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12-March-2024 | By Naomi Nelson
We’ve all done it: walking along happily one moment, then tripping over nothing the next. Or we may see an older person shuffling and think that the inability to encourage the muscles into lifting one’s feet is an inevitable part of ageing.
But what if you’re an active person in your forties and this is happening regularly? Is this cause for concern? For Ted O’Hare, shuffling and tripping were becoming regular occurrences back in 2005. His gait caused people to ask if he’d been drinking, so, he started using a walking stick.
When there was no improvement in his condition, Ted saw a neurologist and was eventually diagnosed with hereditary spastic paraplegia (HSP), a progressive, degenerative neurological disease with no cure. The disease can be caused by one of 90 gene mutations and the progression of the disease depends on which gene is affected. Some people develop HSP in their childhood, others later in life. There is no cure for HSP but it is not a terminal condition. Treatment consists of stretching and use of the medication, baclofen, used to treat muscle spasticity in conditions such as multiple sclerosis and spinal cord injury.
Unfortunately for Ted, the specific gene could not be identified which means it is difficult to predict how the disease will affect him. From a walking stick, he progressed to occasional use of a wheelchair by 2010 and from 2013 he has been a permanent wheelchair user.
How has having HSP affected your ability to get out and about?
Ted presents as an optimistic person with a ‘can do’ attitude to life. The diagnosis of HSP has not stopped Ted and his wife from travelling far and wide, across Australia and the world. His book, The View from my Wheelchair, reveals some of the difficulties of travelling with a disability, but also offers suggestions on how to minimise them.
Ted is able to get out and about on his own with the assistance of an Abiloader, a mechanism that delivers his wheelchair to the driver’s seat and returns it to the back of the car later.
As he writes in his book, ‘There is one thing I am certain of: My wheelchair will not stop me from getting out and experiencing new things and seeing the wonders of this world.’
When he is not travelling or writing, Ted plays trombone in two bands playing modern and traditional big band jazz: The Dandenong Ranges Big Band, and Groovin’ Easy.
You can hear Ted play with the Dandenong Ranges Big Band at 1:00pm on 15 March at the Ringwood RSL. Check out their Facebook page for further details.
What do you miss most?
It’s the little things, like being able to put up curtain hooks, hang out the washing, or mow the lawn.
How do people respond to you in a wheelchair?
People are generally good. They are helpful and offer to assist. Often Ted will decline their offers and he hopes they are not offended but he does appreciate the offer and will accept if he needs help.
What he doesn’t like, however, are people who assume he needs help and just start pushing without asking. This feels like an invasion of his personal space.
What messages would you like readers to take away?
Ted is delivering a talk about his experiences, including the writing of his book, The View from my Wheelchair, at 11:00am on 16 March at the Rowville Library.
Book free tickets here: https://events.yourlibrary.com.au/event?id=54015
As Ted reminded me, a wheelchair is a piece of assistive technology, but so are my spectacles. We all have some sort of limitation in life, so focus on what you can do.
