Tag Archives: exercise therapy

May is National Mobility Awareness Month!

Why #MobilityMatters

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

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

Chris Arbini Help Hope Live

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

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

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


Mobility is…


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

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

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

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

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


Why #MobilityMatters to Me


Paul Mustol Help Hope Live

Paul participates in physical therapy

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

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

Paul Mustol, South-Central Catastrophic Illness Fund

Living with the genetic disorder Duchenne muscular dystrophy


Molei Wright Help Hope Live

Molei can regain mobility through therapy

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

Molei Wright, Midwest/West Traumatic Brain Injury Fund

Traumatic brain injury in January 2016


Chris Arbini Help Hope Live

Chris is dedicated to physical therapy and regular exercise

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

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

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

Chris Arbini, Midwest/West Spinal Cord Injury Fund

Spinal cord injury in July 2016


Scarlett Chandler Help Hope Live

Greater mobility means more independence for Scarlett

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

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

Scarlett Chandler, Southeast Catastrophic Illness Fund

Living with the spinal cord defect spina bifida


Even With Insurance, Mobility Isn’t Free


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

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

Tell Us Why #MobilityMatters!


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

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.