Tag Archives: sci recovery

What the Holiday Season Means to Me After a Spinal Cord Injury

In 2009, Kirk Williams was a motivated Colorado sociology graduate who filled his downtime with outdoor adventures and sports. In November of that year, a “complete freak accident, like trip-over-your-shoelaces kind of crash” changed his life: Kirk sustained a C5 spinal cord injury as he flew over the handlebars of his mountain bike. The injury left him paralyzed with a limited amount of feeling in his legs and limited use of his fingers.

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Kirk didn’t want his injury to put the brakes on his full and active lifestyle

As soon as he was able, Kirk began to immerse himself once again in outdoor adventures and sports. “My injury did influence my hobbies but I haven’t stopped doing what I love,” he explained. “I still do photography, camp, mountain bike [and] new hobbies like wheelchair rugby, scuba diving and hand cycling. I love travel and I was not reluctant at all to travel after my injury.”

Photo by SCI Recovery Project via Facebook.

Rehabilitation helped Kirk to reclaim his adventurous lifestyle, little by little. Source

Kirk is the founder, director and pilot/camera operator of the UAV-powered video production agency Birds Eye Optics. “It’s wild to think that while most people may think that since I’m in a wheelchair, my perspective is limited,” observed Kirk. “Actually, with my career, I see further than ever before.”

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“With my career, I see further than ever before.”

He credits fundraising and community support as essential parts of his journey. “My community of family and friends has been one of the most significant parts of me getting where I am today,” said Kirk. “Without the help of friends, family and HelpHOPELive, I wouldn’t have been able to afford the amazing equipment and lifestyle that I love to live. With my incredible support system, I’ve surpassed even my wildest dreams of what is possible.

I see each [injury] anniversary as a day to look back and see just how far I’ve progressed. I remind myself that anything is possible. I’ve taken the cards I’ve been dealt to not only survive but thrive in what first seemed nearly impossible circumstances.”

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On each injury anniversary, “I remind myself that anything is possible.”

Asked about the end of the year approaching, Kirk captured a sentiment shared by many of our clients, whether they are living with an injury or waiting for a transplant: the holidays are a time for hope, family and looking to the future. “The holidays are always a wonderful time of year,” explained Kirk. “I can catch up with friends and family and we can enjoy each other’s company. As crazy as they are, it’s always rewarding to have my entire family together in one place.”

The hustle and bustle of the season doesn’t appeal to Kirk, who said, “my favorite part of the holidays is being able to relax with the ones you love. It’s not about the busy times for me…it’s the downtime that I cherish the most. And the food!”

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What do the holidays mean to Kirk? Hope, family and looking to the future.

I usually make a New Year’s resolution,” said Kirk. “It’s a good chance for me to attack my goals with a refreshed set of eyes.”

His advice for others entering the holiday season and looking ahead to the new year? “Life is short, so why not try to experience it to the fullest? Get out there and try everything you can. You can be as happy or as upset about your injury and your life as you choose to be. It’s entirely up to you.

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Kirk says happiness after a spinal cord injury “is entirely up to you.”

What does hope mean to Kirk? “Hope means having my eyes set on what lays ahead, and knowing there is always a possibility for positivity given the right mindset.”

We know fundraising can make a significant impact on an individual’s life through the power of community, both financially and emotionally. As you continue to trust our nonprofit for a lifetime of medical fundraising support, we hope this holiday season brings you memorable times with friends and family and plenty of opportunities to look ahead, with hope.

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From our family to yours! Photo by Kirk.


Kirk Williams continues to fundraise with HelpHOPELive for the lifetime out-of-pocket medical and related expenses associated with his injury.

Bella Da Dawg is Kirk’s four-legged companion. She “spends most of her days dreaming of tennis balls” and “screwing up sound from her habitual snoring and striking good looks.”

Making Connections After A Spinal Cord Injury Can Change Your Life

At age 13, a spinal cord injury changed Reveca Torres’s life. She began working with HelpHOPELive to fundraise for injury-related expenses in 2008. Now the executive director of the spinal cord injury support community BACKBONES, Reveca devotes her time to helping others discover vital SCI resources and find joy and connection after injury. Here are her insights on connecting with others, fighting stigmas and learning to embrace your new life.


