Tag Archives: therapy

Between Hope And Acceptance

Abi Dietz was on her way to school in September 2012 when an auto accident left her with a severe traumatic brain injury. After the accident, Abi was unable to move or communicate. After extensive inpatient rehabilitation, in June 2013, Abi was able to move into her mother’s home. Her family began fundraising with HelpHOPELive for uninsured expenses to help improve Abi’s quality of life and maximize her mobility and independence. Abi’s mother, Georgina, gives us an idea of how life changes after a traumatic injury.

Abi Dietz HelpHOPELive

Abi was injured in 2012


Describe a day in Abi’s life.


Abi is 100% dependent on the assistance of others for all activities of daily living. Each morning when Abi wakes up, I or another caregiver do passive range-of-motion exercises with her. We do her personal care and get her into her wheelchair using a hoyer lift. We then read to her, watch YouTube music videos or do other movement exercises, such as throwing a beach ball and asking her to bat or kick it back to us. This responsive movement is actually new, and even though it seems slight, we are glad that she is responding more than she previously had been.

We have Abi stand in the standing frame three times per week. We take her to scheduled doctor’s appointments, the mall, a local art museum and to the park when the weather is nice. We have a music therapist come in weekly and spend an hour working with her. She listens to familiar songs she used to like, and the therapist tries to get her to play a digital guitar on an iPad or move her hand and arm to play a simple instrument.


Have you noticed any improvements since the injury?


Abi is now able to move her left side at times, but her communication is inconsistent. At times, she is more alert and moves more to look around at her environment. She also shows more movement when giving someone a fist bump, trying to hold something and letting it go again, or reacting to someone throwing a ball towards her.

Abi Dietz HelpHOPELive

Abi is currently 100% dependent on the assistance of others


What are some of the biggest challenges of life with a traumatic brain injury?


The accident has changed our family dynamics in many ways and it has been difficult. Finances are a struggle as well as feelings of isolation. The struggle between accepting what is and still having hope is also a challenge.


What are you fundraising with HelpHOPELive for?


We have been able to purchase an accessible van thanks to fundraising and financial help from a family member, but we still have outstanding expenses. Abi was a musician and music therapy has reached her in places that other therapies haven’t. This type of therapy is not covered by insurance and we use the money raised through HelpHOPELive to pay for it. We also fundraise for in-home massage therapy and physical therapy. Abi has painful spasticity issues and these therapies help stretch and relax her so that she is more comfortable.

music therapy

Music therapy is not covered by insurance


What does hope mean to you?


Hope means believing that things can change. It takes a lot of patience to wait for change to happen and as I said before, it is hard to find the balance between hope and acceptance.


What can the average person do to recognize Brain Injury Awareness Month in Abi’s honor?


You can donate to HelpHOPELive in honor of Abi to help her secure life-enhancing therapeutic treatment that could help her regain mobility and communication skills. You can also send a card to her or to anyone who has a traumatic brain injury. We receive beautiful cards with nature photography from one couple at least once per month. It is so nice to know we are not forgotten.

March is Brain Injury Awareness Month

March is Brain Injury Awareness Month


Follow Abi’s story at helphopelive.org. If you know a family that needs help covering the uninsured expenses related to a traumatic injury, start a fundraising campaign with our nonprofit today.

Voices Of Hope: We Stayed Together After A Catastrophic Injury

Katie started dating Richard Travia when they were freshmen at Villanova University. Two years after graduation, Richard became paralyzed from the chest down after a diving accident at the beach. Katie and Richard stayed together after the injury and, today, they are happily married with two young children.

Richard and Katie Travia HelpHOPELive

Katie and Richard with their two youngsters in 2014


Did the injury impact your relationship?


Katie: The early stages were challenging, scary and overwhelming. Richard’s injury was a big obstacle on our path together, but we didn’t let it stop us from continuing with our goals and future. Today, there are still limitations to what we can do as a couple. For instance, we haven’t traveled to Europe together since his injury because we are fearful of the accessibility challenges; we can’t do some outdoor activities together that we used to enjoy; but we find enjoyment and travel opportunities elsewhere. The injury has brought us challenges, but our relationship is stronger than ever.


Today, how does love play a role in your daily life?


