What no one tells you about being a palliative care patient with motor neuron disease (MND) is that, as it unfairly degenerates your mobility, and ability to speak, swallow and breathe, it can also strip away those small daily joys that you’ve held onto for a lifetime.
For the 65-year-old Gold Coast local, Tony Lambert, MND took away his routine pleasure of enjoying time with his family along Main Beach's shore.
Around three years ago, Lambert lost the ability to use his arms and legs to MND. He is now wheelchair-bound and currently under the care of the Gold Coast Health specialist Community Palliative Care team, which supports him to live at home.
“For three years, Lambert and his family have visited this very beach here every day to walk the dogs,” explains Gold Coast Health Community Palliative Care team leader, Julie-Ann Hendry. “But because Tony is wheelchair-bound, and it can’t go on sand or water, he can’t go on the sand or in the water. So he just sits on the boardwalk and watches his family enjoy that time on the beach without him.”
"Then everything they know is taken away from them: even the ability to socialise with people on the beach.”
Unfortunately, says Hendry, many of her clients battling terminal illnesses are experiencing the same sense of isolation as Lambert.
“The beach is part of our culture here on the Gold Coast. One day, our clients are well and are enjoying going to the beach every morning. Or they are surfers or perhaps they go to the beach for a coffee and to socialise. And then they are hit with the news that they have cancer, MND, or another terminal illness. Then everything they know is taken away from them: even the ability to socialise with people on the beach.”
Around five weeks ago, Gold Coast Health ran an innovation competition to encourage staff to put forward ideas to boost their patients’ quality of life. Hendry’s team told the panel Lambert’s story and pitched for the state government to buy the palliative care service a few new all-terrain beach wheelchairs, with large buoyant and lightweight wheels that can go over sand and be submerged into the water.
“Just being down here, to smell the beach, feel the sand, is great. It means we can be a family again, being together [at the beach] instead of all spread out.”
The judges unexpectedly announced a Special Ministerial Award of up to $50,000 to guarantee the purchase of the four chairs. And a few weeks later, the chairs were delivered to the Gold Coast. The chairs are now available for all palliative care patients to use, pending availability.
“The beach wheelchair means that clients like Lambert can now enjoy some precious happy times with their family on the beach.”
With the arrival of the chairs, Lambert got to enjoy the seawater for the first time in years. Transferred from his traditional wheelchair to the new beachchair via a hoist, Lambert eventually made his way over sand and into the water and became the first palliative care patient to give the chair a run. Two care staff and his wife helped him manage the chair against the waves.
“This has meant so much to me –I’ve had my swimmers ready for weeks,” says Lambert. “Just being down here, to smell the beach, feel the sand, is great. It means we can be a family again, being together [at the beach] instead of all spread out.”
The concept of the beach wheelchair is not new along the Gold Coast. The local council own two but, according to Julie, they are a decade old. Even still, there’s no way that a total of six beach wheelchairs (new and dated) can help all the people living in a wheelchair on the Gold Coast. “For us in palliative care, we can see up to 1,000 clients a year.”
That’s why Hendry wants the notion of the beach wheelchair to become so popular that they multiply.
“This wheelchair is [symbolic] of the reason why we get into this kind of job – to help people,” says Hendry. “So our aim is to gain public momentum and support for more wheelchairs because in our minds, every surf club on the Gold Coast should have access to these chairs.
“Actually, looking at the bigger picture, every beach club in Australia should have them too! If we can replicated this across hundreds of thousands of surf clubs, it would just really help people going through really tough times.” In other words, Hendry says, watch this space!