ALS Texas

ALL in for ALS 2021 Hero: Nick Sloan

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Wherever our place is in all of this, that’s where I want to go. – Nick Sloan

As a husband, father, and Marine Veteran, Nick Sloan understands the value of service to one’s family, country, and community. Despite receiving a devastating ALS diagnosis in September 2020, he continues to build a legacy that will last far beyond his lifetime. For this year’s 2021 ALL in for ALS Poker Tournament, we are honoring Nick Sloan as our ALS Hero.

Discovering a Passion for Service

Nick was born and raised in Texas and married his high school sweetheart, Shanda. Before their marriage and after graduating high school, Shanda attended college at Baylor University in Waco and Nick enlisted in the Marine Corps.

Nick served in the Marines for eight years and deployed to several locations overseas. He described his service as one of the best decisions of his life because of the sense of direction it provided. “It ingrained in me an esprit de corps and a sense of duty to serve and protect people that has stuck with me ever since.”

Even after retiring from the military, Nick continues to help and protect others through his service. He previously worked for the City of Dallas for the Dallas Fire and Rescue Department. Now he works with Baylor Scott & White overseeing their emergency management department.

Their marriage is now going on 19 years. Today, they call Sunnyvale, a suburb of Dallas, home with their four children and two dogs.

A Path to Diagnosis

Like others with the disease, Nick found it difficult to narrow down when his symptoms appeared. He recalls noticing intense muscle cramping last spring in addition to muscle atrophy and extreme morning fatigue.

Nick’s search for answers continually pointed him back to ALS. “The top things that stood out in terms of the description of what ALS is was that I was within the age range and I was twice as likely to be diagnosed as a military veteran.” After a long process of seeing specialists and performing tests to determine the cause of these symptoms, he visited Texas Neurology. Their team of doctors put him on the ALS protocol.

Nick wasn’t surprised to receive a formal ALS diagnosis on September 8, 2020. “It’s sad, no doubt about it…but there was a sense of relief over me because there were several things within my attack plan that I couldn’t go after, I couldn’t start the fight in many ways,” he shared

Attack Life Sloan

What should have been a bleak moment, Nick used to bring hope and light. “I opened up a new note on my iPhone and instead of calling it ALS…I need an acronym…So it quickly morphed into Attack Life Sloan: my fight plan for what I was going to do every day and every week if I was diagnosed.”

Nick’s philosophy before ALS was to constantly move forward and seek opportunities for growth, while inspiring his children to do the same. ALS has not diminished that spirit. “Surrender is not in our creed. We’re not going to stop just because of some adversity in our lives. I still have life left to live on this earth.”

Friends and family of the Sloan family rallied around him after diagnosis, embracing the phrase Attack Life Sloan and using it as a rallying cry to support the family. Today, Nick sees Attack Life Sloan as a way to serve the ALS community.

“I feel called to do something and advocate, use this disease somehow with the time I have left on earth…Make an impact in the broader sense,” said Nick.

“We can pull that thread of, ‘Hey why are veterans twice as likely to be diagnosed?’ and still at the same time improve the general population’s experience with ALS.”

Embracing the ALS Texas Community

Nick first reached out to the ALS Association of Texas last summer once he came to suspect he would be diagnosed with the disease. “I think it’s been great, there’s so much to learn…It’s nice that the Association can simplify some of those things for us.” From equipment loans to support groups, Nick and Shanda know that ALS Texas is just a phone call away whenever they need them.

In true fashion, Nick has already embraced service in the ALS Texas community mere months after being diagnosed. He helps to lead a new veteran support group that ALS Texas launched this year. His family and friends even participated in the 2020 Walk to Defeat ALS, raising over $13,000 with their team: #AttackLifeSloan.

Keeping Hope Alive

It would be easy for the Sloan family to become discouraged by ALS, but they keep their hope alive. They dream that one day, we’ll live in a world without ALS. Nick wants significant energy brought forth from policy makers, legislators, and financial contributors regarding ALS. He hopes we can find better ways to detect the disease, better treatments, and ultimately a cure.

In the meantime, Nick continues to attack life every day, leaving a remarkable legacy of service and sacrifice for those that will follow him. “He has always been passionate about leaving a legacy…whether it’s through our kids or what he does in his work,” Shanda shared.

When asked how to inspire others with the disease, Nick without hesitation replied, “I would inspire them to attack life. I would inspire them to stay positive…absolutely keep on living, living life to the fullest.”

You can support Texans with ALS like Nick Sloan by joining us for this year’s ALL in for ALS Poker Tournament. Join us on Saturday, January 30 for a virtual poker tournament benefiting ALS Texas. Your support gives us hope that one day, we’ll live in a world without ALS. Will you go ALL in for ALS?