Richard is my best friend and soulmate. We met and started dating when we were young, but we have grown and gone through so much together. I can’t imagine going through a day without talking to him 10 times. We are always eager to see each other every evening after work. Aside from the fact that he can’t stand on his own anymore, you would barely know that the injury had occurred. He is always positive, patient and logical. He keeps me in check.

Katie Richard Travia HelpHOPELive engagement

Katie calls Richard her “best friend and soulmate”

Each day has its own challenges, but we have built an amazing family together with two beautiful children and an awesome dog. Our love for each other and our love for our family is overwhelming to us. Sometimes, amidst the craziness at home, we will both look at each other and smile and say, “Look how lucky we are.”


How did Richard propose to you?


He was amazingly determined to keep with tradition: for months he practiced getting down on one knee during physical therapy. We got engaged on Christmas in 2007 and got married in October of 2008 at my church in New Jersey. Richard practiced standing in physical therapy, and with the help of two friends and a walker, he stood when I walked down the aisle and when we said our vows.

Richard and Katie Travia wedding

Richard pursed physical therapy to be able to stand for his wedding vows


What advice would you give to someone else trying to hold onto their relationship after injury?


Keeping a positive mindset and remembering that things won’t always go as planned is the best way to remain sane. Surround yourself with positive people and things that make you happy. Find great support groups online or in your community and talk to people going through a similar situation.


How does your family and community provide support?


Being in a wheelchair for 10 years has its challenges, both physical and psychological. Richard has been lucky, because everyone surrounded him when he was injured and they stuck with him. He was able to move on with the life that he wanted to have because of that support. Our immediate family and friends have been amazing to us over the years, whether by modifying their homes to accommodate Richard’s needs or helping to lift Richard into a restaurant, home or location for a social outing.

HelpHOPELive friends fundraising

Friends and family “stuck with him” when Richard was injured

Another major source of support was the Villanova community. We graduated from Villanova together but we have received support from people we didn’t even graduate with. From getting people together to watch the game at home with Richard to VIP tickets to basketball games, our Villanova family has been so amazingly supportive. Now, Richard gives back to that community through his involvement with the Villanova Alumni Senate and other activities on campus.


Did that support translate into fundraising success?


Within the first two years after Richard’s injury, we did a great deal of fundraising with HelpHOPELive [pictured below], including a 5K Walk/Run, open bar nights and small events at schools in our area. The support was overwhelming. We were able to raise over $200,000, which has helped us tremendously. We are still relying on those funds now a decade later to cover medical expenses.

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One of our largest purchases was an accessible van for Richard. We were also able to cover the cost of home exercise equipment, prescriptions, ramps and other purchases that helped to make our living situation more accessible for him. The expenses associated with paralysis never go away and insurance covers very little, so the fundraising we did early on has provided some comfort for us over the years.


What is the thing you love most about your relationship?


Richard and I don’t have the best luck, but through all the obstacles over the years, we have still accomplished all that we wanted to accomplish, and we have done it together, as a team.


Did you find love before or after a life-changing injury or illness? Share your story with us in the comments section below and you could be selected to participate in an interview!

Love, Commitment and the Honest Life of a Caregiver

For National Family Caregivers Month this November, we’re profiling individuals who have taken on a caregiver role to support their loved ones. We interviewed Rich Reedy, who has been supporting his wife since a 2014 accident left her with an incomplete spinal cord injury that requires constant care.


Do you consider yourself a caregiver?


I absolutely do consider myself a caregiver. We are fortunate enough in our household to have many people in our circle who we consider caregivers, including a young woman, Judy, who comes in twice a day to support [my wife] Eileen; and Patrick, Bridget and Jacquelyn, our three children, who help out significantly. I serve as a caregiver coordinator, in a manner of speaking: I’m not a boss and not a commander, just a “keeper of the schedule”!

Eileen Reedy HelpHOPELive

Rich Reedy (left) with Eileen Reedy (center) and family.


Is emotional support as important as physical support when you care for someone with an injury?


In my experience, emotional support is a vital part of overall healing. If my wife is not in a good place or if one of our caregivers is unhappy, that attitude is definitely contagious. It’s important to me to try to keep people happy. We want people to support Eileen because their hearts are in it 100%, not because they feel like they NEED to be there. If their hearts are not in it, we do whatever we can to get them there, so that emotional connection is maintained.


