Motor Neurone Disease and Zenith EPoS

A personal message from Phil Stackhouse, founder and Director of Zenith EPoS.

In September 2010, after months of tests and small operations, my Dad was diagnosed with MND.

Neither I nor my family had ever heard of this disease until then, so I wouldn’t be surprised if you hadn’t either. Some of you may be aware of it, or know sufferers yourselves. Having now seen first hand what this disease did to my father, I am determined to help in the fight to find a cure.

To this end, I have decided that MNDA will be Zenith’s adopted charity. Our aim is to raise awareness and generate funds to help research into this debilitating disease.


Indiscriminate

Motor Neurone disease can attack anyone at any time, male or female, young or old. There is no rhyme or reason either. There is no specific connection to genes or lifestyle. You could lead a perfectly healthy life, free of drugs, alcohol or cigarettes and still suffer from MND.

It is a progressive disease that weakens and wastes your muscles, resulting in loss of mobility, difficulties with speech, swallowing and ultimately breathing. There is no known cure and very little alleviating treatment available. At any time in the UK, around 2000 people have MND and die within 14 months of diagnosis: on average, five people in the UK die from this disease every day.

In Dads case, it started in his throat. He was complaining that he couldn’t swallow properly and that he constantly had a frog in his throat, so we booked an appointment with the doctor. From this, a simple operation was arranged to remove webbing from his throat.

The operation did improve the condition slightly but Dad still didn’t feel right, so a whole load of consultations took place over the next eight months. During this time Dad steadily got worse and it was now affecting his speech. He was constantly trying to clear his throat and struggling to eat properly. He began to lose weight quite rapidly and was eventually diagnosed in September of last year.


Living with MND

He was given medication to slow down the process and he was also given drinks to replace the protein and nutrients he was missing through not being able to eat. Another condition of the disease is that you need a lot more sleep than usual and that you become very tearful for no reason. Despite all this Dad kept his spirit up and carried on the best he could.

The disease does not affect the brain and Dads’ humour was as sharp as ever. He was fun to be around, and the next few months went by without much change. Christmas was approaching and Dad was still able to walk and use his hands and he was even still able to drive.

His weight, however, was still decreasing, so in January 2011 he decided to have a rig fitted in his gut: this is a feeding tube that would help Dad take on food and stop the loss of weight. In Dads’ words, he had to have this fitted or else it would be the end.

Unfortunately, when they tried to fit the rig, his bowel got in the way. They rescheduled for the following week, but during this time the disease really took control. Dad walked into the hospital for the operation, but, just a week later, could hardly walk out. He also had difficulty breathing and had to be put on an oxygen machine - his days of driving were now over.

It was downhill from then on, and it all seemed to happen so fast. Dad was hospitalized in March and on April 14th decided that he no longer wanted to keep the oxygen mask on that was keeping him alive - he knew he was never going to recover.


Our last goodbyes

In a way it was a relief as we didn’t want to see him suffer any longer. He passed away after playing cards with his family. We all got to tell him how much we loved him and say our final goodbyes.

I would like to thank the NHS Frenchay and Southmead hospitals, MNDA and St. Peters Hospice, for all the help and advice given to my family during this horrible experience. I don’t know what we would have done without you.

So this is my story. It is the reason why we are trying to create awareness and help in fundraising to find a cure for MND.

For our fund raising events please visit our blog. If you wish to make a donation simply click on the MNDA logo below. Thank you.



To find out more about MND go to: www.mndassociation.org