Robert's story

Robert was 57 years old when he was diagnosed with MND. He has a close family, all living near his home in North Wales, and was looking forward to retirement with his wife Jane.

On the day he was diagnosed Robert was told to ‘retire tomorrow and enjoy yourself because you have only two years to live’. That was in summer 2014.

Robert said:

Living with MND is difficult enough but the finances are even more difficult. From being the main breadwinner in the family before my diagnosis, to now having no income coming in is more worrying and more stressful than the MND itself and it’s never going to get any better. All we can see is that the finances are going to get worse and worse.

“I didn’t know what PIP (Personal Independence Payment) was - I thought it was something out of an apple and I didn’t really want to claim for something. I had never claimed for anything in my life.

“But as someone else explained it to me...all through your life for 43 years you have paid tax and National Insurance and you have never claimed on it before and your National Insurance is like your pension pot that you have been paying into and now because you need it most in your life you are just drawing down on it, and that’s how I look at it now.

Jane said:

Motor neurone disease constantly drains on your finances. We address one issue or one concern; when Rob got stuck in the bath we realised we needed a wet room. We addressed that issue and then we got a self-cleaning toilet and thought ‘right we are OK now’, and then Rob wasn’t great with the stairs so we had to change the room downstairs to incorporate a bedroom.

Rob took out a loan to buy an adapted car and we needed a new bed too. MND takes all of your resources that you have – not just financially but emotionally and you are constantly chasing, thinking about where can you get some support.

MND Costs - Robert and Danielle
MND Costs - Robert family group
MND Costs - Robert and Jane Wedding

Robert is an electrician, a qualified counsellor and taught IT and worked hard but his passion was for running – completing marathons all over the world.

Danielle Tunney, Robert’s step daughter said:

"Before Rob got too poorly we used to go running together four times a week. Rob is the rock that holds everybody together and I feel that MND has actually brought us all very close as a family. But it has changed things too. Whereas before would always buy presents for everybody at Christmas now we just buy for the children but it is more of a family experience and we will spend it together and I hope we can have this Christmas together too - that’s a big milestone for us.

"Things become more about life experience and time becomes very precious – I think that’s more important than money but it has definitely been a struggle since Rob hasn’t been able to work."

Jane said:

“Motor neurone disease came into our lives and rocked it. The physical and the emotional aspects of MND are a drain but the financial implications limit everything you can do.

“We prepared for our future; we have saved and we have worked hard all our life and to support the needs of MND our savings have gone and there will be no pension.”

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