Glad to be still kicking
By Tony Treloar
Tony Treloar tackles his waka ama challenge along the Taupō waterfront to raise money for the Neurological Foundation of NZ. He will be doing the same thing again next month.
Being told over the phone by my neurologist I likely had ‘six months to two years to live,’ was fairly sobering.
Yet, here I am, a little over 15 years later – fortunate to be still alive and kicking.
The specialist in neurons was half right; Motor Neuron Disease (MND) - my version of it is commonly called ALS, short for Amyotrophic Lateral Sclerosis – holds me in an increasingly tighter grip.
My intake of oxygen is less than half of my peers, I feel absolutely knackered 24/7, I have to concentrate when swallowing, my speech is a drunken slur, I rely on a two-wheeled walker to get about, blah, blah.
That said, I’m grateful for every minute I have.
Non-desk work – I’m a licensed real agent – stopped back in 2013 after I was invited to appraise an Acacia Bay home, and while in the master bedroom got the MND-wobbles, falling onto the queen bed. Even worse, struggling to regain my feet, I needed both Mr and Mrs to haul me upright.
Then, when embarrassed and making my exit, I needed Mr below me and Mrs above me as I went down the outside stairs. Typical real estate agent, I’d worn my ‘fancy’ shoes, long-pointed ones, to suggest that despite my MND I still had style – which were too long for each step, given my shaky, wayward legs.
There have been similar embarrassing examples while doing fundraising for MNDNZ and the Neurological Foundation.
Upon completing a half-marathon in Orewa – 2011, I think, while I could still stagger-stumble in a fashion roughly resembling running – I asked an organiser where I should leave my race bib, and suddenly found myself inside an ambulance, tightly-strapped-down in a stretcher-bed.
My slurred speech had been misinterpreted as a heart attack. It then took half an hour and lots of shaky handwritten notes to win my freedom. But bless St John’s!
When given my diagnosis in late 2009 and then reading on the net afterwards at home that there was no cure, it made me laugh.
‘What a silly boy!’, I thought. Certainly though, a grand challenge – for me personally, to stay in control of myself and remain self-sufficient for as long as possible.
And while doing that, to smile. I think we all have our own cross to bear, each one of us deciding on its size, small or large. Smiling helps the receiver by similar margins, bugger-all to a bit. So that is the least I can give.
It’s also very hard to sit still – and just smile - when the Neurological Foundation say one in three Kiwis have a neurological disease – be it Alzheimer’s/dementia, Parkinsons, Multiple Sclerosis, migraine, epilepsy, MND, etc.
Last February, courtesy of my daughter, two fine friends and the seriously good people of Taupō’s Waka Ama Club, I was able to solo-waka ama along the lakefront. We raised more than $5,000 for the Neurological Foundation.
Then in November, accompanied by my son and partner, plus a lady who’d lost her Mum to MND, and me assisted by my ‘walker’, managed to pull in a smaller-fry $3,500 for Team MNDNZ in the Auckland Marathon – Jodi running the Half Marathon, and me completing the 5km ‘walk’ one minute before official cut-off time (position amongst the competitors otherwise known as ‘last’) of two hours.
In the greater picture, between 2015 and 2019 I was lucky enough to be the organiser for the first MND ‘Walks’ in Auckland, Tauranga, New Plymouth, Napier and Taupō, which collectively raised in the hundreds of thousands for MNDNZ.
In those days the money-raised was split 50/50 between research and care. As the years have rolled by and seeing communities all over the world still continuously cursed by no-cure neurological diseases, I admit I think the more research the better. 629