June 2026 Special Days
Meet Jim...
When MND took away the use of Jim’s arms and legs, hobbies he once loved like gardening and cooking very quickly became a thing of the past. Determined to push boundaries and try something new, Jim became fascinated with the night sky and a grant from the MND Association now means he can take stunning photos of stars and planets using a cutting-edge smart telescope.
We interviewed Jim in March 2026.
My special day
I used to play the keyboard, do a bit of gardening and a lot of cooking, but since I’ve lost the use of my limbs, I can’t do that anymore. So I got a new hobby to stop me sitting around doing nothing. I think it’s really important to try and keep yourself busy. The MND Association gave me a support fund towards a new smart telescope. It’s controlled through my iPad, it’s amazing. I have EyeGaze on my iPad and I use that to control a lot of things like the TV, Alexa and my smart telescope. It’s frustrating when the weather is wet or cloudy as it means I can’t get out and use the telescope. But, even when the weather isn’t good I can still process the images and look through them on my iPad. I can still keep busy.
My younger son finds it quite interesting. He’ll even go and set the telescope up for me. He’ll take it outside and get it ready for me as that’s the only thing I can’t do by myself. Everything else I can do through my iPad.
It’s amazing what you can see. The great thing about this telescope is you can take photos of the night sky as well. I find it takes me away from my MND. Sitting outside, looking at the night sky, spending time with my youngest, it all takes my mind away from MND. It keeps me active and helps me get through the days that aren’t as full as they used to be. I’m of the thinking if you don’t do anything with yourself, you’re going to get worse a lot quicker so it’s really important to me to keep active and keep doing things that bring me joy and the Association has helped me do that.
Early symptoms, diagnosis and adapting to MND
I live in Winchester in Hampshire. I have a wife and two sons, one has just turned 16 and the other one is 21. I used to live in South Africa and worked as a store manager for a company called Woolworths which is a high-end retailer, kind of like Marks and Spencer’s. My wife – who is South African – and I decided to move back to the UK in 2022 because we thought it would be better for our family.
By the time we had moved back to the UK, my symptoms begun to show worse than they had. The first symptom I had, looking back, was in early 2021. I started losing strength in my right arm and was having difficulty picking things up. I didn’t take any notice of it at the time and then in 2022 I started falling over. Over time, things like picking up a saucepan became difficult. Eventually in early 2023, my wife told me I needed to see the GP.
At first, they thought I had a brain tumour so I was sent for tests but everything came back negative. I had an MRI, blood tests and an EMG (nerve conduction test) which is where they picked up there was an issue with my muscles. After about three months of tests, they gave me an MND diagnosis. To be honest, the diagnosis didn’t come as a shock because by that time and after all the tests I’d had, the result was either going to be MND or MS. We have MS in the family so we were pretty certain it was MS, but unfortunately, when I was sat in the neurologist’s room with my wife and I was told the MRI had come back clear, I know it was going to be MND. By that point I was more or less expecting it to be one or the other and with a clear MRI result, it had to be MND. I think the neurologist was quite surprised with how I reacted.
From early 2021 to when I was diagnosed in 2023, my symptoms were gradually getting worse and my family were getting more and more concerned because I was falling over, one time I even fell down the stairs at home. So when I found out I had MND, I felt a bit of relief that I finally had a name for what was happening to me.
I already knew about MND because my wife’s grandfather had MND.
After my dad passed away in 2008, my mum met this really nice guy and he was diagnosed with it as well. So my mum has been through it with her partner and now she’s going through it with me.
Me and my family were moved into more suitable accommodation about 18 months ago. I have a wet room downstairs, I basically live in the lounge and have a ramp at the front door so I can get out and about on my own in my wheelchair. There’s a hoist installed for me and I have a specialised bed as well. It’s a great house for me.
Association support
The MND Association have been fantastic. The support I get from Jen, my Association Visitor, is brilliant. Jen’s been visiting me for almost three years. She first came to visit me just after I had been diagnosed. Jen will come round and ask us how we all are, we’ll chat, sometimes we go out to Costa Coffee which is just up the road. She’ll also take me out on day trips and she’ll get the bus with me to my MND appointments. She’s more of less become part of the family. Her support makes a big difference.
I’ve also had a grant from the MND Association towards an aquarium. We are in the early stages of installing it. My brother-in-law is helping us set it up.
My eldest and his girlfriend have been put some substrate wood and rocks, my wife has bought some plants and in about two weeks we’ll be able to put some fish in. It’ll be lovely to have something to look at and get lost in that doesn’t require me going outside and isn’t weather dependent!
My eldest and his girlfriend have been put some substrate wood and rocks, my wife has bought some plants and in about two weeks we’ll be able to put some fish in. It’ll be lovely to have something to look at and get lost in that doesn’t require me going outside and isn’t weather dependent!
Advice to others
Spend time with your family and make memories together.
Making every day matter when you have MND is really important. You have to do things that bring you joy and make you feel like yourself again. Spend time with your family and make memories together. They are living through it with you so they understand what’s happening more than anyone.
Try and keep yourself busy, it doesn’t have to be every day, but most days keep yourself busy with things that make you happy. Don’t be scared, be positive and enjoy your life as much as you can.
