ALS Texas

2021 Shoot Out ALS Hero: Stacy Brown

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Embrace everybody and every day, enjoy every moment and say what you need to say to those around you. That is the essence of #JustLiving. Stacy Brown and his family developed this philosophy following his ALS diagnosis. This year, we have the pleasure of honoring Stacy Brown as the 2021 Shoot Out ALS Hero.

Stacy was raised by amazing parents and grew up in a small town in northeastern Arkansas. He moved to New Orleans the day after he graduated from high school.  After attending LSU and graduating from Centenary College he moved to Texas, and has lived in Houston since the late ’80s. There he met his future wife, Kellye.

Stacy and Kellye first met during a Sunday school class in Houston. He was the president of the class and she was there with a group of friends. After leaving the class, Kellye recalls telling her friends, “I’m going to marry that man one day.” And marry him she did.

Following five years of building a friendship, Stacy finally asked Kellye to be his girlfriend. They were engaged after three months of dating and married six months after that in 1995. A few years later, they had  boy/girl twins, Emily and Scott.  Today, Kellye and Stacy have been happily married for 25 years and still call Houston home.

The Beginning of an ALS Journey

Stacy started to experience slurred speech in 2020. He and Kellye thought he may have had a stroke. They decided to consult with a friend who was a neurologist at Houston Methodist to be sure. Through a process of elimination, Stacy received a formal diagnosis of bulbar onset ALS in October 2020. Bulbar onset ALS is when symptoms first affect the muscles of the face and throat.

As Stacy’s symptoms progressed, speaking became increasingly difficult, and he decided to retire in December 2020 after a successful career in sales and marketing.  While working, Stacy used those skills to serve others. “I’ve always enjoyed doing philanthropic work. It was a great way to give back to the community,” Stacy shared. He is a former Chairman of the Rotary Smith Award and a member of the Lomdardi Award Committee and is currently a Vice Chairman of the Wine Committee of the Houston Livestock Show & Rodeo as well as serving on the World’s Championship Bar-B-Que Committee for over 25 years.

Joining the Fight Against ALS

“I was shocked to find out that there is no cure and that there are very few treatments,” Stacy shared. While searching for organizations that supported the fight against ALS, he came across the ALS Association of Texas. They were then able to get connected with resources, including one of our multidisciplinary clinics in Houston.

“We have been utterly blown away by the level of care afforded to, not only the ALS patients, but their caregivers as well,” Stacy noted about the ALS clinics. “Seeing everybody in one day is incredibly helpful. We must increase funding in order to provide local ALS clinics across the state.”

Shortly after getting connected with the resources at ALS Texas, Stacy looked for ways to impact the organization himself. “From my previous philanthropic work, I had skills that could be utilized for raising money and awareness.” After connecting with an ALS Texas board member, Stacy joined the ALS Texas Regional Leadership Council.

We must increase fundraising for additional research in hopes of curing ALS so others don’t have to go through this.

Foundation of Faith

Kellye noted that Stacy’s faith plays a key role in his desire to serve others. “Regardless of what we are experiencing, God teaches us that our focus is not inward, but outward. Faith has always been and continues to be, the driving force in our family. It will sustain us through our ALS journey.”

Knowing that his life is being cut short by this terrible disease, Stacy makes it a habit of expressing the important thoughts and feelings that he may or may not have said to his friends and family.

Our love for others is our grateful response to the love God first demonstrated to us. 1 John 4:19

In the short few months since Stacy’s diagnosis, Kellye said “So many others affected by an ALS diagnosis have come into our lives and I can only attribute that to God’s providential care.”

#JustLiving

Before the ALS diagnosis, Stacy was blessed with many opportunities. He has traveled extensively, become a sommelier, played guitar in bands, wrote and published music, and got his sailing license. However, his biggest accomplishment is his twins, Emily and Scott, who are both college graduates and are currently working in the Houston area.  They are his pride and joy.  Today, he is not letting ALS keep him from enjoying the little things. “I’m taking this time to just live and enjoy what I’ve been blessed with, mainly my family and my friends.”

