Learning to thrive, in the face of early-onset Alzheimer’s

Larry spent a majority of his life in the Lewisville area, a sprawling suburb outside of Dallas, Texas. He raised his children there, held a prominent car salesman job locally and made several close friendships during his five decades in the town. So when he started to become forgetful — getting lost while driving, misplacing his cell phone and unable to recognize many of the familiar places he knew so well, his family became concerned.   

“We became really worried when familiar things started to become unfamiliar,” said his sister, Pam, who lives five hours away in Lubbock, Texas. “Once he lost his job, we decided we needed to take action.”

With the help of his family, Larry, 58, turned to doctors for answers. He was evaluated for anxiety and depression — conditions that at face value might explain some of the noticeable changes in his day-to-day functioning. But having depression seemed implausible to Larry and his family, as he always thrived when around others and viewed life with glowing positivity. 

After six months of appointments with various physicians and an unsuccessful regimen of anti-depressant medications, Larry’s family turned to Claudia R. Padilla, MD, a behavioral neurologist on the medical staff at Baylor University Medical Center at Dallas, to get answers. Dr. Padilla also serves as the medical director at the Baylor AT&T Memory Center.

In February 2015, she diagnosed Larry with early onset Alzheimer’s disease, a progressive brain disorder that slowly destroys memory and thinking skills. Affecting more than 5.4 million Americans, Alzheimer’s can impair a person’s decision-making skills and the ability to react quickly.

With less than 5 percent of Alzheimer’s diagnoses occurring in people under 65, the news was unexpected for Larry’s family, even after a long period of uncertainty over his diagnosis.

“It was a very emotional time because we didn’t expect an Alzheimer’s diagnosis, especially this early,” said his sister Pam.

For Larry, he took the news in stride.

“I’ve always been a positive person and I’m lucky to have a great family that supports me and provides me with a lot of love,” he said.

Making Changes for the Future

Although Alzheimer’s disease cannot be stopped or reversed, an earlier diagnosis allows a person to live independently for as long as possible and plan for the future.

For Larry, that means living on his own, with girlfriend, Sheila, and having the support of his four children and siblings. His family banded together to obtain legal documents that would give them the ability to help make important medical decisions. They also became more involved in financial planning, organizing bills and insurances.

“I’ve always been a positive person and I’m lucky to have a great family that supports me and provides me with a lot of love,” Larry said.

“We became a team to support him in this journey,” Pam said. “It’s been a challenge, but we are learning as we go along.”

To prepare for his journey more effectively, changes were made in the home. The couple moved to a lower floor apartment to prevent stair injuries and Sheila took on more of the day-to-day responsibilities such as medication allotment and cooking. Larry has limited himself to just boiling eggs and making coffee. His everyday food staples consist of avocado and dark chocolate, easy items that require no cooking.

But some changes have been hard to make. After an incident of driving disorientation that resulted in Larry needing help from a police officer to get home, he had to cease driving—a tough choice to make for someone who has always loved cars. Although Sheila does the driving now, he still obtained a MedicAlert^® ID bracelet, which provides emergency information and a family contact in case he gets lost in the future. 

“It was hard on him when he stopped driving, but it was for the best,” Pam said, who is thankful for the MedicAlert bracelet that was gifted to him. 

To make other transitions smoother, Pam said they plan to keep him physically and emotionally active and to look for opportunities for him to still be independent. 

As such, Larry works part-time in a restaurant and spends a lot of his time exercising and socializing – all activities that keep him healthy and engaged.

Tapping into Resources for Support

Although the experience with Alzheimer’s disease was new to Larry’s family, they found solace and support when they met Linda Jersin, M.Ed., LPC, CRC,  Alzheimer’s Association Care and Support Specialist with the Baylor AT&T Memory Center, who has helped many families plan for the future, providing the necessary resources and support in the face of Alzheimer’s.

“One of the most important things we can do is to create a support team with access to resources that will help the individual or family regardless of what stage they are in,” Linda said, who leads classes for patients, family and caregivers, and helps them connect with community resources and support services.

“Sometimes things will get worse before they get better. But, like I told the crowd at the walk, always think positive.”

One of the resources introduced was the local peer-mentoring program, which connected Larry to another Alzheimer’s diagnosed individual for support. Through this program, Larry found camaraderie in a family who had similar experiences, such as losing a job as a result of Alzheimer’s.

Larry has also thrived by attending an Alzheimer’s Association Caregiver Day Out Program called Oasis every Thursday, an adult day program in his town that gives him an opportunity to socialize and explore new skills in a safe environment — all stimulation that Linda recommends as a way to preserve mental acuity.

At Oasis, which is designed specifically for early-stage individuals, Larry enjoys entertaining his peers with his dance moves, while sharing stories, playing games or simply participating in a variety of themed events. Although organizing transportation can be somewhat of a challenge — and can vary from an Uber service to a volunteer — Larry says going to Oasis keeps him in good spirits.

His positive outlook on life is so infectious, he was recently invited to speak about his condition and experiences at the 2016 Grandscape Alzheimer’s Walk, in front of more than 3,000 people. 

“Sometimes things will get worse before they get better. But, like I told the crowd at the walk, always think positive,” he said. And most importantly, “Keep your joy.”

For more information on available resources for Alzheimer’s caregivers, visit the AT&T Memory Center, the Alzheimer’s Association, or call the Alzheimer’s Helpline at 1-800-272-3900 for 24-hour support, seven days a week.