Tag Archives: wheelchair

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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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.

How “The Porkanizer” Overcame The Odds To Become A BBQ Legend

Sandy Fulton is not your average event planner. Under the affectionate nickname, “The Porkanizer,” Sandy organizes and grows events with passion and expertise from her lifetime of work in the hospitality industry.

Sandy Fulton Fire Up Hope

Sandy Fulton, center, is “The Porkanizer”

Sandy is a Kansas City Barbeque Society (KCBS) Contest Organizer and a member of the KCBS Board of Directors. She helps organize KSBC-sanctioned competitions including Philly’s Inaugural Fire Up Hope BBQ Festival, an event on September 10- 11, 2016 at the Devon Horse Show Grounds to benefit HelpHOPELive. We picked her brain about her career beginnings, the accident that changed her life and how to plan a successful BBQ fundraiser.

Fire Up Hope BBQ

Sandy is helping to organize the Fire Up Hope BBQ Festival to benefit HelpHOPELive


Sandy, how did you get your start in the hospitality industry?


More than 25 years ago I was a restaurant owner in Ocean City, Maryland, and after that I worked at the Ocean City Convention Center. I really fell in love with promoting and booking conventions and events at the Center. From there, I spent 15 years in the hotel industry in sales working in promotion and training sales departments for hotels all over the country. I was asked to be the executive director of Tourism for Wicomico County, Maryland.

Sandy Fulton Fire Up Hope

“This job was my destiny,” said Sandy

That job was my destiny. I began to use all of my experience in sales, promotions, food and beverage, and marketing to promote our county. I contacted KCBS and held my first BBQ festival in Salisbury, Maryland. in 2002. Within 3 years, the event grew to be the largest of its kind this side of the Mississippi. After I retired in 2012, I was asked to promote another BBQ festival. That grew into managing seven events per year.


You had to retire early due to medical challenges. Was that a difficult time for you?


Yes, probably the most difficult time in my life. I fell and broke my hip and arm. It was assumed that in four to six weeks I could go back to work. After a few weeks, the pain in my hip and leg became worse: my hip was out of socket and my pelvis was broken, seemingly during the initial operation. Four more operations to correct the areas had failed. As soon as I stood, my hip fell out and I would be standing on my ankle.

I was finally put in an ambulance by my doctor and taken into a six-hour operation. I was told I probably would never walk again. I was so distraught.

Hospital

Sandy was told by her doctor she would probably never walk again

I spent six weeks in the hospital and six weeks in rehab. I began physical therapy at home and in a nearby facility. I was in a wheelchair, and I was determined not to stay in a wheelchair for the rest of my life. It was obvious by then that I would not be able to return to work. My job was a very active job and with the pain and limitations, I had no choice but to retire. I cried for days. I loved my job so much. I felt that the job was my destiny, and that I had prepared all my life for that job.

I was given a wonderful retirement party with county and state officials in attendance and many awards and recognitions. That made it hurt even more. I was devastated. I decided to concentrate on walking again. I had to. It took me three years, but I was able to walk with a cane. I am grateful to my family, friends, therapy and, of course, God for believing in me.


Can you tell us a little about the KCBS? Why is its approval important?


KCBS is an organization that promotes the love of BBQ. It is the largest organization of its kind, and it is not only based in the United States. It has become a worldwide organization with contests in Europe, Puerto Rico and other regions.

Sandy Fulton Fire Up Hope

KCBS promotes a passion for BBQ through events and engagement

The organization has very strict rules and the judging is done by people who have taken a KCBS Judges class. They judge based on appearance, taste and tenderness.


Why did you decide to specialize in KCBS-sanctioned events?


I made the decision based on my love of creating an event, and the BBQ people that I met and the loyalty they showed me. It is also such a great way to introduce BBQ to new areas.

BBQ

Event planning provides an opportunity “to introduce BBQ to new areas”

KCBS really supports nonprofits. 90% of my events are for nonprofits. The competitors love that element and so do those attending. They get to have fun and help a charity at the same time. When holding a fundraiser, advertising that it is for a charitable cause is very important.


How did your first 2002 KCBS-sanctioned event evolve over time?


