Hi my name is Trevor Newby, I was diagnosed with Motor Neurone Disease/Amyotrophic Lateral Sclerosis in June 2014.

One morning after coaching a surf lesson in Mullaloo, Western Australia I returned to my car and had difficulty turning the key in the car door, I initially thought it was just the cold weather we were having and thought nothing of it.

Over the following weeks simple things like hanging clothes on the washing line, drumming and surfing became difficult as my left arm became weaker and weaker. Thinking I may have had a pinched nerve I went to see my doctor and then preceded to have MRI's, blood and nerve conduction tests. Finally the neurologist at Sir Charles Gardner Hospital broke the news that I had this incurable disease.

At first it wasn't a big shock because I didn't know what it was, and then over the following few weeks the enormity of what I was going to face dawned upon me.

I hope to via the blog on this website bring you into my life with MND/ALS and to reach out to other sufferers. I will also be hosting events around my passions for surfing and music to highlight and support sufferers of this disease, so it won't be all doom and gloom there will be fun along the way.

Trevor Newby
Perth, Western Australia - August 2015