What helps you to find relief when you are stressed or upset?

I find my own ways to relieve tension but, in all honesty, when a bad mood starts, it often has to clear on its own. Eileen continues to impress us with her commitment to therapy and progress. Seeing that progress in action is a great motivator and encourager. To me, it’s important to reinforce the good, for my own benefit and for the benefit of other caregivers. I play a role in helping others by reminding them that they are doing a great job and are making an important contribution. Just like in life itself, in caregiving it can make a big difference to be positive and to look for ways to ease the stress and the repetition, so you can continue to take on challenges day after day.


What is the best part of caring for a loved one? The most difficult part?


The best part is loving Eileen and supporting her on her healing journey. Caregiving really can change who you are. I was a man of no patience – now, I am a man of SOME patience, at least! I’ve still got a long way to go.

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The worst part is struggling to find time to unwind and clear your mind and finding ways to avoid self-criticism. My day is composed of getting up early and making good use of every spare moment in the day. I run my own business out of my house, so I’m fortunate to be able to work in between assisting Eileen and supporting the rest of the care team. By 6 p.m., I have no brain left! Sometimes I just like to take a few minutes to sit and unwind at the end of a day. I honestly struggle to remember what my life was like before I took on this role!


Which words would you use to describe caring for a loved one?


The two words I’d use to describe caregiving would be love and commitment.


Do you have any advice for other families who are learning about caregiving after injury?


First, I would advise them to lean on professional support. While Eileen was in the hospital, the staff really showed me what my life would look like, even though I didn’t realize at the time that they were preparing me for that reality! I didn’t know that it was going to be a life-changing experience that would last longer than weeks or months. Professional support like that can really help.

Eileen Reedy HelpHOPELive

Eileen with a service dog, Moose.

I’d encourage people who are about to become caregivers to take a look at caregiver resources like books and manuals. Having a guide helped me a lot – I turned to a book called Taking Care of Yourself While Providing Care. The book is written for caregivers who care for people with spinal cord injuries, but its lessons are relevant to any caregiver. Managing self-care is something that professionals and books will always emphasize; it’s as important as ever to take care of yourself when you become a caregiver, if not more important. If you’re not in a good spot, you can’t help anyone else.

My last piece of advice would be to consider accepting outside help. Our twice-per-day caregiver, Judy, has become like a part of our family, but she still has her own life and her own world outside of us. That means we can chat, talk and laugh with her and those interactions don’t overlap with the rest of our family life. It can be a really nice diversion, and that person also comes in with a “clean slate” and not a host of other worries and long-term concerns to bring to the table. She can give Eileen her full concentration, which is helpful for all of us.


We’ll be celebrating caregivers all month. Have a caregiving story to tell? Reach out to us and you could be featured in an upcoming Blog post!

HelpHOPELive Clients In The News October 2015

October brought us falling leaves, pumpkin spice indulgence and autumn fundraising milestones! Here are three compelling client stories featured in the news this month.


Matt Collura: Annual 5K Provides Financial And Emotional Benefits

Matt Collura 5K Run/Walk

In March of 2011, the Collura family, of Monroe Township, N.J. was rocked by a shocking accident: a snowboarding injury left then-28-year-old Matt Collura reliant on a wheelchair for mobility as he coped with a life-threatening traumatic brain injury. From acquiring specialized accessibility equipment that would keep him safe in his home to pursuing intensive rehabilitative therapy, Matt was facing a long emotionally and financially draining road to recovery. His friends and family members turned to HelpHOPELive for support. With Matt’s passion for athletics and running, a friend suggested planning a 5K fundraiser in his honor to rally community members to help cover the uninsured expenses as a result of injury.

