Tag Archives: Mobility Awareness Month

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.

Mobility Matters: “You Are Always Stronger Than You Think You Are”

Just a few days before her final college exams, Morgan Ott fell through scaffolding and became paralyzed from the chest down with limited right hand function. Twenty-two year-old Morgan explains how life has changed since the injury and how mobility impacts her daily life.

Morgan Ott HelpHOPELive

Morgan fundraises for mobility essentials


How much did you know about spinal cord injury before you were injured?


Before my injury, I knew little to nothing about spinal cord injury. I have learned a tremendous amount since. When my injury happened, my close friends and family members researched spinal cord injury, the healing process and how my day-to-day life would be affected. I am learning new things every day.

Morgan Ott HelpHOPELive

Morgan says she “is learning new things every day”


How did your community respond to your injury?


My family has been by my side from the moment I was in the emergency room. In the beginning, they took me to all of my doctors’ appointments and therapy sessions. Now, they are still always there when I need someone to talk to or if I need any help. Coworkers, friends and the community also reached out to show me their support.

Morgan Ott HelpHOPELive

Friends and family have supported Morgan throughout her journey

My friends came to visit me in the hospital often, and one of my sorority sisters set me up with my first fundraising page with a goal of $5,000 on a crowdfunding platform. I switched from a crowdfunding site to HelpHOPELive because I had heard great things about the organization, and how it was easier to continuously raise funds for lifetime expenses with support from HelpHOPELive. Fundraising with HelpHOPELive allows me to request the funds when I need them instead of having to wait until I reach a set goal amount.


Will fundraising influence your mobility options?


Yes! I am currently fundraising for a Galileo tilt table, therapy at Project Walk, a standing frame, an FES system to help my circulation and keep my muscles active, and a Smartdrive power assist device to help me get around more easily by myself.


Have you experienced a range of different emotions since you were injured?


I think I have experienced probably every emotion possible, from extreme happiness to feeling very depressed. I often find that when I am the happiest, I think more about how much better my situation would be if I could just get up and walk again, and then I get very sad. It’s like extreme happiness comes with a price. Most days, though, I am very content and just happy to be where I am.


What do you think is the most common misconception about life in a wheelchair?


A lot of people assume that since I am in a wheelchair I need help with every daily activity or that I can’t live on my own or provide for myself. Most people are also surprised when they find out that I drive (with the use of hand controls).

Morgan Ott HelpHOPELive

“A lot of people assume…I need help with every daily activity”


What advice would you give to someone else living with a spinal cord injury?


You are always stronger than you think you are. No matter what obstacles life gives you, there are ways to get past them and continue living a healthy life. In terms of working with HelpHOPELive and covering your expenses, it’s never too late to fundraise, but the sooner the better.


Do you still strive to maintain an active lifestyle?


I recently moved down to southern California with my best friend. I am pursuing physical therapy twice a week for two hours per session, and I am finishing school with Arizona State University online. I am planning to get a job within the next couple of weeks to help me keep busy and make money. I also started attending a wheelchair dance class in which there are many other women around my age in chairs learning and performing routines.

Morgan Ott HelpHOPELive

Morgan attends a chair-inclusive dance class


What are your biggest mobility priorities at the moment?


I am focused on staying active with my physical therapies. My goal for physical therapy is to work on core strength and balance and gain back any amount of function, no matter how small.


Where would you like to be in five or 10 years?


In five years, I will have graduated from college and hopefully have a steady job that I enjoy. I can see myself in a steady relationship, establishing a life for myself, having done some traveling in Europe and Asia. In 10 years, I would like to have a successful career and a family.


In your video, you say, “We were going to make it through” after the accident. Do you still feel that way?


More so now than when I was in the hospital, I feel like I’m going to make it through. Keeping a positive attitude definitely helps me carry out day-to-day activities with more confidence and happiness.

Morgan Ott HelpHOPELive

“Keeping a positive attitude definitely helps me,” says Morgan


Unlock new mobility possibilities for yourself or someone you love. Start a fundraising campaign with HelpHOPELive at helphopelive.org. Mobility matters!

Mobility Matters: The Surprising Benefits Of Good Balance

Balance guru Helena Esmonde is the most senior neurological therapist at Penn Therapy & Fitness in Radnor, Pa. As we explore why mobility matters in honor of Mobility Awareness Month, she explains how balance can significantly influence our quality of life.

