ALS Texas

  • Understanding ALS
    • ALS Symptoms
    • Stages of ALS
    • What Causes ALS?
    • Lou Gehrig and the History of ALS
    • ALS Glossary
  • Who We Are
    • What We Do
    • Our Leadership
    • Financial Information
    • Our Partners
    • Careers
  • Research
    • How ALS Patients Can Help
    • Research Resources
    • Research News
    • ALS Association Research
  • Navigating ALS
    • Newly Diagnosed
      • What Do I Do Now?
      • How to Share Your Diagnosis
      • Second Opinions
      • Resources
      • Clinics and Centers
    • Living with ALS
      • For Patients
      • Therapies & Care
        • Nutrition & Feeding Tubes
        • How to Improve Mobility
        • Dealing with Breathing Issues
        • Dealing with Speech & Swallowing Issues
        • Types of Assistive Equipment & Technology
        • Clinics and Centers
      • Living Setting
      • Daily Living Activities
      • Leisure Activities
      • Accessible Vehicles
      • More in Depth Resources/Manuals
    • Coping with ALS
      • Dealing with Anxiety/Depression
      • Changes in Thinking & Emotional Lability
      • Support Groups
      • Resources
    • For Caregivers
      • Caregiver Program
      • Caregiver Resources
      • Practicing Self Care
      • From One Caregiver To Another
    • For Youth & Children
    • Virtual Support Groups & Workshops
      • Past Virtual Event Recordings
    • Resources
      • Healthcare/Insurance
      • Hospice & Palliative Care
      • Finances/Employment
      • Taxes
      • Advance Directives
      • More in Depth Resources/Manuals
      • Register with ALS Texas
  • Get Involved
    • Walk to Defeat ALS®
      • Register for a Walk
    • Texas Chapter Events
      • Houston Marathon and Half Marathon
      • All In For ALS Poker Tournament
      • Sporting Clay Shoot
      • Under Ballou Skies Golf Classic and Party
      • ALS Fishing Classic
      • The Cowtown Affair
    • Calendar of Events
    • Fundraising Opportunities
    • Ways to Give
      • Corporate Partnerships
      • Workplace Giving
      • Community Giving Programs
    • Volunteer
    • The ALS Ice Bucket Challenge
  • Advocate
    • Advocacy Day
    • Advocacy News
  • Contact Us
Menu
  • Understanding ALS
    • ALS Symptoms
    • Stages of ALS
    • What Causes ALS?
    • Lou Gehrig and the History of ALS
    • ALS Glossary
  • Who We Are
    • What We Do
    • Our Leadership
    • Financial Information
    • Our Partners
    • Careers
  • Research
    • How ALS Patients Can Help
    • Research Resources
    • Research News
    • ALS Association Research
  • Navigating ALS
    • Newly Diagnosed
      • What Do I Do Now?
      • How to Share Your Diagnosis
      • Second Opinions
      • Resources
      • Clinics and Centers
    • Living with ALS
      • For Patients
      • Therapies & Care
        • Nutrition & Feeding Tubes
        • How to Improve Mobility
        • Dealing with Breathing Issues
        • Dealing with Speech & Swallowing Issues
        • Types of Assistive Equipment & Technology
        • Clinics and Centers
      • Living Setting
      • Daily Living Activities
      • Leisure Activities
      • Accessible Vehicles
      • More in Depth Resources/Manuals
    • Coping with ALS
      • Dealing with Anxiety/Depression
      • Changes in Thinking & Emotional Lability
      • Support Groups
      • Resources
    • For Caregivers
      • Caregiver Program
      • Caregiver Resources
      • Practicing Self Care
      • From One Caregiver To Another
    • For Youth & Children
    • Virtual Support Groups & Workshops
      • Past Virtual Event Recordings
    • Resources
      • Healthcare/Insurance
      • Hospice & Palliative Care
      • Finances/Employment
      • Taxes
      • Advance Directives
      • More in Depth Resources/Manuals
      • Register with ALS Texas
  • Get Involved
    • Walk to Defeat ALS®
      • Register for a Walk
    • Texas Chapter Events
      • Houston Marathon and Half Marathon
      • All In For ALS Poker Tournament
      • Sporting Clay Shoot
      • Under Ballou Skies Golf Classic and Party
      • ALS Fishing Classic
      • The Cowtown Affair
    • Calendar of Events
    • Fundraising Opportunities
    • Ways to Give
      • Corporate Partnerships
      • Workplace Giving
      • Community Giving Programs
    • Volunteer
    • The ALS Ice Bucket Challenge
  • Advocate
    • Advocacy Day
    • Advocacy News
  • Contact Us
  • DONATE
Menu
  • DONATE
Donate

A Note from Tonya: The Power of Small

June 4, 2022 by Tonya Hitschmann 2 Comments

Alright-let’s start this off by being 100% authentic! Is there anyone who does not connect with this comic?