Sign Up for the ALL in for ALS Poker Tournament

Join a Support Group

Donate to ALS Texas

Juan’s Story: Give the Gift of Time

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Family means everything to Juan and Meg. When Juan served in the military, their family felt it was a gift to be able spend time together as they traveled the world, from living abroad in Greece and England. After Juan retired, they kept their adventurous spirit alive, exploring Mount Rushmore and Seattle. Today, they call San Antonio home.

Veterans are twice as likely to be diagnosed with ALS than regular civilians, and Juan is one of those people. But the adaptive nature of the military lifestyle helped prepare his family for the demands of Juan’s ALS diagnosis. “We as a family are still dealing with ALS, but that doesn’t stop us from still living,” says Meg. They moved into a new home to enable Juan to move around safely, and up until the pandemic were still traveling as a family.

A longtime champion for the ALS community, Juan advocates for ALS patients’ rights in Washington D.C. and has worked closely with the ALS Association of Texas to raise funds and awareness. He has seen firsthand the impact the ALS Association of Texas has on the community.

“The Association has been an emotional lifeline. They make it possible for us to understand ALS, understand the challenges. Beyond the resources that the offer, such as wheelchairs, other medical equipment and supplies, they are a human connection that keeps you grounded,” says Juan.

Juan is a true connector and teacher who is generous with his time and story. Juan has even performed standup comedy (in his power wheelchair, of course), finding the humor in his ALS diagnosis.

“ALS for us is just taken in stride. Yeah, I have it, but it’s not going to stop us from greeting the next day and the next adventure.” This year, join Juan and Meg and support Texans with ALS by making a donation today.

Because of you, they have hope for a world without ALS.

Donate Today

The New COVID-19 Vaccines and What They Mean for People with ALS

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Last Updated January 8, 2021

We know Texans with ALS and their caregivers may have questions about the new COVID-19 vaccines. Our team at the ALS Association of Texas is closely monitoring the development of these vaccines and how they are being distributed across the country. Our highest priority remains the safety and well-being of people with ALS, their families and caregivers. Keep reading to see the latest updates on the two new COVID-19 vaccines.

The FDA Has Approved Two New Vaccines

The FDA approved the Pfizer vaccine on December 11, 2020, issuing it for emergency use authorization. The Moderna vaccine was approved for emergency use on December 18, 2020.  Each state is responsible for their distribution plans, but due to limited supplies, both vaccines are being distributed first to front-line health care workers, and residents and staff of nursing homes and other long-term care facilities. The CDC suggested that the initial wave of vaccines be administered in the following order of priority:

  • Frontline health care workers and adults in long term facilities
  • Essential workers
  • Adults with high-risk medical conditions and adults older than 65

According to the Texas Department of State Human Services, “Texas continues to receive doses of the Pfizer and Moderna COVID-19 vaccines, and is distributing statewide to hospitals, pharmacies, local health departments, freestanding ERs and other clinics.” Read more about the vaccine distribution plan for Texas here.

View a map of vaccine providers in Texas. 

Do These New Guidelines Include People with ALS?

Specific diseases like ALS are not listed as a high-risk medical condition in the CDC’s guidelines regarding the first three-part phase distribution of the vaccine. The ALS Association is contacting U.S. governors to ensure that people with ALS are included in the third category based on the respiratory complications from the progression of the disease and the risk it carries.

Is the Vaccine Safe for People Living with ALS?

The ALS Association continues to consult with doctors specialized in ALS treatment and are encouraged by the safety and efficacy data. However, we still strongly advise that Texans with ALS consult with their physicians to discuss taking the vaccine as soon as supplies in Texas allow.

How Do I Prevent Exposure to COVID-19?

Despite the release of the new vaccine, cases are still growing in Texas. Keep yourself and your families safe by following the protocols recommended by the CDC. This includes, social distancing and wearing masks when you’re near people outside of your household, frequent handwashing, and avoiding crowds.

For the most recent information about the coronavirus (COVID-19), The ALS Association recommends that you reference the websites for the Centers for Disease Control (CDC), the World Health Organization (WHO), and state and local health authorities.

For specific information about symptoms you may be experiencing or questions about personal exposure as someone living with ALS or as a caregiver, please contact your physician directly.

If you have more questions about the vaccine and it’s distribution, reach out to our team using the Contact Us page!

