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."