Tag Archives: accessible

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.

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!

Overcoming Barriers With Cerebral Palsy

Hi! I’m Chris Klein and this is my story.

My life didn’t start out like my family expected. My umbilical cord was coming out before me, so the doctors had to perform an emergency C-section in order to save my life. I was without oxygen for 45 minutes and was given CPR for another 40 minutes. I should have been dead, but I survived. However, the lack of oxygen caused an injury on the motor portion of my brain. I have a disability called cerebral palsy.

Chris Klein HelpHOPELive

My disability affects my communication, so for the first six years of my life it was a guessing game for everybody. Do you know how frustrating it is not to be able to express yourself? Do you know how frustrating it is when your parents or siblings can’t understand you? This was what the first six years of my life was like. Every time I wanted or needed something the guessing games would begin. At times, I became so frustrated that I would curl up on the floor and just cry.

At age 6, Judy, my speech language pathologist, wondered if I could use an augmentative alternative communication (AAC) device. She sent us home with one, and by that night, I was already talking in complete sentences. I could finally tell my four older siblings to leave me alone.

I can truly say augmentative alternative communication changed the course of my life. I was put in the regular classroom after receiving the AAC device because I was able to communicate. I was able to show teachers my language was intact and I needed to be challenged more and more. My AAC device also gave me the opportunity to interact with my peers, just like everybody else. The relationships I built were a big part of my growth as a child. I can honestly say without an AAC device I wouldn’t be where I am today.

The AAC device paved the way for me to go to college. I was able to get a degree in kinesiology and a master’s in theology, because I had a way to communicate. The relationships I built in college and seminary grew into a community of personal care assistants. Again, I wouldn’t have been able to develop these relationships without AAC. You need communication to develop any type of relationship, so without my AAC device, I couldn’t have done it.

Chris Klein HelpHOPELive

“You need communication to develop any type of relationship”

Eight years ago, my friends kept bugging me to go on one of the Internet dating sites. You have to understand, I was very happy single, but I decided to agree to it so they would leave me alone afterwards! I didn’t expect to meet anybody I would connect with, but I did. Dawn and I talked for a month before we met. This was her first time experiencing a person using AAC, so talking on the phone and emailing each other helped her get to know the person I am. She had been around disabilities all of her life, but communicating with somebody with an AAC device was different. But she was willing to learn, and as we dated she began to realize how much I could do.

Three years after we met, we were married. It has been a real blessing to have a partner to share life together. Communication is a key aspect to any relationship, so we know if I didn’t have an AAC device, we wouldn’t be married. We have to continue working on our communication, but that’s just normal for any couple in a relationship.

After being unsuccessful finding a job after seminary, I decided to start public speaking. I figured I was given the gift to speak, so I put myself out there. Who would have thought a person who is unable to talk would become a motivational speaker? I have traveled all over the country and even the world speaking to a variety of groups. This is why I came to HelpHOPELive: we are in need of a new accessible vehicle. I have limited my speaking engagements because right now we don’t have a reliable vehicle.

Chris Klein cerebral palsy HelpHOPELive

Chris is fundraising for an accessible van

Everybody deserves a chance to live life to the fullest and dream big. This is why I started an organization called BeCOME: AAC. It stands for Building Connections with Others through Mentoring and Educating about AAC. We want to help beginning users become proficient communicators. We believe having expert AAC users, like myself, coming along side beginning users will help them reach their potential sooner. We know there are some people who are reluctant to try AAC and believe a mentoring relationship with an experienced user will help convince them an AAC device would improve their life. They would also have a chance to impact other people’s lives with an AAC device.

I want to convey through my outreach and writings that life doesn’t have to stop when you have a barrier of any kind in front of you. I want people to overcome the barrier or barriers they have in their lives. I believe too many people quit. We need more people to persevere, so that they can make an impact on other people’s lives. I have to believe my story shows people what you can become if you persevere. I want people to say, Chris Klein ran the race to the best of his abilities.

We all will face some type of barrier, and it is up to us to decide whether or not we can overcome it. I believe the easy way out is to give up. The hardest thing to do is to accept the challenge and live life to the fullest.


We are proud to support community-based fundraising for people like Chris who live with catastrophic injuries, including cerebral palsy, ALS and multiple sclerosis. Know someone who needs help? Visit our website to start a campaign for yourself or a loved one in need.