FAQ's about COVID-19 and ALS

FAQ's about COVID-19 and ALS

How We're Continuing to Serve People During COVID-19

Patricia’s Story: Give Courage

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Patricia is the captain of her life and her ALS diagnosis, but she didn’t always feel that way. She, like many others with the disease, took time to accept her diagnosis, acknowledge how her life would change, and how her son and husband would be affected.

Walking through the door of her first ALS Multidisciplinary Clinic was a hard step to take—she even tried to leave. Her husband Oran shared that once she was able to accept her diagnosis, Patricia found her courage.

Today, Patricia and Oran are advocates for the ALS community. She and her husband attended the ALS Advocacy Conference in Washington, D.C. in 2018, where they met with members of Congress to advocate for patient rights and research funding.

Patricia and Oran have hope for the future. They’ve worked closely with the ALS Association of Texas, finding the resources and support needed, and knowing that they are never alone on this journey. “They’ve helped me a lot… they’re always there,” Patricia says.

Because of you, they have hope for a world without ALS.

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John’s Story: Give Joy

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Gratitude is what guides John and Jill Lay’s life. Everything from the life they’ve built together and their children and grandchildren, to the simpler things like University of Texas football games and sunsets on the farm bring them joy.

When John received the devastating diagnosis of ALS in 2019, he didn’t let that steal his joy. Instead, he and Jill started searching for resources. That’s when they discovered the ALS Association of Texas and the ALS community that would help them through this journey. It has been an uplifting experience for them to join a community of other families living with ALS, while collecting knowledge and receiving support.

John and Jill continue to live their lives to the fullest, despite the challenges of ALS. In fact, John declared the year of his diagnosis the best year of his life. “It might sound strange, but I am grateful,” he shared, “I’ve had the opportunity to see my children grow up, my family is healthy and happy, and I have the support of an incredible community.”

As the disease progresses and John continues to experience symptoms, he and Jill find comfort knowing they are not alone on this journey and that they can reach out to the team at ALS Association of Texas anytime for guidance and resources.  ALS Texas provides crucial programs to them and others on the ALS journey.

“That is the reason I am so excited to support ALS Texas – for what they do to help people on this journey with this disease,” John shared.

Although a cure may not be available for John in his lifetime, he and Jill are hopeful that in the future, there will be a cure for others diagnosed with ALS. In the meantime, John and Jill continue to live every day with gratitude and joy.

Because of you they have hope for a world without ALS.

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In Memory of ALS Hero Pat Quinn

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“Every August Until a Cure”

Pat Quinn was a native of Yonkers, New York and was diagnosed with ALS in March of 2013, just one month after his 30th birthday. Immediately after his diagnosis, Pat vowed to make a difference for others living with the disease. He fulfilled that promise, establishing himself as a leader in the ALS community, spreading awareness, raising funds for research, and becoming a champion for the cause.

In 2014, Pat co-founded the viral fundraising phenomenon, the Ice Bucket Challenge, alongside Pete Frates and others. ALS was a relatively unknown disease at the time, and the Ice Bucket Challenge not only increased awareness, but also raised $220 million worldwide for research, awareness, and local care.

“ALS is a disease that never stops attacking. It’s relentless, unforgiving, and discriminates against no man or woman. We need to make a change and we need to start now. The Ice Bucket Challenge was an amazing start, but we need to push further” – Pat Quinn

Since the Ice Bucket Challenge, Pat has continued working tirelessly as an ALS advocate, raising funds for research and spreading awareness through Quinn for the Win.

“I was put on this earth to make a difference in the course of such a horrific disease, and I also believe my tough Irish blood has something to do with that.”

Pat passed away on November 22, 2020 at the age of 37, but his legacy will live on in the hearts of the ALS community. Thank you, Pat, for your tireless work to advance research so that one day, we can create a world without ALS.

Because of You: 2020 in Review

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This year our ALS community has come together in new ways, connecting from afar and working together, even when we are physically apart. In the midst of a pandemic your support never ceased. And because of you, we are now serving more people with ALS and their families than ever before.

Because of you, family caregivers are receiving the support and resources they need. Medical equipment is being loaned to people in need and alleviating their financial burden. Youth are sharing their voices and finding strength through shared experiences. ALS clinics are continuing to deliver specialized care and conducting clinical trials. New treatments are on the horizon.

Because of you, our Texas Chapter Events continue to raise crucial funds while moving to socially distanced and virtual fundraisers. And our Walk to Defeat ALS at Home brought Texans together from across the state, allowing us to gather safely even from afar.

This is how your support has made an impact on the lives of Texans with ALS.

Local Care Overview

Our team provides resources and support to people with ALS and their families. Your generosity enables us to continue this critical work, counseling newly diagnosed patients and helping Texans with ALS navigate the disease.