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Do spinal cord injuries create both physical and emotional challenges?


Definitely. Physically, your body is entirely different post-injury. You have to re-learn what your body can do. All of your internal systems are affected, from bowels and bladder to body temperature and your sense of touch. Everything is so different. It takes years to be self-aware and understand the new feelings, signals and reactions in your body.

Initially, I thought of my body as broken. Now I know that my body is still alive. It’s still working. I won’t ignore it. You have to learn to stay healthy or you risk being stuck in bed healing from issues and other injuries.


What can you learn through connecting with peers?


I think it’s really important to get to know other people with spinal cord injuries so you can begin to understand how they handle their daily lives. Connection is a great way to learn from others and discover some self-acceptance, too. Getting comfortable with your situation is one of the biggest hurdles when you are first injured. You need to see that others in your situation are making it work.

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Connect with others with SCI and learn how they make it work.

Knowing that someone else understands exactly what you’re going through is powerful. It’s wonderful to not have to explain yourself or what you’re feeling. You can talk, ask questions and learn from each other. There’s a lot of relief knowing that someone else knows what it’s like to be you. I hear that when I talk to people on the phone: the conversation starts with a lot of questions, nerves and anticipation. By the end of the call, there’s a sound of relief in the caller’s voice.


What helped you to make a breakthrough after injury?


I didn’t have a lot of friends with injuries after I was injured at 13. I had to learn how to conquer a lot of physical challenges on my own. Acceptance was a big part of that – I was coping with SCI AND being a teen! At college, I met other people with injuries who were playing sports, dating and traveling. That community gave me the confidence to try new things.

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Moving away from home helped Reveca find her independence.

I had a lot of support from family and friends and they were behind me all the way after I was injured, but ultimately they couldn’t show me how to build a life for myself. I had to see other people make it happen to get there myself. Moving away from home made a big difference for me. Going away to college was intimidating, but when I got there, other people would approach me and start conversations and we’d become friends. Give yourself those opportunities, whether that means putting yourself out there or moving to an area that gives you access to a stronger SCI community.


Is it tough to make connections if you are nervous or naturally shy?


It is always intimidating at first to connect with others or ask questions. Those physical and emotional challenges after injury can make you feel like you need someone else to advocate for you. Someone close to me gave me a really good piece of advice: become your own advocate. Family members provide as much as they can for someone they love and they want you to get better and get to a good emotional place, but that support can hinder your growth.


Do you have to embrace the “disabled” label to be a part of the SCI community?


Initially, I didn’t want to hang out with other people who used wheelchairs. I didn’t want to identify as “disabled” – I wanted to believe I was still the same person. I was the same person in some ways, but I was also very different after injury, and I had to learn to embrace that. Being part of the disability community doesn’t stop you from participating in the able-bodied world. You can have both!

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“There shouldn’t be a line between ‘us’ and ‘them.'”

Being injured is not something any of us asked for or want to be a part of, but the SCI community is a great group of people. We have all gone through something life-changing and we have learned how to adapt. These communities are essential not just for people who are injured but for their friends and family members as well. Our events are open to people with and without disabilities. There shouldn’t be a line between “us” and “them.” We are all human, and we can all relate to one another on different levels.


 

BACKBONES splash wheelchair beach disability spinal cord injury Reveca Torres


To connect with other people with spinal cord injuries, visit BACKBONES online. If you need help covering uninsured injury-related expenses, reach out to us.

Motivated By Love, One Family Launched The ‘Project’ Of A Lifetime

Paul Pickard founded Project Walk Atlanta in 2011 with his wife, Jeannie, and his son, Chris, who was paralyzed in a car accident when he was 18 years old. We asked Paul about spinal cord injury rehabilitation and his motivation for opening Project Walk Atlanta.

Project Walk Atlanta staff


What did you know about Project Walk when you founded Project Walk Atlanta?


