Joycie Somerville is 67 years-old and lives with her husband in a busy village in Lincolnshire. She was diagnosed with bulbar onset MND on 14 March this year.
Since retiring in 2009, Joycie has become a professional poet and now runs her own business. Joycie shares her thoughts on life with MND and the prospect of losing her voice.
"My symptoms are relatively mild at present but my speech is deteriorating quite rapidly. My swallowing is problematic and, just lately, I have had an ankle support fitted because the muscles are wasting under my left foot.
The worst thing about MND is losing my voice because public speaking and talking to customers has always been a huge part of my life. At times it feels as if someone is tearing my personality from me, bit by bit.
I have a wonderful speech and language therapist and she has provided me with the Predictable app on my iPad which is super. But life remains incredibly frustrating for me and for those around me. No more cosy telephone calls with my daughters and my grandchildren. No more singing or psalm reading in church.
I remarried 19 days after diagnosis and my new husband and I are battling through the enormous challenges that MND presents. With my wonderful family and friends beside me, we will make the most of whatever life throws at us.
Since the onset of my symptoms last summer, I have received nothing but the utmost care, consideration and kindness from every medical professional I have come into contact with; Dame Professor Shaw’s neurological team in Sheffield, the OT and community nurse from the Neuro Rehab Disability team, my speech therapist and the Orthotist in Lincoln, our local GP and her team - I couldn’t ask for more! The same goes for the incredible support from the Association, MND Connect and my local Lincolnshire Branch.
Last but not least, I have been able to call on the support of the MND Association Forum community, who have been the most welcoming and wonderful crowd you could ever wish to meet.
It doesn’t matter if you are suffering from MND, are a carer or whether you are on the forum because you have lost someone to the disease, I feel as though they are part of my family and I simply couldn't manage without their support, their advice and their genuine neighbourliness – not forgetting their sense of the ridiculous! They make MND seem so much more bearable.
MND hasn’t stopped me enjoying life, or laughing a lot, and it certainly hasn’t stopped me continuing with my business which is writing poetry. People would ask me to write personalised poems for them for all sorts of occasions and I really enjoyed it, so when I eventually I gave up work in 2009, I launched my own business.
I find it easier to write poetry than prose - it just comes very easily to me. Most poems take about 10 minutes to compose and I love doing them because of the pleasure they give other people. I have often recited my own poetry and for four years I was Resident Poet for Grimsby in Bloom in Lincolnshire.
My faith is profound and that certainly helps to carry me through the bad times. I find that terminal illness, for me, focusses the mind. It’s taught me to value every relationship I have and it has magnified my appreciation of the world, especially nature.
I believe that life is for living. There is nothing you can do to halt the progress of MND. My mantra is: ‘get out there, hold your head up high, be brave and try to keep smiling for everyone around you!’"
On coping with motor neurone disease:
The little puzzles you present
are known but to a few!
Cos Him upstairs in his wisdom
has selected me and you! (and the rest of us!)
A lot of what you mention
makes a load of sense to me
I struggle to turn over in bed
though I'm still active, don't you see?
It poses all sorts of conundrums
it just doesn't add up at all
sometimes days aren't so bad
Others drive you up the wall!
I know you get frustrated
and so do all of us
but we seem to just soldier on
and don't make a huge fuss.
It is the cruellest disease
with its individual progress
You just never know what each day will bring
that can cause a lot of stress.
The answers to your questions
would stretch the greatest brain
but we just soldier on with the anomalies
and try not to complain!
MND changes people's lives.
MND breaks people's hearts.
Keep these posers rolling
we know exactly where you are coming from!
A special poem for you at the MND Association:
You’ve got a captive audience with us
Who suffer MND
There’s no way around the problem
Cos there’s no cure, you will agree!
We are dependent on other people
To help us, and to guide
With MND there really aren’t many places
Where we can go and hide.
So we depend on you always being there
Perhaps a voice at the end of a phone
Perhaps someone to answer an email
You just feel you’re never alone.
It’s uncharted territory for us all
A bit of a scary world out here,
but we know that MNDA’s just a shout away
and that helps to ease the fear!
You may not appreciate what you are!
You may not appreciate what you do!
But from us with MND out here
We simply couldn’t do without you!
MND changes peoples’ lives.
MND breaks peoples’ hearts.
Without MNDA behind us every inch of the way,
The world would be a much sadder place for us all.
12/08/2014
