“Memory loss does not mean loss of intelligence.”

After my stroke, I learned something I had never really thought about before: memory loss is not just a medical issue — it's a social one.

People notice memory problems quickly. You repeat something, forget something, lose your train of thought, and the reaction is almost immediate. People start to assume. They don’t always say it out loud, but you feel it. They talk to you differently. They explain things differently. It’s like the moment memory slips, people believe everything else has slipped with it.

That assumption isn’t always true.

My stroke was a hemorrhagic stroke — what is known as an acquired brain injury (ABI). It didn’t come from a fall or an accident. It came from inside my body. What it left me with was not a loss of who I am or how I think. What it left me with, among other things, was some difficulty with short-term memory and fully remembering who I have been.

And that’s where the misunderstanding starts.

Because when people hear “memory loss,” many of them think of dementia. They assume decline. They assume confusion. They assume everything is fading.

But memory loss after a brain injury is not the same thing as dementia.

Dementia is generally progressive. It can affect memory over time, along with judgment, reasoning, language, and independence. Brain injuries — like stroke or traumatic brain injury — are different. They usually come from a specific event. They can leave real challenges, but for many people, those challenges are often specific physical or cognitive functions. You might struggle with memory, but still think clearly, make decisions, and understand the world around you.

I know that difference firsthand. I’m living it.

What made that difference even clearer was the kind of treatment I received. At Shepherd Center and later through Shepherd Pathways, everything was focused on recovery and adaptation. Therapy wasn’t about expecting decline — it was about improving function, rebuilding independence, and learning how to work through what had changed.

That matters.

Because it reinforces something that doesn’t always get said clearly:

Memory loss does not equal loss of intelligence.

At the same time, this experience has also shown me something else.

Even though the medical differences between dementia and brain injury are real, people don’t always treat them differently in everyday life. If someone forgets things or struggles to keep up, the response can look the same regardless of the cause.

That’s where my perspective changed.

This experience has given me a deeper sense of empathy — not just for people living with dementia, but also for the caregivers around them. Caregivers are often trying to help while dealing with uncertainty, stress, and incomplete information. They may not fully understand what’s happening neurologically, but they’re still navigating it every day.

And that’s not a failure — that’s reality.

Once you understand that, it becomes easier to see why frustration shows up on both sides — patients and caregivers alike.

That’s why support matters. Education matters. Sharing our perspectives matters.

Because sometimes the issue isn’t just memory loss itself — it’s what people assume memory loss means.

If there is one thing I hope people take from this, it’s simple:

Not all memory loss is the same — and it doesn’t mean a person has lost who they are.

Marcus M. Johnson, Jr. is a stroke survivor and former Shepherd Center patient. Drawing from both personal experience and research, he writes about brain injury, recovery, and the importance of understanding memory loss beyond common misconceptions.

He next went to Shepherd Center’s Complex Concussion Clinic, where he spent the next five months working on regaining his strength and balance and addressing memory issues.

The staff reviewed his medications and recommended he stop taking them since they can mask symptoms.

“Things got worse before they got better,” Peter admits. “I had ringing in my ears and a lot of pain.”

He spent three days a week at Shepherd Center, participating in various forms of therapy. When he wasn’t in therapy, he worked on exercises at home.

“It was a lot of hard work,” Peter says of his recovery. “But I was committed to getting better. The staff was so supportive, and they motivated me to keep working. I didn’t want to let them down.”

Slowly, he saw progress. His short-term memory improved. He could walk in a straight line. Strength returned to his right side. He tapered off his therapy sessions to weekly visits to Shepherd Center.

The most significant victory was when Peter was cleared to drive. At first, he was allowed to drive only short distances, and his wife had to be in the car. As he built up the hours, he could eventually drive part of the way on a trip to Florida. Then, he was cleared to return to work — once again in small increments.

Peter says life has returned to normal and credits his family, his faith, and Shepherd Center.

“Shepherd Center saved my mind and quality of life,” he says. “The people there care about you and show that in everything they do. I would recommend it to anybody going through what I did. I thank them for the support and what they did for me.”

Written by Sara Baxter

On a rainy day in June of last year, Taylor’s car hydroplaned and hit a light post. Taylor sustained multiple injuries, including a traumatic brain injury (TBI). She was admitted to UF Health Shands Hospital in Gainesville, where she spent close to three weeks before transferring to the Disorders of Consciousness Program, which is part of Shepherd Center’s Brain Injury Rehabilitation Program.

Taylor does not remember much about the weeks she spent inpatient at Shepherd but says she does remember re-learning how to walk — and feeling that the staff really cared.

“I was so confused about why I was there, but I remember everyone was really sweet, and they provided me with more things than I even asked for,” Taylor recalls.

Tyler appreciated the continuity of care for Taylor.

