Motor Neurone Disease……….
I heard an interview on the radio in the car last week that was extremely powerful.
It was an interview with a 43 year old man who I knew………..not personally, but as I grew up watching “The Sullivans” on TV, I felt I knew this guy. His name is Richard Morgan and he played Terry Sullivan in the quintesential Aussie TV drama.
Richard and his wife were sharing a very personal story. The story of his diagnosis one year ago, with Motor Neurone Disease. Richard went from being a fit, health man, the father of two young children, to being confined to a wheelchair, dependant on the care of his wife and others. Richard lives daily with the probability that he will be dead within two years.
I know plenty about Motor Neuurone Disease as I’ve cared for plenty of people in the end stages of this awful, wasting disease. I know a number of people who work for the Motor Neurone Disease Association. I understand that it is an umbrella term for a range of degenerative, neurological conditions that can not be defined.
BUT each person’s story is unique. Each person diagnosed and the people who love them, have to live on knowing what awaits them. Every day they loose mobility, strength and function. They have to live on knowing that eventually they will die from asphixiation or choking.
Richard’s story is a powerful one. A story that highlights the lack of compassion often demonstrated openly in the health sector. A story that reinforces the importance of community when things go wrong. A story that is both inspirational and devastating. A story of personal strength and defeat.
I encourage you to listen to the program if you have a chance. I also encourage you to find out more about Motor Neurone Disease by listening to the program I did with Rod Harris, the CEO of the MND Association, late last year on Dead Serious.
I also encourage you to think about Richard and others who are living with Motor Neurone Disease.
September 9th, 2006 at 6:51 pm
My name is Robert from New Zealand. See how I am dealing with ALS/MND by visiting my web site.
June 21st, 2007 at 12:50 am
My farther passed away on Feb 19th 2006 from MND. Who I really miss I wish I had the power to bring him back but I cant. I wish to speak to other with MND and family members who have lost a loved one. So if you want to chat or even email please do as we have a lot in common and if I can support someone through this time it would mean so much for me and my farther.