Tag Archives: adaptive

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.

From Isolated To Independent: Celebrating National Assisted Living Week

Now in its 21st year, National Assisted Living Week celebrates the lives and achievements of individuals with disabilities, long-term illnesses and injuries. In observance of this year’s theme, “Keep Connected,” we are taking the time to recognize the many ways that technology can be used to increase opportunity and facilitate better care and communication.

National Assisted Living Week 2016

This year’s theme is, “Keep Connected” 

For as long as humans have walked the earth, we’ve sought to simplify and improve our lives with the use of technology.

From the earliest stone tools to the first personal computers, our inventions serve as a means to enhance our natural abilities, helping to strengthen our relationships with others and refine our understanding of the world.


A Smarter, More Connected World


Technology has granted us the power to not only improve but extend and save lives. Medical advances have given us greater power to diagnose and treat illnesses than ever before, and now “smart” assistive tech promises to revolutionize the way people suffering from debilitating illness or catastrophic injury live their lives as well.

Fitbit Surge via pcmag.com

The “tech revolution” includes personal trackers like this Fitbit Surge – via pcmag.com

The Internet has long been a means of virtual connection, allowing users to communicate with one another whether across the street or across the world. Now, the Internet is increasingly used to connect us to the world itself. Smart devices – Internet-enabled objects powered by ever-smaller chips and sensors – have begun a revolution in which everything from watches to WiFi thermostats are able to share data with us and with each other. While the obvious appeal is often novelty or convenience, this shift also represents a powerful new way for people with a disability to live richer, more connected and more independent lives.

Vivint smart assistant

A “smart assistant” can help you control multiple features in your home – via vivint.com


Staying Connected


Each year, National Assisted Living Week encourages us to celebrate those who require assisted living and their caregivers, as well as to recognize the unique challenges they face. This year’s theme reminds us how vitally important it is for individuals with chronic diseases or disabilities to stay connected to friends, family and the world around them. Feelings of isolation and helplessness are common, and disability can erect seemingly insurmountable physical and social barriers. Fortunately, that may not be the case for much longer. Technology provides solutions that may allow disabled individuals to live more independent and interconnected lives, leading to improved quality of life and overall well-being.

Suria Nordin Kirby Nordin HelpHOPELive

Kirby repurposed existing tech to make life easier for his wife, our client Suria Nordin


Empowerment through Technology


The steady march of technology continues to remove obstacles that once isolated individuals with disabilities. Where the ability to operate a mouse and keyboard was once a necessity, voice recognition technology now provides easier access to phones, computers and other devices. Artificial intelligence, though still in its early stages, has already given us personal assistants that can handle many routine tasks that were once a source of struggle for many people. Home automation grants the power to remotely control and automatically adjust the local environment, from thermostat settings to interior lighting to door locks and other security features. Wearable technology opens new avenues not only for staying connected but for doctors and health workers to collect important information that may allow them to provide a higher level of personalized care.

Mikki Marshall control4

Mikki Marshall controls her home environment through technology for greater independence – via control4.com


Turning Disability into Ability


“Smart” technologies like home automation, service robotics and the Internet of Things are still in their infancy, but their potential impact is already being felt. The future has never looked brighter for individuals living with chronic illnesses, catastrophic injuries and other disabilities, as these technologies are poised to revolutionize the way they interact with the world, connect with friends and family and manage their health. Providing assistance that allows for more active endeavors and ability to enjoy many of the freedoms others take for granted, technology can provide tremendous support for people with disabilities and those who care for them.

robot assistant spectrumieee.org

Robot assistants could revolutionize home health care and senior care – via spectrum.ieee.org

Mobile technologies may also lead to improved health care and lower medical costs by providing more high-quality data, assisting in the diagnosis and management of health conditions, helping to prevent accidents and keeping patients actively involved and invested in their care.

