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Tuesday

 

The Secret Life of Carla Basante: Fighting for independence, self-esteem on World MS Day: VIDEO






























Carla Basante gives her son Joseph 16, a hug at her home in Lebanon Township on May 11, 2016. Image Source: Alexandra Pais/Courier News

Lebanon Township woman feels empowered after participating in a Kessler Foundation study

Carla Basante may wake up and take her dog for a walk before returning home for a cup of tea, a gluten-free cookie and a little time in front of the Hallmark Channel.

Or, her body may ache from the moment she opens her eyes, leaving her to spend the rest of the day trying to summon enough energy to make herself something to eat.

So even though Wednesday's World MS Day was created to commemorate “all the ways people affected by MS maintain their independence and get on with their lives,” and the goal is to flood social media with #strongerthanms, the reality is Basante’s multiple sclerosis might render her too weak to so much as venture past the front door of her home in Lebanon Township.

“I refer to her as a bitch,” Basante said. “People go, ‘Why do you call MS a her?’ It’s because she can be a real bitch at times. I have to work with it. I can’t work against it. I can’t hate it because it’s part of who I am. I can’t change it because there’s nothing that I can do to rid myself of it.

“So it’s difficult at times when you wake up every morning and you say to yourself, ‘This is going to be a good day. I can move all my limbs.’ And you pray. I meditate, I pray. I’m thankful. I’m blessed,” she added.

Living with multiple sclerosis

Life is a swirl of emotions and experiences for the estimated 2.3 million people globally living with multiple sclerosis, whose myelin in the cells of the white matter in their brains is breaking down and making it harder for signals to get from one place to another.

According to the National Multiple Sclerosis Society, the most common symptoms are overwhelming fatigue, visual disturbances, altered sensation and difficulties with mobility, but it could also cause blurred vision, slurred speech, tremors, numbness, problems with memory, paralysis, blindness and more. It can cause great physical pain and/or affect a range of high-level brain functions.

There is no cure.

MS is particularly cruel since it typically manifests itself in people in their 20s and early 30s, just as they’re finishing school, launching careers, falling in love, starting families.

They’re people just like Basante, who was diagnosed in 1997 with relapsing remitting MS after she was in a car accident. She says she wages a constant battle to keep multiple sclerosis from robbing her self-identity and self-esteem.

And especially her independence. She used to work at the American Cancer Society. Heck, she’d often pick up a second job working in retail, like at Aveda at the Short Hills Mall. But since her condition has advanced in the past nine years or so, not only can she not work, but she’s decided it’s best if she stops driving.

Basante decided to put away her car keys after an incident she describes as “beyond scary.” She woke up from a nap and couldn’t move her arms or legs. Helpless, she called out to her son, Joseph.

“My son couldn’t understand and he’s saying, ‘Mom, just move.’ And I couldn’t,” she said. “He was like, ‘Come on, let’s go to your bedroom.’ And I’m like, ‘Honey, I can’t. You’re going to have to lift me up and put me on the couch.’ I had to tell him how to go behind me and put his arms under my armpits and lift me up and put me on the couch.

Her ray of light

Joseph has been a ray of light on Basante’s darkest days with MS, breast cancer, eye surgeries and a lingering back injury.

It hasn’t been easy to see the woman who used to drive him to practices and games have to hug the walls to get around the house sometimes, but the Voorhees High School sophomore has tried to stay strong for his mom. He’s getting pretty good at whipping up a salad for her, and he always pitches in with the cleaning.

Joseph wishes he could wave a magic wand and give his mom back “the ability to do whatever she used to do without limitations, like driving, going to the beach, stuff like that. She loves going different places. She loves the beach, especially, and it’s just hard for her.”

There are no magic wands, but there is the Kessler Foundation in West Orange. The 51-year-old single parent recently participated in a study in which people with MS exercised in a pool to determine if it could improve their symptoms. The study was the brainchild of Helen M. Genova, Ph.D., who is a research scientist in the Neuropsychology & Neuroscience Lab of the Kessler Foundation Research Center.

Although the study is ongoing, Genova has heard anecdotally that the participants have enjoyed more energy, better balance and improved mood. And beyond that, they’ve enjoyed the social camaraderie that comes with being in the class and doing the same heal-to-toe walks across the pool.

“MS can be very isolating,” she said. “You can’t get out there as easily as before and so it’s difficult to find social connections with other people, especially people you used to be good friends with. So this is a place where they can all come, they are all going through the same thing. It’s three times a week, so they begin to enjoy the friendships they form and the way that they all support each other.”

The study has given a sense of empowerment, if not a glimmer of hope, to people such as Basante.

“You don’t know what’s going to happen at any given moment, and that’s the scary thing about having MS,” she said. “But in this day and age when there is a place like Kessler that does all this research that can be adapted …”

Basante’s voice cracked with emotion. She paused for a moment, then started again.

“What they’re doing is just incredible because we don’t necessarily have to throw drugs down people’s throats. We can work together in terms of rehabilitation. We just want the best quality of life possible.”

Story Source: The above story is based on materials provided by MYCENTRALJERSEY
Note: Materials may be edited for content and length


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