Category Archives: Catastrophic Injury

Living with Quadriplegia, “Anything is Possible”

In August 2014, Elizabeth “EB” Forst, a doctor of physical therapy, was working as a travel orthopedic physical therapist when she sustained a C4-5 spinal cord injury in a diving accident, leaving her completely paralyzed from the neck down with little to no movement or sensation.

Prior to her injury, she was independent, active, and adventurous. She had competed in six triathlons, traveled extensively all over the world, was an active and advanced scuba diver, loved live music, practiced daily yoga and meditation, and even attended and worked at the Burning Man festival for 13 years. She has been fundraising with Help Hope Live since September 2014. This is her life now.

Elizabeth EB Forst Help Hope Live

EB is still “independent, active, and adventurous” after injury


How does your life look different today than it did right after your injury? 


Initially, because of my heightened medical state and complete paralysis, independent living was absent in my life. I was at the mercy of local health care agencies, where the caregivers had little or no experience with individuals recovering from a spinal cord injury. The care was downright poor. I had to identify and personally train local caregivers to support my health needs a.m. and p.m. This is the first mountain to climb after injury–educating and directing others on health care needs is exhausting as you onboard new team members, which even today happens often as my team shifts.

With my current team in place, I have greater control over my life. I am so grateful for this group of women who take such great care of me every day. Along with my ever-supportive family, they are my lifelines.

Elizabeth EB Forst Help Hope Live

Living independently was out-of-reach when EB was first injured

Finances have changed. Initially, with no work income and my dependence on Colorado Medicaid, I was paying exorbitant out-of-pocket costs for my certified nursing assistants (CNAs). Fundraisers with Help Hope Live helped my family foot the bill for many of my out-of-pocket costs that were causing me to feel like I was a financial burden. Luckily, Colorado is one of only a handful of states in the country that supports Consumer-Directed Attendant Support Services (CDASS), which, with approval from the state of Colorado, allows individuals like me to receive financial assistance from the state to pay my support team as I see fit, including CNAs, family members, and personal assistants. I break free of utilizing health care agencies and pay my own personally-trained staff.

My independence has improved with the assistance of my CNAs, personal assistants, and new technology within the home. I am an active advocate for the spinal cord injury community both nationally and locally. I travel often and take advantage of the beautiful outdoors here in Colorado as well as the live music scene. Red Rocks amphitheater is a favorite in the summer.

Elizabeth EB Forst Help Hope Live

EB loves catching shows at the Red Rocks


What are some of your hobbies today?


My biggest pre-injury hobby was travel and so being able to travel and find adventure after injury was paramount. With a lot of training and maybe a little bravery, I’m happy to say that I have flown over 15 times since my injury to places like New York, San Francisco, Los Angeles, and South Carolina.

I was an advanced scuba diver pre-injury, and I completed my first post-injury scuba dive last year in Mexico with the assistance of the therapeutic recreation department at Craig Hospital. As a team, we tackled 10 dives in just five days, with the deepest dive at 95 feet—quite a feat for a high-level quadriplegic! My dive buddies supporting me underwater were not able to learn what I needed via signaling from my body, so instead, we communicated intuitively by looking into each other’s eyes.

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While not all of my physical hobbies are still within reach today, I try to maintain a connection on a physical and spiritual level with the things that are attainable.


You were extremely active before your injury. How do you stay active today?


I go to the Craig Hospital PEAK Center every week and use the Lokomat and standing frame for extended lengths of time. I stretch with a physical therapist and use an FES bike to stimulate circulation and mobility; my CNAs do range-of-motion exercises with me every single morning and night. I receive acupuncture twice weekly and massage once weekly to stimulate my spinal cord and encourage return of mobility and sensation. The road is long but I try to stay focused.

Elizabeth EB Forst Help Hope Live

Therapy is a regular part of EB’s life after injury

I understand the extreme importance of staying active because of my background in physical therapy; it’s crucial to prevent healthcare issues that plague those living with quadriplegia, such as blood clots and pressure sores. Recently, I have been getting some return in my right arm, enough so that I can transition from sip and puff wheelchair technology to hand driving. This has been a huge accomplishment directly correlated to continual rehab efforts, even three years out from injury.


