January 2026 Living with MND
Meet Jaki...
Jaki, a former university professional and theatre enthusiast, was diagnosed with MND in 2022 after she noticed her handwriting deteriorating. As newlyweds, Jaki and her husband made the difficult decision to move her to a bedroom downstairs. She reflects on how she was initially hesitant to accept help from strangers, but now has a great relationship with her carers. As her MND has progressed, Jaki now uses eye-tracking technology to write poetry, which is used in medical education and acts as a creative and emotional release for Jaki.
Jaki shared her story with us in September 2025. She used her communication device to type out the following...
Life before MND
"I had met my soul mate, and we loved travelling on holidays and mini breaks."
Before MND I was active and sociable. I loved my job at the University of Brighton. My passion was performing on stage in musical theatre and going to the theatre with my friends. I had met my soul mate, and we loved travelling on holidays and mini breaks and going to the football. I loved mooching around the shops with my mum, fashion, music, make up and styling my hair. I enjoyed going for walks and making a fuss of my cats and going to theme parks with my 2 sons. I even loved hanging washing on the line! MND has taken all of this.
Early symptoms and diagnosis
"I got married in December 2021 and I was not able to sign my name properly."
My symptoms began in October 2021 when I noticed my handwriting was getting messy. I saw my GP who said it was carpal tunnel. I got married in December 2021 and I was not able to sign my name properly, and I knew it was not down to Prosecco! I went back to the GP who said they would arrange for a steroid injection. At that appointment the doctor took one look at my hand and said it was not carpal tunnel. I asked what it was, and he told me it could be a trapped nerve or MND. I will be honest, I didn't really know much about the disease other than Stephen Hawkins. I remember going outside and sobbing down the phone to my husband and he thought the injection had really hurt as I could not get the words out. He picked me up and we drove home in complete shock.
Months of tests followed but nothing was straightforward. One of the blood tests came back equivocal for an antibody that causes Paraneoplastic Syndrome, which mimics the symptoms of MND. However you only have these antibodies if you have cancer - it's crazy to think I was hoping for cancer! The blood tests were redone and lots of scans and tests were done. I was then officially diagnosed with motor neurone disease.
The impact of MND
"For me the most upsetting thing was moving to a tiny bedroom downstairs away from my husband."
Being diagnosed with MND had a massive impact on not only me but for everyone involved in my life. My husband became my carer and this obviously had a huge impact on finances bearing in mind I had to give up work too. We both felt like we were living in a parallel universe, and it was not happening to us. I still think that it cannot be happening to us, but sadly it is. We have had to adapt in so many ways, not only with changes to the home, but accepting help. For me the most upsetting thing was moving to a tiny bedroom downstairs away from my husband, we had only been married less than a year, it is not fair. I also found it difficult to accept strangers in to do personal care, but you soon get used to it and I love my carers now.
Writing poetry
"I was astounded by the feedback from everyone."
I have always sang and performed on the stage, so I guess I have always had an arty side. One evening I was thinking about how brutal the disease is, and I was inspired to write a poem. It took about an hour using my eyes to type, but when I started the words just flowed out. I shared Brutal on Facebook and I was astounded by the feedback from everyone thanking me for being brutally honest and helping them to understand the disease. I knew I could do more and that is where my poems began.
I am thrilled that my poems are being used to educate people from the perspective of a patient, rather than just medical books. They are being used by Kings college hospital, and I would love for them to be used nationwide. I recently had an appointment with my respiratory doctor, who trains doctors and nurses about MND and she asked if she could use the poems in training sessions which is amazing. She works from St Thomas hospital. I have been getting actor friends to record the poems, and these can be seen on my website, my favourite is Trapped and definitely worth a listen.
In addition to having my poems used to educate people, I would love to advocate for clearer descriptions regarding accessibility in hotel rooms. It is one thing to be disabled but it is a whole different thing to be disabled with MND. We should be given the opportunity to fully understand how accessible a room is before booking so we can make sure it’s adequate for our needs because when you have MND, your needs are very specific.
Association support
"The volunteers were very supportive and just lovely."
When I was first diagnosed I went to my local support group meeting. The volunteers were very supportive and just lovely. I did feel that most people were a lot older than me or further progressing with the disease. This scared me and I decided not to go back. But I have been to events organised by them which is enough for me. The MND Association grants have really helped us, and we are grateful for that.
Advice to others
"Try to find something to smile about every day."
The main bit of advice I would give is do everything that you can whilst you can. Go on holiday and enjoy your food and live. Remember nobody is promised tomorrow. We also feel it’s important to have a sense of humour with MND and my husband jokes he should be able to take me back under warranty.