Initially, we had three months to put it together and 17 competitors. Each year, we added something new to the event to keep people interested. We eventually had to put a limit on the numbers of competitors, food vendors and craft vendors because we were running out of space! We advertised a great deal and that helped. People started planning for the event months in advance. We added a children’s section and that really helped the event, too.

Sandy Fulton Fire Up Hope

Sandy loves to watch her events grow over time


What is your favorite part of your job? Your least favorite?


My favorite part is working with the competitors. They have stood by me and encouraged me when I had to retire. When I held my first festival, I walked into their meeting and they gave me a standing ovation. That’s when I knew that everything was going to be alright.

My least favorite part of my job is after the competition and awards (ceremony) when they all leave me!

Sandy Fulton Fire Up Hope

Sandy’s favorite part of event planning is “working with the competitors”


What does the word HOPE mean to you?


The word hope had a different meaning to me before my accident. We all take for granted being able to walk across a room, drive and do day-to-day activities. So I used to use hope in a simple and kind way, “Hope you have a great day,” “Hope it doesn’t rain today,” or “Hope everyone likes the meal I just prepared.”

When you go through a devastating accident and don’t know what you are going to face in the future, the word hope means something different. When you live with a disability, you look at things differently. When I pulled up to a store, I never used to think about whether or not I could make it to the door. Now I have to look where I am walking, monitor the surface and the people near me. Now I think, I hope I can get to the door, I hope I don’t slip, and, sadly enough, I hope people don’t stare at me and look at me differently than they used to.

door

“I hope I can get to the door, I hope I don’t slip, I hope people don’t stare.”

Hope has a new meaning now. I hope I can be the person I used to be and I hope that I do not let a disability stop me from being who I need to be.


Anything else you’d like to share with us?


I am excited to introduce BBQ to Devon! You will see how dedicated people are and how much people love meeting competitors and trying competition BBQ. When a charity like yours is involved, success means even more.


You can learn more about Sandy by contacting her via email. Don’t forget to buy your tickets for the Fire Up Hope BBQ Festival to taste real KCBS-sanctioned BBQ made possible by “the Porkanizer!”

New Video: Fundraising Changed My Life After A Spinal Cord Injury

In 2007, Jeff Harris was enjoying July 4 on the beach with friends when the unthinkable happened. “We were kicking a soccer ball around on the beach and my buddy kicked the ball in the water,” explained Jeff. As he dove into the water, “I hit right around the top of my head at the right angle, at the right speed, at the right tilt of the universe.”

Jeff broke his neck and became a C6 quadriplegic.

After they dealt with the initial shock and emotional trauma of Jeff’s injury, his family quickly began to realize how expensive life with paralysis would be. “It’s almost hopeless to get insurance companies to provide what these spinal cord injury patients need to have a great life,” said Jeff’s mom, Jan.

Jeff was facing extreme out-of-pocket expenses and co-pays. “Wheelchairs cost tens of thousands of dollars,” said Jeff, and that’s not to mention “medical bills and daily supplies” he would need for the rest of his life. Fundraising with HelpHOPELive changed Jeff’s life. “HelpHOPELive was a life ring for us,” said Jeff’s dad, Steve. “They know what works and they are able to give advice to folks like us who have never done this sort of thing before.”

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With support from their community, Jeff and his family planned an annual fundraiser that incorporated curling, one of Jeff’s biggest passions before his injury. The Curl-a-thon in honor of Jeff will soon enter its tenth year. “For these two days when we hold the Curl-a-thon, I am so humbled,” said dad Steve. “Everyone in Jeff’s sphere was just looking for a way to help him.

We’re proud to present our newest HelpHOPELive video featuring Jeff’s fundraising story. Tell us what you think by Tweeting @HelpHOPELiveOrg!

Jeff Harris HelpHOPELive Curl-a-Thon

Fundraising has helped Jeff to pursue independence and mobility

5 Unforgettable Facts About Diving And Spinal Cord Injuries

“The only safe dive is the one you never take,” claimed an infographic from Shepherd Center. Is it true that diving puts you at risk? How serious is the connection between diving and spinal cord injuries?

July is the number one month for diving injuries by a wide margin. Here are 5 facts you need to know to keep yourself and your loved ones safe.


Fact 1: Diving is the fourth leading cause of paralyzing spinal cord injuries.


