Tag Archives: exercise

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.

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.

Voices of Hope: Living With LAM

I once wondered if I would make it to age 30; I’m 38 now. I am Nicole Seefeldt, and I have been living with the chronic lung disease lymphangioleiomyomatosis – more commonly known as LAM – for more than 10 years.

Nicole Seefeldt HelpHOPELive

Nicole after an improv workshop


My Story


In 2010, I began having a yearly talk with my doctor about a (double lung) transplant. I was feeling fine at the time with my LAM, but my doctor knew it was a good idea to bring it up as soon as possible to prepare me. At every session, the doctor would check my oxygen numbers to determine whether or not getting evaluated for a transplant would be in my immediate future.

For me to stay on my insurance plan, I had to work 30 hours a week. That was a significant reduction to my original work hours, but my energy levels became so unpredictable, I could only work for an hour or two on a good day before needing a break. I was planning to work up until my transplant evaluation, possibly part time. But my doctor advised me to quit working in July 2015 when I experienced a rapid drop in my oxygen levels and had to be taken to a hospital immediately. My doctors still don’t know what caused the desaturation, but since then, I have needed oxygen 24/7.

I had to talk with my parents and friends to tell them I would need their support and a dedicated caregiver to help me through the process. My best friend stepped up right away! Luckily, support is one thing I was not lacking as I began to prepare for transplant: I am well-connected via social media, volunteer work and improv comedy, which I like to do in my downtime.

Nicole Seefeldt HelpHOPELive

Nicole set a goal of $20,000 when she started fundraising

When I started fundraising with HelpHOPELive, I set a goal of $20,000 in order to cover the expenses I would be responsible for when the time came for my transplant. The $20,000 would also allow me to receive two challenge grants from HelpHOPELive.

HelpHOPELive: Contact your Fundraising Coordinator today to learn more about how to get a challenge grant when you reach a fundraising milestone.

Since last year, some of my disability insurance benefits have been decreased, changed or even eliminated, so my out-of-pocket expenses may continue to increase, especially the temporary housing costs I’ll face during my post-transplant recovery period (I don’t meet the distance requirements set forth by my insurance provider to be covered or reimbursed for this expenses). That’s why fundraising is an essential part of this journey.

It’s easy to feel shame and guilt when you have to stop working because of an illness. Fundraise to take some of the pressure off for you and your family and free up your expenses to stay afloat until you can get to a healthier place. It’s important to be transparent if you’re struggling. You have to say, look, this is why I need this money: I am on X medications that cost me X per year; my insurance premiums cost me X per month, even with Medicaid. People understand that as long as you give them something quantifiable.


How I Keep Hope Alive


There are a few things I do to fight back while I wait for a life-changing transplant:

  1. Keeping myself healthy. My exercise levels are back to a healthy level so I can do a few light weights and other things to build up my upper body for transplant. I need my upper body to be strong enough to rebound and heal after the transplant takes place. There were times in the past where I wouldn’t feel good and would get frustrated with exercise. But exercise is one thing I feel like I can control, and my lungs feel much clearer when I do it. It’s the one gift I can give my medical team to fight back.
  1. Staying patient. Living with a chronic illness and facing your own mortality puts your priorities in order in terms of what you value. Ultimately you learn that it’s rough, but it’s not insurmountable. You find your ways to cope and reconcile things. You have to at least in some aspect use whatever you have to fight back and to hang in the fight. I’m empowering myself and other people to make life more manageable. Maybe the research is too late for me but it might not be too late for someone else.

Nicole is fundraising with HelpHOPELive for LAM-related expenses, including a limited period of lost wages as she remains on long-term disability, COBRA insurance payments, oxygen rentals and other uninsured costs.

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

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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.