June 2026 Special Days
Meet Louise...
Louise from Bedford has made the courageous decision to attend her own funeral to celebrate her life with family and friends, all whilst raising money for the MND Association. Diagnosed with MND in September 2025, Louise has chosen to take control of how she is remembered. Rather than a traditional funeral, the event – which Louise has dubbed her ‘FUN-eral’ – will be a joyful celebration featuring music, laughter and reminiscing with Louise present, making more treasured memories with loved ones.
We interviewed Louise in May 2026.
My special day
On the 13th of June 2026 I am planning a Fun-eral for my friends to attend that would attend my funeral. I wanted a party and I thought, ‘why not combine the two?’ I want to be a part of my life celebrations. I was inspired by a friend of a friend who had cancer and decided to hold her own FUN-eral. Funerals are sad and morbid, but I want the occasion to be full of love and laughter and making new memories to treasure. We’re having a raffle as well and any money that is raised from the evening will go to the MND Association.
Life before MND, early symptoms and diagnosis
My name is Louise. I’m 61 and I live in Bedford. I've known my husband, James, for nearly nine years and we enjoyed walking and holidays in Scotland. I worked full time, went to the gym six days a week and was very active. I used to sew and make handbags, purses, memory teddy bears and memory cushions.
In the summer of 2024 my right foot sometimes scuffed the floor, I thought nothing of it. At the end of 2024 I was working for an estate agent showing people around houses. On occasions I found it difficult to unlock doors. By February 2025 I found myself working in a cafe, I found this hard work and was exhausted by the end of just a five-hour day.
In June 2025 I had two falls, that prompted my first visit to my GP. He suggested a blood test and CT scan and to rest so I stopped work. I was about to get married and go away for two weeks for our honeymoon so the rest came at the right time.
By the middle of July I was back at the doctors because my voice was a bit strange and I was showing symptoms of a stroke.
I was sent for an MRI by the beginning of August I was back seeing a GP and was told I need to see a neurologist which can take up to 18 months to two years. I just burst into tears. Fortunately, we have Bupa through my husband’s work and I saw a neurologist on the 25 September 2025. I went on to have an EMG and at my second visit to see the neurologist, he told me I have limb onset MND and a life expectancy of two to three years.
That number does not define me, I don’t see MND as a death sentence. Life is for living and we are all going to die anyway.
Life with MND
Since being diagnosed there’s less and less that I can do. My right side is weak, I cannot walk or be on my feet for a long time and I find the simplest of tasks exhausting like moving in bed, getting out of bed, showering, getting dressed. I have a cleaner who visits once a week and a gardener who comes every six to eight weeks.
I’ve now got a nice big Motability car which I can’t drive but other people can and I like to go out quite a lot with my friends. I have reflexology on a Friday which the MND Association kindly pays for. I’m about to have a stairlift fitted as well because I’m losing confidence on the stairs and last week I got an electric wheelchair.
The equipment will make such a difference to my every day life. With MND, you can feel stuck in your own home, so now with this independence I’ll be able to move around my home safely.
We’ve funded the stairlift ourselves as we aren’t eligible for support from the council, but the MND Association did help us with a support fund of £1,000 towards the stairlift cost. It is so wrong that we are means-tested when we have both worked since we were 16 and have paid into the system all our lives, never asking for help.
MND, to me, stands for Memories Never Die.
Association support
The support from the MND Association has been amazing. They pay for my ironing to be done – which I can no longer do – they pay for my reflexology and they paid towards my stairlift. It’s been a massive help to me because I can no longer iron because my right-hand side is weak. I can’t lift my right hand or arm. Having someone do our ironing takes the responsibility off my husband as well because he’s already doing so much. It takes a lot of pressure off and allows us to be husband and wife, not just carer and person being supported.
The MND Association gave us a support fund towards a wet/dry toilet, we have also gratefully had the cost-of-living grant. All the financial support we have had has made such a difference.
I encourage other people to use the funding from the Association because people have very kindly raised money for us to be able to access these things and we should make the most of it. I think it’s important that we do use it.
People can be hesitant to ask for financial help when they haven’t had to ask for help before. When they have worked hard all their life and paid into the system, the switch to asking for support can be difficult.
Making every day matter
Every day matters means to me living life one day at a time. It sits very closely with how I view life and you have to take each day as it comes. It’s all about our mental health. It feels like my outside body is deteriorating, but my inside body is fine.
I still think the same, have the same sense of humour, enjoy the same things even though I’m now in a wheelchair and my speech is slurred. I look at what I can do, not what I can’t do.
My speech might disappear, but I can still communicate with my banked voice. Technology is such a huge thing now because I love writing in my journal, but because my right side is so weak and I can’t hold a pen, I’ve started writing my journal entries on my notes on my iPad.
Advice to others
If I was to speak to someone recently diagnosed with MND I would tell them to take control of their life, now. Decide how you want to be cared for, write down how you want to be washed, how you want to be spoken to. Know in my mind, that if you need care, you have a plan. Don’t think about all the bad things that can happen, think about what you need now but be aware of what you may need in the future. Take it one step at a time. Live for today and tomorrow will sort itself out.
