April has been a month of ups and downs. On 9 April our king size, dual adjustable, up and down bed was delivered. A great investment, it has two mattresses side by side and (independently) the head and foot of each mattress can be elevated as required. I’ve never been great at sleeping on my back, but this makes it much easier and improves my breathing and reduces the coughing and spluttering that was ruining my sleep.
On 15 April we had two stairlifts installed. One is curved and goes around four bends to take me from the ground floor to the first-floor landing. As it twists and turns on its journey it’s reminiscent of a fairground ride (just a lot slower). The second lift is much more straightforward and takes me from the landing to our second-floor bedroom. I will give a big plug for AST Services Ltd; they did a great job. The lifts are rented as nothing is permanent with MND, the price was fair and the MND Association contributed a grant of £1,500 towards the initial set up and rental costs. The lifts could have been purchased and rental would be the more expensive option after two and a half years.
On 19 April my Accora Configura twin motor rise and recline chair was delivered. Again, my grateful thanks to the MND Association who purchased it for me. It really isn’t the most beautiful piece of furniture, but it’s very supportive and comfortable and I guess that’s what’s most important right now.
Ups
The PEG is fine, and Sue has done a wonderful job of managing the daily flushing and weekly rotation. The support from the Abbot Healthcare nurses has been brilliant in providing advice and reassurance. During April we used the PEG to deliver Teglutik (Riluzole) medication and extra water. It’s easier to squirt water down the tube then make up and then drink rather unpleasant thickened water! I’d urge anyone in my situation to opt for a PEG as early as you can.
Another remarkable arm of the NHS delivered in April too. On the last day of the month, we were visited by a company called PC By Voice; they have loaned me a Housemate device programmed to operate plug in lamps and the TVs and Sky Q boxes in our living room and bedroom via an app on my iPhone and iPad. The system works by touching large icons on the phone or tablet, or by speech. As my voice is quite weak, touch is probably the best way for me to operate the system for now. In the longer term, it can be programmed to respond to eye gaze if required and that time may come. Incredibly, the NHS would supply an iPad if I didn’t already have one, or if I wanted to have a dedicated device.
12 April was eagerly anticipated as it meant we could at last meet up to six people in our garden as the second stage of the lockdown freedoms came into force! We enjoyed some lovely al fresco meals in April including a family lunch for my 66th birthday. We have also been able to stay away in our static caravan near Wareham in Dorset; it felt incredible to be somewhere else – away from home!
Pubs reopened for outdoor service, and lunches and a dinner out with friends and colleagues have been very enjoyable.
Some Downs
I’m definitely getting weaker. I’ve mentioned my voice, which on occasions is just a quiet and slurred whisper. My arms and hands are getting worse too; I know that because now I don’t really have the strength to unload the dishwasher. It’s the little things like this that you notice… something new is taken away every few days.
Despite having the new bed, I have had some bad nights when I’ve woken up several times seemingly choking on mucus and saliva. As a specialist at Queen Square told me, my swallowing is the problem. Everyone produces saliva all the time and we swallow litres of it every day without even thinking about it. But with MND, as soon as you lie down, the ability to swallow is compromised and things can get very uncomfortable.
You can never forget you have MND. Every time I move to pick something up, or to scratch an itch, to walk rather jerkily, I’m reminded that I have a serious illness that isn’t going to get better. Sometimes I’m surprised that I don’t feel chronically depressed about the situation. So far, I’ve been able to stay positive, scale back my normally high expectations and see the good side of the situation. I hope the feelings of positivity and optimism last as things progress.
So MND is bad for me, but I think it’s equally bad for those around me – particularly for people who maybe don’t know me so well. It’s the elephant in the room, and I quite understand why some people just don’t know what to say. As it’s so dominant in my life it’s difficult for me not to talk about it, so there are some awkward moments. How should you respond to the inevitable ‘How are you?’ question we all ask every day? There’s a danger that I’ll retreat to the comfort of home, my family and my closest friends. I think that might be a problem so, for now, I’ll work on the basis that I must carry on ‘carrying on’ as normally as possible, try to engage with other people as before, and try to make it as easy as I can for them.