He and his family coined #JustLiving, a philosophy to guide them through the ALS journey and beyond. The essence of #JustLiving is to embrace everybody, experience every day, enjoy every moment, and say what you need to say. “We’re going to live every day as fully as we can until we can’t,” Kellye tearfully shared.

Encouragement for Those on The ALS Journey

The ALS journey can feel isolating, so it is important to stay connected with others. “Surround yourself with a group of people, family, friends and experts who can support you,” Kellye suggested for others on this path. The ALS Association of Texas provides a network of support from ALS clinics to support groups.

“Without the ALS Association, we wouldn’t have a pathway to direct dollars to research and clinical care, and that’s a big deal!” Stacy shared about ALS Texas. He is both hopeful for a cure and hopeful for new treatments to improve the quality of life.

You can support Texans with ALS like Stacy Brown by joining us for the Sixth Annual Shoot Out ALS Sporting Clay Shoot in Houston, Texas on March 23, 2021. Shooting enthusiasts will participate in an afternoon clay shoot followed by cocktails, dinner, and awards at the Greater Houston Sports Club.

Not a shooter? No problem! Dinner-only tickets are available for those who do not want to shoot, but still want to support the fight against ALS.

Register for Shoot Out ALS Houston

Donate to ALS Texas

One Day… A New Series to Celebrate Our ALS Texas Family

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A lot can happen in one day.

For many of us, our days feel like a blur of appointments and tasks to be completed. We often do only the bare minimum of what we need to stay afloat. Other days, things go our way, we are checking things off of our lists, we receive good news, we carry out or witness good deeds, and we feel like a superhero.

Sometimes we think, “I’ve got this!”, and feel like we are walking on sunshine. Then the clouds move in, and there are days we feel like we have never been more lost and without any sense of direction.

Simon Sinek teaches us to have an infinite mindset. “In an infinite game, there is no winning. There is only ahead and behind.” He challenges us to change our narratives and to stop labeling days as either good or bad. Instead, we should think of days as either ahead or behind. It reminds us that life is a journey of our days that some might even compare it to an amazing race. We tend to forget that each and every day is more than just that single time stamp. Each is made up of many different moments.

Nobel Prize-winning scientist, Daniel Kahneman, suggests that we experience approximately 20,000 moments every day. A moment is defined as a few seconds in which our brain records an experience. These moments are captured as positive, negative, or plain neutral. Rarely do we remember neutral moments, but instead we remember the positive and negative moments.

“Each day… is a gift; don’t send it back unopened.”- Unknown

This quote reminds us to slow down and stop focusing on the next thing and to instead enjoy what we have right in front of us, to making these moments count. That might mean working to make those moments memorable and we want to help that happen.

Beginning in February 2021, The ALS Association of Texas will launch a new five-minute interview series entitled, “One Day…” We will visit one moment of One Day in the life of members of our ALS Texas community and celebrate our ALS Texas family. Do you have a memorable moment to share?  We want to hear about it!

Send your One Day stories to Tonya. Maybe it’s something like a “Walk and Roll” that one of our ALS families told us about. A wife and her husband with ALS take an afternoon stroll together: hers is a walk, and he puts some miles on his power wheelchair! They get fresh air, sunshine, and they do it together. Now that is a moment to capture!

Together, we will savor the sweetness and celebrate victories big and small, friendships, creative approaches to living life to the fullest, family, and just plain good stuff. We will lock arms not only in our fight against ALS, but in creating more ahead days than behind, and in our determination and hope that there will One Day be a world without ALS.

Young Caregivers in Texas Aren’t Alone

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We must never underestimate the strength that caregivers have for providing support to those who need it most, nor the toll that it takes upon them both emotionally and physically.

Last year for National Family Caregivers Month, the ALS Association of Texas focused on recognizing, supporting and empowering family caregivers. In this third and final installment to our three-part caregiver series, let’s dive into a caregiver perspective that’s frequently overlooked.

We mostly hear of advanced illnesses throwing spouses and life partners into the primary caregiver role for their loved ones. However, we rarely acknowledge the many young adults, youth and children that are providing care for a parent.