According to Shepherd Center, diving makes the list of the top five causes of spinal cord injuries with paralysis. 89% of individuals who get hurt diving are male and 11% are female. Most individuals who are injured are between 20 and 29 years old.

Shepherd Hospital SCI Dive Accidents Poster


Fact 2: There are multiple ways to sustain an injury while diving.


There are multiple ways for a dive to end in injury or paralysis based on the location and structure of the spinal cord. The severity of disability depends on the level of the spinal cord where the damage occurs.

The vertebrae of the spine, separated by intervertebral fibrous discs, protects the nervous system’s spinal cord. It is possible to damage the spinal cord by injuring the vertebrae and discs or by injuring the spinal cord itself. “Severe damage to the cord and nerves emerging from the vertebral column will cause paralysis,” reported WHO.

Neck Injury Under Wave rotational Neck Injury Under Wave Verticle Compression & Hyperflexion

A user forum on Apparelyzed highlighted some of the many ways that diving can lead to a life-altering injury:

“My husband dove into a pool on Labor Day weekend. He is a C4.”

“My spouse dove into a sponge pit. He is now a C5/6.”

“[To me] dives must include anything headfirst, whether it be into lakes, swimming pools, the sea, trampolines or bouncy castles.”

“I made a conscious though foolish decision to launch myself from my patio roof into an above ground pool ten feet away. It was a calculated risk that turned ugly. C5/6 anterior incomplete, with all the bells and whistles.”

“I dove into a surfboard. C7 complete.”

Dumped on the seabed by a huge wave…C4/5 complete.”

“When you swim competitively, you dive into the pool at the shallow end from a racing block. I was goofing around and dove too deep and hit the bottom.”

“I dove off a 70-foot-high cliff and was fine. Then I dove into a shallow area (of water) from about 6 to 7 feet and hit the sand on the bottom, fracturing my spine at C5/6.”


Fact 3: Water can be deceptive, even if you are a good judge of depth.


Many individuals who sustained a spinal cord injury from diving echo the same lament: “I thought I had good perception skills. I thought I could trust myself to stay safe.” The truth is that water often appears to be deeper than it is, which can lead to devastating errors of judgment even for experienced swimmers and divers.

HelpHOPELive diving safety

Even experienced swimmers can misjudge depth

“The physics of what happens is unforgiving, as a diver can enter the water at 15 feet per second. Most of these accidents occur in water that is less than 3 feet deep,” explained Dr. Robert Bohinski in a PSA from Mayfield Clinic. “These accidents [are] completely preventable.


Fact 4: A single dive can alter your life forever.  


In 2014, Dillon Connolly was swimming with friends when he performed a simple dive from one area of the water to another. Storms had created a sandbar beneath the water, and the impact shattered Dillon’s C5-C7 vertebrae. What followed was “the longest year of Dillon’s life,” explained girlfriend Kerry Sheridan. “Immediate surgery, nearly a month of intensive care, three months of intensive physical therapy, occupational therapy, speech therapy, and lifestyle adaptations.”

Dillon Connolly HelpHOPELive

Dillon shattered his C5-C7 vertebrae while diving

Dillon explained that being an experienced swimmer isn’t enough to protect you from a dive that can severely alter the rest of your life. “I swam my entire life competitively,” he explained. “It even paid for college. I broke my neck diving into a wave where the sandy bottom went from deep to too shallow. I tell everyone I meet who asks what happened to never dive unless you can see the bottom, and to tell their kids and friends, too.”

Dillon Connolly HelpHOPELive

Dillon with his girlfriend, Kerry, and dog, Reef


Cole Sydnor was 16 when a diving accident left him paralyzed from the chest down. “The average person may not understand the extent to which our injuries affect us ‘behind the scenes,” Cole explained in an interview. “Most people…are never exposed to what it takes for [us] to shower, dress, use the restroom, etc. Those are the hardest parts about living with a spinal cord injury.”

Cole Sydnor HelpHOPELive

Cole was 16 when he became paralyzed from the chest down

To add to the physical and emotional challenges, spinal cord injuries can come along with a host of pricey out-of-pocket expenses. “Any medical expenses deemed unnecessary by insurance fall on my family and it becomes their responsibility to make those purchases,” Cole explained. “My elevator, room and bathroom renovation, and truck were all expenses that our community rallied to help fund.”