Matt Collura 5K Run/Walk 2015

The Matt Collura 5K Run/Walk celebrated its 5th anniversary on October 11, 2015. The event draws hundreds of supporters who enjoy the opportunity to give back to their friend and neighbor as he continues to pursue recovery with dedication. For Matt and his family, the event is far more than an opportunity to offset vital medical expenses; the run provides a powerful dose of emotional support that keeps him striving forward. “This is a chance for [us] to participate in a day that Matt refers to as the best day of the year,” his supporters wrote on his HelpHOPELive Campaign Page. Since the accident, funds raised from the Matt Collura 5K Run/Walk have helped Matt to pursue the rehabilitation he needs to speak, walk with minimal assistance and pursue a greater degree of independence by moving out of his parent’s house and into a group home. (5K supports Monroe man’s recovery from accident)


Patrice Penny-Henderson: ‘Angel’ Aids Music Teacher With Rare Disease

Patrice Penny-Henderson Elkhart kidney transplant

A rare blood cell disease severely reduced Patrice Penny-Henderson’s kidney function, forcing the elementary school music teacher to receive dialysis three times each week to stay healthy. Despite Medicare coverage, out-of-pocket costs of $20,000 or more made a kidney transplant seem out-of-reach for Patrice. That is, until a chance encounter blossomed into an unexpected lifeline.

In 2015, seven years after she was diagnosed with end-stage renal failure, Patrice reconnected with a former co-worker, Susan Law, who was stunned to hear about her medical ailments. Susan sprang into action, connecting Patrice with HelpHOPELive and helping her to plan community fundraisers to cover her medical bills. Susan and Patrice “chose HelpHOPELive over other popular sites like GoFundMe” in order to secure a tax-exempt donation option for her contributors and expert insights from a HelpHOPELive Fundraising Coordinator. Patrice calls Susan “an angel” for stepping in to support her efforts to secure a lifesaving transplant. (Longtime Elkhart music teacher…needs kidney transplant due to rare disease)


Michael Carns: Military Vet Puts Difficulties On Display To Fundraise For MS

Michael Carns veteran MS multiple sclerosis Marine National Guard

After dedicating himself to years of service in the U.S. Marine Corps and National Guard, Michael Carns was attacked by an enemy of a different kind: multiple sclerosis (MS). The 46-year-old father of three began to rapidly losing his independence and his mobility, struggling to provide for his three children as daily tasks like cooking and using the bathroom became formidable obstacles.

That’s when Michael learned about a treatment trial in Chicago that offered hope for potentially halting the progression of his MS in its tracks. He would need to raise $150,000 to be eligible for the potentially life-changing course of treatment. Michael knew he had to do something to show his community why he needed their emotional and financial support. He reached out to a local news station and offered them a chance to film the impact of MS on his daily life.

In a video interview, Michael shows viewers what life with MS really looks and feels like, from painstakingly transporting himself to his son’s football games to coping with fears that he will not be there to walk his daughter down the aisle on her wedding day. For Michael and his children, fundraising with HelpHOPELive has come to represent a second chance – an opportunity for Michael to pursue advanced treatment that could give him back his independence. “Believe that there is hope, still, because there always will be,” affirmed his son Mikey. (Military veteran hoping for treatment to fight MS)


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

 

Meet Live Award Honoree Aaron Loy

We present our 2015 Live award to HelpHOPELive client Aaron Loy for inspiration after illness following a double amputation after severe complications from bacterial meningitis.

In 2013, Aaron Loy was a dedicated student and a passionate athlete who enjoyed lacrosse, soccer, surfing and biking. As a freshman at the University of California Santa Barbara, Aaron was suddenly diagnosed with an aggressive strain of bacterial meningitis with no U.S.-approved vaccine. The disease progressed rapidly, causing a blood infection and severe internal complications.

Three other university students recovered from the meningitis outbreak with no permanent damage. Aaron’s illness took a different course. Doctors were able to save Aaron and provide antibiotics to eradicate the illness, but only after amputating both of his lower legs.

Aaron Loy prosthetics meningitis

Aaron Loy lost his legs to bacterial meningitis. Picture courtesy of the LA Times.

Watching his own story covered on the news, Aaron recalls lying in the hospital in a state of shock, thinking, “No, I don’t think this is real…I don’t want this to be true.” The catastrophic event shook Aaron and his community to the core. Family members and classmates from Aaron’s hometown and the University of California Santa Barbara community immediately turned to HelpHOPELive to help cover his pressing medical expenses, including co-pays, prosthetics and intensive physical rehabilitation.

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Friends planned dozens of fundraisers from percentage of sales nights to bake sales and car washes. In December of 2013, supporters from Aaron’s home lacrosse team organized the Aaron Loy Lacrosse Shootout, an all-ages event that invited 300 players to complete in honor of Aaron. The event raised more than $18,000 towards Aaron’s medical bills.