Approximately 1.4 million children and youth from ages 8 to 18 in the U.S. are familiar caregivers of a family member. They support both activities of daily living (ADLs) and instrumental activities of daily living (IADLs). This includes managing complex assistive devices, feeding, bathing and toileting, among other activities.

In Texas, we know that there are more than 2,500 youth and children involved in the ALS experience.

The ALS Association of Texas worked in the last year to developing educational resources and programming for young caregivers involved in the ALS journey. During this process, a phenomenal group of young leaders emerged, and just like ALS, they don’t stop. Abby Estrada, LCSW, Jothi Gupta, Connor Hadley and Gabriel Poveda all know first-hand what it’s like caring for a loved one with ALS, specifically their fathers. Keep reading to hear more about their stories:

Abby Estrada, LCSW

Abby Estrada’s father was received his ALS diagnosis while she was in high school. She helped provide much of his care until he passed away while she was in college. Abby took her experience and passion for helping others into her career as a licensed clinical social worker in Texas. Abby heavily involves herself in our fAmiLy talkS workshops and is looking forward to also being a therapeutic resource for our ALS Texas community as a LCSW.

When it comes to those difficult but crucial talks about ALS, Abby shared, “Keep the conversation ongoing with your children. Check in with them, especially at times when ALS progresses and your ‘new normal’ is changing. Listen—perhaps the best thing you can do is be there and listen. Your children may be angry, confused or sad. Hear them and allow them their feelings.”

Jothi Gupta

17-year-old Jothi Gupta launched the It’s Okay to Not Be Okay: A Closer Look at Family Illness and How to Navigate It podcast earlier this year. Perseverance is also way of life for her family, who as a whole, has shared their poignant journey with ALS with our community. Jothi is also the editor-in-chief of her school newspaper, a leader on her school’s debate team, and co-founder (along with her sister) of the RG Foundation for ALS Awareness.

“This is such a painful disease to watch slowly take my Dad away and we want to do everything in our power to fight back,” she shared. Jothi also noted that she is passionate about resiliency and is looking forward to connecting with and supporting other teen caregivers in Texas.

Connor Hadley

Connor Hadley was a pre-teen when his Dad, Collin, was diagnosed with ALS. He since has watched ALS progress and rob his Dad of so much. Now at the age of 17, virtually every day brings a new normal.

The Hadley family believes in making each day count.  Connor just attended his last youth church camp and loves playing football. He still puts his experience as young caregiver into action. Connor  believes he has a gift of helping people do the right thing and wants to support youth and children in Texas. He added that while he is a teenager knocking on the door of adulthood, he was much younger when his Dad was first diagnosed with ALS, and he believes he can really relate to that age group.

Gabriel Poveda

Gabriel Poveda is wise beyond his 20 years and has likely experienced more than just about anyone in his sophomore class at UT Austin.  This year’s National Family Caregivers month theme is Caregiving Around the Clock, and Gabriel can certainly attest to this being true.

“My Dad was diagnosed November 14, 2017. I had just turned 17 as well. From 2017 to August of 2019, I was very involved in my father’s day-to-day caregiving,.” Gabriel Shared. At the time, he was still in high school. “I had to make sure that I got home on time so I could give him is IsoSource feedings. I had early release at school, and got home around 1:00, and would stay with my Dad until about 6:00pm when my Mom got home from work, and then she would take over.”

Young caregivers experience an impact on their friendships, relationships, clubs, etc., Gabriel added, “You forget about a lot of things; emotions foremost among them, but also other relationships, and other bits of everyday life that you previously thought were important.”

Gabriel learned about a student-led program at UT Austin which pairs young people with senior citizens for weekly/bi-weekly chats. “It’s an inspiring group of my peers and it got me thinking: why not for ALS? It would require, time, money, and most importantly people, but I believe it is plausible.”

So what’s next for young caregivers?