“The nurses were amazing,” he says. “Having the same nurses was big for me because they knew Taylor, and they knew me, and we were able to build a relationship. They were invested — all the nurses in inpatient, all the therapists, you could tell they were passionate about it, and they cared.”

While Taylor worked on swallowing, talking, and walking, Tyler turned to peer support and family education programs to learn more about how to support Taylor and handle the uncertain path of her recovery.

One program in which he participated, called “Getting There,” was part of a brain injury patient caregiver research study. To assess the value of peer-led intervention, Shepherd's staff adapted a curriculum created at the Self-Management Resource Center in Stanford, California, to fit Shepherd’s acute rehabilitation setting. For “Getting There,” Tyler was assigned a peer mentor, Mariellen Jacobs, whose son had previously sustained a brain injury. 

“I looked forward to talking to Mariellen every week. That was the best therapy I could have asked for because I didn't know what was going to happen,” Tyler recalls. “Typically, when you go through an injury, say, a broken arm, there’s a standard recovery time. The brain is completely different, so hearing Mariellen’s experience and knowing that some of the things I was experiencing weren’t uncommon and that there was hope encouraged me.

Taylor and Tyler also relied on their faith and were glad to be able to attend services at Shepherd, led by Shepherd Center’s chaplains.

“Having a church service in-house, once Taylor was able to go, it was good getting back into the routine and getting the encouragement,” Tyler recalls.

The couple focused on Taylor’s recovery, and their parents pitched in, staying nearby and helping take care of the girls. After six weeks inpatient, Taylor graduated and transitioned to Shepherd Pathways, Shepherd Center’s comprehensive outpatient rehabilitation program for people recovering from brain injury. She and Tyler took advantage of Shepherd family housing for a month to ease the transition.

At Pathways, Taylor shared a goal with her therapist.

“I told her that I wanted to get to a point where I could play with my girls and carry them,” Taylor explains.

So, Taylor’s youngest joined a therapy session. 

“We played outside, and I practiced carrying her because I was so weak at the time — she was really heavy,” Taylor laughs.

As parts of Taylor’s memory return, she’s rebuilding and rediscovering her relationship with her daughters.  

“Before the accident, anything that they would do, I would do with them — we had an intense relationship. But for a few months after the accident, I did not remember our relationship, so I felt like I was building a new one. It wasn’t until February of this year that the memories of the relationship that I had with them started to come back.”

Taylor is spending time with her girls, embracing her baking hobby, and running. She has returned to teaching, and she’s continuing therapy close to home. She and Tyler are working with a team to start a nonprofit to provide support, including funding for transportation and housing, to families of people who sustain multiple traumatic injuries in the Gainesville area. One of their goals is to raise awareness and funds by hosting a 5K run. They hope to hold the first 5K in spring 2024.

“We want to use what we learned in the worst times of our lives to help other people while they're going through the worst times in their lives,” Tyler explains. “I'm still learning —learning how to adapt and how to overcome. It’s an ongoing process.”

Written by Ruth Underwood

Glass is worn on the head just like regular eyeglasses. It has just one display on the right side, with a track-pad and natural language voice input for control, as well as a bone-conducting speaker for audio output.

At Shepherd Center, researchers, who received a Glass Accessibility Award, developed EyeRemember to assist people who have an acquired brain injury in compensating for memory difficulties that often accompany these injuries. Putting names to faces can be troublesome for anyone at times, but for someone with a brain injury, it can be a nearly constant struggle. Long-term memories often stay intact while new ones slip away in a moment.

“In addition to being difficult for the patient, this can substantially increase the burden on others because it means they require more help,” explained Tracey Wallace, a speech-language pathologist and researcher at Shepherd Center.

Patients with memory difficulties sometimes get help from using memory notebooks and smartphones. But Wallace, alongside clinical research scientist John Morris, Ph.D., and software engineer Scott Bradshaw, wanted to see if wearable technologies like Google Glass could assist.

They tested their idea with five clients enrolled in the brain injury day program at Shepherd Pathways, Shepherd Center’s post-acute brain injury rehabilitation facility in nearby Decatur, Ga.

“Each person has a team of therapists – an occupational therapist, physical therapist, speech therapist, recreational therapist, a counselor and case manager,” Dr. Morris explained. “That’s a lot of people to keep track of. The core question we had is, ‘Does our solution improve their recollection of names and details of their therapy team?’”

Patients normally receive a sheet of paper with the name, type of therapist and the therapist’s location in the clinic. “That’s very helpful, and the patients benefit from seeing it repeatedly,” Wallace noted. “The drawback is they have to initiate looking at it, and sometimes they don’t remember that they have it.”

So the research team developed EyeRemember to display the therapist’s photo, name and location in the clinic when the client gets within 3 feet of the therapist.

Each client used the app for two to four weeks. At the end, every participant was able to recall all of the targeted information with complete accuracy. All but one participant also showed significant increases in recall of this information even after they had stopped using the app, researchers reported.

