Wish Book

Unable to walk, this mother with MS would like to be able to cook again

Elizabeth Minguez has multiple sclerosis and is in need of a motorized scooter to help her move around. She was photographed at her home in Southwest Miami-Dade on Nov. 20, 2019.
Elizabeth Minguez has multiple sclerosis and is in need of a motorized scooter to help her move around. She was photographed at her home in Southwest Miami-Dade on Nov. 20, 2019. mocner@miamiherald.com

Elizabeth Minguez was a busy woman 12 years ago. She had a career, supervising a bustling office, while she was also raising an energetic set of twins.

But today, Minguez, 51, is largely housebound in her Southwest Miami-Dade home. She needs help with simple tasks such as washing her hair — and with her mobility, because she can’t walk. Even moving from room to room requires that someone assist her with her wheelchair.

Minguez was 38 when she was diagnosed with multiple sclerosis (MS), an autoimmune disease that affects the brain and spinal cord. In MS, the immune system eats away at the protective covering of nerves.

Sitting in a recliner in her home’s family room, Minguez talked about when her medical troubles became known.

She was having problems seeing out of her right eye, which is one symptoms of MS.

But she didn’t really worry until “I woke up normally one day, and I fell when I tried to take a step.” At a hospital, she was told she had MS.

Grant a wish. Make a difference.

How to help: Wish Book is trying to help this family and hundreds of others in need this year. To donate, pay securely at MiamiHerald.com/wishbook.

Two years ago, she found she could no longer take any steps at all.

“There’s nothing to be done to stop the advance of the disease,” said Minguez, who maintains a cheerful, matter-of-fact demeanor.

As the disease progresses, Minguez’s challenges mount. One is how to cope on her own at times. Minguez has a small army of beloved friends and relatives she relies on for her care; an aide bathes her and makes her breakfast. But sometimes, she’s alone. Her husband and children need to work outside the home, and there’s often a gap between the time her aide leaves and a family member comes in.

Near her in her home is a small table with a phone and other items she’ll need if emergencies arise. Just the other day, Minguez said, she fell. But “luckily, I have good neighbors.”

Along with her increasing frailty come more worries about how her illness financially straps her family. The costs that her medical insurance doesn’t cover total well over $1,000 a month.

The stress Minguez feels over her medical bills is something she has in common with a big chunk of the one million people in the U.S. who live with the disease. And most of those patients, like Minguez, are women. A study published by the magazine Neurology in May showed that out-of-pocket costs for MS patients with private insurance have soared dramatically from 2004 to 2016. The costs of prescription drugs alone had risen 20-fold by 2016, according to the study by Dr. Brian Callaghan, associate professor of neurology at the University of Michigan in Ann Arbor, and his colleagues.

Minguez talked about the many phone calls she must make every day to an array of insurance and medical providers as she navigates through her bills and co-pays and figures out what’s covered, what’s not.

“Sometimes I want to cry,” Minguez said.

Yet she’s looking ahead with some optimism. She also believes that a new treatment for her MS, which will start early next year, could bring back some of her mobility.

And she has a strong desire to again take up a beloved hobby she had before MS struck: cooking.

But for that, she needs an electric scooter that would allow her to move around on her own. And that is what she hopes Wish Book can help her with. Wish Book is the philanthropic campaign by the Miami Herald and el Nuevo Herald, which runs each year during the holiday season and seeks help for members of the South Florida community who need assistance.

“With this type of chair I could cook and please my children, who love how I cook,” said Minguez, who wants to remain useful and contribute to the upkeep of the family home. Once, she said, she had use of a scooter during a family vacation, and she liked it very much.

The scooter “would give me a lot of independence because I can move positions, move up and down and to the side,” Minguez said.

Scooters come in several different sizes, models and price points. But the price for one never drops under $700, and to afford that, Minguez needs a helping hand.

That’s why the people who handle her case at the Disability Services for People Living Independently (DSAIL) program run by Miami-Dade County nominated Minguez to receive assistance through Wish Book.

Wish Book is trying to help hundreds of families in need this year. To donate, pay securely at MiamiHerald.com/wishbook. For information, call 305-376-2906 or email wishbook@miamiherald.com. (The most requested items are often laptops and tablets for school, furniture, and accessible vans.) Read more at MiamiHerald.com/wishbook.



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