Geoff & Diane's story

Geoff & Diane's story

  Published to Your Stories on Mar 01, 2018

Here is Geoff and Diane's story...

"Geoff started with symptoms of bladder issues and some sense of not being quite as safe on his feet during 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 and early in 2013, he was diagnosed as having probable Multiple Systems Atrophy (MSA) type C (Cerebellar). His symptoms have slowly progressed with increased problems with balance, speech and 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 and getting out and about. 

We have been so fortunate to meet many amazing professionals - The Long Term Neuro Conditions therapy team, the Speech Therapists, Dietitian, Bladder and Bowel Team, District Nurses and Bolton Hospice Day Therapy Unit who have supported and encouraged us along the way, as well as our present support team of the Palliative Care Therapy Team and Social Worker also based at Bolton Hospice and the Community Macmillan Nurse. The MSA Trust Specialist nurses also are amazing and we are grateful to them. 

We have enjoyed getting out and about and 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 been involved in the music and leadership in our church for all our married life until Geoff’s MSA curtailed his involvement though now Geoff and I host the Greater Manchester MSA Support group which meets at our Church, St Andrew’s Johnson Fold, every 3 or 4 months.

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

One of the frustrating things about MSA, from our point of view, is that the symptoms can change from day to day. You just get used to something then the opposite happens! I began to think that someone had a way of changing the symptoms in order to confuse us!!

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’

Diane Ball 2017

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