“We weren’t sure that people with significant memory impairments could learn to use Google Glass, a very different sort of device. It turns out they can,” Wallace said.

In addition, she said, the benefit of using wearable technology is that the information can be provided without patients having to remember to pull the phone out.

Meanwhile, with support from the Rehabilitation Engineering Research Center for Wireless Technologies (Wireless RERC), the research team is also developing BreatheWell, a Google Glass app to help people use breathing therapy to reduce stress. Working with Shepherd Center’s SHARE Military Initiative, a comprehensive rehabilitation program for service men and women who have sustained mild to moderate traumatic brain injury and/or PTSD in post-9/11 conflicts, researchers aim to see if a wearable device might encourage greater use of breathing therapy than smartphones currently do.

When people endure stress, they experience the fight-or-flight response. Their heart rate increases, and breathing becomes shallow, exacerbating anxiety. Slowing their breathing, particularly when exhaling, helps calm them.

People often forget to practice breathing therapy and were saying it seemed like it would be effective, but they couldn’t remember how to do it when they were under stress. The team – including Wallace, Dr. Morris, Bradshaw and SHARE clinical psychologist Corissa Callahan, Ph.D., ABPP – created an app for Glass to allow users to program reminders to practice and if there might be other benefits to using a wearable to aid relaxation breathing.

Putting the app on a wearable was also attractive because it could remind patients to do something without them having to bury their head in a phone.

“People often like to stay aware of what’s going on in their environment,” Wallace explained. “If they’re staring at their phone, they’re not able to see what’s going on. Wearing Glass, you can be in the moment and look at the screen, but in your peripheral vision, you still are aware of people around you.”

Breathe Well is still in development, but researchers say it will work much like apps on smartphones, with a visual guide that allows users to determine the duration of each breath.

Researchers are adding key features, like the ability to set reminders to practice the technique with the app during periods of low stress, with the aim of making it easier for the user to perform relaxation breathing when it is truly needed. Plus, the app allows the user to upload their own calming pictures and music, and it allows clients to customize the device’s voice guidance system, changing from a male voice to a female voice or muting the voice guidance altogether.

“We want people to have options, because they’re more likely to use it if it’s adjustable to their comfort and needs,” Wallace said.

The research team expects to have results by the end of 2015. They will be presenting preliminary findings to date in a session at the upcoming 92nd Annual Conference of the American Congress of Rehabilitation Medicine in October.

Although Glass is being redesigned by Google, the team says the results from these studies can be applicable to other wearables, such as smartwatches, as well as devices that are still just a gleam in an inventor’s eye.

Written by David Terraso
Photos by Louie Favorite
EyeRemember Video Produced by Louie Favorite

 

Here are some of the most popular apps, many of which are available for both Apple and Google devices. A complete list is available in the PDF download above.

For memory and planning aids, try:

• Fantastical 2
• Evernote
• Penultimate
• TextMinder
• Remember the Milk

For home management, try:

• HomeRoutines
• Bill Keeper
• Grocery List Free

For medical management, try:

• PillBoxie
• My Medical Info
• My Fitness Pal

For education, try:

• iStudiez Lite
• Paper Helper
• 3D Brain

For brain exercises, try:

• iJewels
• Lumosity
• Fuzzy Memory
• Matrix-Game 2
• Racing Penguin

For more information on brain injury rehabilitation services at Shepherd Center, click here.

“When I watch her character, Lucy, in 50 First Dates, I think, ‘That’s who I was!’” Anna said. “I feel like she and I were the same person.”

Both Lucy and Anna sustained traumatic brain injuries in car accidents that affected their memories. For Anna, reality included more than three weeks in a coma after her 2010 car accident. After four weeks at Pensacola’s Baptist Health Care, she was taken to Shepherd Center.

“I had to relearn everything,” Anna said. “I didn’t remember much at all at first, so it was a slow process. And I like to learn on my own, so I’m sure I wasn’t the easiest student!”

Scene by scene, though, her world is slowly piecing itself back together. She’s in school again, taking math classes to help her pursue a degree in supply chain logistics.

Amidst all the memory exercises and reintroductions, Anna said she is happiest to discover one unexpected change. “I’m more of a positive person now,” she said. “That’s not who I was before. I’m more appreciative and open-minded now.”

Anna wants to share that newfound feeling with others by planning a speech for new members of her brain injury support group at West Florida Hospital. “I want to let others know what I’ve realized,” Anna said. “Your injury doesn’t mean life has ended. You can take on whatever injury you have and still prosper!” 

She’s thinking about putting her message down in print, too. “I’d love to write a book about my experiences, how they’ve changed me and what I’ve learned,” Anna said. “It’s scary to say that out loud, but it would be a great challenge.” 

Written by Phillip Jordan
Photos courtesy of Anna Pope