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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.

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

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.

Walk to Defeat ALS Hero: Maria G. Sanchez

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Written by Maria’s daughter, Melissa.

Maria was a hero to everyone for many reasons. For her closest family, friends, and mentees it was because they could feel that Maria possessed the ability to see the very best in them no matter what. They knew that her occasional tough love was actually just the frustration she felt from them not living up to their own limitless potential.

Quite literally, she was a hero because she was a registered nurse, a nurse manager at University Medical Center (UMC) in El Paso, and a clinical instructor for The University of Texas at El Paso School of Nursing. She was a go-getter, a leader, and well-respected at the hospital and in her community. Maria was dedicated to patient care, and accomplished many “firsts” for UMC. She was a mentor to many. So much so that her UMC family continues to raise awareness for ALS and joins the Walk every year in her memory.

“She was full of life. We would go out shopping, and she would out-last everybody,” her daughter Melissa says. She always had an inappropriate joke, a Maya Angelou quote, uplifting advice and a prayer ready for any situation and any person that needed it.

Maria worked to instill strong values in her children, Melissa and Francisco, and sparked their desire to give back. Her motto was: “To whom much is given, much is required.” Melissa and her brother saw this in action, as their mother continuously helped family and gave back to her community, never expecting anything in return.

When Maria was diagnosed with ALS in August 2015, she didn’t tell her children or her family until January. She wanted to protect them, as she always did. She took the initial heartache, head on, with only her husband David by her side. She referred to him as her rock and her angel because he stood by her side through every heartbreaking battle so that their children and family didn’t have to worry. And they didn’t because they knew she was in the best hands.

During her battle with ALS, her humor and unwavering faith gave her family peace. Her smiles in photos were bigger than ever. Her daughter believes she did this consciously in order to show her loved ones that not even ALS could destroy her fighting spirit and the love she had for them. Her whole life, she embodied the Maya Angelou quote, “We may encounter many defeats, but we must not be defeated.”

After Maria passed away, her family felt called to honor one of Maria’s final wishes, “Life goes on,” she said, “You have to go on.” There was no better way for them to go on than to honor her life by continuing her legacy of giving back by starting the Walk to Defeat ALS team Maria G. Sanchez’s Warriors and volunteering with the ALS Association of Texas. They have even started reaching out to corporations to help secure corporate sponsorships for Walk to Defeat ALS. Their hope is that their efforts contribute to helping people with ALS and their families in even the slightest way.

“I want to tell people with ALS that you are not forgotten. You are not alone. My Mom at times felt like she was a burden to us, but it is the honor of our lifetime to be there for you in your time of need, just as you have always been there for us. You’re our heroes and you will always be our source of strength.”

Want to get involved and support Texans with ALS like Maria?

Join Maria G. Sanchez's Warriors

Start Your Walk to Defeat ALS Team

Walk to Defeat ALS Hero: John Lay

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John Lay is a 3rd generation Austinite and a 4th generation Texan with a long history of being active in his community. He served on the Austin ISD school board for eight years and furthered his love for the river by serving on the Colorado River Alliance board for twenty years. Recently, John was bestowed the honor of having their annual River Hero award named after him. Family is everything to John and his wife Jill. Their tight knit family of five children and eight grandchildren must agree, as they all live within three miles of one another. John is outgoing, has never been afraid of a microphone or podium, and his children often joke that they are jealous of their parents’ fun social life and incredible friendships. John often says, “Surround yourself with people that make you smile.”

In early 2018, John started to have weakness in his arm. He consulted multiple doctors and went through many tests in search of an explanation. After no diagnosis had been made, he started to suspect that something serious was going on but didn’t want to worry his children. After a muscle biopsy later that year, a motor neuron disease was indicated. In early 2019, he was referred to Dr. Stanley Appel at the Houston Methodist ALS Clinic, and was diagnosed with ALS. The prognosis for survival with ALS patients is two to five years.

John and his wife Jill sat down with their family and shared the diagnosis without shedding a tear.

“I’m 70 years old, I’ve lived a long great life. Don’t be sad for me. The good news is we know this now and we have time together,” he told his children.

As soon as he was diagnosed, John and his family got to work researching everything they could about the disease and found the ALS Association of Texas. John and Jill joined the monthly support group and his children started their Walk to Defeat ALS team.