Discharged after three months in the hospital, Aaron was too weak to maneuver his own wheelchair. But he set his sights on a formidable goal: regaining his independence by literally getting back on his feet. Aaron took his first steps in prosthetic legs in March of 2014. He continued to practice diligently, improving his strength and coordination at prosthetic therapy sessions three to five times each week.

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Within a year of his diagnosis, Aaron had fought his way to a fulfilling and independent life that included returning to college 200 miles away from his home community, biking to class and hanging out with his friends. And he’s not done yet: Aaron plans to get back on the lacrosse field, go snowboarding and devote his time to helping others who have experienced catastrophic injuries to defy the odds.

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“He gets up every day with a smile on his face, puts his legs on and just carries on,” his mother, Kirsten, told NBC San Diego in 2014. “While his body recovers, his spirits and optimism remain high.”

Image courtesy of the LA Times.

Aaron lives with grace and motivation after illness. Image courtesy of the LA Times.

help-hope-live-it-upThe Live award will be presented to Aaron at this year’s HelpHOPE-Live it Up! benefit on October 16.

Learn more about Aaron.

Each year at HelpHOPELive’s annual signature fundraising event, HelpHOPE-Live It Up!, we honor community heroes who prove why our mission matters with the Help, HOPE and Live awards. In 2015, we’re also giving out an Advocacy and Volunteer of the Year award.

No Limitations: Equestrian Vaulting

We spoke to Alanna Flax-Clark, a paraequestrian who competes in equestrian vaulting and shows in paradressage events. In 2008, Alanna contracted an infection that rapidly destroyed her ability to walk. For Alanna, hippotherapy was an introduction to the immersive world of adaptive athletics.

Alanna Flax-Clark paraequestrian adaptive athletics HelpHOPELive horses

Alanna Flax-Clark is a paraequestrian competitor.

“Sports like equestrian vaulting and dressage have played a big role for me in gaining strength, coordination and mobility,” Alanna said. “It’s important that no matter how you get around, whether you walk or roll, you feel confident and secure in your body. I’ve learned to feel stronger and happier through my participation in sports.”

About Equine Therapy

According to the American Hippotherapy Association, hippotherapy is a way for patients to “engage…neuro, sensory and movement systems.” As the AHA notes, “a horse’s rhythmic, repetitive movements work to improve muscle tone, balance, posture, coordination, strength, flexibility and cognitive skills,” and encourage patient responses that simulate the techniques used for walking.

horse therapy hippotherapy equine therapy

Hippotherapy can improve strength, flexibility and even cognitive skills.

According to Ride On equine therapy center, “the horse, in some respects, ‘lends’ his nervous system to the patient so that the patient may experience organized movement.”

While adaptive riding tends to be recreational, hippotherapy is considered medical rehabilitation and is always supervised by a physician or professional. Hippotherapy has been used to rehabilitate patients with cerebral palsy, autism, multiple sclerosis, traumatic brain injuries, spina bifida, muscular dystrophy and multiple other conditions.

HelpHOPELive equine therapy horse therapy rehabilitation horse riding horseback

Hippotherapy is always supervised by a professional.

New Challenges: Equine Athletics

Alanna began pursuing hippotherapy “with no expectations.” Today, she spends the majority of each week riding or training her horses for equine events.

hippotherapy horse therapy rehabiliation Alanna Flax-Clark

Alanna spends the majority of each week involved in equine activities.

While initially she worked with horses for physical therapy benefits, Alanna soon realized that she wanted more of a challenge. “After going through rehab and not seeing any progress, I began to get frustrated,” she said. “I wanted to get stronger, regain more mobility [and] coordination, and just be able to go outside in the fresh air and have fun.”

Over time, Alanna graduated from hippotherapy to adaptive riding lessons. At a riding show, Alanna competed in three classes and took home two first place ribbons and one second place ribbon. On a fateful day in 2013, Alanna saw an equestrian vaulting group perform at her riding facility. “When I saw what they were doing, I knew immediately that I had to get involved!” said Alanna.

equestrian vaulting gymnastics horse therapy

Equestrian vaulting is an impressive and challenging activity.

