Carole Singleton first noticed signs of motor neurone disease (MND) when her walking didn’t “feel right”.
Although she didn’t think she would be diagnosed with the same condition as her mother, medical investigations at Ipswich Hospital confirmed she was living with MND.
Carole with her daughter at the theatre
The now 75-year-old, who is taking part in a new drugs trial at Ipswich Hospital, said: “I’d noticed my walking gait wasn’t quite right but put my worries to one side. Then during a day out to the theatre in London with my daughter Rachel I asked her what she thought. She said I looked stiff, and by the end of the day I had to link arms with her to steady myself.”
Carole, who lives in Felixstowe, went to her GP and was referred to the Neurology team at Ipswich Hospital where she had a series of medical appointments and tests which confirmed her MND diagnosis – just like her mum 30 years before.
Carole said: “My mum died of MND so it was in the back of my mind that it could be that – but I hoped it wasn’t.”
Motor neurone disease is a condition that affects a person’s brain, nervous system and muscles that gets progressively worse over time.
Aside from her partner, Carole waited for lockdown to lift before she told her daughter and friends.
“It was very hard waiting to tell them I’d been diagnosed, but I wanted to tell them face-to-face.” she said.
Carole also had treatment for breast cancer in 2013, which she is now recovered from, but said she is doing everything she can to enjoy her life.
She added: “Even when I was having treatment for breast cancer I remained positive, and although I’m living with MND I’m living my life to the full while I can – going on holiday, to the theatre, out with friends. I want to do everything I can – including be part of a research study into treatment for MND.”
Carole enjoying her birthday at a cocktail bar
Currently there is only one licensed medication for people with MND called Riluzole which on average extends a person’s life for another two or three months.
As well as taking Riluzole, Carole is also participating in a drug trial at Ipswich Hospital looking at the effectiveness of existing drugs used for other medical conditions and how they may help with MND.
Carole said: “My brother told me when our Mum was diagnosed, Riluzole wasn’t available as it was on trial, so I feel fortunate I’m able to take it as well as be a part of the MND-SMART research study that I hope will help people in the future.”
As part of Carole’s ongoing medical care, she has regular appointments at her home and in hospital with MND specialist research nurse Kate Barber, who is also part of the research study, which is led by the Euan MacDonald Centre for Motor Neuron Disease Research at the University of Edinburgh.
MND specialist research nurse Kate Barber
Kate said she has regular contact with Carole to see how she is feeling and the ongoing impact of MND, as well as how her trial participation is going.
She said: “I see Carole in her home and when she comes to hospital for her regular clinic reviews. It means it’s a very joined-up approach between the Research team and the clinical team at the hospital, and means Carole gets more access to myself and her doctor.
“MND-SMART is a really important study to see how effective existing drugs that are used for different medical conditions can have on people living with MND. More and more drugs are being brought into the study all the time and we hope they have an impact for patients now and in the future.”
Rachel Dakin, MND-SMART trial manager, credit: Maverick Photo Agency
Rachel Dakin, MND-SMART trial manager from the University of Edinburgh, said: “It’s great that the team at Ipswich hospital are able to provide an opportunity for people living with MND to participate in a clinical trial.
“We believe that research is part of the best care and the fact that Kate covers both of these areas is an exciting approach. We’re very grateful to Carole and all the participants of MND-SMART who give up their time to help find new treatments for MND.”
More information about motor neurone disease can be found on the NHS website.
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