At first, John was hesitant to tell his story. He saw people in the support group and at the ALS clinic who were younger, with small children, and in later stages of the disease. When diagnosed, John was in his seventies, at the beginning stages, had watched his children grow to adulthood and have children of their own. He felt fortunate compared to many other patients.

Then John had a thought: “How do we raise awareness for this, not just for me, but for everyone with ALS?” As his children worked on their Walk team, they learned more about ALS advocacy and the work of the ALS Association of Texas. They talked to their dad about the impact of telling his story. John realized that “If my story can help other people and raise awareness, let’s go big for the Walk. I’m ready.”

The Lay family started recruiting friends and family to join Team John Lay for the Walk to Defeat ALS. “Everyone who has ever met our dad just loves him… They would do anything for him,” says his children. More than 150 people walked, 340 donated, and they raised $55,000!

They continued their Walk celebration at an after-party at a friend’s restaurant where John gave a speech.

“This has been the best year of my life,” John said. “The support that my family, friends, and children’s friends have given me has been incredible. This is a journey and I’m on the journey, but as I always tell people, everybody’s got something. Each person has situations with their own family, you just deal with those things, you support one another and keep smiling. I wake up every morning and I’m happy to be here and I try to make the best of each day.“

John was accepted into Dr. Stanley Appel’s groundbreaking Treg trial in March, just when COVID-19 hit Texas and everything shut down. But John was determined. “If I can be part of the science to move the ball forward to slow the progression or find a cure, to be able to contribute that, then I don’t feel like I’m sitting down not doing anything,” he said. Right now, John doesn’t believe he will see a cure in his lifetime. But Dr. Appel’s trial has been shown to slow the progression of the disease, and that could make all the difference for a person living with ALS. John isn’t participating in the clinical trial for himself. He’s doing it to help others in the future. And he believes that if someone is going to find a cure, it’s likely to be Dr. Appel and his team.

The ALS Association funds Dr. Appel’s Treg study and supports the Houston Methodist ALS Clinic, which is why John and his family are passionate about raising funds through the Walk to Defeat ALS.

Since his diagnosis, John has lost the use of his arms. But he has still made it a priority to live life to its fullest. After his diagnosis in 2019, he took a kayak trip down the Colorado River, went to Wrigley Field, and visited the casinos in Lake Charles. Today, he’s spending as much time as possible with his family and friends, which has been challenging during the pandemic.

This year, the Walk to Defeat ALS is going to be much different due to the pandemic. Instead of bringing teams together for one large event, as we have done in years past, teams are encouraged to host their own Walk to Defeat ALS at Home, in the way that works best for them. On October 31, instead of bringing together a team of 150, the Lay family will gather and walk around their neighborhood, at a social distance, walking in unity with the ALS community across Texas.

Fundraising during a pandemic is a challenge, “This is a disease where you can’t sit on the sidelines for a year or two because of the impact of COVID. ALS can’t wait. It’s going to be harder to get federal funding during the pandemic, so it’s going to be things like the Ice Bucket Challenge, the Walk, and individual donations that moves the needle closer to slowing the progression of ALS,” his children say.

John is grateful for his circumstances, which can be a surprising thing to hear from someone who has been diagnosed with ALS. He has chosen to approach this in a positive way, cherishing each day he spends with his loved ones, sharing his story, participating in the clinical trial to move research forward and raising funds so that one day we can live in a world without ALS.

Want to get involved and support Texans with ALS like John?

Join Team John Lay

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Walk to Defeat ALS Hero: Judy Baucom

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Dawn and Shelley have been participating in the Walk to Defeat ALS in Dallas for the past nine years in memory of their mom, Judy Baucom.

Shelley says, “Mom was the most selfless person I’ve known, who always put others first and loved big.  She was a great listener and gave the best advice – my kids still talk about things that she had told/taught them!  Up until the end, she wanted to make sure her family and those around her were taken care of – her concern for others took priority.”

True to her nature, Judy had been taking care of her sister, who was battling cancer, when the first signs of ALS started to appear. She was dropping things a lot, tripping occasionally, and her speech was a bit slurred. But Judy and her family all thought it was due to the stress and exhaustion due to caring for her sister. “It all makes sense now, but at the time she just chalked it up to ‘I’m tired, it’s old age,’” says Dawn.

