The Power of Peer Mentoring

scscia-logo-edited.jpgThe South Carolina Spinal Cord Injury Association has a Peer Visitor Program to pair newly-injured people with others who have lived successfully with an injury. Peers visit homes, hospitals or anywhere in the community that will help those who are new to living with a spinal cord injury.

I’ve been a peer visitor for several years and find the experience incredibly rewarding. I never know what to expect when I meet a person for the first time, but I’m often amazed at how much I learn from the experience.

Just last week, I met a guy at the hospital who has a C1 injury resulting from gun violence. He uses a ventilator to help him breathe. The doctors and nurses said that he is usually in a bad mood and doesn’t like to be bothered, but the patient allowed me to visit him.

We had a great conversation talking about his favorite football team, the Pittsburgh Steelers. He shared his love for watching comedies and spending time with family and friends.

I explained to him that there will be some rough days in between the good days, but don’t let those things keep you down for too long. I was glad to see him in good spirits when I left.

Even though we have different levels of spinal cord injury, we both know what it’s like to go through a traumatic event. As I’ve mentioned in previous blog posts, it takes time to get used to the new normal. You just have to take it one day at a time.

If you know of anyone who could benefit from having a peer visitor, visit the South Carolina Spinal Cord Injury Association website at http://www.scspinalcord.org/peers-helping-peers/peer-visitor-program

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AbleThrive: An Online Resource for People with Disabilities

AbleThrive LogoI first heard about AbleThrive through the South Carolina Spinal Cord Injury Association. It is one the newest resources for people with disabilities to network and share ideas about living more independently.

Brittany Martin, founder and executive director, started the organization after her father became paralyzed in a car accident. She created the online support network for people with disabilities and their families to overcome challenges and thrive.

Through the AbleThrive blog, you can learn about people who are living fulfilling lives. People with disabilities have the same aspirations and goals as anyone else; it just takes a different approach to get the job done.

Learn more about AbleThrive at www.ablethrive.com.

 

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Results from the Cooper River Bridge Run – Wheelchair Division

Approximately 33,000 people participated in Saturday’s Cooper River Bridge Run, but the first group to cross the finish line were members of the wheelchair division.

Using three-wheeled racing chairs, amputees and people with spinal cord injuries pushed their way across the Ravenel Bridge, through downtown Charleston and across the finish line.

Alexadre Dupont edged out James Senbeta as they crossed the finish line.

Alexadre Dupont edged out James Senbeta as they crossed the finish line.

It was a close race for Alexandre Dupont of Canada and Illinois resident James Senbeta. Alex came in first at 26 minutes, seven seconds, while James came wheeling across seconds later.

This is the fourth consecutive year Alex has won the wheelchair division.

Carly Pearson won the women’s wheelchair division in 50 minutes, 41 seconds.

Racing into the Hall of Fame

Wheelchair racing is a competitive sport for these athletes. They train for months at a time preparing for races all over the country. But, there’s one guy who helped start the wheelchair racing division of the Bridge Run…that’s Eugene “Genie” Wellons!

Genie Wellons accepting his Hall of Fame honor at a Press Luncheon; standing behind him is Kim Aquino, wheelchair division coordinator.

Genie Wellons accepting his Hall of Fame honor at a Press Luncheon. Standing behind him is Kim Aquino, wheelchair division coordinator.

Genie was inducted into the Cooper River Bridge Run Hall of Fame Friday. After Genie sustained a spinal cord injury from being in a car accident in 1990, he learned about the adapted sport. Not only was racing a form of recreation, but it was a way to help him recover.

Over the past two decades, Genie participated in a number of races, including the SC Wheelchair Games, James Island Connector Run, Kiawah Half Marathon, Peachtree Road Race, LA Marathon and, of course, the Bridge Run.

He has officially retired from competitive racing, but still enjoys being around the action. Genie helps with the logistics for the division when preparing for races.

Genie has broken barriers for the wheelchair racing community and continues to make an impact today. He says, “All I ever wanted to do, was to open the road for others with a disability and just to be accepted….as a member of the racing community!”

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My Mother’s Perspective on Raising a Son with a Disability

To celebrate my mother’s 60th birthday last Friday (March 20), we had a fun-filled weekend with family and food. Her mom, sister and brother-in-law came to visit. We took her to Hominy Grill, which is one of her favorite restaurants.

My mother is one of my biggest supporters. She has helped me overcome the challenges of living with a spinal cord injury. Read the interview below where she shares her perspective as a mother of a child with a physical disability.

Alex and Mom

Alex and his mom, Dr. Sherron Jackson

1. What were your first thoughts when you realized your son was paralyzed after the car accident?

I suffered a severe head injury and was in a coma for several weeks before I realized Alex had been injured. Once I woke up and saw him in intensive care and he smiled when he recognized me, I was overjoyed. As a pediatrician I had taken care of children with multiple injuries or disabilities, so I was just grateful and I thanked God that he was alive.

