but not today.  So at 7:30 am with the wheelchair sliding into the gutter and me slipping to the floor a delivery man appeared out of nowhere and rescued us.  Lesley got me back in the house and the appointment was cancelled and re-arranged for 2 weeks later.  I had to accept that I would no longer be able to get into a normal car.  At the end of November and with the help of hospital transport I attended my Papworth appointment, my blood oxygen levels were good so the Nippy (ventilator) is doing its job of removing the carbon dioxide from my body.  As I’m becoming more reliant on the breathing machine I was issued with a spare, just in case it breaks down.  While we were there the medical team insisted that we get help at home, something else I really don’t want, I don’t want carers, neither of us does but maybe now was the time to start thinking about it.

Due to not being able to get in our car anymore, Lesley contacted Motorbility and arranged to swap it for a WAV, (wheelchair Assisted Vehicle), a bloody van with windows basically.  Not something I thought I would be travelling in at the grand old age of 56 and certainly not my car of choice.  But again acceptance is the key, this car will enable me to get out and about in my wheelchair it will give me a bit of freedom back.

The beginning of December saw me needing my Nippy machine 24 hours a day, when the mask is removed for me to have a shave or a wash I’m now unable to take that breath in unaided, it’s sad and very scary to know that without that machine pushing air into my lungs they would not work.

Around this time I also discovered I could no longer transfer from chair to wheelchair, to do this I have help standing up but could slowly turn round (hanging onto everything while doing so), but my right leg has absolutely no muscle left on it so one afternoon it decided it just wasn’t going to play ball, mid transfer I fell flat on my face.  Lesley rang our usual ‘help contacts’ but no-one was free to get me up off the floor so she pressed the panic button.  The call centre sent out two paramedics who arrived after around half an hour and the three of them got me back up onto the chair.

So the only way now out of my chair is using a bloody hoist, it’s  like a mini crane, a sling is wrapped round me and attached to the grabber bit and the operator (Lesley) presses a button and I’m lifted into the air, she moves the contraption, hovers me over my wheelchair and lowers me into it.  Think of one of those grabber machines at the seaside, I’m the cuddly toy about to be dropped through the hopper! 

We’re currently being assessed for help with caring for me.  Lesley had a telephone meeting with my newly assigned social worker, forms have been completed and now we wait for a panel of ‘experts’ to decide if I qualify, the Social Worker told Lesley she was pretty sure we would get some help.  This help will probably be in the form of carers attending twice a day to help with morning and bedtime routines, now I need hoisting everywhere it can all be a bit time consuming.  I think Lesley is managing just fine on her own but I’ve been persuaded we need to start the ball rolling.

Christmas is almost upon us, we had already decided to spend Christmas on our own, I’m still not allowing anyone inside and it seems a wise choice as infections are suddenly spreading like wildfire again.  So being in Tier 4 doesn’t mean a lot of difference to us, we will still have a couple of window visits I’m sure.  

Thank you to all our friends and our families for supporting us through 2020.  From the driving instructors who have taken time out of their days to wave at me through the window, for organising my birthday drive through, for performing such a great Christmas Panto on our front lawn.  To our friends who have popped by and made us laugh through the windows, to both of our families who have window visited and who’ve supplied Lesley with emergency groceries, the people who text or call most days to see if we are ok.  Everyone who has contributed to the MNDA, THANK YOU!  they are so close to finding a cure we will continue to raise much needed funds in 2021.
Hope you all have a peaceful Christmas, let us hope next year we can do more stuff together.