1,004 People with ALS are currently Registered with Our Chapter
(compare to 929 at this time in 2019)

From February to November 2020:

278 New Patients
(compare to 169 at this time in 2019)

1,165 Total Patients Served
(compare to 1,207 in all of 2019)

Learn more about our Local Care Programs.

Equipment Loans

Our Equipment Loan Program provides crucial medical equipment to people with ALS, without charge. COVID-19 impacted this program significantly and due to safety concerns we were unable to access and deliver much of our equipment in our loan closet. We were purchasing new equipment to continue to meet the needs of people with ALS, but saw our funding dwindle rapidly. We asked for your help, and through your support, we were able to get the funding needed to continue this vital program. Now, we’re working with our partners to deliver needed equipment in a safe manner and ensure people with ALS have the equipment needed to navigate their everyday lives.

From February to November 2020:

331 Pieces of Equipment Loaned to People with ALS

If you are a person with ALS or caregiver who needs help with equipment, please contact us.

ALS Multidisciplinary Clinics

In the early days of the pandemic, many of our ALS Multidisciplinary Clinics had to cancel regular clinic days. As time has progressed, each clinic has modified their operations to best serve the safety of their community. Most have now resumed normal operations or offer a combination of in-person and virtual visits. We’ve been working closely with our clinic partners to help keep our ALS community safe and ensure our presence as a resource for Texans with ALS and their families.

We partner with 11 ALS clinics across the state of Texas. You can see the latest update about clinics here.

Staying Connected

Gathering in-person is not an option for our ALS community who are at greater risk to infection during this pandemic. To stay connected we moved all support groups to virtual platforms, which have continued to meet monthly. In addition, we transitioned in-person educational presentations and workshops to virtual platforms and provided statewide access. Seeing an emerging need, we also added a Veterans support group.

From March to November 2020:

120 Virtual Support Groups, Workshops, and Presentations

1,336 People Engaged in Virtual Events

You can view our upcoming virtual events here, and watch recordings of past events.

Community Education

Community support has continued for Texans with ALS and their families. We worked with partners across the state to develop an educational series of presentations and interactive workshops. This included a clinical series, focused on different aspects of the ALS clinic, connecting healthcare professionals with the patients they serve.

View the Clinical Series

New Family Programs

We’ve been listening closely to our ALS community to discover where additional resources are needed. Two big needs have emerged: greater support for caregivers and programs for youth and children. This year we have begun rolling out these virtual programs.

Learn More About our Caregiver Program

Learn More About Our Youth & Children Program

Walk to Defeat ALS at Home

The Walk to Defeat ALS 2020 looked very different this year. Although we were unable to all gather in-person, we still stayed connected. Our Live Opening Ceremony featured teams from across the state and conveyed the incredible energy of our ALS community. Big News: We met our goal of raising $1 million. Thank you to everyone who participated in the Texas Walk to Defeat ALS !

Watch the Texas Walk to Defeat ALS Live Opening Ceremony

Research Progress

Because of you, research is advancing and a potential treatment is on the horizon. In September, the New England Journal of Medicine published the results of a phase 2 trial (known as CENTAUR) of the compound AMX0035, produced by Amylyx, a Massachusetts-based pharmaceutical company. The results of the trial were very promising – people with ALS receiving this drug experienced a significantly slower decline in disease progression and lived an average of six months longer, compared to those on a placebo.

The ALS Association and I AM ALS have issued a petition calling on the drug company and the FDA to make the treatment widely available as soon as possible. To date, the petition has received more than 50,000 signatures.

Advocacy

On November 11, the Senate recommended $40M for the Department of Defense ALS Research Program (double the previous year’s amount) and $10M for the CDC National ALS Registry in their FY2021 appropriations bills. These victories help us better support the ALS community and bring us one step closer to defeating the disease.

Next, we wait for the House and Senate to agree on final funding levels. We’re cheering on our ALS community who are continuing to fight to make this a reality.

Looking to the Future

Because of you, we have a lot to look forward to in the new year. In January, we will launch new support groups for elementary and middle school children, as well as teen and young adult groups. We will also kick-off an educational series for people with ALS who have been newly diagnosed and their families, providing them with the resources needed for their journey. This will include information about current research, multidisciplinary care, employment and insurance, and navigating the disease.

Because of you, we have been able to increase access to support groups, presentations and workshops via virtual platforms. As we continue to navigate the pandemic and look beyond this crisis, virtual programming will continue to be a critical part of our work, enabling us to reach Texans with ALS and their families in all corners of the state. Even when we can safely resume in-person gatherings, we’ll continue to provide a place to virtually connect, learn, and share.