Do you think most people with spinal cord injuries have adequate access to health care and adaptive mobility necessities?


Absolutely not, and it’s a big problem. Health care access often depends first and foremost on proximity to a medical or rehab center that understands and is equipped to support individuals with a spinal cord injury. The unfortunate reality is there is a lack of such medical facilities–for example, San Francisco, a major metropolitan city, does not have a spinal cord injury center in the entire city. I am very lucky to live near Craig Hospital, which is a top-of-the-line SCI resource center.

Each spinal cord injury is a snowflake – different from the next – so it requires a tremendous amount of education and advocacy during medical visits to ensure medical professionals can support basic health care needs.

Elizabeth EB Forst Help Hope Live

“Every spinal cord injury is a snowflake – different from the next.”

Adaptive mobility can be a real issue as well. I experience these problems frequently when I travel, as basic transportation like taxis, rental cars, Uber, and Lyft are not readily equipped for individuals in power wheelchairs. Case in point: I was stranded in my hotel in downtown San Francisco on a recent trip because I could not locate a single accessible car. I missed dinner and plans that I had scheduled in the city because of this void of mobility access.


Is mobility support for people with injuries improving? Any examples?


I feel like there are no limits to what someone with quadriplegia can do today, especially with exciting improvements in technology. Craig Hospital’s technology department has helped me create an independent household – I’m able to electronically enter/exit my apartment without assistance, control my TVs/remote controls using sip and puff technology on my wheelchair, and use my computer with a specialized mouth-driven stick. Amazon’s Alexa speaker tower helps me control my lights, thermostat, phone calls, and text messages–crucial if I ever needed to contact 9-1-1 independently.

Elizabeth EB Forst Help Hope Live

Family support helped EB build an independent life over time


Can mobility costs become a financial burden after a spinal cord injury?


According to the Christopher & Dana Reeve Foundation, the first-year cost of injury-related expenses can top $1 million. That includes lifelong expenses like durable medical equipment, wheelchairs, room lifts, specialized beds, prescription medications, caregiving costs, plus the astounding cost of physical therapy that many insurance companies will not reimburse. For example, I pay $79/hour out-of-pocket at Craig’s PEAK Center twice weekly, $60/hour for acupuncture once weekly, and $100/hour for specialized physical therapy for my shoulder if I have anything left over. Many of these therapies are crucial to improved rehabilitation and basic overall health.

Traveling requires purchasing a specialized travel lift and budgeting for higher-end accessible apartments away from home or special hotel rooms. For someone with a spinal cord injury who can’t work, you have to ask: where is all this money supposed to come from?

I have three Help Hope Live fundraisers completed, but fundraisers truly only scratch the surface when you look at a long life of such requirements. Recurring donations to Help Hope Live are a really helpful source of support between events.


What are some of the biggest misconceptions about life after injury?


There is a persistent misconception that all people living with an injury or wheelchair have cognitive impairment. Friends seem shocked that I am still just who I was before my injury – same voice, same fervor for life. They say, “You still sound like yourself,” with surprise. And I just say, “Obviously!”

Elizabeth EB Forst Help Hope Live

“I’m actively participating in life to the nth degree after injury.”

Another big misconception is that you stop being able to actively participate in life after a spinal cord injury. My mantra has always been that anything is possible, and clearly, I’m actively participating in life to the nth degree after my injury. My friends say to me now, “You’re doing more after your spinal cord injury than I have ever done!”


What are you looking forward to in the immediate future?


I get excited about the light of the future, including adaptive technology and research advances to help find a cure for spinal cord injury. I look forward to improving advocacy efforts nationally as well as here in Colorado, to help augment the realization that the disability community is highly capable of working and being an important asset to each of their communities. I look forward to becoming an ambassador for the Christopher & Dana Reeve Foundation on a national level and the Chanda Plan Foundation on a grassroots level.

