I visit my mum every two weeks, which is hard for a number of reasons. I miss her when I’m in London, and I feel guilty for not being able to do more for my family (trust me, there’s a whole other blog post about that – coming soon).
It’s hard when I get there for my two days at home. Every time, I notice small changes in Mum. I find it harder to understand her until I’ve acclimatised to her speech, and I notice each small weakness that the MND is causing.
This definitely gives me the impression that the condition is progressing at a much faster rate than it really is, and when such strong emotions come to the fore – as is inevitable with MND – it is even more difficult to take a step back and try to be objective, try to remember to appreciate the good. Sometimes you need to hear it from someone else.
My mum’s nurse has told us that, seven months after we first noticed the symptoms, Mum’s condition is good. She is doing really well. And it is a relief to hear.
When you’re told that someone you love has MND, most people will either ask about or look up life expectancy. It’s 2-5 years.
At that stage, most people don’t know about different types. So that average expectancy became the first blow. 2-5 years is such little time.
Then Mum, in tears, pointed to the page on the MND Association’s website, explaining the different types of motor neurone disease.
Progressive Bulbar Palsy. ‘That’s what I’ve got.’
Average life expectancy is six months to three years from the onset of symptoms. When she received the diagnosis, it had been four months since we first say the signs.
Since then, there has been a constant, low-level fear. Even three months on, we don’t know exactly what to expect.
Thank God for the MND nurses, who are able to assuage that fear and give you some hope.
To hear from a professional , who my mum is getting to know fairly well, that she is doing comparatively well is incredibly helpful because it makes us change our perspective, reflect on the positives.
Mum is, largely, still walking. She doesn’t need help breathing. She can still enjoy sewing and colouring. Her speech can still be understood, at times. It’s important to remember this.
The MND team enter people’s lives during, quite possible, the worst period they will go through. They meet people at their lowest, but perhaps also at their best. At their weakest, and their strongest.
So this short post is to them. Thank you for everything you do.
And here’s to Mum’s continued recovery from the PEG operation, and a long and happy life with our pug.