Vivint text alerts

Integrated assistive tech can eliminate anxieties and open new possibilities

Technology has always had a central role in shaping both the present and the future. As smart products and mobile computing devices become more sophisticated, they will continue transforming the ways in which we interact with both our surroundings and one another. The many obstacles that people with disabilities and debilitating illnesses face won’t disappear overnight, but by keeping – and staying – “connected,” the world is a more welcoming and accessible place for everyone.


This guest post was written and submitted by Beth K, a freelance writer specializing in home automation and technology topics. How will you celebrate National Assisted Living Week?

 

HelpHOPELive Clients In The News March 2016

Spring is a season of hope, renewal and rebirth. For these three clients, spring represents a chance to enjoy a healthier, happier future with help from community fundraising.


Scott Truran: Veteran Sets Sights On Treatment For Debilitating MS


Thirty-nine-year-old Scott Truran was diagnosed with a progressive form of multiple sclerosis in 2011. Before the diagnosis, the former Marine was very active and prioritized staying in shape. Today, he has to rely on a cane to walk and his right side feels like it’s been “dipped in concrete,” he explained.

Scott Truran HelpHOPELive veteran MS

Scott will continue to lose mobility as his MS progresses

Scott will continue to lose mobility as his MS progresses. It’s likely he will eventually need a wheelchair to get around. Scott and his family learned about a treatment option for MS that may help to limit Scott’s mobility losses. The treatment involves wiping out his immune system with low-dose chemotherapy, then using stem cells, previously harvested from his blood, to rebuild a new immune system. This treatment option is only available as a clinical trial in the United States. Scott and his family will need to raise $80,000 to receive the treatment in Mexico as well as additional funds to offset the out-of-pocket costs of travel and temporary relocation for Scott and a caregiver.

Scott Truran HelpHOPELive veteran MS

Scott is appealing to his community for support for his treatment goals

“The money is the biggest obstacle,” Scott explained, “but it’s a small price to pay for a chance to slow [the] disease or stop it entirely.” Scott will fundraise with HelpHOPELive to maximize his chances of securing the funds he needs to potentially halt or reverse the progression of his MS. (Veteran’s family asking for help with progressive form of multiple sclerosis)


Theo St. Francis: Young Man With Spinal Cord Injury Plans “His Comeback”


In 2013 while taking part in a pre-orientation at MIT, Theo broke his C6 vertebra in a diving accident. Theo became paralyzed from the chest down with some shoulder and arm movement and limited finger dexterity. Doctors told Theo he would likely never walk again.

Theo St. Francis HelpHOPELive

“I am done managing. I am overcoming.”

As the Sonoma Index-Tribune reported, Theo “set his brilliant mind toward devising a plan for his comeback.” In December 2015, Theo reached a major milestone when he was able to sit on a barstool during a celebration with friends. He tries to spend time away from his manual wheelchair, pursuing activities that “align with what my goals are,” from driving an adaptive car to biking, skiing, surfing, kayaking and traveling.

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Fundraising with HelpHOPELive is allowing Theo to pursue the intensive spinal cord injury therapies he credits with helping him improve his mobility over time. Theo emphasizes the word “recovery” and spends his days looking forward. “I put the impossible in quotes,” he explained. “I am done managing. I am overcoming.” (Theo St. Francis overcoming odds to regain mobility)


Michael Mahan: Community Supports Man Facing Intestine Transplant


In 2012, what Michael Mahan and his family believed to be an upset stomach turned out to be a dangerously twisted small intestine. Since doctors removed the failing organ, every 6-8 weeks, Michael ends up back in the hospital with septic blood. With no small intestine to help his body process food, the husband and father of three relies entirely on intravenous nutrition as he waits for an intestine transplant.

Michael’s priority today is raising funds to cover the out-of-pocket expenses associated with an intestine transplant and follow-up care. He may need to spend up to 10 months in a transplant center after the procedure, and the cost must be paid up front before he can be put on the transplant waiting list.

