The mind is still active, but the body is weak. Muscles which were once strong are wasting away – and the condition will only get worse.
Sue Collins was diagnosed with motor neurone disease in June 2012 and admits she did not know a great deal about it.
Now, her family – son Patrick Collins and his partner Clare Perry, who run Old Joe’s Golfing Range in Great Cornard –are trying to make sure more people are aware of the disease, for which there is no cure.
They are preparing to hold a family fun day at the driving range in Joes Road in aid of the Motor Neurone Disease Association (MNDA).
“It is not a particularly well-known disease and we want to make people more aware of it,” said Mrs Perry, 33, who took over the business with Patrick in December.
“Sue is very limited to what she can do now and has two carers. The disease is really debilitating because you lose all your muscle.
“Lots of people are not sure what MND is and don’t understand how bad it is.”
The fun day on June 7 will include bouncy castles, face painting, a tombola and golf events. It is hoped more than £2,000 will be raised.
Mrs Collins, 57, said she was fully behind the event.
“I think it is amazing what they are doing. I’m very touched because they have put so much effort into it,” she said.
“When people find out you have motor neurone disease, they are often shocked about what it involves.”
The disease attacks the nerves in the brain and spinal chord and has an impact on how sufferers walk, talk, eat, drink and breathe.
Mrs Collins said she first noticed something was wrong when she lost the movement in her foot.
“There was nothing I could do to stop it,” she said.
“You have good days and bad, but my family supports me and life is for living. You have to make the best of it.”