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.
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.
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.