In the face of the pandemic, you made this crucial work possible. Thank you.

Young Caregivers in Texas Aren’t Alone

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It’s nearing the holiday season, and that means it’s time to focus on family and quality time. Especially during this time, it’s important to appreciate the dedicated caregivers working tirelessly for their family. 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.

This National Family Caregivers Month, the ALS Association of Texas is recognizing, supporting and empowering family caregivers. In this third and final installment to our 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 last year 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! In January 2021, ALS Texas will launch 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 in January, and we’d like for you to be a part of it.”

Wife, Partner, and Caregiver – The Balancing Act

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November is National Family Caregivers Month and the ALS Association of Texas has dedicated this month 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

Trimming the Fat: A Husband’s Perspective on Caregiving

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While Tyler Wood may not like being in the spotlight and does not consider himself a leader, the way that he cares for his family and for others (and even for himself), shines a much different light.  Leaders are oftentimes not specifically chosen for the role, rather it finds them, and they either sink or swim.  Family Caregiver Tyler Wood has chosen to swim in all of the uncharted waters and realizes that not only is life (especially life as a caregiver), a triathlon, but it is also a team sport. In sharing his journey, he hopes to “lift others up and support, and hopefully help them out by sharing my story; giving them tips and tricks that I use” as a caregiver.

Tyler is husband to his beautiful wife, Mylinda, and they recently celebrated their 23rd anniversary. He is also father to three boys; ages 17, 13, and 10. Their 10 year-old son has special needs and is living with Down Syndrome. Tyler also works full-time at a wonderfully supportive architectural firm, and enjoys smoking and curing meats, and making knives – both as hobbies and side businesses.  Tyler is also the family caregiver to Mylinda who was diagnosed with ALS in 2018.

November 2020 is National Family Caregiver Month, and the theme for this year’s focused and intentional appreciation and dedication to family caregivers around the nation is Caregiving Around the Clock.  If you ask Tyler about the 24/7, 365 days a year commitment of a family caregiver, he sums it up perfectly:

“It’s about trimming the fat, really, and figuring out what’s important stuff…but with self-care, you have to make sure that you’re not trimming all of your stuff out. You have to give yourself time, and that’s part of the care of your spouse – is caring for yourself. Because when you take care of them, you give out of yourself, and it’s a bucket of water.  Every time you pour out of yourself a little bit, there’s less in that bucket. When that bucket is dry, you’re not going to be of use to yourself or your spouse. It’s every minute of every day, because you’re not just caring for your spouse in that daily care, you’re caring for yourself so you can continue to care for your spouse.”

You can’t punch a clock to the end the day when you are a family caregiver, and it can be hard on the caregiver physically.  However, Tyler would challenge that the “mental is the most strenuous, tiring aspect of the entire thing. If you’re not taking the time to rest your emotions and your mind, you’re not gonna make it. You’re just simply not.”

Tyler readily shares that the ALS Association of Texas has been helpful in providing equipment as needs arise. He adds that he is thankful that in two years, Mylinda has progressed slowly, and they have not needed much of that just yet.  However, what has been most helpful to Tyler and Mylinda are the information and contacts, especially in the Lubbock and West Texas area where resources are more limited.

“Through ALS Texas, we were also able to receive information about clinics throughout the state, and get tied into those, as well as connect with other people in the area who are struggling with ALS.”

Information is especially critical in navigating the day to day challenges and often-times new normals that are part of the overall ALS experience. Tyler’s biggest struggle as a male caregiver? “Thinking like a woman. You have to somewhat get in a woman’s head as a male caregiver and that’s dang near impossible for us guys! It’s the mental game that you have to play with yourself. As men, we don’t think about that stuff, but the ladies, they still want to look pretty; they still want to feel pretty.  Feeling pretty for a woman is huge.”  And the biggest challenge within this? Sharing in his genuine approach that always contains some humor and laughter, Tyler quickly offers, “I do not like touching feet.”

He adds with a more serious tone, “clipping her toenails, painting her toes…you know doing all that stuff.  You really start to think about what attracted you to your spouse. It’s almost like you gotta think about being the opposite sex, and what they think is important and make that important to yourself as well. When you take the time and make her feel pretty, it’s amazing the glow that comes out of her, and the more zeal for life she has, despite the situation she’s in.”

In his last words of encouragement and support for all family caregivers, Tyler adds, “Hug your spouse. No matter what you’re going through, they’re going through it worse. Hug them, love them, show them compassion.”

Watch Tyler’s full interview below.