Cole Sydnor HelpHOPELive

Cole’s community “rallied to help fund” his out-of-pocket needs

Today, Cole and his family are vocal advocates for swimming and diving safety with the No What UR Divin’ N2 campaign. “I’ve been able to raise awareness about spinal cord injuries and spread a message about the importance of diving safety to youth in my community,” Cole said.

Cole Sydnor HelpHOPELive

Cole and his family are now diving safety advocates


Jeff Granger Harris broke his neck diving into the ocean in 2007. “He ran in to jump over a wave like me and him had done 20,000 times,” explained Jeff’s brother, Greg. Jeff hit his head “at the right angle, at the right speed, at the right tilt of the universe” and became paralyzed. “Anything you’re used to doing, you can’t do anymore in Jeff’s situation,” noted Greg.

Jeff Harris HelpHOPELive

Fundraising helps Jeff expand his mobility options

Jeff will face lifelong physical and financial challenges because of a split-second dive. “This is the only life that I have and I’m going to make the best of it. HelpHOPELive allows you some of that ability through fundraising,” he said. Fundraising has helped Jeff to bridge the gap between what insurance will cover and what he needs for a fulfilling and engaging life.

Jeff’s incredible story will be highlighted in an upcoming video from HelpHOPELive. Subscribe to our YouTube channel today and be among the first of our followers to see it!

Jeff Harris HelpHOPELive

A new video tells Jeff’s story


Lauren Shevchek had been swimming competitively for over a decade. At age 19, she dove into a pool and fractured three cervical vertebrae. She lost feeling from her chest downward.

Lauren Shevchek HelpHOPELive

Lauren was a competitive swimmer before her diving injury

Lauren worked through months of inpatient rehabilitation to regain some of her independence. She is beginning to recover some feeling beneath her injury site, though she mostly only experiences those sensations as pain. As her mother, Janice, explained, “We have learned to celebrate any sensation, including pain, as a sign that things are reconnecting.”

Lauren and her family speak publicly about the dangers of diving in order to reduce the number of diving-related injuries. Janice explained why she is a vocal advocate for diving safety. “Teens in particular are shocked when I mention that paralysis is not just about walking. It’s about losing your ability to urinate and move your bowels on your own,” Janice said. “Once they begin to understand, they will never forget how devastating the injury is.”

Lauren Shevchek HelpHOPELive

Lauren speaks publicly about the dangers of diving even as an experienced swimmer


Fact 5: You can make a difference.


You have a responsibility to keep yourself and your loved ones safe from preventable diving-related spinal cord injuries. Here are a few things you can do right now:

  1. Educate yourself about safe behaviors and share what you learn with your loved ones.
  2. Always swim with a lifeguard.
  3. Enter water feet first, even if you do not plan to dive.
  4. Don’t dive at all to maximize your chances of preventing injury and paralysis.
  5. Take the Feet First Pledge! Save and share the graphic below or share it via Facebook or Twitter.

HelpHOPELive

“Have the conversations,” urged Janice Shevchek. “Share Lauren’s slogan with kids: ‘If you can’t see through it, don’t dive into it.‘ Never dive headfirst into water you can’t see through, no matter how experienced you are. And don’t ever act on a dare or try risky stunts. The consequences just aren’t worth it.

Voices of Hope: Technology Supports Hobbies And Adventures After Injury

Susan “Suz” Welch had been living with severe arthritis for years when falls related to the condition caused her spinal cord to collapse in 2014. She is paralyzed from the waist down and continues to pursue rehabilitation to improve her mobility and maintain her independence. Suz explains how wheelchair photography and adaptive technology have had an impact on her life.

Susan Welch HelpHOPELive

Suz continues to grow her love of photography through technology


I am 75. I have been involved with technology on some level since I was a kid. My father was a body and fender professional and I spent a lot of time at his auto shop. When I was 11 or 12 I used a table saw at school and cut off my finger and damaged three others–that’s when I got my first experience with therapy, to get my fingers working again. I learned to type with three fingers and became just as fast as anyone else in the class on an old manual typewriter.

As an adult, I was the executive director of a local not-for-profit organization for many years. I directed a year-round camp facility in which we did darkroom photography and, later, digital photography. I also participated in a technology workshop in which I helped to teach young people and their parents how to use tablets and smartphones to learn more about the outdoors–for example: using Audubon identification books on tablets to identify birds in the wild.

