Tag Archives: Spinal Cord Injury

Ask a Professional: Covering Mobility Costs in a Broken System

Time and time again, Help Hope Live clients tell us how difficult it can be to secure life-changing mobility equipment after a catastrophic injury. To get a professional perspective, we spoke to Jeffrey M. Brandt, the founder and CEO of Ability Prosthetics & Orthotics, Inc., and Julie McCulley, a resident prosthetist orthotist. Ability P&O provides artificial limbs and braces to help patients “move freely and actively.”

From left: Marlies Cabell, Jeffrey Brandt, Robin Burton, Taffy Bowman, and Julie McCulley


How can mobility impact your life after an injury or debilitating illness?


Mobility can be key to feeling independent again after injury or illness

Julie: Many times, individuals who have undergone an injury or amputation fear they may be unable to perform the basic movements that will allow them to move independently. A well-designed prosthesis can potentially allow a person to regain FULL independence and, for some people, even participate in activities they have never tried before!

Jeffrey: Devices are important, but that’s just 30% of our jobs. The rest is psychosocial: lending an ear, giving suggestions, and providing support. We offer adaptive sports events, community events, and educational opportunities in addition to physical mobility support. These elements can help individuals to re-connect with their community and begin building their lives back up again.

We aren’t social workers, but being called social workers is a compliment to our team. It’s vital for us to promote community connections and psychological satisfaction.


What’s the best way to support a friend living with an injury?


Show support for someone with an injury by being an informed listener

Jeffrey: First of all, listen. Prioritize communication and getting to know that individual person’s story and what they care about. Do your own research so you can help to connect the individual with compassionate and competent resource providers in his or her community.

Julie: It is important for family members and friends to attend support groups so that they can talk to others who are sharing a similar experience. Getting involved in activities and organizations like the Challenged Athletes Foundation, Adaptive Adventures, or Athletes with Disabilities will allow you to develop a community of peers with valuable insights.


What is a common misconception about life after injury that you have encountered?


Your health needs and abilities may change over time

Jeffrey: Your lifetime needs will change after an injury. Just because someone feels great today doesn’t mean that will still be the case in two years or five years. Sometimes an individual who is doing great with rehabilitation could still need more equipment or additional resources to truly make progress.


Can financial concerns be a barrier to mobility?


Finances can be a barrier to life-enhancing technology

Julie: A prosthetic leg can cost anywhere from $7,000 to $50,000. This cost depends on the level of amputation and the components necessary to allow a person to reach the activity level they are striving to reach.

Jeffrey: From a patient perspective, our insurance system is broken. Insurance companies view many mainstream mobility requirements as luxuries and consequently won’t cover the cost. That may extend to physical therapy at any level, life-changing medical supplies, replacement supplies, or equipment that must be altered as an individual ages or makes mobility progress.

Some insurance plans will only pay for one prosthetic limb within a patient’s lifetime. If you are someone who relies on a prosthetic limb, you may find that you need a new limb every 6 months based on how quickly you progress with rehab or how your body grows and changes naturally over time. Under your plan, the entire cost of those new limbs would be out-of-pocket for you and your family, possibly for a lifetime.

You may need a new limb every 6 months, which could be an out-of-pocket cost

The irony is evident in this example. Say someone with medical insurance needs a $12,000 prosthetic leg. Research has shown that if insurance companies deny coverage for that $12,000 leg, the patient will end up costing the industry $100,000 or more, because that individual is no longer able to work and therefore contribute to the overall economy.

Insurance companies are in the business of not paying out benefits whenever possible. We combat this reality by opening lines of communications to other patient resources, including organizations like Help Hope Live than can help to relieve the financial burden of out-of-pocket mobility costs.


Jeffrey is the founder and CEO of Ability Prosthetics & Orthotics, Inc. Julie, MPO, MS, ATC/L, is a resident prosthetist/orthotist at Ability Prosthetics & Orthotics in Exton, PA.

May is National Mobility Awareness Month!

Why #MobilityMatters

When you hear the word mobility, what comes to mind?

If you live with a catastrophic injury or illness that impedes your ability to move freely, you already know that mobility is more than just a concept. It’s a word that is closely tied to some of life’s biggest milestones and pursuits.