Ask A Professional: Spinal Cord Injury Treatments

Roughly 12,500 people are diagnosed with a spinal cord injury every year. Dr. Mark Eskander, a spine surgeon at Delaware Orthopaedic Specialists, offered insights on what spinal cord injury survivors can expect when they explore modern treatment options.

Dr. Mark Eskander

I heard about a breakthrough treatment. Will it heal my spinal cord injury?

Technology in this industry is evolving constantly, but not all of the ‘groundbreaking’ treatments featured in popular news will apply to spinal cord injury patients with permanent damage. Mainstream media is not always in touch with medical reality. However, there is incredible research being conducted right now in this space.

online news

Are new treatments being researched?

Aggressive cooling may help to reduce secondary acute injuries, but this path is a distant consideration. Stem cells may one day provide an avenue for spinal regeneration. There is also extensive research into advanced prosthesis technology that may provide a return to functionality.

research

Where can I find credible spinal cord injury information?

The American Spinal Injury Association is one of the most well-known organizations serving this patient population. Spinal cord injury groups are a great source for news and support.

How do I begin the SCI treatment process?

New procedures are not the right fit for everyone, so a frank discussion is a vital part of the process. Approach someone who you can trust on your care team, whether it’s a physical therapist or a spinal surgeon. Do your own research online to supplement the process. Some of my patients will discuss and share their personal experiences with others to illuminate their treatment options; that kind of personal connection can supplement your decision-making process.

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I have had a lot of treatment setbacks. Should I give up?

Treatment and rehabilitation options have extremely positive outcomes for many. Improvement is always possible. Though the early diagnosis phase can be very laborious, it’s in your best interest to stay focused and positive with the help of your team.

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How do I know if surgery is right for my injury?

Depending on your response to treatments like injection or physical therapy, your care team will choose whether or not to explore other options. If you’re not a candidate for newer procedures, you don’t need to lose hope: many different procedures, old and new, have their own merits for individual patient needs.

doctor office

How can I mentally prepare for spinal surgery?

Always have realistic goals and expectations for surgery. Expecting to turn into your former self again is a classic setup for failure. Even if you are looking at improvement in the 80 to 90 percent range, you need to remain realistic. You can be dissatisfied if you go in to a treatment expecting a full recovery.

What does the recovery process look like after spinal cord injury surgery?

Spinal cord injury surgery comes with an intensive follow-up and care team collaboration process. You’re looking at ICU stays, possibly multiple surgeries, rehabilitation, specialized spinal cord injury physical therapy, home care with therapists, medical devices to manage day-to-day and, potentially, new devices to accommodate mobility needs.

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Will these treatments be expensive?

Treatment can be a huge cost burden for spinal cord injury patients. Therapies and experimental trials can be both expensive and time-consuming. However, just because there’s a cost burden does not mean that treatment is not worth it.

cost

Will I be able to live a happy life post-injury?

Spinal cord injury patients can live happy and meaningful lives post-injury, without a doubt. These patients have been some of the nicest and most outspoken community members I’ve met in my practice. Modern technology and mobility equipment can improve quality of life and family ties can remain strong after injury.

wheelchair

What do you tell your patients when they prepare for treatment?

A positive mindset is huge. Have hope and get the resources to make it happen. Adjust your expectations for what you can and cannot hope to achieve, but face these realities early on, then start focusing on the positives.

positive

To learn more about Dr. Mark Eskander, visit his website. If you’re struggling to afford spinal cord injury treatment, learn more about your HelpHOPELive fundraising options.

Disability Advocates Take On Uber, Lyft

Advocates are calling for services like Uber and Lyft to provide greater accommodations for travelers in wheelchairs.

What You Need To Know:

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  • Massachusetts Governor Charlie Baker has proposed a bill to address the accessibility of private taxi services like Uber and Lyft.
  • Advocates believe specific requirements should be outlined and enforced by the Massachusetts Department of Public Utilities.
  • The proposal highlights a nationwide debate over the accessibility of these ride-for-hire services.
  • Uber has initiated wheelchair lift van pilot programs in some areas of Philadelphia, New York City, Los Angeles and other major cities.
  • Some wheelchair users turn to Uber because it offers flexible travel and a text-to-speech-compatible app.

Key Quotes:

“All of these systems…are hardly paying any attention to accessibility.”

—Christine Griffin, executive director of the Disability Law Center

“It shouldn’t be that hard. They have an obligation.”

—Thomas Kennedy, Mass. state Senator and quadriplegic

“It was the most dehumanizing experience.”

—Boston account executive who was denied by an Uber driver because of her wheelchair

Read the article at The Boston Globe