Tag Archives: spinal cord

Voices of Hope: Celebrating Black History Month

February is Black History Month, an opportunity to delve into the unique challenges and triumphs experienced by African-Americans. Here are two client perspectives on coping with discrimination, holding onto hope and serving as a self-advocate for your health.


David A. Jeffers

This slideshow requires JavaScript.

David (above, with his wife Yasmine and sons) became paralyzed while at the beach with his family in August 2011. His family began fundraising with HelpHOPELive a month later.


Have you personally experienced or witnessed discrimination?

I’ve experienced discrimination both as a result of being black and as a result of being disabled. I have been treated as uneducated and unintelligent. People often choose to talk to my wife instead of me and ignore me, even when I address them directly. Little do they know that the black guy in the wheelchair is an active father, husband and mechanical engineer who graduated with the third highest GPA in my major.


How have you served as your own advocate?

Honestly, I’ve had to fight for almost every service I’ve used and the assistance I’ve received, including public transportation, rehabilitation and making sure neighborhood amenities are accessible. I document my experiences on my blog. I would advise others who face a similar struggle not to take ‘No’ for an answer. You must be persistent. For several issues I encountered, it took months to find a resolution.


What does Black History Month mean to you?

I wish we didn’t need to have Black History Month. I wish the history books and school curriculums could reflect events as they happened with a reverence for all cultures, but until that happens, it will remain an important month to me and my family.


What do you associate with the word ‘hope’?

A catastrophic injury like mine is truly life-changing. I could have died. As a quad, your whole approach to life has to change. You gain a totally new perspective on life. Hope gives me the ability to survive and thrive. Without hope, me and my family would not be as healthy or happy as we are today. My wife and kids are my main motivation and they help me find hope.


David is currently fundraising for Lokomat training ($85 per hour) and exercise therapy ($35 per hour) to improve his mobility. He has noticed a drop in strength and energy level since he stopped therapy in June of 2015 due to financial constraints.


Alison Jones

Alison Jones and son Alerique Dariso

Alison (above, with son Alerique Dariso) was diagnosed with polycystic kidney disease (PKD) when she was seventeen. She is seeking a living kidney donor so she can receive a life-changing transplant. Alison and her son started fundraising with HelpHOPELive in June 2015.


Have you personally experienced or witnessed discrimination?

I have had to seek numerous medical opinions to get treatment. Organ transplantation was never included in potential treatment options as my kidney function declined. I had to initiate the conversation myself. After speaking with other African-Americans, the majority knew people who were on dialysis or had died on dialysis, but only a small percentage knew someone who had received a transplant. In comparison, when I speak with non-minorities, I often hear, “A friend of mine had a kidney transplant. You are going to be just fine.”

The most painful racism I have experienced: one Valentine’s Day while my son was enrolled in a private preschool, he drew a picture of his “valentine,” who had blonde hair. His teacher pulled him aside and told him he couldn’t have a blonde valentine. That incident shaped my parenting and I began to prepare my son for discrimination and teach him that no one can limit his choices in life.


Any advice for other people who are facing the challenges of PKD?

For anyone living with chronic kidney disease or PKD, I strongly suggest participating in a support group. My greatest life strategies have evolved during support group meetings. Speaking with others who are experiencing similar health experiences is therapeutic and helps you to avoid depression.


What does Black History Month mean to you?

Black History Month is a reminder that generations of people have overcome insurmountable obstacles through diligence and continuous effort. Black History Month reminds me that giving up is not an option.

African-Americans make up a minority within the general population, yet we face higher rates of hypertension, heart disease, diabetes and obesity. All of these conditions can lead to kidney failure. One of the reasons I am looking forward to receiving a kidney transplant is so I can teach and advocate for early kidney function testing and proactive health behaviors to change current health trends.


What do you associate with the word ‘hope’?

I am so thankful to all of my loved ones who have supported me during this journey. To me, hope is another day of breath and opportunity. Every time God gives me another breath, I want to make it count, and that is living hope. After my life, hope will be there for more generations to strive to reach their highest level of potential and opportunity.


Alison is fundraising for uncovered costs associated with her kidney transplant preparations, including the cost of a lifetime of post-transplant anti-rejection medications.

Fundraising With HelpHOPELive: Your First Steps

Once you have decided to move forward with fundraising, it’s time to start engaging your community! Talk to your HelpHOPELive Fundraising Coordinator about your family, friends and local area so we can help you decide which fundraising approach will work best for your campaign.

to do list notebook gray desk


If you’re not sure where to begin, these ideas will get you started:

  • My aunt Mary is a teacher. Could I ask Mary about holding a fundraiser through her school?
  • My friend Joseph is an avid golfer. Could a golf tournament be our big fundraising event for this year?
  • My town holds a yearly Strawberry Festival and a 5K Race to benefit a local citizen. How can I contact my town administration to find out more about getting involved in these upcoming events to raise money for HelpHOPELive?
  • I’m active in my church or faith community. Could we have a special collection in my honor or distribute my HelpHOPELive appeal letter to members?
  • My 10-year high school reunion is coming up. How can I get in touch with some of my former classmates who are local or live out-of-state?
  • A friend of my parents sells kitchen storage containers. Would she be willing to hold a container-buying party in my honor?
  • Before I worked with HelpHOPELive, my friends helped me hold a local Dinner Dance. Since that was a big success, maybe we can hold a similar event this year?
  • My cousin, my sister and my friend Marie all asked how they could help or support me as soon as I was diagnosed. Can I reach out to these contacts first to ask for help with planning, promoting and staffing my next event?

You can find a list of fundraising event ideas online in your HelpHOPELive Dashboard. Contact your Fundraising Coordinator today if you’re ready to start planning your event!

Best-Ever Advice After A Spinal Cord Injury

We asked four HelpHOPELive clients to answer a single question.The result is a series of powerful insights for anyone who is struggling to keep moving forward after a debilitating injury.


header


1

“The journey gets easier over time. The first few years are the hardest post-injury, when you are trying to adjust to your body’s physical changes and all that comes with those changes.

If you’re interested in adaptive hobbies and athletics, a good way to start is to search for adaptive sports programs in your area. If there is a specific hobby you’re interested in, search for meet-ups or local clubs for that hobby. Talk to others who have your condition and are already doing the things you would like to be doing.

There are so many resources for support and information, and they are all at your fingertips. You can use social networks like Facebook to find and network with others who have spinal cord injuries.”

Robert


2

“Do the best with what you have and take control of your own care. Follow research in spinal cord injury therapy and stay involved.

Do not give up on recovering functionality and making gains through hard work. Keep your body in shape and ready for the treatments that will come – I hope that they arrive sooner rather than later.”

Brian


 

4

“Don’t give up. Our bodies want to heal if we will let them. Keep moving as much as possible and know that it will get easier and your body will get stronger.”

Rachael


3

“Get out there and try anything and everything you can. Today there are so many options when it comes to adaptive sports and activities, with new ones being invested every day.

There is no excuse not to try to search for something that you will love to do.

Don’t be scared just because someone with a similar disability can’t or doesn’t do something. 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.”

Kirk


What’s your best piece of advice for someone who has recently sustained a spinal cord injury? Share it with us on Facebook or on Twitter.

 

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.

laptop

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.

confused

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.

therapy

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.