Judy pushed past her own symptoms and continued to lovingly care for her sister until she passed away in June. Three days later, Judy had a fall and her left side went numb. Everyone thought it was a stroke, due to the stress of losing her sister. She went to rehab, and her family noticed that even with physical therapy, she still was not improving, but instead getting worse. In September, she went to the ER with leg weakness and tremors, and after seeing a neurologist for tests, was diagnosed with ALS.

As soon as her family found out about the diagnosis, Dawn and Shelley researched the disease and signed up Team Judy for the Walk to Defeat ALS in November 2012.

Judy helped design the team shirts for her Walk team. She loved hummingbirds, and included one on the front of the shirt. Her Occupational Therapist, upon learning that Judy was an artist, created a stamp of Japanese characters for “hope” and “strength” that she put on the back of the shirt. He even bought her a watercolor kit so she could continue to paint the hummingbirds she loved.

After her fall, Judy lost the ability to speak, and relied on a small whiteboard to communicate with her loved ones, often writing words of encouragement and inspiration for her daughters. Even in the midst of ALS, she was still caring for others.

Judy’s health declined quickly, and in October went to a hospice facility in Tyler.  She passed away on November 10 – the same day as the Walk to Defeat ALS, and merely six weeks after Judy had been diagnosed. The night before, Dawn and Shelley visited their mom, knowing she did not have much time left, said their goodbyes and told her they were going to the Walk to Defeat ALS. They got the news early the next morning that she had passed away. “She knew we were walking. We always said she wanted to be there with us,” says Shelley.

At the Walk to Defeat ALS, in addition to friends and family, Judy’s nurses, physical therapists, and other people she had briefly met during since her ALS diagnosis, joined Dawn and Shelley. Judy had known some of these people just a short amount of time, but she had made a significant impact on them and inspired them to join the Walk in her honor.

“Mom not only showed strength through this whole process, but beautiful FAITH.  She was continually thinking of others and shared her Faith and Love in the Lord.  What a wonderful Legacy she left behind, and we have been so blessed to have her as our mother and friend.”

Dawn and Shelley have continued their mom’s legacy in the nine years since she passed. Over the years, they have hosted fundraisers for their friends and family, auctioned off Judy’s paintings to raise funds, and hosted a BBQ on Walk day for the Dallas ALS community, all to fulfill the vision of creating a world without ALS.

“ALS is a horrible disease…That’s why we do what we’ve been doing since the morning she passed. Try to raise funds and make sure that those that are still fighting and continue to fight have a chance. And that’s how we honor our mom,” says Dawn.

Want to get involved and support Texans with ALS like Judy?

Join Team Judy

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ALS Heroes: Jim & Diane Tobin

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Jim Tobin was training for his third half marathon when he began noticing weakness in his hips and right leg – not a good sign for a runner. Two and a half years later, in January, 2016, after many tests, he received the diagnosis that would forever change his life: ALS. 

His wife, Diane, says, “Those three letters sent shock waves through us when we heard them. Suddenly life was different.”

They wasted no time, and decided to travel to Paris, a dream that had long been on their bucket list. Though they had to navigate the streets of Paris with Jim in a wheelchair, the memories they made are something they both cherish.

That trip pretty much sums up how Jim has lived his life as a person with ALS. He is a testament to the fact that just because you have a diagnosis of ALS, it doesn’t mean you stop living and challenging yourself. He has chosen to redefine himself, to live a life that has purpose and meaning. He hasn’t let the disease take his joy.

The Importance of Community

Focusing on community, rather than isolating himself, has been one of the most important ways he’s continued to live his life to the fullest.

“ALS is an isolating disease,” says Diane. “There’s no better way to break down the wall of isolation than to build connections and community,” she adds. 

Jim and Diane have been fortunate to have the support of many friends. Diane says, “Jim made lifelong friends playing tennis and golf and running half marathons. To this day, they are still here for him, dropping by to visit and hosting their men’s breakfast group at our home.”

Hope for the Future

Jim is quick to say, “ALS is not incurable, but it’s a complicated disease. Curing it takes a lot of money.”

It’s that hope for the future that spurs his and Diane’s passion for raising awareness and resources to support others with ALS and to help find a cure. 

