DCSIMG

Disease ‘just takes your life from you’

Meeting of Multiple System Atrophy Trust at Thame Guides HQ - pictured l-r are Katie Heywood - MSA Trust, Sue Parnell - support group, Neil Hunter - MSA Trust, Samantha Pavey - MSA Trust and front is Peter Parnell - support group and Sue's husband

Meeting of Multiple System Atrophy Trust at Thame Guides HQ - pictured l-r are Katie Heywood - MSA Trust, Sue Parnell - support group, Neil Hunter - MSA Trust, Samantha Pavey - MSA Trust and front is Peter Parnell - support group and Sue's husband

A new group has been launched to raise awareness of a rare muscle wasting disease.

Sufferers of multiple system atrophy gathered for the first time at Thame’s Girl Guides hall to discuss the condition, which is considered worse than Parkinson’s disease.

Peter Parnell, 69, has suffered with the condition for almost 15 years but was only diagnosed in 2009.

He said: “I had to give up everything I used to do, golf, walking and cycling.”

Mr Parnell said the slow deterioration in his body was very noticeable now.

“I’m greatly losing my voice, my sense of taste. I can hardly walk at all or stand up. It just takes your life away from you.

“I try to keep it off my mind. I do get slightly depressed at certain times.”

Mr Parnell hopes the meetings, which his wife Sue and the Multiple System Atrophy Trust have been key in setting up, will help people cope with the condition.

“It’s a place to talk. It’s all the same people who have got the same illness.

“The meeting went very well, it was record numbers (50 people) for a first meeting. People have responded very well.”

Mrs Parnell campaigned to hold the meeting after one she previously attended with her husband in Cheltenham stopped.

For more information on the condition and how to support sufferers visit the official website at

www.msatrust.org.uk

 

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