A HEATHMONT man's determination to lead a normal life has helped him to defy the odds and amaze doctors.
Stuart McLeod was told he would never talk, walk or move a muscle again.
After a severe brain stem stroke on December 15, 2005, he was diagnosed with locked-in syndrome - a rare condition in which a patient is aware and awake but cannot move or communicate due to complete paralysis of nearly all voluntary muscles except the eyes.
At first, Mr McLeod could do nothing but blink. He couldn't move his head, arms or legs, speak or even swallow.
Doctors told Mr McLeod's wife, Daniela, that his quality of life would be non-existent and recommended that his life support machine be switched off.
"They asked me if it was any way he would have wanted to live," Mrs McLeod said.
"They were talking to me about that every five minutes.
"But we had a 13-month-old baby and I kept thinking, his will is there, he's still himself, so why shouldn't he have a chance to fight through it?
"I've always been a big believer in the power of the mind, and for my own sanity I wanted to hang on to hope."
Despite feeling overwhelmed with joy over her husband's progress, she said it had been a "roller coaster of emotion" for the family.
Mr McLeod spent about six weeks in the intensive care unit and two months in the neurology ward at the Austin Hospital in Heidelberg. He was then transferred to the Royal Talbot Rehabilitation Centre in Kew for nine months before being sent home.
Since his stroke, Mr McLeod has gained a small amount of movement throughout his body, including his arms, legs, fingers, neck and torso.
The big milestone has been the improved movement in his thumb, which has allowed him to communicate through a sensory software called The Grid. He can also mouth out words and swallow.
"When Stu left hospital, doctors were astounded, though making the transition from Royal Talbot to home was more difficult than I ever anticipated," Mrs McLeod said.
"I was excited about coming home and resuming our family life but this proved a lot harder for me than I first imagined.
"Immediately on our return home, our doors were forced open to a number of strangers in the form of carers, therapists, case managers and council staff.
"All were there with the aim of helping us but the lack of privacy was hard to take. The private family life we once shared and cherished was no longer.
"He's still making gains all the time. We can see things that are kicking along, but it's a slow recovery process. Exercise and positivity is the key and we never say never.
"One thing has remained constant - Stu's unfaltering strength and optimism. He is an incredible human being with more depth and passion for life than anyone I know."
Mrs McLeod said their son, James, had coped with her husband's disability well. "He's a very sensitive but compassionate boy. He's only five but he tries to help with everything."
Following her husband's stroke, Mrs McLeod quit her job to become his full-time carer, and the couple were forced to sell their car to help pay for medical bills.
In 2008, they were granted funding under the state government's Acquired Brain Injury Slow to Recover program to help with equipment and ongoing speech, physio and occupational therapy.
A fund-raiser held by family and friends helped the couple buy a second-hand taxi that had been modified for wheelchair access, but the old vehicle is beyond repair and carers find it hard to get Mr McLeod in and out of the car. They need help to buy a Kia Carnival to accommodate Mr McLeod and his wheelchair.
"Because our vehicle is unreliable and labour-intensive to get me in and out we tend to avoid going out," Mr McLeod said.
"Which is unfortunate because James would love to go to the footy and see the mighty Hawks and go on holidays away as a family."
Mr McLeod is writing a book about his past, his stroke and how he survived it.
If you can help the McLeod family, contact the Journal on 92387777 or journal@fairfaxmedia.com.au
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