Will you help to rewrite the future for people with MND and their loved ones?

Fiona and her dad

Fiona’s Story

My dad Andrew was diagnosed with motor neurone disease in September 2021, after he had difficulty with his hands and not being able to grip things properly. When he first received the diagnosis, the specialist said that while things would gradually progress, things usually get much more serious at the 2 year mark. He passed away in October 2023 so it was just over 2 years that he lived with the condition.

We were all devastated when we found out. I think the worst part was knowing there was now a quickly approaching finish line. Especially with my dad being family-oriented. He had young grandchildren and we all felt very aware that he would miss out on them growing up, and they would miss out on him being there. 

I think he genuinely cared more about us being OK, and he dreaded leaving us. He always looked after others and I think he wanted to make sure we were OK for as long as he could. And then he had to adjust to being the one getting taken care of, which I think he always found hard and would apologise each time we had to help him get dressed or go to the bathroom. He was very independent and self-sufficient, so I think looking ahead to losing the ability to look after himself was really daunting for him. I didn't want to see him suffer, but I accepted early on what was to come."

Fiona's dad

I want to change the future for people with MND

"After the first year, my dad started to choke on his food and drink a lot more, so he ended up opting for a PEG tube (Percutaneous endoscopic gastrostomy tube). He wasn't sure about the PEG at first, but he met another gentleman at an MND support group that he started attending and he showed my dad his PEG tube and spoke to him about it and I think that reassured my dad. His speech got a lot more difficult to understand, however thankfully when he was diagnosed, my dad received the technology to bank his voice, so when he couldn't really talk at all any more, he could use his tablet with either a remote (while he still could) or movements of his head to select options for him to speak to us or his carers, and it still sounded like his voice. He received a powered wheelchair and a manual one, and while it wasn't until the last few months that he was in the wheelchair all the time, he still used them as he started to fall more often.

In the second year, we did as many activities and days out as possible, seeing family and friends. But he relied completely on others and got to the point where he couldn't be left alone in the house. By the end, there wasn't much he could do as he lost all strength in his hands and arms. 

My dad had a lot of support that I wasn't even aware was available until we went through his diagnosis. The voice banking software and equipment, specialised powered wheelchairs, and equipment in the home."

All of these things cost money to develop and provide to those who need it. And without the research in the first place, those things wouldn't be available. But more importantly, if there's ever to be a way to either stop the progression of this disease, or even potentially cure it, then research is vital."

I'll help fund this vital research

"I’ve been fundraising for MND research since 2021. It started with myself and my sister taking on the challenge of doing 3000 squats in November. We raised over £1,000. I never thought we could raise so much! The following year, it was 5000 squats in November, and we raised another £700. Then in August 2023 I did 60 miles over the month and raised £505 by myself. Every time, Dad would ask how I was getting on and sometimes I would go over to log my squats or miles with him and we would laugh and he would be so pleased.

It always put a huge smile on his face (and a tear in his eye) when my sister and I would do these fundraising challenges. It meant so much to him that so many people wanted to donate and show their support. Having a condition that will slowly reduce your quality of life, with no way to stop it, is so difficult to deal with mentally and emotionally. But I think knowing the research is happening can help those fighting MND. And their families feel like there is something we can all do to contribute towards finding hope. 

Now I’m taking on the Sheffield Half Marathon and The Big Walk to raise funds for MND research at the University of Sheffield."

My Dad’s MND came seemingly out of the blue, so really the more we can do to fund research, the more people we can protect and treat in the future.

You can support Fiona’s fundraising here JustGiving page