I am often told that I am an inspiration to others in the spinal cord injury community. Although it is meant as a compliment, it is not my intention to be an inspiration. I am just living my life, the same way it was before my injury, not allowing my paralysis to define me.

Elizabeth EB Forst Help Hope Live

EB is a proud ambassador for multiple spinal cord injury support platforms


Elizabeth EB Forst fundraises for the Midwest/West Spinal Cord Injury Fund. Click or tap to follow her Blog.

Diving Deep: Learning to Stand, Snorkel and Reclaim a Sense of Self

Theo St. Francis has been exploring the world of body-connection since his 2013 C6 spinal cord injury at the start of his Mechanical Engineering studies at MIT. Having been opened to a whole new way of being through his practice of Pilates, he is working to make mindful movement a standard in neuro-recovery.

He has been fundraising with Help Hope Live for intensive physical therapy and cutting-edge rehabilitation since June 2014.


What would it feel like to be able to just jump – and start flying? Well, I don’t know, and the birds won’t say, but I’ll bet the experience would be indescribable, and ‘indescribable’ is something I know.

Since my body has been partially paralyzed for almost three years, it is understandable that I’ve forgotten what some things feel like. That’s how our plastic, use-it-or-lose-it brains work: the subconscious patterns of walking and standing, of dancing without thinking, don’t get reinforced when the muscular connection isn’t present.

This is part of the overwhelming feeling of loss that accompanies a paralyzing injury to the spinal cord (SCI) because, in some ways, one’s sense-of-self fades with the loss of those patterns. When the physical manner by which you relate to the world is changed, the emotional nature of that relationship is changed as well.

Theo St. Francis Help Hope Live diving

“One’s sense-of-self fades” with the loss of familiar physical patterns


A flash…


One day in May, I noticed something strangely familiar during my regular 3-hour neuro-Pilates workout. We prepared to use a trapeze table, or trap table, a piece of Pilates equipment with a wooden bar hanging by springs from a frame. For some time my trainer and I had been stumped – I had developed feeling in my hip muscles while kneeling, yet when on my feet, my system turned off.

trapeze table Pilates

An example of a Pilates trapeze table

On that afternoon, we incrementally raised my knees on foam wedges until my feet were on the floor; with my hands on table-uprights, the vertical bars at each end of the trap table, and an arc blocking my knees, I lowered myself into a squat and, for the first time ever, pressed back up to standing!

“Wow, so this is what it feels like to connect to my legs!” was my first thought, and after the third unsupported squat, I felt a visceral excitement and had a fleeting image of letting go of the trap table, turning toward the door, and just walking outside. It was as if my body just remembered its own capability. Can you imagine? It was glorious. Indescribable!


Progress has been from many directions


Since my injury in Boston Harbor in August 2013, I have received care from experts in hospitals, rehab centers, SCI CrossFit gyms, Eastern medicine enclaves, and Pilates studios. I’ve learned from a variety of therapists with different but overlapping skills and set up equipment in our home to extend workouts throughout the day and evening. I feel very fortunate to have found the talented members that comprise my rehabilitation team.

Throughout this extensive process, the unflagging assistance of my family members has been invaluable. Their efforts– from the early days in the hospital to working with the medical staff and learning the techniques that would help me in daily activities to seamlessly managing logistics until I could do so myself–have been essential, both in the acts themselves and in the time and space they’ve created for me to pursue my therapies with rigor.

Also significant in my recovery, has been working with the Neuro-Kinetic Pilates specialists on Maui. In my most recent sessions there this June, I was able to find my own lateral hip strength in a stagger-stand position. I have been working to achieve this stability since I first muscularly connected my torso 18 months ago. It is immensely satisfying to finally achieve this result.

Theo St. Francis Help Hope Live rehab

“It is immensely satisfying” to regain physical ability at any level after injury

While all of this bodily improvement was happening, something even more significant occurred between my sessions: independence…in two ways.

For the first time really ever, this 21-year-old lived completely by himself. In truth, it was for less than a week – friends and family visited me on the island at other times – but, even so, after all I was told by doctors about the purported permanence of my paralysis, to be able to thrive on my own was a turning point in my recovery.