While they know they’re fortunate to be able to afford the care and devices Jim needs, they realize others are not. Jim recently was able to get an Eye Gaze machine, making it easier for him to reconnect with friends and family through email, texts and calls. He and Diane want others living with ALS to have access to the same kind of assistive technology. 

The couple believes the ALS Association of Texas helps people with ALS “live their lives in the best way they can.” That’s why for the past three years they’ve participated in the Walk to Defeat ALS in Houston. They and their team raise money for the ALS Association to fund research and support for those living with ALS. One particular program that is dear to their hearts is the ALS Texas equipment loan bank, which allows people with ALS free access to durable medical equipment and assistive technology. Equipment can be very expensive. ALS Texas provides this equipment, easing the financial burden and helping to provide a better quality of life for people with ALS. 

Since Jim’s diagnosis Diane has been inspired by a piece called  What ALS Cannot Do. It’s become the couple’s mantra and has encouraged countless individuals living with ALS and their families. 

“While you have ALS, you are not ALS. It is merely a part of you.”  – Diane Tobin

What ALS Cannot Do

ALS cannot cripple love.

ALS cannot erode faith.

ALS cannot destroy peace.

ALS cannot silent courage. 

ALS cannot suppress memories.

ALS cannot weaken family.

ALS cannot erode the spirit.

ALS cannot conquer the soul.

Baseball: Not Just a Game, But a Lifetime Passion

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Submitted by Darin Severson, Regional Operations Manager – South Texas, at Capital Senior Living

During a recent visit to Heritage Oaks, I was asked to meet with a resident who had a complaint and wanted to speak to someone in charge. I was introduced to the resident, Richard. Richard invited me in to his home, and asked me to sit down for a few minutes to talk. I quickly realized that Richard did not have a complaint, but a request. As I sat and listened to Richard, I understood that his request was a heartfelt request to enjoy his lifetime passion, one last time in-person.

It turns out that Richard has ALS and spends most of his days in his room, in his power wheelchair, listening to baseball games on the radio or watching the games on TV. His passion is the Houston Astros, and his request was very simple, yet powerful. He wanted to see his beloved Astros play one last time, in person, while he still had sufficient command of his body, and was able to enjoy the experience. His only issue was that no one in his family had a vehicle that would get him to and from the game, as he has a power wheelchair. A plan was developed, and with the help of the ALS Association of Texas, Richard would get his wish.

Two weeks after my meeting with Richard, he was surprised by his son and grandchildren with the news of his pending trip to the ball game. Richard broke down in tears when he heard the news. The day of the game finally arrived, the look on Richard’s face was like a child on Christmas morning. His son and grandchildren arrived at the community, and he was off on his trip to the Astros and Minute Maid Park.
While sitting at the game with Richard and talking with him, I learned that he was not just an Astro’s fan, but a historian of all things baseball, and all things Astros. I learned that the Houston Astros were originally the Colt 45’s, but, had to change their name because of a lawsuit. I also learned that Richard was an avid baseball player in his younger days and had always dreamed of making the “show”. In a rare moment of weakness from this man, he said, ”I had always dreamed of being in the majors, I just never thought that I would get a Major League Disease instead.” ALS or Amyotrophic Lateral Sclerosis is also known as Lou Gehrig’s Disease. Lou Gehrig was a baseball player for the New York Yankee’s for 17 years in the 1920’s and 30’s. ALS is a disease that impacts the neurons controlling voluntary muscles in the body. Richard later in the evening stated that he hopes that someday they will find a cure for this disease.

Richard continued his history lesson on the Houston Astros. He was at the first game in the Astrodome in the mid 1960’s, he remembers the events of the day well, and was able to recall the score. (I looked it up later.) He was spot on. The Astro’s defeated the New York Yankee’s 2-1.

The game was Thursday night, September 5th, the Astros found themselves down 7-1 after the second inning to the Seattle Mariners. Richard concentrated on the game, taking in the sights, enjoying his hot dog. Talking with his son and grandchildren and soaking up the experience. The Astro’s ended up winning the game in extra innings 11-9. Richard summed up the night with one word, “Amazing.” As Richard returned home, and was getting off the bus, he was beaming with happiness, and a grin that went from ear to ear. It was an honor to enjoy this experience with Richard and his family an evening I will always remember and be grateful for.