In May 1993 aged 38 I was diagnosed with a very rare form of MND called PLS (Primary Lateral Sclerosis). Estimated to only be around 125 of us in Australia. After around 5 years my speech was incomprehensible and was unable to take even a single step without my rollator. Fortunately, 4 years earlier I’d changed careers from a senior high school maths and computer teacher to an analyst/programmer with a big American multinational outsourcing company, so was able to continue working for many years as they were great in accommodating my needs.
Helping others with MND plays a big part in my life now. Fundraising for MND has been important so I’ve participated in several Walk to D’Feet MND events, we participated in Daniher’s Drive in 2019 and in 2014 my wife, then 60, her sister and brother-in-law then close to 60 cycled all the way from Adelaide to Melbourne to raise funds for MND Victoria. I’ve been volunteering for MND Victoria for almost 20 years now using my computer skills for website updates and maintenance, online newsletter preparation and more. Before Facebook came into being I took over running a Yahoo email based group called Ozpals (Australian PALS) for a number of years when the lovely guy who started it in 1998 succumbed to his MND. Given the rarity of PLS it’s poorly understood by many neurologists, even some at specialist MND centres as I myself experienced, so in order to help others I’m one of the admins of a worldwide Facebook PLS group with almost 2,000 members and an Australian HSP-PLS group with 700+ members helping them, with others, to separate good advice from misleading advice.
