By Leon Gray-Lockhart FOR many, being diagnosed with Multiple Sclerosis (MS) means the beginning of a long, dark and difficult journey. However, for Jeanette Robins facing the challenges head-on, adapting her lifestyle and keeping a positive state of mind has kept her happy, healthy and future-focussed.
Because of her background in nursing, Jeanette knew that the symptoms she began to suffer towards the middle of 2004 were something to be a little worried about.
"I had double vision, a loss of dexterity, a tight feeling around my middle, tingling in my hands and feet and felt shaky I think I knew I had it."
On December 1, 2004, Jeanette was diagnosed with MS and she admits she cried a lot - the images of ailing people with walking sticks and in wheelchairs at the forefront of her mind.
However, rather than let herself be depressed, she faced the challenge and allowed it to motivate her to fight not only the illness, but also the public perception of it. "I organised an appointment with leading neurologist, Ernest Willoughby and when I went to see him, he said 'Well, do you want a life?"
"I said, 'Of course I do' thinking it was a bit of a stupid question. I know now that he was trying to inspire me and was encouraging me not to not give in to the condition." "When people get diagnosed, they just give up they think it's a death sentence," she said.
"I've had friends who have been diagnosed and immediately start adapting their houses for wheelchairs and things only 30 percent of sufferers end up in a wheelchair." Jeanette's belief is that if you allow yourself to succumb to the traditional view of an MS sufferer, that's what you will become.
"It's not about pretending it's not happening, it's about meeting the challenges you face head-on and doing everything you can to help yourself."
Jeanette's determination has been noticed by the MS Society of New Zealand who have chose her as the 2008 Esme Tombleson Person with MS of the Year, saying in the announcement letter: "Your story is one to be very much admired showing huge achievements against several odds in all aspects of your life. The judges have acknowledged this as outstanding and inspirational."
The award will be presented to Jeanette on October 15, 2008 in Wellington, where she has been asked to speak as a guest speaker.
"I'm wanting to really change people's perceptions of MS I don't want to be all about wheelchairs and slow decline." "Some people who get diagnosed get frightened and don't get in touch with MS New Zealand, because they think acknowledging it sets you up for decline" "It would be really nice to think that people won't need to be frightened by it, will face it and manage it just as part of life. There is help and support out there." It is this determination that compelled Jeanette to seek out experts like Dr. Willoughby early on who put her case forward to an assessment panel for the drug avinex. "To get avinex, you have to meet strict criteria and I guess I was just lucky enough to meet them. Only a few people have access to it."
At $1600 a month, it's not cheap and is administered by injection once a week.
Some of its immediate side effects are nausea and fatigue, but Jeanette's happy to feel queasy for one day a week, considering the life it offers her she still works and is heavily involved in western horse riding.
"When I was first diagnosed I was working as a nurse manager at Maryanne Rest Home and I thought it would affect my employment chances, but they were really supportive. I've worked as a nurse manager at Trinity Rest Home since then and have just started a new job at Mercy Jenkins." "I also compete in western riding competitions and was awarded top rider in 2007 for the amateur pleasure category. In 2006, we got Horse of the Year."
Her son, Josh (12) is doing really well in sporting competitions and Jeanette, her husband Jim, and Josh are planning to head to Texas for important matches there. "To get the three of us to America isn't going to be cheap, so we're all working really hard at the moment."
Even though having MS does make Jeanette feel particularly tired at the end of the long working week, she believes having the condition has helped her develop into a more understanding nurse and a better person.
"I feel like I have a lot more empathy now when someone says they are in pain, I really do understand what they're going through."
"I also have a much better understanding of every part of my body now, where I used to just take certain things for granted."
Despite the quality of life that Jeanette enjoys because of her medication, pain and discomfort are still part of her experience.
"At the end of the week, I'm completely drained physically, mentally, spiritually, psychologically. I've had five relapses in the past four years too." "Sunday is my medicine day. I get up in the morning, take my painkillers and anti-nausea medication and then have my injection four hours later. Jim usually injects me, though I have done it myself. It sometimes means I have to miss a horse riding class in the afternoon, but I try to keep going."
'Keeping going' is part of the regime that Dr Willoughby and Jeanette's local doctor, John Bellomo encourage her to maintain.
"Dr Willoughby has been instrumental in helping to implement treatment of MS on an outpatient basis." "Dr John Bellomo is fabulous he's given me a life, and he's so understanding."
Just another challenge to rise to
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