I would also recommend that if you decided you want a PEG, have it fitted before you need it or are relatively well. Also don't compare yourself with others as everyone's journey with MND is different. Try to find something to smile about every day.
MND has taught me several things which are:
- You discover who your true friends are.
- Determination. Courage.
- That superficial things don't matter. I would give anything to be better.
- Not to worry about small things and not to stress about people seeing me without makeup on!
A selection of Jaki's poetry
BRUTAL
How is it possible, how can it be
That I have been diagnosed, with MND.
Some say I'm a warrior, brave and strong,
But sometimes it's hard to carry on.
At first you think it's not too bad,
I can live without the use of my hand I once had.
But the brutal dictator thinks that's not enough,
It attacks the other hand and that is so tough
As you struggle to keep upon your two feet
After a couple of falls, you're feeling beat.
And so the tyrant rampages on
And before you know it, your voice is gone.
If that's not enough, your face will change
And suddenly your smile, looks really strange!
Sometimes you laugh, sometimes you cry
You just can't stop, even though you try.
You may think that's it, that must be it all
How can this disease, be even more cruel!
Excessive saliva and choking on food,
With depression and fear affecting your mood
Next step, your muscles are fading away
You feel pain as your Neurones die day by day
Your body is twitching all over the place.
Saliva is drooling all down your face.
As the disease rampages on, you struggle to breathe
Your part of a club, that you just cannot leave
Food and drink is fed through a tube
Another thing gone, affecting your mood
Your mental health is even worse
You feel like your living under a curse
You look at others with a jealous glare
And wonder how life is so unfair
Your loved ones are affected too
And miss the person they once knew
You can see your dreams go up in smoke
But where there is life there is always hope
And so you tick off another day
Your life was just not planned this way
So make the most of life and don't be glum
Tomorrow is not promised for anyone.
FRIENDS
I thought my poem ideas, had come to an end,
Then I thought of a word, that word is friend.
Friends should be supportive, loving and kind,
Those type of friends, can be hard to find.
When you're terminally ill, you just don't know,
What friends will stay, and what friends will go!
I really should not, have to think that way,
I'm feeling very shocked, at who has turned away.
I just don't understand, how or why?
It really broke my heart. and really made me cry.
I'm not talking about new friends, sadly friends of old,
I guess I am hard work now, and they don't want to get involved.
On the flip side of the coin. I have amazing friends too,
Always there for me, despite having things to do.
One friend walked for miles, raising funds for MND,
Always making me smile, every time she visits me.
Another two friends, dealing with their own health fears,
Never failed to show up, to wipe away my tears.
Taking me out alone, even though its hard for them,
Sadly one's an angel now. I hope, I see her again.
I'm lucky to have friends, who want to take me out,
Theatre and the zoo, it's so good to get about.
Some arranging raffles, and baking cakes to sell,
Raising my spirits, when I'm terminally unwell.
Other friends bring gossip, and I could chat all day,
Discussing shows and all sorts, but time always ticks away.
Ladies that lunch, will sadly lunch no more,
But who needs food, it's the girls that I adore.
I've saved the best till last, my lovely husband Steve,
My best friend and my soul mate, I'm in awe what he achieves.
Keeping me alive, each and every day,
I am forever grateful, and love him more than words can say.
TRAPPED
Sometimes I feel like I'm trapped in a cage,
Sometimes I'm happy, other times I rage.
My eyes are a window, searching everywhere,
Searching for a cure, that simply isn't there!
I tell my legs to move, but they won't play ball,
They just don't listen, or agree to move at all!
My arms are just as stubborn, no matter how much I try,
I am pleading that they listen, and I start to cry.
Some mornings when I wake, I forget about MND,
When I dream at night, I see a healthy me.
My body may be trapped, but the dreams inside my head,
Make me feel alive, I want to live there instead!
Like a jack in a box, who's lost its spring,
Trapped inside a box, what will the future bring!
I'm trapped in a voice, that's stuck in my head.
The words won't come out, they are forever unsaid!
When I'm feeling low, my brain goes into overdrive,
What if there's a fire, and I am trapped inside!
Sometimes I am a prisoner, my prison is my home,
I wish that it was easier, to go outside and roam!
I know that one day, I'll get my wings and fly,
But I'm simply just not ready, not ready to die!
So despite feeling trapped, there are good things still out there,
Seeing family and friends, and those who really care.
I can still smell and see, things that I love,
Like freshly cut grass, and bird song up above.
Panda videos on YouTube, the sound of falling rain,
It comes down to the little things, that really keep me sane!