Has life unfolded just exactly as you thought it would? (If so, I want to know your secret!) We don’t even have to talk about life, by the way. How about today? I start each day with a list of what I need and hope to accomplish, and what I expect to happen. In other words, MY plans-the key word there is MY.

Throughout my Purpose-chosen career, I have been honored to walk alongside families and provide even the littlest of support in the toughest of times. During these times, it can be extremely challenging to find or see the BIG WINS. However, I learned a lesson a long time ago, and began sharing that lesson with the volunteers and teams that I worked with- we must change our mindset! We didn’t get the winning decision from the Judge or Jury, maybe we didn’t get the second diagnosis that we prayed for and yet, what I have been shown time and time again is that everything happens for a reason, and there is a bigger game plan than what we might see in front of us.

We must change our perspective and celebrate each and every victory, even those that seem to be small and of no significance!  Maybe it’s a project you made a little progress on, maybe you just had an “ahead” day that was better than the day before, or maybe you celebrated a family milestone-those are all wins!

Usually, when we map out our plan for our life, or for the day, — we put the finish line checkered flag at the end, and we think, When I get THERE- I’ll celebrate. When I’ve checked every item off the list, only then do I have a victory. It makes perfect sense if you are expecting a nice, straight line to victory. Please again refer to the comic above for another dose of reality and notice the spacing of the red flags-those are your small wins.

The truth is that we know we are going to encounter our fair share (or sometimes more than fair share) of obstacles between here and the finish line, and we cannot wait until we get “there” to celebrate.  Does THERE really exist?

Why are small wins important?

As author John C. Maxwell said, “Small disciplines repeated with consistency every day lead to great achievements gained slowly over time.”  This includes disciplines in our attitude and perspective. Are we simply overlooking small wins every day because we are too focused on a bigger victory? Have you ever been so caught up in thinking about when something would end that you ruined the moments you were in? Sadly, I know that I have.

I happen to be a fan of the television drama series, This Is Us. It ended last month in, well…dramatic fashion. One of the quotes I took away from the final episode was from the deceased patriarch, Jack.

Try to appreciate the moments. That’s what we’re doing, just collecting these little moments. And we spend the rest of our lives looking back, trying to remember.

These “moments” are our small wins every day; every day has them. You must invest in the small things and understand that you only have the moment you are in. It is only the combination of moments over time that achieve the big things.

Need two BIG reasons to notice and celebrate the little wins and every victory along your journey?

  1. It gives you motivation to keep going.

Small wins (which can translate to BIG memories) are found in every day-I don’t know about you, but I cannot wait for tomorrow!

  1. It makes you feel happy.

Pausing to celebrate any small victory feels good and make you happy. Let’s talk about that word happiness a little more.

According to American Jungian psychoanalyst, and author of seventeen books, Dr. James Hollis-our quest for happiness is not really the focus of our lives.

Instead, we should design our lives around finding meaning and purpose. So, why is happiness mentioned in every single written insight about celebrating small victories?

Hollis adds, “Joy, and happiness, are not goals in themselves, but they are the by-product of those moments when we are doing what is really right for us.”

Friends, Happiness is a by-product! When we are fully engaged in our lives, our confidence runs higher, our actions match our intentions, our love for ourselves grows, and we experience a life lived on Purpose, no matter the straight lines, dips, bumps, and detours along the journey.

ALSnewstoday.com recently shared a blog from Dagmar Munn, and her reflections on living with ALS, and taking time every week for mini celebrations.

Celebrating for me is taking the time, even just a few minutes, to acknowledge completion and bring closure to the time, energy, and emotion I poured into the project. Often, I simply push back in my chair while taking a deep breath and think, “Ta-da!” OK, I imagine confetti falling all around me, too. My mental celebrations are vital to my self-care.

The point here is that knowing that my life has meaning and purpose helps me cope with the physical limitations of ALS.

Take time to notice all your victories, and when you do, no matter how small, pause for 15-30 seconds and really feel it. Applaud yourself. Congratulate yourself-and most of all, take it all in.

-Tonya Hitschmann, Director of Community Programs

Read the June Newsletter

View Our Upcoming Virtual Events

Filed Under: Caregivers and Family Tagged With: als caregiver, ALS Family, caregivers, family

Young Caregiver Joins Miss Texas Pageant to Raise ALS Awareness in Honor of Her Mother

June 3, 2022 by Rhema Jones Leave a Comment

Lluvia Alzate recently wrote on her blog, “My mom would always say ‘vive la vida que se va y no vuelve’ which means live your life, time goes on and it will never come back.” Now that her mom, Fanny, is living with ALS, Lluvia embraces this motto every day.

Lluvia Alzate was born in Cali, Colombia. She’s the youngest of three children, with a sister 10 years older and a brother 6 years older than her. At just five years old, Lluvia, her siblings, and her mother, Fanny, moved to the United States. “Moving here, we pretty much started with nothing,”  Lluvia shared.

Her mother worked incredibly hard to provide Lluvia and her siblings with the best life possible growing up. Today, Lluvia is still impacted by her mother’s incredible work ethic. “She always just instilled the importance of education in us and trying to push us to be the best that we could possibly be.”