I am quite aware that this independence has only been achievable through the incredible support of so many over the last few years, especially all of those who have helped me and my parents with fundraising and driving to therapy appointments. My family is sincerely grateful for the support of so many people through Help Hope Live that make it possible for me to pursue the most effective recovery treatments. This sense of wonder for the gifts of support is also indescribable.


Diving deep


The second form of independence was very different. The day I fractured my C6 vertebra was less than a week before my first practice on MIT’s Varsity Swim Team, to which I’d been recruited as a backstroker. Even with all my progress since, I still require a hip-float to stay above water. That’s fine; except when I was in Maui swimming above scores of fish, coral, and turtles along the reefs 10 feet below. There was no way I was going to forgo some of the world’s premier reef-level snorkeling by being bound to the surface. Confident in how my improved core strength enabled me to control my breathing, I unclipped the float, handed it to my friend, and madly used my arms to fight the saltwater’s buoyancy. After some practice, I became comfortable descending over 20 feet and, on my last day on the island, I swam floatless for a full 40 minutes.

To me, going floatless is about far more than being eye-to-eye with Reef Triggerfish. It’s about stripping away the support I think I need to discover my true abilities, and in so doing, rediscovering that sense of self. It’s about diving deep into a fear, a perceived limitation, and returning to the surface with new appreciation for what is possible.

Through these moments of ecstatic, indescribable joy I can happily see that this truly may be the beginning of the final stage of my overcoming.

Theo St. Francis Help Hope Live smile

Theo pursues and relishes “moments of ecstatic, indescribable joy”


Last fall, Theo St. Francis presented his first workshop and co-wrote a textbook on Pilates for SCI with his trainer, Stephanie Behrendt, and they plan to expand the curriculum (zebrafishneuro.com for more). Theo has also found his home regimen to be vital in giving him space to explore, so he is developing an at-home protocol for individuals who have endured a spinal injury to understand their bodies in new ways. He absolutely intends to return to MIT when he feels his body is ready. Connect with him on his website, Facebook (fb.com/THEOvercoming1 or personal), and Instagram.

Voices of Hope: Someone Strong to Lead the Way

On her blog Struggling with Serendipity, Cindy Kolbe documents the journey she and her daughter, Beth, took after Beth sustained a spinal cord injury in May 2000 at age 14.


I drove back from my son’s college concert near midnight. Exhausted, I glanced at my 14-year-old daughter, Beth, asleep in the passenger seat. We were only 10 minutes from home. I thought I could make it without falling asleep. Then I heard a road sign flatten on concrete. As the car flipped three times across a bare Ohio field, we left behind an ordinary life.

I escaped with cuts, bruises and blood-matted hair. Beth was another story. The car was cut open to rush her to a helicopter that would take her to the nearest hospital. A doctor in Toledo told my husband, John, that she was paralyzed. When he broke the news to Beth, she paused only a moment before simply responding, “Let’s talk about what I can do.”


Later, when I arrived, Beth lay flat in a maze of tubes and wires, her pretty face swollen, her neck in a brace. She greeted me with a small smile. Her usual upbeat attitude was muted but present–I should have felt gratitude for that, but I didn’t. In disbelief, I stared at the girl in the bed. How could she smile?

When Beth slept, a surgeon guided me to a chair. He was kind, but his words were devastating. The bones in her neck were shattered. After surgery, he told me that her spinal cord was severed at the C6-7 vertebrae. With all four of her limbs damaged, she was now a quadriplegic who would never walk.

The loss of hand function seemed especially cruel. Her fingers didn’t work and her muscles began to shrink (atrophy). Among many health risks, pneumonia stood out as a leading cause of death for quads—along with suicide.


With one mistake, I had hurt everyone I loved.

Whenever I closed my eyes, I saw the upside-down car and Beth slumped over her stomach on the ceiling, her neck at a disturbing angle. The image haunted me. How easy it would be to lose myself under a blanket of guilt. Instead, I focused on small moments. Beth needed me. I turned her to the side, straightened a sheet, adjusted a pillow, and stayed in sight. Sleepy, in a morphine haze, she told me, “I like it when you hold my hand.” Crying quietly, I could not make myself grateful for the partial feeling in her hands.