Michael Mahan HelpHOPELive

Michael is a husband and father of three

Fundraising with HelpHOPELive is helping Michael to secure the funds he needs to get the transplant, but it’s also connecting his family with their supportive community. “We’re just so excited to do everything we can to help him out,” said local resident Jon Rosenlund. “He is a wonderful man and a great father. It’s an honor to help him, but we need a lot of help.” (Fundraiser to benefit man awaiting intestinal transplant)


Get your campaign in the news! If you need help with press releases and media outreach, contact your HelpHOPELive Fundraising Coordinator today.

Air Force Airman and Firefighter Refuses to Be Extinguished By Spinal Cord Injury

In July of 2014, a simple trip to the beach changed Air Force airman John Michael LeMoine’s life forever.

John LeMoine HelpHOPELive Air Force

John LeMoine in his Air Force uniform.

John was enrolled in a firefighting technical school in San Angelo, Texas. On a rare day off, John decided to head down to the lakefront with his friends to enjoy the early summer sun. While he and his friends were goofing around, John had to leap into the air to avoid a child playing on the shore. John managed to avoid harming the child, but as he fell, John landed on his neck and shattered his cervical spine (C-6).

John entered a state of cardiac arrest. Thankfully surrounded by his firefighting co-trainees, he was quickly transported to a trauma facility, where he remained in critical condition. Described as a fighter by his supporters, after spending three days in the ICU, LeMoine slowly recuperated from his near-death cardiac emergency. Within six weeks, John had committed himself fully to recovery from his spinal cord injury.

John LeMoine HelpHOPELive ICU

John spent three days in the ICU following his injury.

A C-6 spinal cord injury can cause patients to experience bladder dysfunction, uncontrollable blood pressure and heart rate, body temperature spikes, muscle atrophy, bodily pains and osteoporosis. The recovery process requires hospitalization, rehabilitation and ongoing medical costs that can total over $2 million over the course of a lifetime.

It took six weeks of intensive therapy before John managed to wiggle his left big toe.

At Shepherd Center, an Atlanta rehabilitation hospital, and Project Walk Atlanta, an exercise-based recovery facility, John began to make steady progress. Using the Lokomat, a robotic machine to stimulate movement in the lower extremities, John finally began to wiggle his toes. According to his rehabilitation team, the Lokomat offered John the best possible chance to regain the ability to walk – but the cost of using the machine would become prohibitive once John’s insurance allotment ran dry.

John LeMoine HelpHOPELive Lokomat

John needed extensive rehabilitation to regain mobility.

Thanks to donations to HelpHOPELive from friends and supporters, on March 4, Project Walk Atlanta reported that John was able to stand completely independently. Next to a picture of a smiling John, the Project Walk team noted, “He has put in a lot of hard work to get where he is now, and we are excited to see where he is going to go from here.”

HelpHOPELive John LeMoine stands

John stands on his own for the first time since his accident.

John is looking ahead to a life of continued selflessness. As supporters note on John’s HelpHOPELive Campaign Page, “His wish is to remain in the Air Force and continue to be [an] airman, and if at all possible, to somehow go toward the fire again.” John’s accident could not eclipse his desire to serve. “If anyone knows the heart of a fireman, you know that they are the most selfless people in our lives,” his supporters confirm.

John receives continual support and encouragement from his “Air Force family,” his friends and “even strangers who have given us support and strength from the beginning,” notes his Campaign Page.

HelpHOPELive John LeMoine nephew

John pursues recovery with support from nephew Jake…

John LeMoine HelpHOPELive niece

…and niece Lily.

John’s supporters have thanked donors for “the outpouring of love and support” they have received so far. “Every one of you have helped us meet our goal for John’s continued therapy,” they note. “We have all learned so much about ourselves and the goodness of people…These donations will allow him to strengthen his ability to walk again and meet those financial challenges.”

John LeMoine HelpHOPELive family

John’s family and supporters thank the community.

John is looking to friends, Air Force peers and family for continued support as he makes major strides in his recovery.

You can give John your support by reaching out on Facebook or on Twitter and following his recovery at helphopelive.org.

If you or someone you know is struggling with the medical costs associated with a spinal cord injury, reach out to us at helphopelive.org. Our team can help you to fundraise online and in your local community to offset your uninsured medical expenses.