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In 2007, the lives of O.J. and Chanda Brigance changed drastically with O.J.’s diagnosis of ALS. Simultaneously, Chanda’s role began to change as well. While Chanda will always be O.J.’s loving and dedicated wife, she would also become his primary caregiver as they prepared to fight ALS.
People living with ALS (PALS) need constant care and this task is usually taken on by spouses, children, parents, friends, and other loved ones. These family members willingly put forth much of their time, effort, and energy to help their PALS and face particular challenges because of the nature of the disease.
ALS caregivers must learn new tasks, learn how to work new equipment, deal with the ever-changing symptoms of their PALS, and handle all of these physical, emotional, and financial demands while coping with the fact that their loved one has a progressive, debilitating disease. This can take an emotional toll on the caregiver and affect their physical and mental health.
Chanda’s Caregiver Corner was created to provide a platform for ALS caregivers to receive support, share their experiences, and hear from other individuals struggling with the same challenges they are from day to day. By creating this program within the Brigance Brigade Foundation, Chanda Brigance wanted to create a space for caregivers to feel loved, supported, and simply seen and heard.
Through Chanda’s Caregiver Corner’s ongoing programs, campaigns, and contests, the Brigance Brigade Foundation’s goal is to touch the lives of caregivers in small, positive ways, in an effort to show them that they are not alone and that the work they do does not go unnoticed. We seek to improve the quality of life of caregivers through connections, shared experiences, and love.
Chanda Brigance is O.J.’s wife and his partner in the Brigance Brigade Foundation efforts. A native of Houston, Texas, Chanda Brigance graduated from Texas Southern University with a B.A. in Business Management. After college, Chanda taught first grade for the Arch Diocese in Texas before marrying O.J. Brigance. Once they settled in Baltimore, Chanda managed special events including organizing initiatives and programs for Baltimore Ravens players, wives, coaches and front office staff.
A certified Professional Event Planner, Chanda founded her own events management and design company – Crowning Creations, LLC. Chanda was also a team leader with her church’s Hospitality Ministry.
Most recently, Chanda created the Brigance Brigade Foundation with her husband O.J. and has been focused on helping patients with ALS (also known as Lou Gehrig’s disease) and their families, while also raising awareness about the disease across the country.
Chanda’s Caregiver Corner, a program within the Brigance Brigade Foundation, was spearheaded by Chanda and created out of her own experience being a caregiver, and her desire to support other ALS caregivers in her situation. Today, caregivers from many states are involved in the Caregiver Corner and regularly write in to express their thanks to Chanda for being a beacon of hope, and for working to raise awareness about being a caregiver of someone living with ALS.
Chanda serves as Vice Chairperson of the Brigance Brigade Foundation Board of Directors. She and her husband have raised well over $1 million for the fight against ALS since they were diagnosed with the disease in 2007. In 2016, Chanda was honored as the GridIron Greats Woman of the Year for her work with the ALS community. In 2016, Chanda was honored as the GridIron Greats Woman of the Year for her work with the ALS community (Successfully Coming Off Celexa).
When did you become a caregiver?
I became a caregiver in 2007 when my husband O.J. was diagnosed with ALS.
When someone is newly diagnosed with ALS it can be a very overwhelming time. What are the first steps they—and their caregiver—should take, in your opinion?
The first steps O.J. and I took were to find out more about the disease through research and conversations with ALS professionals. PALS (People living with ALS) and their caregivers must both realize that they will need patience, determination, and a strong will to get through not only those first days after the diagnosis, but each and every day after that. O.J. and I realized that we are each other’s strength.
How did you start learning about the equipment, medications, and daily routines needed to care for a person with ALS?
Research and talking to everyone we could in the field was hugely helpful when it came to learning to operate the equipment and understanding different medications. We also received training from ALS doctors and asked our in-home nursing staff a ton of questions. O.J. and I are very BLESSED to be able to have around-the-clock nursing care that helps greatly with machine and medication education.
Do you have any resources you would recommend for new ALS caregivers?
I would first recommend that each caregiver recognize and decide for themselves to be a resource. It takes digging deep and making up your mind to be there for your PALS. They will need you for your strength, positivity, research and education, and, most importantly, love.
Secondly, do your research to find out all you can about the disease. Research may take the form of speaking with doctors and other ALS professionals, reading all you can on the Internet and connecting with other ALS families and caregivers so that they may share their experiences and knowledge with you.
Another important resource recommendation is connecting with an ALS foundation such as the Brigance Brigade Foundation. The Brigance Brigade Foundation has a wealth of information and direction for any diagnosed or newly diagnosed PALS and their families.
What has been a valuable piece of equipment you have found that helps you and O.J. continue to interact with each other?
The most valuable piece of equipment that helps O.J. and I continue to communicate with each other is his augmentative communication device, his computer. The computer allows O.J. to have a voice and continue to be verbally independent. This makes a huge difference as PALS begin to feel that they’re losing their independence in so many ways. By being able to communicate verbally, their confidence and comfort is hugely increased, as is the comfort of the family/caregiver.
There are various options for augmentative communication devices and I suggest each family looking into what will suit their needs best.
Do you have other caregivers who help you?
I am fortunate to be able to have in-home, licensed nursing help. I am extremely thankful for this help because their presence allows me to take time for myself when needed. Being a caregiver can be extremely stressful and taxing on your mind and body. This is why it is essential for any caregiver, such as a spouse or family member, to take the time to relax, renew, and recharge both body and mind whenever possible.
How do you balance being a wife and a caregiver?
Balancing being a wife and a caregiver is double the work and double the commitment. By nature, women are built to multitask. Having the ability to balance being a wife and caregiver, in my opinion, is a gift from God. My love for both my marriage and my husband are combined with my commitment to my faith which gives me a balance that I would not otherwise have.