In life there are many things one takes for granted. As children this sense of dependence is ingrained in our reptilian brains, obliging us to rely on our parents to provide us with everything we need to learn and grow as human beings. As we age this dependence usually diminishes, but some things remain, particularly an expectation that things will endure; that we will always have enough to eat or drink, that our family and friends will always be there for us, or that as an individual we will always be able to make our own decisions.
It’s hard for one to fathom losing these aspects of our life, but that is precisely what happens to people around the world every day. Whether it’s from an accident or injury, a neurological condition or hereditary disease, until we lose these parts of our lives we never realise how much it can impact us daily. When our independence is affected we look at things differently and that is precisely the perspective Gazza and his family have.
Diagnosed with chronic seizures from a young age, Gazza was once able to walk and eat and talk. As he grew up his disease progressed making it difficult for him to safely stand and move and swallow without choking or aspirating. At first, he scooted around on the ground or used a mobility aid, until his disease progressed to the point that he was required to utilise a hoist and wheelchair. As far as Gazza and his family are concerned an important aspect of Gazza’s life was taken away.
As a physiotherapist, working with Gazza and his family, passive range of movement exercises and stretching, chest physiotherapy and secretion clearance was helpful but not enough. That was when we decided to trial tilt-tabling with Gazza – a piece of equipment similar to a therapy plinth that allows the user to be strapped in at the chest, pelvis and knees to tilt them physically upright. The benefits of using a tilt-table include regulating blood flow, providing a passive stretch of the legs, improving lung health and breathing and strengthening postural muscles. It was for these reasons the intervention was chosen, but there was more to it than the physiological gains.
For years now, Gazza had been sitting in a wheelchair with no perspective of what it was like to stand. The ability to stand independently, to change views simply by extending your legs and weight bearing on your feet, was lost to Gazza … until 6 weeks ago.
In the beginning, Gazza was hesitant and a little worried when we hoisted him onto the plinth and strapped him in. His feet and legs were a touchy subject and he was vocal about that from the start. But as the weeks progressed Gazza slowly grew accustomed to the tilt-table, the incline increasing with each visit – 15, 20, 35 degrees. He eventually relaxed and allowed himself to enjoy the moment. It was at this time we realised this could be taken further. Standing upright at 45 degrees, Gazza was more alert and receptive to communication. Involving a speech pathologist was the only logical step.
Today, standing at 45 degrees, Gazza received his first joint physiotherapy and speech pathology session to elicit a swallow after years of using a PEG feed (a gastric tube that deposits nutrition directly into his gastrointestinal tract, bypassing his mouth and oesophagus). It is only the beginning and there are likely to be more rocks and dips along this road, but as this therapist writes, he comes to the realisation that although we as clinicians help provide perspective for our participants, they too give us a whole new perspective – something we may never have considered on our own.
Thank you, Gazza, and keep up the good work!