After I retired in 2005, I directed three different camps where we used digital cameras and small printers. I found that some kids with behavioral challenges could focus better after learning how to use cameras. We saw great results.

Since I had been active for many years as a camper, counselor and camp director, it was very hard to accept becoming a paraplegic. Until my last fall, I was always able to get up and continue doing things. But the last fall crushed my spine. I was not willing to accept it at all. I thought I would get better and be able to walk again. I bet I asked four or five times every day why I could not do what I used to do. It was explained to me over and over again. I think I still have problems accepting my condition.

Susan Welch HelpHOPELive

“It was very hard to accept becoming a paraplegic.”

2010 was my last summer moderating camps. I pursued surgery to build a curve in my spine to enable my back to support me the way it should. Additional procedures helped to reinforce my spine so it could not bend and crush my spinal cord. Before the surgery, I could not stand, walk or sit for longer than 5 minutes because the pain was too severe. Immediately following surgery, I had no feeling from my chest through my legs. I was in an acute rehab program for six weeks in 2014, and that’s when I learned how to operate a power chair.

After I was released from the acute rehab unit, I went to a therapist, Kimbra Korte in Des Moines, Iowa. Kimbra challenged me every time I was there. I went two times a week, because everyone told me there was no way to know what I might get back. I started learning to do things again, but it was very slow progress.

I rode an FES bike in Des Moines and then I got an FES bike for my home. I ride two days a week, then walk with a walker one day, then do two more days on the bike and increase the resistance every five sessions. My walk is not like everyone else’s: I have to look at my feet when I walk, because I cannot tell where they are.

Susan Welch HelpHOPELive

“It was very slow progress” when Suz first entered rehab

In the beginning, I had to use a lift to get from my bed to my chair. Now, I can get to the side of the bed, use a belt and a walker and transfer to my chair. I reverse it in the evening. I can walk from one wall in our living room to a regular chair 15 feet away. I can walk about 60 feet outside, too.

My caregiver, Carolyn, was my camp nurse from 1998 to 2010. She and her four kids moved in with me. She is now retired.

Since I have been using the power chair, wheelchair photography has been a great outlet for me. I treat my chair like a four-wheeler and go to the pasture and down a dirt road every day. I have been taking pictures all my life, and I have always done photography with a darkroom. Since my injury, I had to give up the darkroom since it was in the basement. I donated my equipment to a local school and hunted all over for some sort of adaptive tech for my chair since a tripod or monopod would not work.

Susan Welch HelpHOPELive

“I am so happy with the equipment that it is my pleasure to share my story.”

BlueSky Designs is a company that creates multiple adaptive devices that can be attached to a wheelchair:  someone who uses a wheelchair, like me, can add a tray, computer, laptop, phone or camera plate to their chair. I was able to get an adapted camera component for my chair from BlueSky Designs. The component attaches to my chair so I can take photographs from my chair with the camera directly in front of me.

When I went to a local camera shop, all of the employees and the owner came out to see my device. They were so excited–they had been trying to help other people with wheelchairs to adapt their cameras and this was a brand new solution.

Susan Welch HelpHOPELive

An adaptive device allows Suz to take pictures from her chair

I will continue to rely on fundraising with HelpHOPELive to help me cover the cost of adaptive equipment. My fundraising has mostly happened with just a few close friends, some of whom were campers of mine during 1961 and ’62. I am so happy with the equipment I have benefited from that it is my pleasure to share my story. I entered three pictures into a local contest [pictures below], and one of them is now hanging in the local gallery for six weeks! I am making photo cards that I hope to sell at local farmer’s markets.

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I would love to be able to drive again and have my four-wheeler adapted so I can use it. I have gotten stuck in the mud with my chair three or four times (I am currently forbidden from going in any mud!). I live in the country, and I donated 16 acres of my land to Camp Hantesa so they could continue a riding program I had started in the 70s. Now they lease the horses so I can still use the 16 acres, and Ledges State Park is in my backyard, so I get to see birds, deer, raccoons, opossums, skunks and more. There are a lot of places I’d like to visit with the four-wheeler.