Other than knowing that God placed it on our heart to build the facility in Atlanta, I really didn’t know that much about the PW network. When we founded our center, there was no research or due diligence before building. As crazy as it sounds, in the middle of a recession, we built PWA solely on faith, without a business plan.

What I know today about the four Project Walk centers — located in Orlando, Kansas City, Dallas and Austin — is that they are all very passionate about helping people with spinal cord injuries. These centers opened because there was a serious need in their community and their lives. Each center is filled with love and compassion for its clients.


Can services like the ones offered at Project Walk Atlanta significantly improve quality of life for people who have spinal cord injuries?


All human bodies require movement and some level of exercise. At a bare minimum, people with spinal cord injuries learn how to get their body moving to connect with their paralyzed limbs. Daily quality of life factors such as eating, scratching an itch, brushing teeth, etc. are addressed with our services by training the neuromuscular system.

Project Walk Sarah


What are some examples of modern spinal cord injury therapy equipment or technology used at Project Walk Atlanta?


We are fortunate to carry the entire suite of Restorative Therapy Functional Electrical Stimulation machines: RT600, RT300 and RT200. FES coordinates neuromuscular re- education by firing respective muscles in the same order as when a person moves. Some other exciting pieces of equipment:

-The locomotor treadmill is an innovative intervention that helps individuals with gait impairments. The technique is an activity-based therapy that works to retrain the spinal cord to “remember” the pattern of walking again.

Vibration platform training excites additional muscle fibers to become engaged, improves bone density, and increases circulation and aerobic capacity.

Tissue regenerative technology uses shock wave energy for tissue regeneration, reducing scar tissue around the injury point and activating the autonomic nervous system.

The Bioness H200 is electrical stimulation prosthetic for the hands.

Project Walk Nick


Which innovations or technological advances are you most excited about for the future?


Dr. Scott Bertrand’s core development and training devices are promising. Currently in use at his office in Georgia, this device uses rotational mechanics of an isolated muscle contraction on each side of your core to fully engage activity. Other devices that are promising involve body weight-supported gait training which measures speed, stride length, stride width, tempo and weight-bearing percentage to drive performance improvements. And, finally, a new device being made for clinical use is exciting: an EMG portable unit that will measure exact muscle activity, providing the user and the clinician the ability to discern appropriate techniques leading to neuromuscular activity below the level of injury for our clients.


Did your son’s injury influence your outlook on spinal cord damage, therapy, or life in general?


I find myself not complaining as much anymore because I really, really hate this injury with a passion. In a flash of a second, your entire life changes forever. It doesn’t creep up on you; it just annihilates your world.

Chris Pickard Jeanie Pickard Paul Pickard Project Walk Atlanta Georgia


Does Chris continue to make progress with his own rehabilitation journey?


Rehabilitation takes form in several ways. It is not only physical; it is also spiritual and mental. Chris has made great strides in all three.


What keeps your family moving forward?


FAITH, without a doubt. The strength that our faith in Jesus Christ has given us is the glue that has held us together. There were many nights spent crying, asking God for answers and even getting angry with God. We will never understand nor should we expect to. Without faith and prayer, this injury could become overwhelming at times.


Does your family’s personal experience give you unique insights to share with other families who come to Project Walk Atlanta?


You learn very quickly how to adapt to this injury. At Project Walk Atlanta, every client becomes part of a bigger family that shares and loves one another. We are there to pray with you or cry — whichever!

Project Walk Joe


Is cost a significant barrier to SCI rehabilitation for some families?


Cost is the biggest barrier. If you have a premium insurance policy, you might get reimbursed 75%. Otherwise, you have to rely on fundraising. Although we try to provide scholarships when we can, it is very important that we teach our clients how to fundraise. The average person has never asked for money or knows how. Although there are many online fundraising sites, I always point them to HelpHOPELive where they will get the best guidance to raise funds.


Based on your son Chris’s fundraising efforts with HelpHOPELive, what are some of the costs that SCI-affected families can expect to face 3 to 5 years after injury?


Medical supplies, housing adaptation, standing frames, FES bikes and vehicle modification are a few expenses that can be anticipated


What piece(s) of advice would you offer to someone who was recently injured? What would you tell his or her family?


