Sally’s Story

Read all about Sally’s story about living with Motor Neurone Disease

MND and Me!

Last September (2022) I started writing about the impact MND had, had on my life.

My energy had simply gone eighteen months earlier, just after the death of my Father. Nothing showed up in Blood tests and it was presumed to be Long COVID or simply exhaustion.

Life is strange, just when you feel you deserve a treat it can dish out a nasty surprise.

Perhaps I had spent this summer in a state of self deception, perhaps not, who’s to say but as I relaxed in the sun reading, resting to get over my ‘Long COVID’ there was a sense of anxiety deep within which wouldn’t go away.

I Just wasn’t getting better, the symptoms seemed to fit but perhaps they didn’t quite and the an alternative possibility was unthinkable.

I tried to get excited about a cruise we had planned for next Summer to mark a very special Birthday for my husband. I browsed online for sun dresses without conviction.

Two women, one standing in a volunteer shirt and the other in a bright pink outfit, smiling in a cozy home setting. - Home Instead

Finally the Physios at the Long Covid Recovery service got hold of me, looked at my poor mobility and heard my voice and suggested a Neurological examination, from then on I knew that the monster who had been sitting on the ground just behind me had finally jumped onto my shoulder and declared war!

Some weeks later a Neurologist confirmed my worst suspicions, breaking the dreaded news in such a positive way that there was almost an element of relief in facing up to the truth, so here we are MND and Me! bound together for the rest of this life.

In a past life I have been an Occupational Therapist so I partly understood the implications of this monster, I say partly because we are all different and MND it seems comes in different forms and as I now know being an energetic sort of person, handing out aids and advice is quite different from living with something every hour of every day and trying to come to terms with the ‘New You’….a very different and physically more fragile being.

I’m yet to fully understand the new me!

However it arrives though, it will change your life irreparably and that of any other family member living with you particularly your spouse.

Another factor in assimilating this ‘New Me’ has to be when you are diagnosed. I was later on so a lot of symptoms had established themselves and become a part of my ‘Usual’ way of feeling, the fundamental fact being that for months I had expected to get better!

In my opinion I gained a year or more of hope, however it has occurred to me recently that I could have used that time planning for the future rather than dreaming about digging the garden again.

However within this failing body is an active brain so a few good projects are ideal to keep it going.

Half term came.

A week of children, wonderful, Ethan, 10, Sara Rose, nearly 8, Iona, just 6 and Zachary….7 months and full of fun!

Outings to: Shuttleworth, the woods and Woburn Safari Park…which was by far the best and most exciting.

We ended the day driving around the the various animal enclosures with the long shadows of Autumn falling on us…sleepy, huge bears, tigers, lions, Antelope and the long soft necked Giraffes.

Monkeys kept climbing on our roof…

I had spent the day trying to keep up on my scooter, great fun, I suddenly felt ‘ properly alive’ again, able to really join in with the fun!

The last couple of days have been tiring ones, hard to get upstairs at night and a bit stuck on the sofa by day!

However, our family, being truly wonderful, have produced Samuel (my son living in the States at the time!), at just the right time, for a week to close down the pottery studio. ( I had previously taught pottery for eight years)

I am blessed as I should have done it myself had I realised what was happening to me!

A long break from my previous thoughts, a month ago I didn’t wake up in the morning.

Christopher( my long suffering husband) brought up my tea, no response, he called Our great friends David and Lesley and they suggested ringing 999 after a while an ambulance arrived, they looked at our staircase, said there was no way they could get me down it, so they called the Fire Brigade, who arrived from Shefford, eight strong men, they dismantled the stair rails, put me on a stretcher and lowered me vertically down the stairs.

I was of course, totally unaware of all the commotion I had caused!

I was taken in the ambulance with lights and sirens going, to Bedford Hospital where they eventually revived me. I was lucky to still be alive, my lungs had filled with Carbon Dioxide and the dreadful headaches I had been experiencing for ages were Carbon Dioxide poisoning!

No wonder I was out of breath and falling asleep on the red sofa all the time. To be honest I was running out of steam quite literally!

A week then followed in Bedford Hospital, one of the strangest weeks of my life! I sometimes wonder if I was dreaming or maybe it was my brain settling down again.

Followed by four civilised days in Papworth, and home with a Nippy which ventilates me while I sleep.

So here I am, still alive, thanks to Bedford Hospital and the staff.

A week in hospital weakened my legs so I now walk with a frame, my Mother’s!The headaches have gone, I have an interest in life again but my hands and back are weakening!

It isn’t easy but we’re coping!

We now sleep downstairs in the study and our home is full of flowers, cards and delicious food that arrives regularly from friends in the village.

Today Gareth the plumber arrived! The wet room is being made using the utility room and the downstairs loo! He has stripped out everything but the loo!

This, of course, leaves me with a predicament for a while! Have just been, thank goodness he left the soap dish behind so I have something to hold on to! I felt pretty vulnerable to be honest!

The new wet room will be ready just in time I think.

These were my reflections a year ago. After a summer of going downhill.

I had lost over two stones in weight and had numerous falls, including breaking my ankle.

Only two and a half years ago I marched up a hill on the Isle of White and thought how blessed I was to be so strong and healthy!

Now life is very changed.

The community health support is wonderful, I have a power wheelchair and transfer using a Zimmer frame.

I no longer have a voice and rely on my iPad for communication. The synthetic voice can sound very bossy and has taken time to get used to.

This is my most frustrating loss by far! My voice has been well used over the years! I sang and played the guitar.

It’s an agony when people just can’t understand you.

I tire very quickly and am often short of breath.

Meals are soft as swallowing is difficult.

Now my hands are going so typing is tiring.

Kelly and Tina are terrific at managing the decline and keeping morale high, we laugh and cry (me) together!

Friends and family have been truly amazing!

I am a Christian and have been surrounded by prayer and kindness.

From being a very active person, I have become a dependent individual totally relying on other people to keep going, particularly my poor, long suffering husband!

I always need purpose, so I write stories and illustrate them for my Grandchildren.

I am still involved in our farm as a partner so I am ‘busy’ in my own way.

We have another Grandchild due soon so there is plenty to think about.

I do worry about getting even weaker and more dependent as is the nature of MND.

If a cure could be found it would be amazing!

No one really knows why it happens, there are only theories.

At present there is no cure but they are getting closer!

Thank you so much for raising money to help with research. It’s so encouraging , there must be a solution somewhere it’s just finding it!

Bless you all and enjoy your walking!