When Beth was transferred to rehab, we shared a room with a girl in a crib with high sides who made sad sounds. She was alone with a brain injury. We met a man with a spinal cord injury who needed a ventilator to breathe; he moved only his head. A teenager with paraplegia refused to get out of bed and moved to a nursing home; he had full use of his hands and arms.

As physical therapy started, Beth lay face down on her stomach, unable to lift her shoulders off the mat. Her body was moved for her. She had no strength. The therapy session finished with the difficult process of transferring her into a wheelchair. Beth opened her arms and I leaned into a hug. Her bent hand softly patted my back. Suddenly, I was grateful for arms and wrists that move. For lungs that breathe. For her ability to feel me pat her back in return.


After a month in rehab, Beth tried to sit up on the mat. She started on her back and concentrated on throwing one arm over the other to roll onto one side. It took several tries. She pushed down with her hands to raise her upper body incrementally to a shaky sitting position for the first time. Her body tottered back and forth in a battle of balance–Bambi on ice. My instincts screamed to help her, support her. Instead, I turned away to wipe my eyes.

She leaned forward and planted a hand on each side to steady herself. She looked up and smiled when she heard me clapping with the therapists. Even Beth seemed surprised by, and glad for, every small thing.


My daughter insisted on starting her freshman year of high school on time about three months after her injury. On the first day, she pushed herself slowly down the halls in a manual wheelchair. Four years later, she was able to independently care for herself and live in a dorm or apartment with no assistance, a rare feat for quads.


Beth’s attitude propelled her forward with me in tow. Little by little, I chipped away at my millstone of guilt. Sometimes we need someone strong to lead the way.

Now, all I see is what she can do.


Cindy Kolbe is a lifelong disability advocate who lives in Summerville, South Carolina. She managed group homes in Ohio and ran a nonprofit in Massachusetts. Her daughter Beth graduated from Harvard and Stanford Law and is employed as a health policy lawyer in Washington, D.C. Access her Blog and reach her via email.

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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.

kirk_10

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.”

Why Injured Athlete Eric LeGrand Will “Never Accept a Satisfying Life”

Six years ago, Eric LeGrand sustained a spinal cord injury while playing football for Rutgers University. The standout defensive tackle became paralyzed from the neck down with a 0-5% chance of regaining neurological function according to his doctors.

In 2011, after months of intensive therapy at the renowned Kessler Institute for Rehabilitation, Eric was weaned off the ventilator, and recovered movement in his neck, shoulders and trunk. He signed an honorary NFL contract in May 2012 as an undrafted free agent. A sports broadcaster, today, Eric continues to strive for mobility and independence while fundraising to support advancements in spinal cord injury research and adaptive technology.

We asked the founder of Team LeGrand of the Christopher & Dana Reeve Foundation what keeps him moving forward.

Eric LeGrand

Eric, now a sports broadcaster, maintains an honorary NFL contract


Eric, how much did you know about spinal cord injuries before you were injured?


I knew nothing of spinal cord injuries before I was injured. During my recovery, there was so much new information about physical therapy, basic care, medications and insurance…it was extremely overwhelming for my mother and me. That was when we learned about the Christopher & Dana Reeve Foundation. They answered all our questions and helped us to navigate through this new part of our lives.


How did family and friends respond to your injury?


My family and friends were, naturally, concerned. Doctors said I would be using a ventilator to breathe for the rest of my life and that I may never eat solid foods again. My mother set the example that they would all be positive and supportive as I worked through the first few weeks of my recovery. She would kick out anyone who was being negative or doubtful about my progress.

I feel that her approach helped a lot for my own mindset. Before I knew it, I was breathing on my own and back to eating my favorite meals. I was receiving Tweets and texts from my Rugers family wishing me the best. Even my coach would come to the hospital so my mom could get some rest. People don’t always realize that the little things mean the most in those moments.

