June 2026 Special Days
Meet Anna...
Anna Barrow was just 38 when she started experiencing problems with her speech. After going to hospital for tests, Anna, who is married to Martyn and has three daughters, was diagnosed with MND. After her devastating diagnosis, Anna, was invited to the MND Association’s EnCouRage event which brings young researchers together to learn more about the fight against MND. Determined to help shape the future of MND research by teaching young researchers at the start of their careers about the realities of MND, Anna and Martyn have attended EnCouRage for the past two years and will be attending again in July 2026.
Anna shared her MND story with us in June 2026.
My special day
Living alongside MND doesn't provide many days of hope, but there are moments, moments with family & friends, trips away and sometimes in the people you meet along the way.
Attending EnCouRage and getting the chance to share our journey to the early researchers is special, hearing all about their research projects and understanding their 'why', it's so inspiring to see so many young researchers talk so passionately about their work, to one day find a cure, find effective treatment or provide solutions that help individuals living with MND manage their care or make life a little bit easier. And to me, this brings an enormous amount of joy and hope.
Life before MND
I met Martyn when we were about 16 or 17 years old and got married in 2006. We have three beautiful daughters and we're a very close knit family and we do lots together - we always have. Our lives have always been about family, making memories together and being there for each other. We live very close to my family and we're always seeing them, coming and going to each other's houses.
I worked in retail management for a while, then when the girls were born I spent some time thinking about what I wanted to do when I went back into work. I decided to move into health and social care and started working in care homes. Then, I started to work for Trafford Borough council and worked my way up to team manager for Adult Social Care. I loved my job and was there 10 years before I was diagnosed with MND.
For our 17-year wedding anniversary in 2023, I wanted to renew our vows. It's something I always wanted to do and after I was diagnosed with MND in April 2023, I wanted to make sure I could still walk down the aisle so it was important we renewed our vows sooner rather than later.
Early symptoms and diagnosis
In 2022, I started getting tingling and numbness in my left hand. At the time, I put it down to the Covid booster jab but I started to get concerned when the tingling and numbness was still there after two weeks. I went to the GP and they thought it was because the injection had been done too high up in my arm. They said it happens often with flu jabs and all kinds of things and I've worked with a lot of nurses and physios who said the same thing. I was reassured to give it six weeks or so before going back to the GP. So, I waited, and it didn't get any better. In fact, it was getting worse! It was a lot of back and forth with the doctor to try and work out what was going on.
I started to notice the tingling and numbness was going into my right hand and I was tripping quite a lot and I thought this can't be the same thing because why would it travel from one side to the other? The doctors said it might be serious, then they said it might not. and they told me they would refer me to neurology. My referral was marked as urgent and then they came back and said it's not urgent and I was then put onto a 70 week waiting list.
Then in April 2023 I was working at home and I just felt a bit unwell. I couldn't speak and I felt like I couldn't breathe and had a bit of a panic attack set in. We went to A&E and the nurse looked at my face and noticed it was a little bit droopy on one side. She also said my speech was slurred. I hadn't even noticed my face or my speech had changed because it had happened so slowly. The nurse pushed for tests and they ended up keeping me in for observation. I ended up being in hospital for two weeks. I saw multiple consultants and had multiple tests. I had the EMG test on Wednesday and then I was diagnosed with MND the next day.
The progression of MND
With MND things change gradually, then all of a sudden. At first it started with a tingly feeling and numbness in my hands and arms, then it developed into tripping more often. Now I'm no longer able to walk and I use a powered wheelchair to get around. I went from being able to take care of myself to relying on Martyn and the girls to help me.
Because I use my chair around the home, we had to make some adaptations so I’m still able to move around the home independently. I can even sneak up on Martyn when he’s doing the washing to make sure he’s separating it correctly and putting it on the right settings!
Not being able to use my legs and arms meant speaking was extremely important to me, so when I started to lose my voice I was worried. I decided to bank my voice with the MND Association which I mostly use when speaking with people outside of the family. At home, my family are tuned into my voice and if they aren’t able to understand me the first time, they make an effort to really concentrate and take the time to listen. I do worry sometimes if I start using her communication device full time, it’s like losing the last bit of myself, but the fact I have my voice banked makes a big difference.
Common misconceptions
Some people think that MND shouldn't affect me, only older individuals, especially males.
Sometimes, people assume that I'm drunk! I've had a stroke or I've been in an accident.
There's one misconception that I feel I so prevalent now is that MND is rare, is it? It's not when you are in the MND bubble, I speak to more people now from the MND community, my career has been replaced with raising awareness, there's not a day where MND isn't a topic, and all that comes with it.
Don't believe what you see, MND is painful, the medications and adaptions I need to keep me comfortable and help me sleep, the neck pain, the muscle aches, the twitches.
And finally, it's not just the person living alongside MND which is affected, it's the whole family, your friends, our life has changed in ways I would never have thought or wish upon any other family, from the day of diagnosis. Nobody's life will ever be the same, the future is dark, there will always be something missing, there will be a day that my MND journey ends, but the next chapter starts for those I leave behind.
The difference support makes
The support I have received since my diagnosis has been mostly positive, I'm in a position now that I feel I have what I need for my needs now and as I need to adapt to living alongside MND.
The early days are very challenging, which road will MND take? It's a different path for us all and we are all entitled to different services dependent on your postcode.
We had to fight locally for the changes I needed and fight against policy, we worked with our local council to understand the journey and the urgency for individuals living alongside MND, its cost us a lot of money to get the adaptations we needed, but had some amazing support for minor adaptations.
I'm lucky that I live in Salford, my community team are amazing. My dietitian, physio, wheelchair services and speech and language are all very proactive and supportive.
The MND Association have been a lifeline for our family, emotionally and financially, they have provided me and our family the help and support when we need it, also when we didn't know we needed it.
The local branch feel like an extension of our family and we are truly grateful for association continued support.
Advice to others
Time becomes the most important commodity, make the most of it, spend time with your loved ones, the ones who make you laugh and smile, the ones who make you cry, make every moment count and breathe them all in.
The initial shock, the fear and the worry stay with you throughout your journey, but I feel you learn to accept it, you put it to the back of your mind, it still hurts, but MND gives you another form of strength.
Link in with the MND Association as early as possible, meet others living with MND, in person or online, I know this may be difficult at first, I struggled, I didn't want to look into the future, but I have had the pleasure to meet some of the strongest individuals I have ever met. The advice is invaluable, the strength from the community can be that bit of reassurance and motivation when you are at your lowest or feeling lost, lonely.
You're not alone. You’re stronger than you know.