Equestrian vaulting is essentially gymnastics on horseback. To most, Alanna’s ambition as a wheelchair-bound rider seemed lofty and even ludicrous. But with tenacity, Alanna was able to begin competing on horseback at a walking pace within a year.

training equestrian vaulting Alanna Flax-Clark

Alanna kept practicing until she was able to compete at a walking pace.

The Benefits of Adaptive Athletics

Alanna identified some profound physical and emotional benefits of paraequestrian participation. “I didn’t grow up around horses and did not expect to fall in love with them as much as I did,” she said. “They really have transformed my life. Most people in wheelchairs participate in sports with other people who have similar disabilities. However, when I’m out of my chair on my horse, I’m on more of an even playing field with everyone else. You can’t even tell that I have a disability.”

Equestrian vaulting horse therapy hippotherapy Alanna Flax-Clark

“When I’m out of my chair on my horse…you can’t even tell that I have a disability.”

Equine athletics is supportive and collaborative, Alanna confirmed. “At practice my teammates ask for feedback on their routines and form; they don’t even see my disability,” she said. “They want me to jump right in and help. It’s an environment full of respect and encouragement.”

Equestrian vaulting hippotherapy Alanna Flax-Clark teamwork

Equine athletics is supportive and collaborative.

She hopes her tenacity will allow other individuals with disabilities to discover equestrian sports for themselves. “I’m the only [athlete] in a chair that competes at vaulting competitions, to my knowledge,” she said. “It’s a more difficult matter for people with disabilities to participate…at the competitive level – even though it shouldn’t be! Horses aren’t the first thing that people turn to when faced with an illness or disability. I hope that starts to change. Vaulting is truly an accessible sport for everyone, no matter your age or ability. When one person starts doing it, it opens up doors to others.”

Getting Started

Alanna urged fellow athletes to overcome their initial trepidation. “Many people think that getting on a horse is impossible depending on their disability, but if there’s a will, there’s a way!” she said.

equestrian vaulting equine therapy horses Alanna Flax-Clark wheelchair

“Horses are naturally empathetic animals.”

“Horses are naturally empathetic animals and can help people overcome their personal challenges. I never would have thought that I’d learn to post at the trot, be able to sit independently at the canter, and even do a shoulder stand or maneuver off my horse into my wheelchair!” Alanna said. I’ve made a huge amount of progress…I’m still continuing to make big strides and learn new things each day.”

Learn more about hippotherapy and paraequestrian athletics before you participate, and always discuss your plans with your support team. You can track Alanna’s progress in paraequestrian vaulting and dressage on her website.

4 Things You Need To Know About Your TBI

March 18 is Brain Injury Awareness Day. To honor TBI survivors and their daily struggle to find a ‘new normal,’ we’ve created this Guest Post with Huffington Post writer and TBI survivor Amy Zellmer. If you’ve experienced a TBI, here are four things you need to know right now, and four ways to find support.

Brain Injury Awareness Day HelpHOPELive

March 18 is Brain Injury Awareness Day.

One: It’s normal to feel angry, afraid or stressed out.

A TBI can spark a range of confusing emotions, from anxiety and apprehension to anger, helplessness and panic. Zellmer confirmed that after her TBI, she constantly felt afraid of sustaining a second injury and daunted at the prospect of managing her TBI symptoms for the rest of her life.

Some TBI sufferers encounter “a daily struggle even trying to get out of bed in the morning,” said Zellmer. “They are terrified of what might happen to them next. Some have such profound anxiety that they can hardly leave their home.” Zellmer cautioned that attitude shifts after a TBI can be severe. “My personality has changed,” she said, “and I am aware of my mood swings…sometimes the bad days are just more than I can handle.”

Find Support: Zellmer notes that the fear, anxiety and helplessness that you feel can be successfully managed and treated. Sticking to a routine, staying involved in the activities you enjoy, and accepting that your feelings are normal are helpful first steps.

For additional support, there is no shame in seeking professional help. “Seeing a therapist on a regular basis has really helped me deal with my PTSD issues and fear of hurting myself,” said Zellmer. “A therapist is not there to judge you or tell you you’re right or wrong. They are there to help you sort through your emotions and anxiety to relieve yourself of the negatives in your life.”

