Ken’s Story

Motor Neurone Disease

The first indication I had that there might be a problem was when I tried to carry two mugs of coffee from our house to the bottom of our long back garden to give it to workmen on our pond.  When I got half way I had to put the mugs down on the grass as I could not carry them any further.  This started a series of consultations. The first consultant suggested I had a scan to see if I had a trapped nerve, but I did not.

The second consultant suggested I had a brain scan, the good news was that they at least found one and the other good news was that there nothing untoward on the scan.

The final and definitive consultation was at Addenbrookes was for Nerve Conduction Tests. In this case they put a small electrical signal in the top of your arm and expected to see your fingers waggle. My fingers did waggle but apparently not enough.  The doctor said the nerve is not carrying the signal properly from the brain to the muscle, it was like there was a big resister, in series with the nerve, attenuating the signal. This is the definition of MND.

At the time it was just my arms, shoulders, elbows, and fingers and my left arm was much more badly affected that my right arm, although that has since caught up and I now have one length flesh and bone  hanging from each shoulder.

As my MND consultant said to me “Ken you are lucky, “ “Lucky? “ I said to him. His response was you have a slowly developing version, so that below the waist you have full muscle action and strength even if above the waist you look like a man trapped in a barrel .  I replied that is a good description and I don’t  mind provided it is a Whiskey barrel.

Thanks to my lovely wife, Maureen who looks after me 24/7. I am a member of one of the City Livery Companies, the Worshipful Company of Scientific Makers and we still attend dinners and banquets in London, when my wife gets me suited and booted in Black Tie Dress.  As a result we are able to live almost a normal life with Maureen.

Ken