Dundee Man Shares his Experience of MND

Dennis, who now lives in Edinburgh with his wife Mary (83), said, “At the age of 83 when someone tells you have a progressive degenerative disease which could make you increasingly immobile over the next few months or years, and that you will probably die sooner than later of breathing problems, your reaction is to ask what has changed.

“At 83 many of my friends and associates have died off or are incapacitated, so weakness and death are already daily facts of life. However if you are younger I can appreciate a diagnosis of Motor Neurone Disease can be much more dramatic.

“My first symptoms came nearly a year ago in the Spring of 2017. I began to find my speech was becoming slurred. It sounded as though I had been drinking too much. Perhaps people thought that I had a drink problem!

“Then my mouth began frequently filling with more saliva than I could cope with. I was on occasion dribbling from my mouth.

“But worse was to come as I began to struggle to speak clearly. This was quite a blow as I had spent much of my active life speaking in public and chairing meetings.”

Dennis was conscripted to do National Service at the age of 18 in the Royal Army Medical Corps and spent two years in an army hospital. He then went on to become a journalist, and eventually moved into public relations and publicity.

“I have been TV Editor on Radio Times, I ran the BBC’s publicity services in the West of England, and produced and directed TV programmes which have taken me into remote parts of the world. In my time I have worked with top names in the world of broadcasting such as Sir David Attenborough.

“Coming back to Scotland I have run the BBC in Aberdeen and made programmes about Scotland’s marvellous countryside and islands with Jimmie Macgregor as my presenter.

“In retirement I got very involved with the environment in Scotland, chairing a range of charities, including the Scottish Wildlife Trust, and other organisations both nationally and locally. I even ended up advising Scottish Government ministers on biodiversity.

“Perhaps an ill-omen happened to me in October 2016. I was chairing a reception at the Scottish Parliament and introducing the Cabinet Secretary for Environment when I suddenly lost my voice completely. It had never happened to me before.

“In May of 2017 I went to my doctor. He referred me to an ENT specialist who examined my throat and detected a slight tremor of the tongue and jaw muscles. He wondered if I might be showing signs of Parkinson’s disease and referred me to a neurologist.

“I then went for more tests and when the results came through in late November my Consultant confirmed that I appeared to be suffering from MND.

“For me it was not a great shattering blow. I had had plenty of time to research the disease. So I knew exactly what I was in for.”

Dennis joked, “Interestingly my brain scan (MRI) showed that my brain was “unremarkable”! And I always thought I had a good brain – so now I know.”

Since his diagnosis Dennis’s symptoms have progressed, “My voice is now very degraded and I am beginning to use speech assistive technology. The problem for me is mainly with thick saliva particularly after meals. It is quite a struggle to clear my throat. The best medicine, I have found is a good malt whisky!

“One of the other problems with MND is that you can lose the ability to use your fingers. So trying to control a computer can become a nightmare. I am lucky that currently I still have the use of my fingers but am starting to practise using eye-gaze technology.”

Dennis went on to praise the work of the NHS, his MND Clinical Specialist and the charity MND Scotland for their continued support.

He said, “Early on it was arranged for me to be seen by a specialist clinical nurse from NHS Lothian. This is where Gill came into my life. And suddenly the future looked much more ordered and calm.

“Furthermore, she came to see me at home in my flat. That was a surprise and great privilege. Gill really knows about MND and the challenges it poses for patients right down to the smallest detail. The level of care Gill and all these other nurses bring to their role is tremendous.

“The number of carers in my life grows all the time. Top of the list is my wife Mary; she does an amazing job. Without her I would be sunk and in despair.”

“There is also one source of excellent help I get and that is from the very willing staff of MND Scotland. A really great charity. Everyone with MND in Scotland should get in touch with them. Just look at the MND website to see the full range of what they can provide.

“I personally have had top rate advice and help in filling in forms from their Welfare and Benefits Officer, and I know I can get help with technical equipment if I can’t get it anywhere else.

“One particular service MND Scotland provides for free is a weekly therapeutic massage. I am enjoying this greatly. I find my therapist’s weekly visits really relaxing and helpful in keeping me being able to move.

“And a new carer has come into my life. My local hospice in Edinburgh, St Columba’s, is helping me with physiotherapy through its new out-patients service.”

When thinking about the future Dennis reflects:

“I have researched MND thoroughly and I can see the challenges ahead. I have seen many videos of people in the later stages of the disease who can do little for themselves. Those of us who have the disease all degenerate at different rates, but degenerate we will.

“I regard myself as lucky as I still have full use of my hands and fingers. Walking has become a bit stilted and I certainly have a fear of falling.

“However when I was on a bus a month or so ago with my stick I was fascinated how many people offered me their seat! There is humanity out there.

“The MND Consultant seems to think I am on a slow track. There are plenty of examples of people who live for years with MND, such as Professor Hawking. And locally in Scotland I keep hearing of people who have accepted the challenge which MND brings and are fighting the battle.

“Although this is a disease with no known cure, and its progress unpredictable, there can be much hope of a future and a purpose in life. It is in fact just another of the many challenges which life can throw at you.

“But what will be, will be. As my MND Consultant noted on one of his reports “Mr Dick has led a very full life”. Me a full life? No, I just followed my nose. And as they say in Aberdeen I am “no deid yet” – despite Motor Neurone Disease.”

Craig Stockton, CEO of MND Scotland, said “I’d like to thank Dennis for sharing his story. The more we raise awareness of MND, the better people will understand the impact it has on people and the need to find a cure. I am glad that the staff at MND Scotland have been able to help Dennis and his family during this time.”