Today is the last day of MND Awareness Month, so today I want to raise awareness about something relatively obscure, which few people will know about as it doesn’t impact everyone with MND – emotional lability.
The thing about MND is new things crop up all the time. I was talking to my best friend of eleven years about what we’re going through, and she just looked at me and said ‘I would never have thought of that’. With most things, I didn’t think about it until it started happening.
We’re learning as we go along, climbing a cobbled incline, stumbling but carrying on. We learn with each trip, and it makes us better able to deal with what we have to face at that time.
You may remember a post from a few weeks ago in which I said that the MND medication was conflicting with Mum’s antidepressants, and some of the problems that were arising from this. It turns out Mum actually has emotional lability.
Emotional lability, according to the MND Association, is caused by an abnormal motor response on the pathway between the outer layer of the brain and the brain stem. You can read more about it on Information Sheet 9C – Managing Emotions.
It is uncommon, but is more likely to occur if you have difficulty speaking or swallowing. This is certainly the case with Mum. Her speech slurring was our first indicator that she had PBP.
Six months after noticing this symptom, I am struggling more and more to understand her – often having to ask three or four times for her to repeat herself. Even then, she is starting to have to type her sentences and use her speech app more. Sometimes I am able to tease out a few words, and fill in the blanks for her. It is increasingly hard to communicate – not that that will ever stop me trying. I won’t let her feel alone.
Her swallowing is also getting worse. I still have to write a blog post about her birthday (we have so much happening at the moment – I will catch up, I promise!), but Mum was disheartened when she couldn’t swallow her birthday cake, despite it being covered in warm custard, which usually helps. I maintain she was struggling because her fiancée didn’t cover it when he put the remains of the pretty awesome pug cake in the fridge, so it was a bit stale, but it was still upsetting for her. As I write this, she is at an appointment with the anaesthetist, preparing to have the PEG fitted next week.
This doesn’t mean emotional lability is to be expected, but it is more likely. If you’ve read this far, especially if you didn’t read the post a few weeks ago, then you’re probably wondering what it actually looks like. Science is all well and good, but how do you know what to look for?
Basically, emotional lability means that emotions are much more wild and unpredictable. Like everything with MND, it impacts different people in different ways – because nothing can be straightforward in this fight.
For some people, they might laugh when they’re sad, or cry uncontrollably when they’re happy. For others, particularly strong emotions will emerge in inappropriate circumstances, and they can’t be stopped. For others, emotions are just heightened on such a large scale that it can become distressing. Mum’s emotional lability manifests itself with the last two of these options.
It’s heartbreaking to watch her cry hysterically whenever she feels sad. Any negative emotion can reduce her to tears. She can’t help it, and I know that her sobs don’t necessarily mean she is despairing as much as it may seem. There’s also nothing we can do to stop it. Tackling emotional lability is like surfing the roughest waves. When she cries, we hold her, we stroke her and try to calm her by taking deep breaths. We look her in the eye, and we smile. We provide whatever comfort we can until she rides the wave to the shore.
On the other end of the spectrum, God how she can laugh! She’s always been as daft as a brush. Silly things have always made her laugh – it’s probably why she loves our pug, Oscar, so much. When she laughs, she can’t stop. Twenty paces up the cobbled hill of Main Street in Haworth had her roaring! We weren’t bloody laughing – doing our backs in trying to push her highness to the top. Hmph.
Talking about inappropriate times when these emotions take over – on her birthday we went to York Minster, essentially because we forgot to book anything and that was the only place we could get in. We were in the Chapter House, a part of the Minster designed to echo sounds. Naturally, this is where she ended up laughing uncontrollably – where it could reverberate nice and loudly.
It was sparked off by the noise of her wheelchair passing over a grate echoing. I know what you’re thinking – what’s funny about that? It’s not really amusing. That’s the point. The instinctive pause when you’ve accidentally drawn attention to yourself in a silent room was enough to make her laugh, and she couldn’t stop.
People stared, but who cares? Let them look. Let them think whatever they like. ‘What a lunatic she must be’. Too right – she’s my mum, my little loon! And we love it!
Of course we want her to be able to regain control of her emotions, but these periods of laughter act as a somewhat positive counterbalance to the times she cries. It gives us, as her carers, a bit of comic relief. Although it’s exaggerated, we can hear her happiness, and what can be more important?
Emotional lability is usually temporary, and we are hoping that’s the case. I’m trying to persuade her to take up meditation or other mindfulness practices which can help, but knowing her she’ll think it’s daft and that will be enough to make her laugh all over again.
Still, as with most aspects of this disease, we’ll see. We’ll do what we can. Keep calm and carry on, and all that.