Tag Archives: brain injury

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.

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.

March is Traumatic Brain Injury Awareness Month

Every year in March, millions observe Traumatic Brain Injury Awareness Month by spreading news, information and messages of hope for TBI patients. According to the Brain Injury Association of America, the running theme for March from 2015 to 2017 aims to send a powerful message to TBI patients: “Not Alone.”

What is TBI Awareness Month?

The goal of TBI Awareness Month is to increase the general public’s understanding of traumatic brain injuries, how they occur and how the average person can show support to TBI patients and their families. The Brain Injury Association of America encourages supporters to help eliminate TBI stereotypes and stigmas this month while empowering patients to seek the support they need to live fulfilling lives.

TBI, traumatic brain injury, HelpHOPELive, traumatic brain injury awareness month

March is Traumatic Brain Injury Awareness Month.

What is a TBI?

The term ‘traumatic brain injury’ encompasses everything from a mild concussion to a penetrating injury that completely changes a patient’s mental capabilities or eliminates independent functioning. There are 5.3 million Americans currently living with some degree of brain injury that lessens their ability to perform daily activities.

What Struggles Come With a TBI?

According to the CDC, up to 40% of patients hospitalized for a TBI maintained at least one “unmet need” a year after they were first treated. An “unmet need” can include memory improvement setbacks, emotional challenges or anxieties, difficulties managing anger, or the struggle to secure gainful employment.

In addition to the lifestyle impact and emotional challenges, the medical and uninsured costs associated with a TBI are staggering. A mild traumatic brain injury can generate medical bills of over $85,000, and a severe injury could cost a family $3 million or more. The average lifetime cost of a severe traumatic brain injury is between $600,000 and $1,875,000. HelpHOPELive works with severe TBI patients to fundraise for the sometimes shocking uninsured medical expenses associated with their injury.

HelpHOPELive, TBI, traumatic brain injury, expenses, medical expenses, Traumatic Brain Injury Awareness Month

A severe traumatic brain injury can cost patients up to $3 million.

Powerful Stories from TBI Patients

Amy Zellmer, a writer and TBI survivor, gave us a glimpse into her daily life in honor of TBI Awareness Month. “A TBI changes you,” wrote Zellmer. “My personality is different. My energy levels and sleep patterns are foreign to me. The confused woman in the kitchen staring at the oven is someone I am just now starting to understand.”

Here are some powerful insights from other TBI patients and their supporters.

“I have severe memory problems and headaches, and emotional problems. I’m unable to drive now because of my slowed reaction time. I don’t know if I’ll need any more brain surgeries.”

“I do not remember details of my day by the end of the day…my recollections are limited to whatever I wrote in my journal…my medical reports still show I had a ‘mild’ TBI.”

“I’ve had TBI-related injures 10+ years back due to work injuries…[and] have angry spurts. It’s embarrassing and humiliating.”

“Families and strangers alike are often unaware of what is happening with the TBI patient. If there are no obvious signs of the injury, people can be ruthless and unforgiving…for an adult with a TBI, it is like a double injury, being treated like a child along with the inability to do what they could do before.”

HelpHOPELive, TBI, traumatic brain injury, Traumatic Brain Injury Awareness Month

TBI patients speak out about their experiences and struggles.

Finding Strength in the Struggle

One anonymous TBI survivor had powerful advice for fellow patients: “with the strong support from medical, faith, family, and friends, life goes on. I didn’t give up [and] don’t believe in a can’t attitude. Help is out there if you really want it. NEVER GIVE UP.”

Sharing a message of hope and persistence, TBI patient and HelpHOPELive fundraiser Luis Jovel Jr. described to the Washington Post how he found silver linings in the midst of his TBI recovery. “[The accident has] made me better, in every way,” said Jovel. “I’m happy with the way I am, but I always want more. I want to walk [and] I want to be the best person that I can [be].”

HelpHOPELive, Luis Javel, Luis Javel Jr., service dog, traumatic brain injury, TBI

HelpHOPELive fundraiser Luis Jovel Jr. shows tenacity and positivity.

Show TBI Patients They Are ‘Not Alone’

New resources, including TBI forums and documentaries, make it easier than ever to learn about the impact of a TBI. As you read, watch and learn, show TBI patients across the country they are not alone in their daily struggle to regain normalcy and cognitive functionality.

We’ll be posting TBI articles all month on our Facebook and Twitter pages. Join the conversation, and show your support for these patients and their families by using #TBIAwarenessMonth.