We’re taking Gabriel’s feedback to heart! ALS Texas has launched online peer support groups for young caregivers involved in the ALS journey. The inspiring young people above will co-facilitate this group, continuing to change the world one day at a time. Each of them want to connect with other young people who feels isolated and alone. Young caregivers in Texas aren’t alone.

Gabriel extends this invitation to all of our ALS Texas young caregivers, “I encourage you to reach out… we’re starting online peer support groups, and we’d like for you to be a part of it.”

View the virtual support groups schedule

Wife, Partner, and Caregiver – The Balancing Act

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The ALS Association of Texas is dedicated to recognizing, empowering, and supporting family caregivers throughout Texas. Our hope is to share the different perspectives of the ALS experience and walk alongside every family member throughout the journey—the journey that is a marathon and not a sprint.

Did you know that in the United States, about one in 10 caregivers are providing care for their spouse? Stamina and success as a spousal caregiver mean knowing when to ask for help, finding time for yourself, and making peace with your partner. Now you have all the answers. That’s the end of this story, right? Not. Even. Close. All of the things mentioned above are so much easier said than done.

“Many people will say that they will do as much as they can until they can’t anymore, and that’s not good for anyone,” says Dr. Jacobs, author of Meditations for Caregivers: Practical, Emotional, and Spiritual Support for You and Your Family. Friends and other family members are often more willing to help than you think, so don’t steal their chance to be a blessing! (Know when to ask for help)

In visiting with families throughout the state, I’ve asked many wives this question. “What do you need most that ALS Texas is not currently providing?” More times than I can count, the answer has been, “What I need, you can’t help with. I am no longer a wife; I’m a caregiver, and you can’t fix that.” While it’s true that ALS Texas can’t change that, we can help provide more education, programming and support on how to take control of that balancing act and not lose what you value most in your marriage.

That ultimately starts with MAKING time for self-care! Start with just five minutes a day and add a minute or two as you can; even if you have to go into a closet to breathe deeply, read, meditate, and have some alone time, those few minutes can make a huge difference. One of the best pieces of feedback I’ve heard from a wife/caregiver is, “He can be very dependent on me, but I tell him that I need some uninterrupted time for myself.” (Finding time for yourself)

The Gupta Family

In September, we were honored to join the Gupta family from Plano, TX as they invited our ALS Texas community to walk alongside them in their genuine and very poignant journey with ALS. During the Gupta’s Family Talks special event, we listened as Hema Gupta emotionally shared, “I went from being a wife…to a caretaker. I think I….I honestly don’t think about any of that stuff, because it’s too hard, and I refuse, I refuse to let to let this…ALS, be the defining of the family.”

In her recent column We Are Both Patients, Kristen Neva shared, “I never imagined I would be providing this type of care for my middle-aged husband.” She adds that caregiving for her husband who has ALS, is stressful for them both, but their strong relationship helps them through the tough times.

“Spouses need to pause and recognize that their marriage has changed completely and may never return to the way it was,” says Dr. Denholm, PhD, a psychologist in West Palm Beach, FL, and author of The Caregiving Wife’s Handbook. “If the sick spouse is still able to communicate, I always recommend that couples talk about the changing relationship openly and honestly, and as soon after it starts changing as possible.” (Making peace with your partner)

As a caregiver, do you and your loved one living with ALS have an agreed-upon signal to let each other know it’s time for you to take a break? Many spouse caregivers struggle with the “G” word – guilt – and on a daily basis; they feel guilty for doing too little or too much. It shouldn’t be wrong to say, “I am your wife, above all, and not only a caregiver now.” Many spouse caregivers throw themselves into their new role so wholeheartedly that they neglect their own care or forget to consider how their spouse might be able to contribute.

Cultivate healthy communication as a practice. Being able to talk to your spouse candidly is important for every marriage, but it’s especially crucial for couples in which one person is taking care of the other. You may need to have delicate or difficult conversations about everything from toileting to the changing nature of your intimacy; the key is to not avoid those conversations. After all, caregiving is a partnership between the giver of care and the receiver of care. In practicing good communication as a husband and wife, you continue to focus on the art of adaptability. Experiment, think outside the box, and be creative in adapting to new normals – bring sexy back!