The advice that I would give someone is to begin fundraising early. This injury is so devastating on families financially that most families can end up in bankruptcy. Everything is so expensive and most insurance will not pay for long-term therapy. Medicaid pays for catheters but won’t pay for suppositories. Go figure!


The PWA website notes: “Everyone needs hope. Without hope you can’t recover.” Do you think that hope or a positive attitude can alter the rehabilitation process?


Absolutely. Without hope, what do you have? Every person affected by spinal cord injury has or once had hope that he or she would recover. Unfortunately, most acute hospitals’ doctors knock the wind from your sail by making statements like “you will not ever walk again” or “get used to the wheelchair.” At the end of the day, only God knows what anyone’s outcome really is.

I know many people that were told they would never walk and now they are beginning to take their first steps, crawl or even walk again. It is that hope and the belief in themselves that helped them get to that point.

Project Walk equipment


Connect with Project Walk Atlanta on Facebook to learn more about spinal cord injury rehabilitation. You can follow Chris Pickard’s journey on his Campaign Page.

 

7 Myths About Spinal Cord Injury Rehabilitation

Families coping with a spinal cord injury have so many factors to consider, from immediate medical support to long-term care and financial planning. In the final installment of our series, Amy Bratta gives us 7 common misconceptions about spinal cord injury rehabilitation.

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Myth 1: Cost isn’t a factor after a spinal cord injury.


In most cases, injured individuals will need wheelchairs, lift systems, ramps and bathroom equipment before continuing to recover at home – and those are just the basics. Access to these resources is significantly impacted by insurance and a patient’s individual financial circumstances.


Myth 2: Young adults find it easier to deal with spinal cord injuries.


When it comes to spinal cord injuries, every individual is unique. Rehabilitation depends on social support, how the injury happened and a host of other variables. Age is not necessarily the leading factor that differentiates one patient’s experience following a spinal cord injury from another’s.

At Magee, we try to meet young adults where they are in terms of coping with their injury. We hold adolescent or young adult support groups. We’ve developed a young adult suite with tutoring, computer access, gaming, large-screen TVs and other comforts that provides a space where recovering young adults can spend their time. Specialty age-related counselors and coordinators are on staff to help adolescents return to school and work, or to pursue educational opportunities once back in the community or online.


Myth 3: Spinal cord injury rehabilitation ends once you leave the hospital.


When a person is admitted to inpatient rehabilitation, he or she is evaluated by a team of clinicians. Together, the person and team set goals and a plan to reach the goals. These goals stretch well beyond the initial inpatient hospitalization. We help patients and families create a therapy plan for what they can do now, with the movement they have, but we also help them to develop a long-term plan of care for when they leave the inpatient rehab environment. The end of inpatient therapy is not the end of spinal cord injury recovery! People can continue to participate in therapy at home or in outpatient depending on the circumstances.


Myth 4: Spinal cord injuries stay the same throughout an individual’s lifetime.


As an individual with a SCI ages, he or she will face new and different challenges or complications. In addition to the normal effects of aging that we all face, SCI-related complications may present themselves years after the injury itself. You may gain weight, increase or decrease your level of strength, or experience changes in your skin’s strength. Sometimes, these factors can be managed or minimized with foresight. But in other cases, internal developments may be out of your control. That’s why it’s essential to have a knowledgeable and dependable team to supervise your long-term health and rehabilitation.


Myth 5: Families can’t do much to support spinal cord injury rehabilitation.


Social support is a critical component. Our multidisciplinary team members are part of that support system. We encourage families to be actively involved in their loved one’s inpatient hospital stay as soon and as often as they can, as they will play a critical role in supporting the next phases of rehabilitation once their loved one is back in the community and out of the hospital.


Myth 6: Physical therapists can easily predict how each patient will progress.


I wish we had a crystal ball and could predict the future. We try to help patients understand what we see as their current potential and what we know might be possible based on the level of their injury. There is always room for hope. With spinal cord injuries, it’s never black and white. We tell patients, this is what we can see and anticipate right now. If those circumstances change, it’s time to reevaluate.


