Saturday, April 20, 2024

Lysanne living a full life


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Living life in retrospect has become commonplace for 36-year-old Lysanne Simmons.
It has nothing to do with living in the past or looking on the things she did once with with a regretful air. Rather, it’s thinking of the instances or clues that presented themselves during her childhood or teenage years, which was the precursor for the life she now lives daily with multiple sclerosis.
Like the time back at age ten, when she woke up and it pained her to walk. That pain, which increased throughout her school day, led to a five-day hospital stay.
Or the time when she was in an office and missed the chair and ended up sitting on the floor. Or the choreography that she struggled to get during her time as a dancer.
All are little clues that presented themselves at different stages along her journey.
“All the little signs were there. Even when it came to dancing, I’d be trying to do a choreography and it just wasn’t coming together. Now, when Iook back at why I couldn’t get the choreography, it was difficult because my coordination was shot to pieces,” she said. “I can look back and realise it wasn’t that I couldn’t do it, I was unable to do it.”
There is a lot that Lysanne is unable to do since being diagnosed in 2003 with MS. She cannot walk, or swim or dance like the vibrant person she was. Now, she struggles with the tremors that are a part of her daily life.
It is what Lysanne has become that is most profound. Not only does she have a steely determination to overcome MS and to proudly declare that she will walk again, but a belief that has been reinforced by dreams she’s had. Her postive attitude and serene spirit is uplifiting to see.
Whereas some people might get angry at their plight and question God, Lysanne never did.
“MS is such an insidious disease, it creeps up on you and attacks you when you least expect it. I never blamed God for anything,” Lysanne said. “God doesn’t give you any diseases and you’ll see that in the story of Job. Because of what Job went through, I’m able to go through this experience.”
Going through the tests and going on with her life are what Lysanne does everyday.
“I go to Dodds to see the inmates because I’m still an attorney-at-law,” she said. “I still need to understand why people do the things they do. But from what I’ve seen, we have generations that we’ve just lost.”
Life now for Lysanne is lived from such a different perspective.
“I’ve grown and matured but I don’t know if that has to do with MS or with time. I just know that my focus has changed,” she says. “I just need to know that people with the disease get the education that’s needed and the awareness is raised. Everybody understands that you’re not wobbling because you’re drunk, you’re wobbling because you can’t walk straight.”
 She tries to focus on the things that matter like family, and trying to find a new treatment that will give her back her life.
“There is this Liberation Treatment that came about through this Italian professor, Dr Paolo Zamboni. His wife happened to have MS and he just happened to stumble upon this treatment and it worked,” Lysanne said.
“His wife was willing to be the new guinea pig. But what is happening is that it’s not the neurologists fuelling this Liberation Treatment, it’s the persons who live with the disease and have to live with the challenges. The neurologists don’t have enough data, but guess what, they didn’t have enough data for aspirin and it’s on the shelf. Somebody has to be willing to do it and that’s what I’m willing to do. And that’s what I’m willing to do, stick me up, do what you need to do.”
 Zamboni’s initial research related to why the location of lesions in the brains of MS patients were all venocentric. He reasoned that there must be a link between the veins and the occurrence of these lesions.
And with further study, he found that the brain damage was all counter to the flow of blood, meaning that it likely had something to do with the drainage of blood back to the heart.
What he found was that in MS patients he could show that 100 per cent of the cases he tested had abnormal veins. He called this condition, CCSVI; specifically, that there were certain points where the veins from the brain along the neck and upper chest were either restricting or blocking the flow of blood.
His research proved that in all cases he found at least two abnormalities in the veins.
“It is a very basic procedure,” Lysanne said. “Angioplasty is done for anything. It’s not a new procedure, it’s an accepted medical procedure ,and I’m not sure why they’re holding back to let it go on.”
With this Liberation Treatment, it would have to be performed overseas.
 “I don’t know if it’s going to get here,” she said. “We have to go somewhere else to have it performed. The Multiple Sclerosis Treatment Foundation still wants to see that we can assist persons in obtaining the treatment. But it’s not being done here. It is slowly being accepted by neurologists outside of Italy and Europe.”
Lysanne’s passion for this treatment is not only for herself but also for others who live with the debilitating effects of MS.
“Unless you have MS, you can’t accept it or understand it,” she says candidly. “It’s when you’re living with it that you have a full understanding of what it is and what it does. When you toss and turn because you have it; when you wake up every morning and things are not as they used to be; you’re the one that has it and so you’re one that has to run the treatment down.
“You just need support for running it down and that’s what the MSTF is for.”


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