Knowing when to ask for help, finding time for yourself, and making peace with your partner are some of the biggest secrets to success in the balancing act of the wife, partner, and caregiver marathon. If you’re looking for ways to build these practices into your family’s ALS journey, our ALS Texas Caregiver Groups are a tremendous resource for spousal caregivers. We even offer a dedicated group for women, Brewed Awakenings.

Join a Virtual Support Group

ALS Caregiver Recognized for Excellence in Caregiving

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Caregivers of people with ALS are crucial in the care of their loved ones battling this disease. Being the primary caregiver for a loved one with ALS can be stressful – not only are you on call 24/7, but you may have additional outside responsibilities, like working a full- or part-time job or caring for additional family.

ALS caregiver Trixie Stanford was honored at the Gordon Hartman Family Foundation‘s 2nd Annual Excellence in Caregiving Awards in April. A Belton resident, Trixie serves as the primary caregiver for her son Charlie.

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ALS Can Never Steal the Joys of Motherhood

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In 2001, Patricia and Oran Hamilton welcomed their son Patrick into the world. As Patricia started this new chapter in her life, she knew that she wanted to cherish every moment of motherhood. Over the years, she watched as her son grew, encouraging his love of learning.

When Patrick was 11, Patricia started experiencing weakness in her hand, and went to a neurologist who gave her three different diagnoses. In March 2014, she was finally diagnosed with ALS.

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New Salsa Business Provides Purpose After an ALS Diagnosis

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skips-salsa
Tami Potts has been canning her homemade salsa since her 20s.

Tami Potts has been canning her homemade salsa since her 20s. People have always told her that she should start her own salsa company, but between raising four kids and working, she never had much time to pursue that opportunity.

In the summer of 2016, Tami’s right hand started going numb. Her doctor told her it was time to consider another profession, as she spent many long days as a mail carrier. Tami’s daughter suggested finally starting up that salsa business.

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Houston Marathon Participants Run for a Reason: To Fight ALS

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On Sunday, January 14, 35 runners participated in the Chevron Houston Marathon Run for a Reason Program in support of the ALS Association of Texas. The Run for a Reason program “connects the philanthropic community to passionate race participants willing to fundraise and raise awareness for meaningful causes,” according to the Marathon website. This is the eighth year that the ALS Association of Texas has been chosen as an official Charity of Choice.

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Support Plays Important Role in Living with ALS

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By Ben Stephens

Ben and his family

Like most people with ALS, I’d noticed some changes long before the diagnosis came. In August 2013, I began having difficulty buttoning my shirt. After seeing three different neurologists, receiving an incorrect diagnosis of multifocal motor neuropathy, and a series of tests like a spinal tap and MRI, I finally received a diagnosis of ALS in December 2014.

ALS has forced a lot of changes on my life. As an estate planning and probate attorney, I have a number of clients who rely on me. After my diagnosis, I hired an associate, which allows me to continue to work while living with the realities of ALS. I quit driving about two years ago, and I’ve learned to work remotely. I had to sell my house because of the stairs, and my family and I moved to a duplex. ALS has affected almost every area of my life.

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Austin Family Grateful for Outstanding Support on Their ALS Journey

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By Jackie Barry

Jackie Barry lives with her husband Tom in Austin, Texas. She was diagnosed with ALS in 2016 and has been involved with the ALS Association since then. Read her story below.

In early 2015, I began having a speech problem, like a lisp, which seemed to get a little worse when I was stressed or tired. We were in the midst of getting home repairs done, so I thought it would just go away if I ignored it.

In August that year, I saw the doctor about it, and he suspected it could be a stroke or a brain tumor, among other things. I had an MRI, MRA and a carotid sonogram done, which all came back normal. Shortly after that, I was referred to a neurologist, who sent me for a swallow test, after which he believed it was a neuromuscular problem. He then referred me to Dr. Carlayne Jackson at UT Health in San Antonio. Dr. Jackson diagnosed me with ALS in February 2016.

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