Suz fundraises with HelpHOPELive for out-of-pocket expenses including caregiver costs and rehabilitation to improve leg circulation and muscle strength. Would additional access to mobility technology improve your daily life? Start a fundraising campaign with our nonprofit at helphopelive.org.

Mobility Matters: Community Support Can Open Doors After Injury

As Mobility Awareness Month continues, we hear from Cole Sydnor, who was 16 when a diving accident left him paralyzed from the chest down. Today, almost five years after the accident, loved ones describe him as a fierce competitor, a compassionate friend and a community member dedicated to giving back.

Cole Sydnor HelpHOPELive

Cole coaches the Richmond Sportable Spokes wheelchair basketball team


Are mobility and independence important to you?


Mobility and independence are important no matter who you are. For me specifically, they are of the utmost importance, because a spinal cord injury can prohibit one from enjoying them freely. It has taken great effort to recover some semblance of the mobility and independence I once had. Now that I have, mobility and independence are allowing me to successfully navigate college and even hold a full-time internship away from home.


How has physical therapy impacted your life?


Without physical therapy, not only would I have an incomplete understanding of what I am capable of, I wouldn’t even have built up the strength to reach that potential.


What financial challenges has your family faced since the injury?


Financially, expenses were centered on making everything accessible. That began with adding an elevator to my house and converting my room and bathroom so they would be completely accessible—all three projects were very expensive. We also had to purchase a truck which could accommodate a specific (wheelchair) lift so that I’d be able to drive.

Cole Sydnor HelpHOPELive

The financial strain on Cole’s family was “significant” after injury

To this day, any medical expenses deemed unnecessary by insurance fall on my family, and it becomes their responsibility to make those purchases out of pocket. Expenses add up quickly. One current expense is outpatient physical therapy. On top of paying for college, the financial strain has been significant.


How did your community support you after you were injured?


At the time, I was certain that my life had been irreparably changed for the worse. Motivating myself was not enough to get my butt in gear, so I relied on friends and family to help me find that motivation to work towards recovery. I was able to lean on my loved ones whose encouragement was neverending. Without that presence constantly pushing me forward, it’s likely that I’d still be swallowed by despair, doing nothing and helping no one.

Expenses which go uncovered by insurance can rack up quickly. My elevator, room and bathroom renovation, and truck were all expenses that our community rallied to help fund. Without my community, we would have had no shot at those things and more.

Cole Syndor HelpHOPELive

Friends and family were a big source of support


Can you describe how it felt to go to college away from home?


Well, I was very nervous and apprehensive about going away to college. What comforted me was the proximity of campus to my home and the fact that my brother was going to be living with me. Like when I was first injured, I really relied on the encouragement and support of my friends and loved ones to make the leap to living on campus.

In hindsight, I was over-worried. The transition was surprisingly smooth, largely due to the very accommodating services of University of Richmond. They put in hard paths where they may have only been an off-road path, moved classes to the most accessible buildings, and placed me in a spacious room centrally located on campus.


What do you think the average person doesn’t realize about spinal cord injuries?


The average person may not understand the extent to which our injuries affect us “behind the scenes.” Most people only encounter people with spinal cord injuries when they are out in public but are never exposed to what it takes for them to shower, dress, use the restroom, etc. Those are the hardest parts about living with a spinal cord injury and unless someone makes an effort to understand, he or she may never realize it.


What are you most proud of?


I’ve been able to raise awareness about spinal cord injuries and spread a message about the importance of diving safety to youth in my community and beyond. A mother told me a story of how her son jumped off a river dock and broke his leg, not realizing that the water was very shallow. She was angry with him, but then he told her, “Mom, I didn’t dive. I remembered Cole’s story.”

Cole Sydnor

Cole is proud of his diving safety advocacy work


What are you looking forward to this year?


First and foremost, I’m looking forward to helping out with a fundraising event which will benefit a foundation that offers private scholarships for varsity or collegiate athletes who have been injured or become chronically ill. Next, I would say graduating from college. After that, if I could land a stable job in my field of interest, I would be stoked.

Most of all though, I look forward to the day that there is a cure for spinal cord injuries. My life would be transformed in an instant, the same way it was on the day I was injured. To me, the word “hope” means that one day I’ll walk again.


Do you know someone who needs community support to live a mobile and independent life after injury? Learn more about fundraising for mobility essentials at helphopelive.org. Mobility matters!