A few weeks before his youngest son’s Wedding Day, Bern, my husband, had a fall and smacked his nose. He was an active, confident man and this was just one in a series of factors that led us to believe something was wrong. If you lived in the Burncross area of Sheffield, you may have seen him out with our two Border Collies heading down to put a bet on or picking up the morning paper.

He had a few tests and in the early summer of 2007 we were told that he had Motor Neurone Disease. Bern would die anywhere between now and 4 years time. He would suffer a degradation of his bodily functions as the brain became unable to make any muscles work. He would die through a process of asphyxiation as his lungs became unable to draw in air.

He would be mentally alert and aware of what was happening to him all the way through that process.

“Is there a cure?” There are no known cures.

“Is there medication to reduce the impact?” There are no known medications, beyond managing the symptoms and side-effects.

“Is there a way to slow the end effect?” There are no known medication, beyond managing the symptoms and side-effects.

“Well, can you be more sure on the timeframe?” No. We don’t know enough about the progress of the disease to be sure on its path. We just use our experience of patients in the past to predict the future, but every individual is different and we can make no promises.

Having just been told this, and Bern having accepted the inevitable, our thoughts turned to our Children.

“Is there a way in which you can prevent this?” Not that we know about.

“Well, are there environmental factors; food that you shouldn’t eat, or supplements you can take?” Not that we know about. It can happen to anyone, anywhere, any time.

"Just tell us what's caused it!" We don't know. Nobody knows.

Bern died in the autumn of 2009, and it was just as we had been told it would be.

It turns out that Motor Neurone Disease is not the kind of thing that you recover from. There are no heroic fights against all the odds. It follows a relentless path that has one, and only one, end. Getting there is a slow grind of small victories, the aim of which is to establish a quality of life that is passably normal. 

When Bern became unable to walk, we bought a scooter.

When Bern couldn’t ‘drive’ that, neighbours were good enough to come to us. One would be there when I went to work at the weekend. One would help run his bets for him. Many would wave and pop in to see him.

When Bern had a fall too many, trying to get upstairs to bed, we had a hospital bed installed in the living room.

When Bern couldn’t get out of bed, we had a hoist to raise and lower him like an animal carcass.

We had carers that came every morning and every night to clean him, dress him and get him to and from bed. It takes two strong adults, or one very determined wife, to manage a body that cannot move itself.

We had night sitters so that I could get some sleep.

We had a machine that improved the content of oxygen in his airflow.

We had a machine that coughed for him to try to prevent the inevitable chest infections.

We had a catheter, a commode and a bucket. We had medication to stop him peeing as much. We had medication to stop the side-effects of the medication.

We had a machine that read out what he typed when he became unable to speak.

We had three adults sons that spelled out swear words on the machine because “...that’s what Dad really wanted to say.”

We had arguments about the TV being on too loud, or the window open, or about using the cough machine or about the hoist.

I was frustrated and tired and dreading the moment he would be taken from me. He was an active man who had nothing but the thoughts in his brain with which to occupy himself.

The amount of care that we received was astounding. A combination of the health care professionals and charity-funded workers meant that the slow grind was, in the main, bearable. The cough machine is tens of thousands of pounds. The air machine likewise. We received hundreds of man hours of care and attention.

That which was received from the NHS; we all fund from our taxes. That which came from the charities; well that comes entirely from donations.

I am determined to give something back in the way in which I can; hence why I have signed up to the Morocco Run. It’s 100km over 4 days, which is really 25km in 2 – 3 hours. 25km is about 15½ miles. Bern would’ve said: “You go for it lass!”

My boys weren’t surprised, it’s the kind of thing every woman in her fifties does as far as they know. They may be slightly less charitable about my mental health, but I know that every pound raised will go to help another family that is put into the same awful situation as we were.

Please donate to this cause and help me help them.

Thank you.

Ann.