2. Who was part of your support system when learning about programs and services for people with disabilities?

All the doctors, nurses, and specialists, the rehab team, physical and occupational therapists helped Alex heal during his 6 month hospitalization after the accident. His early education was at the Charles Webb Center followed by special education services through Charleston County public schools. As a high school student SC Vocational Rehab services were available. Community resources included the department of disabilities and special needs, HASCI, the SC Spinal Cord Injury Association support group, newsletters, disability Resource Center, and programs for adults with disabilities. Of course, every support system includes family, friends, and our church family.

3. Has having a child with a physical disability changed your role as a physician?

Absolutely! I thought I was an empathetic pediatrician before the accident, but after taking care of my own child’s special needs, I became more observant and more vocal about the needs of my patients. Most families don’t know how to maneuver in the medical system and I was able help them identify resources.

4. Has anything surprised you, good or bad, about having a child with a spinal cord injury?

I wondered if Alex would become angry about his injury after he was old enough to understand what happened. Even as a young boy, he accepted the fact that some children were different. He told me, “God made some walking children and some wheelchair children”. He has taken on all challenges with a motivated spirit.

5. Why is independence important for your son?

Independence is important for survival in today’s world. Disabled persons should grow up confident in their abilities. Learning to drive an adapted vehicle has allowed Alex the freedom to have a job, further his education, and participate in community activities.

6. What advice would you give to other parents with a child with a physical disability?

I recommend parents teach their children to set goals and dreams and to give them the opportunity and resources to achieve their goals. We all have to survive in this world and some of us have different obstacles to overcome. For my patients with sickle cell disease, it is figuring out how to be successful students and adults despite having to live with a blood disorder.

7. Is there anything else you’d like to share?

I’m proud to be Alex’s mother because of his personality and attitude. He doesn’t worry and complain, which makes it easy to take care of him. Alex enjoys being an advocate for disabled persons and he has worked hard to improve access to services in the Charleston community.

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Longevity After Injury Project at MUSC

The Longevity After Injury Project at the Medical University of South Carolina conducts research on the life and well-being of people with spinal cord injury. Their research focuses on issues including secondary conditions, like pressure sores and urinary tract infections, and disability employment.

Much of the research conducted through the Longevity After Injury Project is collected through longitudinal studies, meaning that the same cohort of patients are surveyed every few years. This method of scientific research provides the opportunity to track how someone progresses through life after becoming injured.

Depending on the age at which someone becomes paralyzed, he or she can live 30+, 40+ or 50+ years with the disability. The research outcomes can help determine what is beneficial, and what is detrimental, to having longevity.

I recently interviewed one of their researchers, Dr. Lee Saunders, about a study related to smoking within the spinal cord injury population of South Carolina. The findings showed that the percentage of smokers is higher in the state compared to the national average. The next steps are to conduct focus groups and find better ways to  access healthcare and smoking cessation programs.

To see my video interview, go to http://vimeopro.com/muscchp/longevity-after-injury/video/122116709

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Tackling Fears, Taking Risks

When you think of vulnerability and disability, you may think of someone who has a weakened immune system, or a person who requires financial assistance to help pay for medical equipment and other needs. Another form is self-inducing vulnerability or where you let your thoughts interfere with your actions.

All of the above examples are valid forms of vulnerability, and many of us have experienced each of those situations. But, let’s focus on the fear that we bring on ourselves. When living with a disability, there may be times when you don’t believe you will be able to accomplish certain tasks. You may worry that your physical limitations will interfere with getting things done.

While you may have those times of doubt, or may feel vulnerable, you’ve got to overcome those obstacles. It’s not a sign of weakness when asking for accommodations, it’s the ability to take control of your life and live more independently.

With that confidence, you’ll feel more comfortable to learn how to drive, live on your own, try adapted sports and become more outgoing. With the right attitude, possibilities are endless. Tackle your fears and take risks! You only live once!

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The Standing Wheelchair – Scott Liesch Interview

Scott Liesch in the Standing Wheelchair

Scott Liesch in the Standing Wheelchair

We’ve all heard the benefits of standing, but that can often be difficult for people with paralysis. However, the Standing Wheelchair allows those with disabilities to stand whenever and wherever they want.

I spoke with Scott Liesch, of The Standing Wheelchair Company, and he described how the chair has helped him stay healthy while living with a spinal cord injury. The chair allows people to take pressure off of their hips and buttocks, stretch their leg muscles and be at eye level with others that are standing.

The chair comes in three configurations, depending on the person’s needs:

  1. manual chair with manual standing
  2. power chair with manual standing
  3. power chair with power standing

In the video, Scott uses a power chair with manual standing. Medicare insurance does not cover the standing wheelchair, but some private insurance companies will help fund the chair. Even if you are denied the first time, you may be approved on the second attempt.

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