Until there's a cure ... there's care

By Gary Covington

Gary at MND Walk

 

Some background which gives an insight into why I do what I do.

 

 In 1976 I began my teaching career at a large outer eastern Melbourne high school (1100+ students at times) teaching maths at all levels from Year 7 to Year 12. In 1984, as computers were being introduced into schools, I was appointed Maths and Computers co-ordinator. I could already see the enormous potential for computers within the school environment and in 1985 was successful in splitting the roles and just becoming computers co-ordinator, with responsibility for introducing them right across the curriculum.

Unfortunately, the principal at that time was nearing retirement and viewed these computer jobbies as just a flash in the pan, so would not allocate any decent funding for them. I was forced to do things like run walkathons in order to raise funds, and to do all my own computer maintenance, something I still love doing on my own pc. That still left us with only being able to afford cheap “second class” computers when most schools had the real deal (Apple 2 with lots of educational software). There were a small number of mainly primary schools in the same situation, so a group of teachers from these schools used to collaborate to do the best with what we had.

By the end of 1988 I was frustrated with continually banging my head against the proverbial brick wall, so having done a bit of programming at uni and having since self taught myself a couple of other microprocessor programming languages, I was successful with my application to join a (then) big American company in a programmer/analyst position. It was a tough decision and there were aspects of teaching I missed. For those who think teaching is a bludge with great holidays, in my almost 20 years in private industry, I never saw anybody work as hard as a dedicated teacher and for such measly pay. I never needed holidays as badly as I did when teaching.

I'd only been working in I.T. for just over four years and picked up skills in more languages, when after about a year of increasing “strange” occurrences, I was diagnosed with PLS (Primary Lateral Sclerosis), a form of MND. That was exactly 27 years ago as I write this (May 2020). PLS is a very rare form of MND which affects about 1 in every 250,000. It typically progresses much more slowly than ALS and although one can still end up very disabled it is typically described as a disease you die with, not of.

The company I worked for were absolutely fantastic!! At the time of my diagnosis we were living in Gembrook on 10 acres, which was unfortunately on a slope with steps down to and inside the house. They were proving increasingly difficult for me to safely manage and the 10 acres was too difficult for my full time working wife with two young daughters (9 and 7) to cope with, so in early 1995 we moved to Narre Warren North on a dead flat acre (couldn’t cope with a normal suburban block after having our nearest neighbour 300m away).

My work location was close to Monash Uni so in mid 1995, as my walking and speech were already being affected, the company very kindly organised a move to one of our other huge clients in Dandenong/ Doveton. By 5 years from diagnosis I was unable to take even a single unaided step without my walker/rollator and only my family could understand what was left of my speech, but using email and chat programs, I was still able to contribute in a big way for another 9 years. However, at that point, our company lost the contract for the worldwide company we were performing all the processing for, so I was forced to retire.

I'd already been involved with MND Vic since the mid/late 90s so at that point, offered my skills Gary receives 10 Year Award 2017hoping they could utilise them. Initially I was involved in maintenance of the www.mnd.asn.au website, including some major upgrades of the system running behind it. More recently I’ve been converting the hardcopy bi-monthly MND newsletter into online format so people anywhere in the world can read it. For example, see the previous March-April one at www.mnd.asn.au/mnd-news/635-mnd-news-march-april-2020 

Also doing checks for broken or outdated links for all the state MND organisations in Australia plus for http://www.alsmndalliance.org/ and https://www.mndaust.asn.au/ 

At our Christmas volunteer lunch at the end of 2017 I was awarded my 10-year volunteer badge and aim to keep on volunteering as long as I possibly can. Fortunately, although I still legally drive with Vic Roads’blessing, most of my work can be done from home on my own pc.

 Arrows point to Gary and his wife Jacqui at Volunteer Lunch in 2017

Arrows point to Gary and his wife Jacqui at the Christmas Volunteer Lunch 2017


Cycling For MND

The 3 cyclists, all then 60 or near, plus me.

For many years I have greatly appreciated the free use of equipment such as my wheelchair from MND Vic’s equipment library and, more recently, an expensive hoist so Jacqui doesn't hurt herself trying to lift me back up when I fall.

My wife, her sister and brother-in-law, then all 60 years old or very close to, cycled from Adelaide to Melbourne in 11 days. I didn't cycle of course but I drove my ute as the Support And Gear person (SAG wagon).

Cycling For MND raised $7,205 for MND Victoria during MND Week in 2014. Visit Cycling For MND www.mycause.com.au/page/68928/cycling-for-mnd

PS Most of it was hard work but good fun!  However, some was a bit scary - see https://vimeo.com/362968296

 


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