When I returned to the Rutgers Stadium in 2011 to lead the team out to field in their game against West Virginia, the fans cheered and shouted at my return, showing nothing but love and support. It was the moment I’ll never forget.


How did it feel when you began to regain some bodily sensation?


The first sensation I felt was in my shoulders. For the first time in a while, I was able to shift my neck. That little spark of movement has been fuel that keeps pushing me forward. If we can find technology to help individuals like me regain sensation and movement, it will be a game changer and it will have major health benefits for people living with a spinal cord injury.

Eric LeGrand

Eric believes treating paralysis through technology “will be a game changer”


What helps you to stay motivated today?


The staff at Kessler Institute in West Orange, NJ has kept me going, even on tough days. There will always be times when I don’t feel like doing my physical therapy, or just feel down, but they don’t let me make excuses. They keep me positive and inspired to continue improving, even if it is just a little bit.

I have learned to appreciate the small milestones, like gaining movement and sensation in my lower shoulders, which I can then use to move my arm a bit. A few years ago, I couldn’t do that. All these small victories lead to the bigger ones, and eventually, my end goal of walking again.

I’ve been fortunate to have people follow me from before my injury who continue to provide support up to this day. I don’t feel like a different person. Yes, things have changed and I’m not able to do certain things, but for the most part, I’m still me. While living with paralysis, I have been able to build success on a different path than I intended. I am happy with the results.

Eric LeGrand

Eric’s “different path” post-injury includes a busy career and advocacy work


When did you realize how expensive a spinal cord injury could be?


One of the moments that was an eye-opener for me was when it was time for me to leave the hospital. I realized I wouldn’t be able to move around my home with my wheelchair because of spacing issues. We had to completely rebuild the house from the ground up. You may not realize how inaccessible your home is until after an injury, and the cost is huge.

Insurance won’t pay for at least half of what you’d think they’d pay after a spinal cord injury. The little details are issues. Accessories on my chair, like cushions, the armrest and other vital pieces that I need to live comfortably, are not covered by insurance. It’s amazing how many hoops you have to jump through after injury to get support from insurance. We do it so we can have the best quality of life.

There are also other unexpected but related costs. Without my chair, I would be trapped in my room. I’m lost without my phone, and there are great apps and devices on my phone that lets me use it easily. Technology has helped me with my quality of life. I’m able to adjust my house to meet my needs so that I don’t have to rely on my family or caregivers to do everything for me.


What advice would you give to someone who recently sustained a spinal cord injury?


Attitude is half the battle. My attitude kept me focused from the moment I was injured through every physical therapy session. People often cite my positive outlook as something remarkable about me. I always remember that I am alive, healthy and have incredible people around me. Attitude is everything when an injury happens and you need to put things back in perspective again. Even with a spinal cord injury, I have a lot to be thankful for.

Never accept a “satisfying” life. It’s never appropriate to give up even if you are at what you consider the peak of your recovery. I have heard stories of people living with paralysis who have regained movement years after their injury.


What does the word hope mean to you?


Hope to me means having faith that something you want will happen, even when it’s not directly in front of you. Hope gives you a good feeling that can help you to look forward to your future.

Eric LeGrand

Eric, filming his Mission Possible web series, urges, “never accept a satisfying life.”


Eric LeGrand has raised over $750,000 through Team LeGrand to fund spinal cord research and therapies. He recently launched the Mission Possible web series, in which he travels the country to meet with everyday people living with a disability and learn the extraordinary ways they overcome adversity. If you know someone who needs help finding emotional and financial support after a spinal cord injury, contact HelpHOPELive at helphopelive.org today.

How I Cope with My Wife’s Stroke and My Son’s Spinal Cord Injury

At age 27, Sean McGonagle was attacked in a shocking act of violence at a bar just two days before Christmas. Shot in the leg and chest, Sean became paralyzed from the chest down. Two years after injury, Sean underwent surgery to remove an abscess on his spinal cord where the bullet had been lodged.

Just four days after his surgery, his mother, Kass, had a stroke that left her with limited mobility and communication skills. Sean and Kass stayed in the same hospital during recovery and pursued rehabilitation at Magee together.

