Matt's story: I'm doing fine
Last updated: 30 June 2021
Motor neuron disease (MND), also known as amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease, can paralyse the body even though the mind stays sharp. We are privileged to speak with MND patients every day and they never cease to amaze us; much like this Australian who takes it all in stride. Here is Matt's story.
My life was good. I had a good job and two beautiful daughters, and everything was fine. My symptoms started with some slurring mainly after I had alcohol, but I hadn't had much alcohol so I knew something unusual was going on. After two years it seemed likely I had a form of MND, although it actually took three years to get a confirmed diagnosis.
Every three months I have a checkup with my neurologist and one of the local MND clinics. The condition I have doesn’t have many treatments available, but finding out what emerging treatments are available is probably the most important concern.
Help is available
I found out about everyone.org from a specialist in New York City that I saw in 2017 and keep in contact with. I think everyone.org's website is pretty helpful and straightforward. Having direct contact with people who respond very quickly and can answer questions is very unusual and an exceptional service. I was happy that I could get some medicines that normally would not be available to me.
Now my life is not that much different to before. I’m lucky, as after four years since my first symptoms, it’s only my voice that has been impacted so I can still do everything else. Obviously not being able to speak clearly is a problem, but otherwise I’m doing fine.
-Matt, July 2019