Chris Arbini Help Hope Live

Living with an injury or illness, mobility can change your life

Each May, we celebrate why #MobilityMatters to thousands of Help Hope Live patients, their families, caregivers, and medical professionals.

When we talk about mobility, we’re referring to far more than walking, reaching, and running. Mobility is a broad term for activities, therapies, and technologies that can add meaning and independence to our lives after injury or illness . Here are some examples.


Mobility is…


wheelchairs and power chairs that are must-have sources of mobility support.

physical therapy or exercise-based rehabilitation that increases or helps you to retain your balance, range of motion, and strength.

home renovations that make it possible to live and move comfortably in your own house.

accessible transportation that puts careers, college, social events, and medical travel within reach.

medications and ongoing medical care that safeguard or increase your motion.


Why #MobilityMatters to Me


Paul Mustol Help Hope Live

Paul participates in physical therapy

“Spring is here and we are taking one day at a time with Paul. The steroids have really helped him maintain his abilities, for which we are thankful. Physical therapy sessions in a pool provide good, low-impact exercise for his muscles and lungs.

Paul’s neurologist is recommending a motorized wheelchair with good back support that would be custom-fitted for Paul. A scooter would allow him to be more flexible and it would be easier to transport. We will take time to consider the choices.”

Paul Mustol, South-Central Catastrophic Illness Fund

Living with the genetic disorder Duchenne muscular dystrophy


Molei Wright Help Hope Live

Molei can regain mobility through therapy

“Molei has been through a lot and survived it all – a near fatal accident, a three-month coma, five months in the hospital, and uncountable setbacks along the way. Her insurance stopped covering her care about four months ago. Now, she is unable to participate in speech, occupational and physical therapy. She can learn to walk, speak, and eat well again, but only with the help of professional therapists.”

Molei Wright, Midwest/West Traumatic Brain Injury Fund

Traumatic brain injury in January 2016


Chris Arbini Help Hope Live

Chris is dedicated to physical therapy and regular exercise

“Chris has been able to go to Craig Rehab for some physical therapy, as well as workouts in their gym. The exercise has been great not only for his body, but for his morale as well.

Chris started a three-month program at Craig Rehab called NeuroRecovery Network (or NRN) which is a program developed by the Christopher Reeve Foundation. In the actual program, they connect him to electrical stimulation while training him to perform various functions. While I was there, they were working on retraining his hands to grasp.

Something that he plans on offsetting through fundraising is an FES bike, which sends electrical currents to the legs as it spins to promote circulation and provide nerve stimulation. He has been using it for 45 minutes to an hour each day, but since his access to outpatient care will ultimately be limited by insurance, having an FES bike at home will help him tremendously. This bike is close to $20,000 out-of-pocket.”

Chris Arbini, Midwest/West Spinal Cord Injury Fund

Spinal cord injury in July 2016


Scarlett Chandler Help Hope Live

Greater mobility means more independence for Scarlett

A van would make everyday tasks much easier. My mom had surgery before I started fundraising, and she was on her back for weeks and unable to drive. It would have made such a difference if I could hop in a van and pick up groceries and prescriptions. I want to be able to provide that for my family.

A van would also help me to attend college classes to I can secure employment. I fundraise to offset the cost of the van as well as specialized adaptive driving classes.”

Scarlett Chandler, Southeast Catastrophic Illness Fund

Living with the spinal cord defect spina bifida


Even With Insurance, Mobility Isn’t Free


Mobility-related expenses can become financially devastating to families. In fact:

  • Major home modifications for mobility can easily exceed $100,000 out-of-pocket.
  • An adapted vehicle could cost you over $50,000.
  • Physical therapy may not be covered by insurance at all, leaving you with an out-of-pocket price tag of $20,000 or more annually.

Tell Us Why #MobilityMatters!


We feature your stories and insights on our Blog every year during Mobility Awareness Month. Send your #MobilityMatters stories, pics, or videos to us at [email protected] and you could be featured in an upcoming post. You can take part as a Help Hope Live patient, family member, caregiver, spouse, friend, or medical professional.

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.”

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.