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Living with MSA

Author: Diane Ball
08 March 2018

Diane and Geoff Ball will be celebrating their 40th wedding anniversary next month. Geoff was diagnosed with Multiple System Atrophy (MSA) in 2013, and last year Diane composed a poem about coping with the condition day-to-day. Here she writes about their experience of living with MSA.

Geoff started having bladder issues and some sense of not being quite safe on his feet in 2012. He was referred to neurology at Salford Royal and after an initial assessment and an MRI  scan some changes were seen in his cerebellum. Early in 2013 he was diagnosed as having probable MSA type C (Cerebellar). His symptoms have slowly progressed, with increased problems with balance, speech, swallowing and bladder, leading to now being hoisted, using a wheelchair and having a PEG tube. But with adaptations at home and a wheelchair accessible vehicle we have continued to enjoy our home life and getting out and about. 

We have been so fortunate to meet many amazing professionals – the long term neuro conditions therapy team, speech therapists, dietitian, bladder and bowel team, district nurses, the Bolton Hospice Day Therapy Unit who have supported and encouraged us along the way, as well as our present support team the Palliative Care Therapy Team, the social worker also based at Bolton Hospice, and the Community Macmillan Nurse. The MSA Trust specialist nurses are also amazing and we are grateful to them. 

We have enjoyed going on holidays to adapted self catering properties - you can see us pictured on the promenade in Grange in October 2017 just before Storm Brian! And we enjoy the times we can spend with our family - two sons, a daughter-in-law and four lovely grandchildren.

We were both involved in music and leadership in our church for all our married life until Geoff’s MSA curtailed his involvement. Now Geoff and I host the Greater Manchester MSA support group which meets at our church, St Andrew’s Johnson Fold, every three or four months.

The symptoms of MSA are very varied and people with the condition may have some or many, and everyone experiences it differently, however for Geoff one of the frustrations has been the variation from day to day - hence the poem.

Who has got Grandad’s controller?

Who has got Grandad’s controller
Somebody must have, I’m sure.
No, not the one for the TV and light,
Or the lift, or his ‘up and down’ chair

Who has got Grandad’s controller
You’re all going to have to be searched!
in your handbags and backpacks
Without it we’re all in the lurch

On Monday he had a real lean to the left
On Tuesday, a lean to the right
On Wednesday his chin was down on his chest
And today sitting here, bolt upright

One day the waterworks run like a dream
The next they’re on a ‘go-slow’
Sometimes the legs stand up ‘Just like that’
Others it’s ‘Yes? Yes? Yes? …. NO’

I’m sure someone just thinks it’s funny
Changing the settings like this
But it’s actually driving us crazy
We’re all in a bit of a tizz

Someone must have Grandad’s controller
So own up - you know that you should
And if by some chance it turns out to be you
PLEASE turn all the settings to ‘good’

This month is MSA Awareness Month. For more information visit MSA Trust

See more articles in People and places

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