June 2026 Special Days
Meet Jay...
Jay, who is living with MND is determined not to let the disease take away his sense of community or adventure. Since being diagnosed with MND in 2009, Jay and his wife Sylvia, from the West Midlands, have made the most of every day, sharing their love of traditional Indian food with their local community at events held at their local pub to help raise awareness and funds for the MND Association.
We spoke to Jay in May 2026.
My special day
Every year me and my wife Sylvia travel to India for a month. We usually go for the month of January and stay with my family and my wife’s family. This year, the MND Association helped pay towards our flight with a support fund. When we visit, everyone comes and to see us and make us comfortable. Sylvia’s family take me wherever I want to go and my cousins visit as well.
Everyone helps look after me. We always have a good time. Sylvia does so much for me all the time, it makes me happy to see her looked after and spending time with her family. This year we went out a lot more because there are more wheelchair accessible places to visit. India is changing, it’s getting better for disabled people. Restaurants, beaches, parks, they are becoming more disabled friendly.
Life with MND
My name is Jay, I live in Tamworth with my wife Sylvia.
The first symptom I noticed was weakness in my muscles. I was working, running a small business, but then it got worse so I had to quit. I couldn’t focus on my work life. When I went to the doctors, they thought maybe it was gout. They did some tests, I had a muscle biopsy and a nerve biopsy. I was then diagnosed with motor neurone disease, but it’s very slow progressing. I’ve had MND for 17 years and for the first ten years it was okay, I had weakness and pins and needles, but things started to get worse. The last three years my legs have gotten weaker. I now use crutches to walk or I use a wheelchair. I used to push myself but my doctor told me I need to rest because I kept getting swollen ankles. In the winter, I don’t go out anywhere, I stay home a lot because of the cold.
I never give up on doing things I love. I try to do things on my own, but my mobility is getting worse. Two years ago I had problems with my speech. I went to speech therapy and it helped a lot. I was struggling to find the right word and connect sentences. The speech therapist gave me exercises to do which helped. I also had problems with my breathing, so now I do breathing exercises every day. I also exercise my hands and body every day, just basic exercises. Now, my legs are weaker and I have muscle wastage. Whenever we go out I always take my wheelchair. I can walk around using crutches, but my condition means if I fall, my legs aren’t strong enough to stop me or help me. So the wheelchair always comes now.
Campervan travels
Whenever my friends go out they take me with them. They also take me on holiday. We’ve travelled to Scotland, West England and South England. Wherever we go, I will take a video and upload it to my YouTube channel. I want to show what facilities are like so people like me know if it’s good to visit.
My trips away with friends has inspired me in many ways. I would like to get sponsorship for an accessible campervan to travel around Europe and raise awareness of MND. I can show people how you can still travel with MND and motivate people to get out and visit new places. I will make videos showing facilities and accessibility of places, the good and the bad. I want the campervan to have the MND Association logo on it. I want people to know about MND and the MND Association. All money raised whether on the road or through my YouTube videos will go to the Association.
I want to do something to make a difference. I want to travel and show people it can be done with a disability. I want to showcase accessible places and tell people about MND.
My wife, my angel, Sylvia
Sylvia is a quiet lady. She enjoys gardening, reading and cooking. She has a beautiful garden and grows vegetables we use in our meals and flowers.
She used to work part time in my cousin’s company, but when my MND got worse in 2019 she quit.
Now, she looks after me 99.9% of the time. She has dedicated her life to my happiness. Sylvia enjoys being at home rather than out socialising, reading a book or watching TV together. She’s always supportive of me. If I want to do something and she doesn’t agree, as long as I am happy she supports me.
When we have visitors at home, she always offers tea, coffee, snacks. Even my consultant says she is amazing. Everyone who knows Sylvia loves her. She is an angel.
Feeding to fundraise
I love eating. I used to go to my brother’s restaurant and watch the chef. I would learn and take videos, come home and buy all the ingredients, then re-create the meal. Everyone would complement my food, even my cousin’s children and children’s friends. Everyone comes around at the weekend to eat with us and spend time with us. Then I had the idea to fundraise through cooking.
Two or three times a year for the past three years, we make food to take to our local pub. Lots of traditional Indian dishes. I don’t get involved with cooking anymore, because my MND means my hands are affected. But I help and supervise and give advice. We have family and friends who come and help with the cooking.
We make ghee rice, papadum’s, chutney, dal, dosa’s, chicken curry, chapati. Lots of different dishes. We take them to our local pub and people come and pay £20 or £15 and we fed them and have raised hundreds of pounds for MND. We all come together and share food, laugh and raise money for MND.
Insipring others
I want to inspire other people and motivate them to make every day matter. If I feel lonely, I’ll call my friends and they come over. They never say no.
I want everyone to feel like they have someone they can get help from. That’s why my videos are so important to me, people contact me to say what a difference they made.
They might be depressed, feeling lonely, stuck inside, but they watch my videos and they don’t feel alone.