Helena Esmonde HelpHOPELive

Senior neuro therapist Helena Esmonde


Tell us about yourself!


I am a senior therapist II, and I participate in mentoring, teaching and research in addition to quality clinical care. As a neurologic and vestibular (inner ear balance) specialist, my focus is to provide individualized rehabilitation using evidence-based practice to ensure the best possible function and quality of life for my patients.


Why is balance important?


Balance is essentially the ability to keep your center of mass over your base of support, which is your two feet. With a working balance system, we can stand safely, react effectively, avoid falling when engaging in a planned movement, and walk and move without stumbling or falling.

balance

Balance is the ability to keep your center of mass over your two feet

When our balance is impaired, we are more likely to fall and get injured. Falls are the most common cause of traumatic brain injuries. Having the best balance possible minimizes the risks for serious and potentially life-altering injuries.


Which conditions can influence our balance?


Our balance can be impaired because of weakness, age, a neurological disease or injury, vision issues or decreased cognition. However, falling should not be seen as a normal part of aging or something that is inevitable. I often tell my patients, “Your auto-pilot for keeping your balance is not as automatic as you get older,” and that’s why patients train with us and learn how to move more safely.

fall

Falling should not be seen as a “normal” part of aging


How can poor balance affect your mind as well as your body?


There are a few different ways that balance can be emotionally and mentally distressing. When a person’s balance is impaired for any reason, that person lives in constant fear of injury and therefore tends to self-limit their activity. This can mean that they avoid exercise because of a fear of tripping on an uneven patch of sidewalk. That person then loses the mental and emotional benefits of regular exercise as well as the physical benefits.

isolate

Poor balance can invoke a fear of social environments

A person with poor balance often also chooses to avoid positive social experiences due to a fear of falling. For example, someone may not visit a friend because the friend does not have a railing next to their staircase, or they may not attend a party because of the fear of losing balance if someone bumps into them accidentally. Poor balance can lead to social isolation as well as physical deconditioning or disability.


How can physical therapy improve balance?


There are numerous advanced physical therapy techniques for training better balance, some of which are tailored to people with specific conditions. The focus of all such physical therapy is to key in on an individual patient’s goals. I am currently training an individual with MS who wants to be able to walk, dance and move safely at her daughter’s wedding in a month. Like most people with MS, she gets fatigued easily and finds that the fatigue negatively affects her balance. Another patient is trying to progress from using a walker to using a cane safely to free a hand for opening doors, carrying items and shaking someone’s hand in greeting. I try to focus on the goals that will bring quality to each unique person’s situation, whatever it may be.

balance

Could better balance improve your day-to-day interactions?


Can physical therapy be expensive?


Physical therapy is not as expensive as some other options, such as surgery, to correct balance issues. However, if a patient has a major injury or illness (including trauma, a stroke or a spinal cord injury) he or she will likely require therapy and rehabilitation for a longer time, including inpatient rehabilitation and home care, before “graduating” to an outpatient therapy setting. The numbers can add up.

wedding

“It’s hard to put a price on dancing at your daughter’s wedding”

Our main goal is helping patients get back to the highest level of functioning. It’s hard to put a price on dancing at your daughter’s wedding or shaking someone’s hand when you meet them. At Penn Therapy & Fitness, we offer a charitable care program for patients who are unable to afford their outpatient therapy. We also work with patients to help identify other resources that may help them afford care. This is one of the many reasons we appreciate partnerships with such wonderful organizations as HelpHOPELive!


Are there any ways to improve your balance at home?


Exercise is a critical element in decreasing your risk for balance issues and falls, but it’s important to understand what sort of exercise has the greatest benefit. Tai Chi, Pilates and yoga can improve balance, but for those who are not up for that level of challenge, strength in the hip muscles and core strength (belly and back muscle) are the most significant factors.

yoga

Try yoga to improve balance, or work on strengthening your body daily

Lie on your side and lift your top leg up and down. You’ll work important hip muscles that keep your pelvis stable for balance. In addition to exercise, have your vision checked at least yearly. Keep your mind sharp with crossword puzzles or other brain games that benefit your eyes and your brain! Taking action to prevent falls becomes more important as you age. Talk to your doctor and make sure you can keep your balance everywhere you want to go!


Need help covering the cost of rehabilitation to maintain your quality of life after a catastrophic injury or illness? Visit helphopelive.org to start a fundraising campaign with our nonprofit.