Wednesday, April 17, 2019

Curvy Girls Provide Group Support for Scoliosis

Marissa
As if puberty isn’t awkward enough, each year about 3 million new cases of scoliosis are diagnosed in the United States. 

Scoliosis, the sideways curvature of the spine, shows up most often during growth spurts, usually when kids are between 10 and 15 years old. While the same number of boys and girls are diagnosed with minor idiopathic scoliosis, curves in girls are 10 times more likely to get worse and may need to be treated with braces. 

Coming at a time when pre-teen girls are self-conscious about body image, the idea of wearing bulky braces can be especially daunting for a kid who just wants to be normal.

Enter Curvy Girls, a support group for girls with scoliosis.
Led by girls who share the same challenges and concerns, Curvy Girl members meet regularly in Richmond to talk about anything they’d like.

“It offers girls a comfortable and supportive environment to help each other carry on daily life with a brace,” says Jaime Gates, whose 12-year-old daughter, Ella, one of the group’s co-leaders. “Things like what do you wear under your clothing? How do you tie a shoe? They truly lead the meeting and Curvy Girls International (the parent organization) gives them the tools.”

Ella
Ella and co-leader Marissa, also 12, met at a Curvy Girls meeting in Norfolk and are patients at Powell Orthotics and Prosthetics, where orthotist Beth Martin customized their braces.

“The parents are in a separate room during Curvy Girl meetings, giving the girls a chance to talk freely,” explains Marissa’s mother, Shannon Wood. “That way the parents can talk about issues, bounce some ideas off each other and learn about new ways we can help.”

Signs of scoliosis

While scoliosis can be caused by conditions such as cerebral palsy and muscular dystrophy, the cause of most scoliosis is unknown.

If you look at someone’s back, you’ll see that the spine runs straight down the middle. When a person has scoliosis, the backbone curves to the side. Anything that measures more than 10 degrees is considered scoliosis.
The most effective treatment is with a customized brace. There are a number of different rigid-back braces available that vary in how pressure is applied to the spine and ribs to prevent a scoliosis curve from progressing. Some braces require full-time wear, typically 16 or more hours a day, while others are worn at night while sleeping.

Given the impact of a brace on daily living, it’s helpful to have a support network for girls 8-18, Gates says. 

“It’s a journey and every girl’s journey is different,” Gates says. “Everyone in the group is there to give advice, comfort and listen on that journey.”

“It’s a lot of responsibility for young children,” adds Wood. “When my daughter was first diagnosed, it was a tough period and very painful. She was the only kid in her school with a brace. We were searching for help. Through Curvy Girls she got to meet peers in a brace. It’s made a world of difference.”

Gates has two daughters with scoliosis. “They were on this little island together and no one to understand what they were going through,” she says. “And you truly don’t get it – how uncomfortable a brace can be, the pain, having to sleep in it and yet figure out how to let them be a kid. Just to have these girls together and able to talk privately about wearing braces is so wonderful.”

Gates and Wood also credit the support of Martin and the team at Powell. “They care about their people and they want them to have every opportunity,” Gates says.

They encourage parents to have their children checked out during regular pediatric visits. A simple bend-over test can catch a problem early, especially if scoliosis runs in the family.

“The sooner the better – in elementary school before growth spurts,” Wood says.

Curvy Girls meet monthly at different locations. To learn more, please send an email to Richmond@CurvyGirlsScoliosis.com.

Monday, April 1, 2019

Discover Your Possible

New one-day event offers resources and skills for amputees and caregivers

Discover Your Possible
Not every amputee is on the same path to recovery.

For Robin Yoder, an athletic and goal-minded social worker, losing her right leg to cancer could
have been a devastating setback. For someone who participated in triathlons and running
races, though, it was just another challenge to overcome.

But she quickly realized not everyone heals the same.

“Looking back I was naïve,” says Robin, an eight-year amputee. “I was a success. An athlete my
whole life. I had big goals with David Lawrence, physical therapist and owner of Lawrence
Rehabilitation, The Gait Center, and Joe Sullivan, prosthetist and co-owner of Powell Orthotics
and Prosthetics. I walked and ran quickly and did a triathlon that first year. I was in my own,
isolated world getting those skills back. I assumed everyone else was recovering at the same
pace.

“I assumed in my own naiveite that even though I was going through a struggle physically and
emotionally, I learned about frustration and perseverance through athleticism. I was assuming
everyone else was progressing like as me but they weren’t showing up at races.”

When she realized other amputees needed more resources and encouragement, her fix-it
instinct as a social worker kicked in: She created “Discover Your Possible,” a one-day, affordable
skills/education and activity clinic in Richmond for individuals living with lower-limb
amputations regardless of their activity level.

She does not have the physical therapy background to lead such a workshop but she is
connected to the people who are. Robin pitched her vision and idea to Lawrence, founder of
Mission Gait, and his team. Mission Gait accepted the lead role in this unique first-time event.

“This event is a result of a vision to help people have the opportunity to discover what they are
capable of,” Robin says. Discover Your Possible is open to all skill levels of lower-limb amputees,
their caregivers and families to learn new skills and explore activities such as running, fly-
fishing, kayaking, wheelchair sports and much more.

“This is an event designed to improve capabilities and confidence,” Robin says. “We’ll have
experts available from the physical therapy/prosthetic specialties along with community
partners from the adaptive and therapeutic recreational areas helping those attending from
basic skills to a high level of activity.”

The first Discover Your Possible will be held from 8:30 a.m.-4:30 p.m. on Saturday, April 27 at
Mission Gait, 8191 Staples Mill Road. The $20 registration includes lunch. Caregivers, families
and students are welcome to attend for $10.

Powell is proud to be a sponsor for the event.

Filling a community need

Robin says the event is part of an effort to show amputees that life doesn’t have to be
stationary.

“Learning to live with limb loss is hard and leaning to use your prosthesis is harder,” she says.

“It requires determination and motivation, along with good a support team. You need a highly
skilled and compassionate prosthetist and a physical therapist with prosthetic specific training
who can educate you about the unique challenges you will face and the resources available to
you. If just one of these is missing or weak, progress and success may take longer or not
happen at all. The goal is for you to be the best that you can be.”

Participating in support groups, Robin said she wanted to provide motivation to give fellow
amputees something more to be hopeful about. Through her position as a board member with
Mission Gait – a non-profit organization that empowers the physical rehabilitation community,
through education and research, to help patients with complex gait disabilities learn to move
again with confidence – her idea for a hands-on clinic took hold.

“This is a wonderful way for amputees in the Richmond area to get together, learn new skills,
network, and learn about the resources available to them in a supportive environment,” she
says. “We want this to say – there is an active and fun life for you beyond therapy.”

The event includes education, drills, equipment demonstrations, a panel discussion and three
breakout sessions to try new activities, including running, wheelchair tennis, golf, hand-cycling,
circuit training and more.

The guest speaker is Cosi Belloso, a physical therapist dedicated to working with amputees. The
owner of Palanca Physical Therapy, a prosthetic training specialty clinic in Tampa, is the host of
Cosi Talks, a Facebook page teaching amputees, clinicians and supporters about topics that
impact their daily lives.

Powell’s Joe Sullivan will be among those participating on Belloso’s panel discussion.
“I’ve been blessed to have the right people in my world and the motivation,” Robin says. “I
can’t teach it but I’m connected to the people who are. Let’s showcase this day that brings

people together in a united front who care for and live with lower-limb amputations to move
beyond therapy to enjoy what is possible.”

For more information and to register, please visit www.missiongait.org/events.