Kass McGonagle Sean McGonagle HelpHOPELive spinal cord injury stroke boat Spirit Philadelphia

Kass and Sean stayed in the same hospital during their recovery.

Father and husband Dennis McGonagle helped to initiate fundraising campaigns with HelpHOPELive to support both Sean and Kass. Dennis explains how his family is living with the lifelong impact of spinal cord injury and stroke.


How is your relationship with your family? 


My relationship with my family is very strong. I retired early so I could be a caregiver for my wife and son, and I have three daughters and three grandchildren that I spend time with. It is very important to all of us to stay close and help each other.

Kass McGonagle Sean McGonagle HelpHOPELive

Dennis, center, retired so he could care for his wife, left, and son.


Why is fundraising important to you?  


Managing health is a minute-to-minute task. We have therapy three times a week, doctors’ appointments and daily care and companionship needs. As a quadriplegic, Sean suffers from a lot of pain and discomfort. Things will not get easier for him as time goes on; as a matter of fact, they will get progressively worse.

Kass McGonagle Sean McGonagle HelpHOPELive

Sean with Joanne from Magee Rehabilitation Hospital

He tries to keep a positive attitude and holds onto the thought that there may be some life-changing medical advancements in his future.

Kass McGonagle Sean McGonagle HelpHOPELive Magee Rehab physical therapy spinal cord injury

Therapy helps Sean cut down on “pain and discomfort” after injury.

For Sean, our last fundraiser was to help him purchase a new wheelchair. We have a long way to go, but the new chair will enable him to stand upright and increase his blood flow. In the long run, it will keep him from getting pressure sores and improve his overall health.

Sean McGonagle fundraising HelpHOPELive comedy hypnosis

Sean fundraises for a new wheelchair and other post-injury costs.

It has been almost three years since Kass’ stroke, and she is dealing with memory loss, speech problems and paralysis on her left side. She is reliant on a wheelchair for mobility support. Kass needs a stair lift to get up and down the staircase safely. We also need to make some modifications to her bathroom to make it safer and more accessible.

Kass McGonagle HelpHOPELive stroke

Kass fundraises with HelpHOPELive for home modifications, mobility needs and more.


How do you feel about fundraising with HelpHOPELive?


We have been in contact with the nonprofit since 2011. HelpHOPELive is a great nonprofit organization. From digital guidance and customized flyers to general understanding, HelpHOPELive has shown us the path to achieve our fundraising goals. We are also glad to have an avenue to allow our community to understand and support our fundraising goals and events.

Wheelchair van Sean McGonagle

“Picking up my new van! This never would have happened without your donations!”


Is it challenging to support a loved one as a caregiver while being a father?


Being a father and a caregiver is always a challenge, and in my case, I am helping to support both my wife and my son. They have similar needs and yet a lot of different individual needs as well. You can’t be in two places at one time, but somehow we have managed so far. Who better than a husband and father to take care of them? The best part about being a dad is the love of your children. A child is a gift and you get an opportunity to watch kids grow into young adults. My children are also my friends, which is very important to a healthy and honest family relationship.

Kass McGonagle Sean McGonagle HelpHOPELive spinal cord injury stroke boat Spirit Philadelphia

Dennis says his family “is more important than any material things.”

Remember that your family is more important than any material things. Remember to always look after and cherish your children. You never know when they will need you the most.


Learn more about Dennis, Kass and Sean at helphopelive.org. Do you know a family struggling to cover the out-of-pocket expenses associated with a catastrophic injury or illness? Learn how we can help with a tax-deductible fundraising campaign and one-on-one support.

My Health, Independence and Financial Challenges 5 Years After Injury

Danielle Watson became paralyzed from the waist down in June 2011. In May 2016, Danielle completed her master’s in occupational therapy.


People are shocked all the time that I drive and live independently. I don’t blame them, because I didn’t know what people with disabilities could do either, until my injury. I have managed (with help from others) to figure out how to live independently.

Danielle Watson HelpHOPELive

“I have managed to figure out how to live independently.”