Myth 7: A positive attitude has little influence on how patients deal with rehabilitation.


A positive attitude makes a significant difference in helping someone to achieve the highest level of independence possible. This may sometimes mean a full recovery of physical function; other times it may mean using technology and equipment to lead an active and independent lifestyle. Mental toughness and motivation are keys to success in both of these scenarios.


Our myth buster is Amy Bratta, the spinal cord injury Therapy Manager at Magee Rehabilitation Hospital in Philadelphia.

An Inside Look At Spinal Cord Injury Physical Therapy

About 12,500 people will experience a spinal cord injury this year. How will physical therapy impact their lives? Amy Bratta, the spinal cord injury therapy manager at Magee Rehabilitation Hospital in Philadelphia, answers our questions about SCI rehabilitation.

Amy Bratta Magee spinal cord injury physical therapy sci rehabilitation philly philadelphia


What sort of social support is provided to individuals who pursue inpatient physical therapy?

Here at Magee Rehabilitation, we collaborate on a multidisciplinary team that includes clinical neuropsychologists and an extensive peer support program for patients and families with individual and group options.


What technologies are available to promote independence for people with spinal cord injuries?

We try to give people opportunities to try equipment that will enable them to be more independent in their homes and communities. We have an amazing “Smartroom” that shows some of this new technology. Identifying the best technology tools to promote independence depends on understanding an individual’s mobility level and the funding that he or she has access to in order to continue using the tools at home.

HelpHOPELive: We’ll be taking a closer look at some of these cutting-edge modalities in a future Blog post. Stay tuned!


Which spinal cord injury support initiatives are you most excited about?

We’ve started a pilot SCI “medical home” program for injured individuals. There are similar models for people with chronic diseases, but very few available for people with spinal cord injuries. It’s an attempt to follow people closely after they leave inpatient rehabilitation and transition back to the community. The medical home multidisciplinary team provides proactive support and services to minimize medical complications and promote optimal health after a spinal cord injury.

Spinal cord injury therapy is a fast-moving space in which professionals try to seek answers and tailor technological developments to individual needs. Stem cell research and other medical developments continue to give people hope that in the future we will have more answers than we have now.

Amy Bratta treadmill physical therapy sci spinal cord injury PT Magee Rehabilitation Philly Philadelphia


What is essential to success as a spinal cord injury physical therapist?

Collaboration is essential. We work closely on a multidisciplinary team to provide well-informed and complete support. We typically look for new team members who are self-motivated, willing to learn and invested in teamwork. There is a physical component to our work, but it is also very emotional. Working with individuals and their families after a traumatic injury can be an intense and rewarding experience.


What have you learned from the injured individuals you’ve worked with?

With each person that I’ve worked with, what stands out to me is the strength of the human spirit. A person going through trauma can and will deal with the outcome and move forward to the best of his or her ability. That applies to social and emotional transitioning as well as physical rehabilitation. Sometimes I truly feel that I’ve learned more from some of our patients than they have learned from me!

Ekso bionic exoskeleton sci spinal cord injury Amy Bratta Magee Rehabilitation physical therapy Philadelphia


When Penn State quarterback Adam Taliaferro was injured in 2000, he had surgery, followed by 7 months of in- and outpatient services at Magee. What was it like working with Adam?

Adam is an extraordinary young man who came in with very little active movement initially. He was always very present, highly motivated, mentally tough and positive, and he carried that attitude not only into his own care and therapy but into the lives of others who were struggling with similar injuries. That’s the beauty of being here: people going through similar experiences can be there for each other. Adam is an exceptional example of giving back while pursuing personal rehabilitation.


What’s your favorite part of your job?

I like that my job is very dynamic. Every day is a little bit different. You have to adapt, even if you think you have a plan! I meet some incredible people. You walk in the door and see what other people are dealing with, and suddenly your problems or issues seem completely insignificant by comparison.

My work inspires me and gives me perspective. I appreciate the opportunity to serve people who have been through trauma and injury. Every day when I come to work, I feel like I still have a role in helping people to receive the best care they possibly can. It can be a very emotional job – but for us, working in this field means entering a very special place where we can make a significant and lasting impact on an individual’s life.