Anger HelpHOPELive Traumatic Brain Injury Awareness

It’s normal to feel angry, afraid or resentful post-TBI.

Two: Cognitive issues can catch you off guard.

There are multiple cognitive symptoms that might affect your daily life after a TBI. For Zellmer, cognitive issues following her TBI were both frustrating and disruptive. “We [as TBI survivors] have cognitive deficiencies that don’t make sense, even to us,” Zellmer noted. “The confused woman in the kitchen staring at the oven is someone I am just now starting to understand,” she said. “I am finally coming to terms with this ‘new me.’”

Find Support: According to Zellmer, the cognitive issues associated with your “invisible” injury can make you feel isolated, judged or misunderstood. “After my TBI, I felt isolated and alone,” said Zellmer. “No one really seemed to understand what I was going through, or possibly, they didn’t believe it was as severe as it was. When injuries and illnesses are invisible like TBI, it’s easy for others to say, ‘well, you look normal, so you must be okay.’”

Zellmer responded to this isolation with action: “I created a group on Facebook for survivors to hang out and feel like they fit in. Many were craving this sort of connection and community.”

Speaking with like-minded TBI survivors may significantly improve your mood and outlook. The connections may even help your brain to physically heal. “For me, personally,” said Zellmer, “once I began to understand that my symptoms were normal and fit the scale of what others were dealing with, it really started to help my healing and the grieving process as I let go of the ‘old me.’”

Brain Injury Awareness HelpHOPELive memory

A TBI can result in multiple cognitive symptoms, including memory lapses.

Three: Every TBI is different.

For some, a TBI comes with constant physical pain and overwhelming fatigue. For others, the injury is synonymous with constant confusion and debilitating memory impairment. Your TBI is as unique as you are, and your symptoms may be a one-of-a-kind blend of physical or mental challenges. Ultimately you are the only expert on your unique circumstances and struggles following a TBI.

Find Support: For Zellmer, finding an outlet for her emotions and thoughts was an important step in the recovery process. At first, said Zellmer, “I didn’t have the courage. I [was] scared…scared that people will be snarky or rude….scared of reliving the fall.” Zellmer realized that releasing her emotions would allow her to support other TBI survivors and conquer her own fears about her experiences. “Writing is your therapy, Amy,” she said to herself to combat the doubts.

“Finding your ‘new normal’ is an important part of recovery and healing,” said Zellmer. “Get out and get active or find a hobby.” Not all hobbies will bring you as much satisfaction as frustration: “Many of us can’t deal with computer screens or loud stimulation, so finding a new alternative can be challenging, but rewarding when you find it,” Zellmer said.

Brain Injury Awareness HelpHOPELive outlet

A positive outlet can help you come with your emotions post-TBI.

Four: TBIs are expensive to rehabilitate.

The average lifetime cost for a TBI averages $85,000 but expenses for a severe TBI can top $3 million. The recovery process may call for therapy, physical rehabilitation, extensive medical testing, medication, transportation to specialization centers and regular GP or hospital visits. Some costs, including temporary housing and transportation, may not be completely covered by all insurance plans.

Find Support: HelpHOPELive supports TBI patients in their recovery process by providing assistance with fundraising both online and in your community. If you are struggling with the costs associated with your TBI, learn about your options at m.helphopelive.org/supportforinjury.

Zellmer noted the importance of finding professionals who will give you the support and insight you need to recover. “Find a doctor who understands and ‘gets’ you and your TBI,” she recommended. “If you’re not happy with the one you’ve got, look for another, or ask for a referral from someone in your area.” Finding the right recovery team for you may be an ongoing process. “Be an advocate for your health!” Zellmer urged.

You don’t have to face your TBI alone.

Though every TBI is unique, you don’t have to struggle with the symptoms of your TBI without support. Zellmer releases regular blog posts on The Huffington Post for TBI survivors.

Brain Injury Awareness HelpHOPELive support

53 million U.S. citizens are living with a brain injury. You are not alone.

“Know that you are not alone,” said Zellmer. “There are approximately 53 million people in the U.S. living with a brain injury. There are many groups out there trying to help raise awareness. Get involved! Join support groups. Get active. Embrace your new life!”

Talk to us about your post-TBI journey on Facebook or on Twitter.