Vivienne’s story

Vivienne's husband Tony was eventually diagnosed with MND in January 2013 after having symptoms for around eighteen months. He died surrounded by his family in 2016.

Juggling the need to work with caring for Tony, Vivienne faced immense emotional, physical and financial strain and continues to feel the impact financially today and long into the future.

Tony worked for LOROS which is a hospice for the terminally ill in Leicestershire. He recognised the signs of motor neurone disease and was convinced that that’s what was wrong with him. But by the time we got the diagnosis, it was too late, because everything had stopped working in his arms so he couldn’t drive and so we couldn’t go ahead with all our plans for retirement.

“MND is devastating but the financial impact is crippling. If you can’t move your legs or walk you’ve got to adapt your house. You want to move into a bungalow but you can’t because it could take too long to sell up and do that. So you have an extension built and even then it’s not quick enough. We had to use our pension so that’s our pension gone and that will have an impact later on in life.

“There was building work for the extension and to widen all the doors, the heating has to be on all the time as there’s always somebody in the house, the car had to change, just about everything had to change. But it had to change fast because if it doesn’t change fast then everything has changed again and you’ve gone onto the next stage of the disease. So the one thing you have to do with motor neurone disease is think, ‘do I need that?’ And if the answer is ‘yes’, then do it straight away."

MND Costs - Viv and family
MND Costs - Viv & Tony's wedding

Tony and I were really lucky, we both had really good employers. Because Tony worked at the local hospice they were very understanding of his condition. They made all the adaptations to his desk, and he was able to use his wheelchair everywhere and was able to get to see people at work. But when he went down to two days a week that was a big financial impact.

So I think on the whole as far as our employment was concerned and our income was concerned, we were the lucky ones. Some of the people that I’ve heard through the support group that we go to haven’t been as lucky, some of the them have had to completely finish their job there and then because they’ve got the disease or some of them have not been able to leave work as and when they need to, to support their partner. So we were really lucky in that our employers were so supportive.

“When Tony died we were in limbo. You didn’t know whether you should forge a new life or to carry on with campaigning and raising awareness; could I be around other people with MND? But I do it because the impact on your family is huge.. no other family should go through what we’ve been through.”

Life with motor neurone disease is tough enough without being pushed into financial hardship.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262