Rajiv Odhavji can’t remember a time when being active wasn’t a huge part of his life. From summitting Mt Fuji at sunrise for the Japanese Obon Festival to learning to fly a plane, the 31-year-old has amassed an incredible number of accomplishments in his life so far.
Now new technology available for the first time in Australia through Royal Rehab, is helping him live better with Multiple Sclerosis (MS), something that appeals to the computer engineering self- confessed ‘geek’ in him.
Life was an adventure for Rajiv until he noticed some physical changes in his body four years ago.
“Being active indoors and outdoors was a huge part of my life. I played violin and trumpet, was an avid rock-climber and obsessed with motorsports of all kinds. I travelled all around the world except to India, where my family is from,” said Rajiv.
“But in April 2017, I was walking my dog downhill one day and remember thinking ‘I’m going to roll down this hill.’ I had to walk sideways the rest of the way down. I was 28, fit and active so I knew something wasn’t right.”
Concerned, Rajiv saw his doctor who sent him for an MRI scan and later diagnosed with Primary Progressive Multiple Sclerosis, a rare type of MS. His neurologist believes it probably started in high school when Rajiv suffered a year of severe monthly migraines at the time.
Life stopped and inexplicably shifted
‘’For me it was as if life stopped and inexplicably changed,’’ explained Rajiv of the day he was diagnosed with MS.
“Finding out I had a horrible progressive illness that couldn’t be cured… there are no words to describe it! Who would think that a couple of stumbles were signs of a serious illness you’d had for half your life without even noticing,” said Rajiv.
Fortunately for him, Rajiv was diagnosed in a two-week window where a new drug was being made available on compassionate grounds to people with certain types of MS. He had already been researching it so when the doctors told him it could be a treatment to help manage his MS, he said “right, let’s go!”.
Advanced robotics exoskeleton, EksoNR, makes him feel victorious and restores hope
It was Rajiv’s mum who first put the idea of technology-aided rehabilitation on his radar in February of this year. By then, he was only able to get around using a four-wheel walker at home and a powered wheelchair outdoors. He couldn’t jump or walk more than a few hundred metres — and even then, only with the support of aids and rests.
“Mum saw a story about EksoNR on the news. When I read about it, I thought ‘Wow, this could really help me’,” Rajiv said.
He contacted Royal Rehab with an open mind, deciding he’d try it because there was nothing to lose. Within a few days, he had an appointment at Royal Rehab to be assessed for his suitability to use the EksoNR and to talk about how the advanced robotic technology could help. The physiotherapy team assessed Rajiv as having suitable requirements to use the EksoNR. “At my session, they strapped me into the EksoNR securely. They gave me a walking frame and then just asked me to stand up which I did. I could not, for the life of me, remember the last time I had stood like that with no concern. It was unbelievable. I was a bit nervous…I just leaned left and right, to test if I could trust it. Amazingly, I could,” he said.
Rajiv says the difference to his mindset and confidence was immediate. When asked about how it felt to walk with the EksoNR, Ravij pointed to the music he chose for a few significant posts on his MS Podcast Instagram feed.
“I feel like the Terminator,” Rajiv laughs. “I haven’t walked on my own two feet in years but since starting (physiotherapy using the) EksoNR, I am getting better at walking, which was tiring at first. Without it, I wouldn’t know what movements I would need to make (me) to walk better.”
Five sessions in, the physiotherapy team are helping Rajiv to retrain his brain and muscles to walk better by using the EksoNR. He is relearning the walking sequence from shifting his weight forward, to swinging his legs, to striking the ground with the heel. The EksoNR assists his weight and offers feedback, so he can correct his posture and leg movements, while walking during therapy.
Rajiv is confident the technology will help him walk better and maintain it over time.
“I know I’m going to have this disease, and I’ve had many cries. I see a psychologist every week because I know mental health is such a big part. But I don’t want to let the disease crush me.”
“I had lost hope in many ways because I was getting worse. But I feel victorious in the EksoNR. I feel like I can walk again,” he said.
Podcast and driving again on the cards for the future
On the one hand, Rajiv says he almost felt a sense of guilt for not noticing his symptoms. But then he asks himself “what would have happened if you’d noticed it earlier?” In his case, he says it allowed him to live his life fully and that knowing sooner wouldn’t have made life better for him.
“I summited Mt Fuji in 2014 and I know now that I would have had full-blown MS at the time. I realise it was extra incredible for me to be standing on the peak at sunrise on a day that is a sacred one Buddhists who believe ancestor spirits return to visit them,” he said.
When he was first diagnosed, a friend who works in radio suggested Rajiv start podcasting as a distraction and together, they recorded weekly episodes about F1 motorsports in a studio. Soon after, his girlfriend suggested he shift focus and has since started a podcast from home called ‘Multiple Stories’ to help other people living with MS.
“I’ve written five episodes so far. It takes time to research and write so it is slower than my series on F1, but it’s a lot more personal.”
Rajiv is also excited about driving again and will soon take delivery of a car which has hand controls that means he can drive and be independent with MS. He also wants to continue to travel and make life work for him as best he can.
Rajiv’s message for others
He says there is no doubt that life has thrown him a curveball. But by configuring his NDIS budget and enlisting the right support, Rajiv feels empowered to live life as meaningfully as he did before, albeit differently.
“I completely understand what other people with MS are feeling. Having the right support is key because none of us can do this alone. We can’t and we shouldn’t,” he said.
“EksoNR adds to my wellness. To feel that again – leaning to walk, to move – it feels mentally powerful. I couldn’t say more about the mental benefits. I am also walking better between sessions – my leg lifts a little higher and my body is a little stronger. This is leading bionic technology, and if you have the means I say ‘try it’ – you have nothing to lose,” Rajiv said.
To learn more about how EksoNR can support people living with MS and other related neurological disorders, please contact us on (02) 9808 9222 today.