Amy Bratta spinal cord injury sci physical therapy rehabilitation Magee Philadelphia


We appreciate your time, Amy! Visit the Magee Rehabilitation Hospital website to learn more about Amy Bratta’s work.

 

Air Force Airman and Firefighter Refuses to Be Extinguished By Spinal Cord Injury

In July of 2014, a simple trip to the beach changed Air Force airman John Michael LeMoine’s life forever.

John LeMoine HelpHOPELive Air Force

John LeMoine in his Air Force uniform.

John was enrolled in a firefighting technical school in San Angelo, Texas. On a rare day off, John decided to head down to the lakefront with his friends to enjoy the early summer sun. While he and his friends were goofing around, John had to leap into the air to avoid a child playing on the shore. John managed to avoid harming the child, but as he fell, John landed on his neck and shattered his cervical spine (C-6).

John entered a state of cardiac arrest. Thankfully surrounded by his firefighting co-trainees, he was quickly transported to a trauma facility, where he remained in critical condition. Described as a fighter by his supporters, after spending three days in the ICU, LeMoine slowly recuperated from his near-death cardiac emergency. Within six weeks, John had committed himself fully to recovery from his spinal cord injury.

John LeMoine HelpHOPELive ICU

John spent three days in the ICU following his injury.

A C-6 spinal cord injury can cause patients to experience bladder dysfunction, uncontrollable blood pressure and heart rate, body temperature spikes, muscle atrophy, bodily pains and osteoporosis. The recovery process requires hospitalization, rehabilitation and ongoing medical costs that can total over $2 million over the course of a lifetime.

It took six weeks of intensive therapy before John managed to wiggle his left big toe.

At Shepherd Center, an Atlanta rehabilitation hospital, and Project Walk Atlanta, an exercise-based recovery facility, John began to make steady progress. Using the Lokomat, a robotic machine to stimulate movement in the lower extremities, John finally began to wiggle his toes. According to his rehabilitation team, the Lokomat offered John the best possible chance to regain the ability to walk – but the cost of using the machine would become prohibitive once John’s insurance allotment ran dry.

John LeMoine HelpHOPELive Lokomat

John needed extensive rehabilitation to regain mobility.

Thanks to donations to HelpHOPELive from friends and supporters, on March 4, Project Walk Atlanta reported that John was able to stand completely independently. Next to a picture of a smiling John, the Project Walk team noted, “He has put in a lot of hard work to get where he is now, and we are excited to see where he is going to go from here.”

HelpHOPELive John LeMoine stands

John stands on his own for the first time since his accident.

John is looking ahead to a life of continued selflessness. As supporters note on John’s HelpHOPELive Campaign Page, “His wish is to remain in the Air Force and continue to be [an] airman, and if at all possible, to somehow go toward the fire again.” John’s accident could not eclipse his desire to serve. “If anyone knows the heart of a fireman, you know that they are the most selfless people in our lives,” his supporters confirm.

John receives continual support and encouragement from his “Air Force family,” his friends and “even strangers who have given us support and strength from the beginning,” notes his Campaign Page.

HelpHOPELive John LeMoine nephew

John pursues recovery with support from nephew Jake…

John LeMoine HelpHOPELive niece

…and niece Lily.

John’s supporters have thanked donors for “the outpouring of love and support” they have received so far. “Every one of you have helped us meet our goal for John’s continued therapy,” they note. “We have all learned so much about ourselves and the goodness of people…These donations will allow him to strengthen his ability to walk again and meet those financial challenges.”

John LeMoine HelpHOPELive family

John’s family and supporters thank the community.

John is looking to friends, Air Force peers and family for continued support as he makes major strides in his recovery.

You can give John your support by reaching out on Facebook or on Twitter and following his recovery at helphopelive.org.

If you or someone you know is struggling with the medical costs associated with a spinal cord injury, reach out to us at helphopelive.org. Our team can help you to fundraise online and in your local community to offset your uninsured medical expenses.