I consider my wheelchair to be an extension of myself at this point. It really bothers me to hear the terms “confined to a wheelchair” or “wheelchair bound” because the wheelchair is an awesome machine that allows me to be independent. I also rely on my NuProdx shower bench and I now have one on the toilet, too, to prevent pressure sores. My car is also an important part of my independence. It has been adapted with hand controls.

I have had increasing complications with my health over the past 5 years. Unfortunately, spinal cord injury affects many of my bodily systems, so I must continue to adapt. The average person doesn’t realize that I am not just sitting. That is the easiest part. Spinal cord injury affects all body systems. I usually keep this hidden from people and try to portray that I have everything together. However, I constantly have to think about my bladder, my digestion, my bones, my joints, my body mechanics, avoiding pressure sores, my temperature, my water intake…the list goes on!

Danielle Watson HelpHOPELive

Danielle fell 250 feet. The injury “affects many of my bodily systems”

Therapy has had a huge impact on my life. I am so grateful to have had so many good health professionals after my injury. I already wanted to be a therapist before my accident, but my injury introduced me to occupational therapy, which I had never heard of before. My hope is that I can use my personal experience and empathy to help others after a life-altering injury.

I have faced significant financial challenges since the injury. By the time I get my license to practice OT, I will have been unemployed for almost 6 years. I have student loans from undergraduate schooling that I have been unable to pay off and they have been accumulating interest. I had to decide if I would be able to live my life on social security or minimum wage or take on the loans and the hope for a better life. I am trying to do the right thing and support myself financially.

Danielle Watson HelpHOPELive

“I am trying to do the right thing and support myself financially.”

HelpHOPELive has thankfully shielded me from many of the medical expenses that go along with this injury. I don’t know how I would survive without it. There are a lot of supplies and pieces of equipment that I need that Medicare doesn’t cover. Sometimes Medicare makes errors and I get stuck with huge medical bills. I have lived in five different places within the last 5 years and I have had to renovate them all to make them accessible. When I begin to work, I will lose Medicare and I will have private insurance, but I am thankful to HelpHOPELive for helping me cover deductibles, medications and procedures through fundraising.

The HelpHOPELive campaign in my honor has been extremely important because I don’t have to agonize over purchases or costs that are medically necessary or helpful in maintaining my independence, which really contributes to my mental health. I have so many other worries with my spinal cord injury that it is really helpful to have one less worry.

Danielle Watson HelpHOPELive

Fundraising helps Danielle to live independently.

I was introduced to adaptive sports 6 months after my injury. I skied as soon as I was medically able. Oregon Adaptive Sports has been crucial to my recovery–I received scholarships for the lessons I needed to learn to ski and they have been a family to me. I met most of my friends though OAS and I continue to be a participant and an advocate for the organization. HelpHOPELive helps with the expenses that are not covered by the scholarships I get.

Danielle Watson HelpHOPELive

Danielle participates in adaptive sports, triathlons and marathons.

I love to travel now just as much as I did before my injury. Having the right equipment really helps. I have a shower chair that comes apart and fits into a small square bag. That has made travel a lot easier, and I bring it with me everywhere. I want to travel the world but currently it is easier and more accessible for me to travel within the United States because of the Americans with Disabilities Act (ADA).

Danielle Watson HelpHOPELive

Travel is easier for Danielle with the right adaptive equipment.

I look forward to being self-sufficient again. I look forward to buying a home someday that I can renovate for my needs, and I look forward to getting into a routine that will allow me to finally get my finances under control.

Thankfully, I have a degree in philosophy, so I had a lot of time to think about big questions before my injury. I believe in the power of your thoughts and your words to manifest your life. I try my best to shed the thoughts that don’t serve me well and think positively. I have gotten better at this over time and I believe it is something you can practice until it becomes more natural. Having a disability can be alright if you have access to the right equipment and support, which is why HelpHOPELive is so necessary.

Danielle Watson HelpHOPELive

“Having a disability can be alright if you have access to the right equipment and support.”


Learn more about Danielle and make a contribution in her honor at helphopelive.org. Follow her blog for ongoing insights on life and possibilities after injury.