Lluvia spent her youth involved in cheer, wrestling, and many other school clubs. Like many others, her first introduction to ALS was through the viral Ice Bucket Challenge. Her friends from her teams took part in the challenge thinking it was fun. “I never heard of ALS after that and I never thought I would even be affected by it,” Lluvia shared. Little did she know that this terrible disease would greatly impact her family’s life just a few years later.

In January 2018, Lluvia’s mother started to experience muscle fasciculations in the arm. The family didn’t think much of them. In fact, Lluvia also experienced spasms, joking with her mother that it was normal and nothing to worry about. Concerns arose when the fasciculations in the arms started to spread throughout her mother’s whole body. The family now began searching for answers.

They visited neurologists in November 2018, but all the tests came back saying that Fanny was perfectly healthy. Though the family was skeptical, they accepted the good news, and months passed with no changes.

The Day Everything Changed

Fanny stayed very active and frequently lifted weights. Suddenly, she couldn’t lift the same weights anymore and her arms felt weaker. The family returned to the neurologist for answers. All the while, in summer 2019 Fanny’s speech began to slur.

After more tests and appointments, Lluvia recalls the day that changed their lives forever. It was August 28. 2019, Lluvia’s first day of junior year of college, when she sat in the doctor’s office with her mother, sister and two other aunts. A doctor walked in and broke the devastating news. Lluvia’s mom was living with ALS.

Lluvia described the whirlwind of discovering the diagnosis. She didn’t know at first why everyone was freaking out over the news. “I had to go on Google and research what ALS was and that’s when my heart just completely sunk and I just had to take everything in all at once.” In the following days, a million and one questions ran through Lluvia’s mind. Could my mom continue to live in the house she was living? What will the progression of the disease look like?

Nothing would be the same for their family.

Adjusting to the Caregiver Role

After learning of her mother’s diagnosis, Lluvia faced many difficult decisions. She decided to cancel her lease to move back home with her mother to help around the house. Lluvia now juggled the role of full-time student and caregiver.

“You have to go back and analyze every single choice that you make, because now you have somebody that relies fully on you so you can’t keep making the same choices you were making before,” Lluvia Alzate

Eventually, Lluvia got her real estate license to help her family financially. Maintaining her college classes, job, and caregiving role became incredible overwhelming for her. She would soon take a semester off from college and later reduce her course load.

Lluvia’s life looks very different from what she would’ve thought it’d be right now, but she still cherishes every moment she has with her mother.

Navigating Life with ALS

As the family began to navigate this new diagnosis, the ALS Association supported Lluvia’s family. She feels grateful for the check-ins from the care services team and the knowledge shared about clinics, doctors, and equipment. All the while, Fanny was determined to stay positive through the overwhelming changes.

In her true spirit, she would not let ALS define her life, reassuring her family that everything would be okay. Fanny’s initial symptoms mostly affected her arms, but her legs remained strong. She and Lluvia would take walks around the block, enjoying the sunset and cool nights together.

A lot has changed for the family since Fanny’s diagnosis three years ago, but they still take their evening strolls together. “We still go on those walks, even though they do look a little bit different. Now she’s on a power wheelchair and trach, but she still looks forward to those walks every single day,”- Lluvia

While being an incredible support to her mother, Lluvia continued to pursue her education, taking a couple of college courses every semester. She smiled gleefully as she shared, she would graduate on May 14, 2022, with a degree in business finance. Since her interview, Lluvia has walked the stage and is excited to embark on a new chapter of her life

Becoming a Voice for ALS

Since her mother’s diagnosis, Lluvia has taken every opportunity to share her mother’s story and raise awareness to this disease. And recently, she discovered an unexpected opportunity to continue this mission.

While scrolling on Instagram one day, Lluvia saw that the Miss Texas Pageant was accepting applications for contestants. “Why don’t you do a pageant?” Lluvia’s sisters asked her. After some consideration, Lluvia applied and just a few days later, she was accepted and asked to register. She officially registered as a contestant and saw an amazing opportunity ahead of her through this event.

“Right then and there I also realized why not take advantage of that opportunity to make ALS my platform and shine a light on ALS because this is something that more people need to know about.” – Lluvia

Inspired by her mother’s fighting spirit, Lluvia hopes this opportunity will bring greater awareness to this awful disease. As a young caregiver, hopes her unique perspective will encourage people to get involved in the search for a cure.

Lluvia takes every opportunity to share her story, raise awareness, and raise money in support of other Texans with ALS. She manages her own website and blog lluviaalzate.com, where she shares her experience, educational ALS resources, as well as stories from the ALS community. She’s eagerly ready to serve on the committee for the Houston Walk to Defeat ALS in October.

In May 2022, she hosted a Bootcamp and Bubbles event that raised over $1,400 in support of Texans with ALS. “There’s not enough being done about ALS. We need to find a cure as soon as possible. If it’s not in my mom’s lifetime, it’s for the next person in the future,” Lluvia tearfully shared.

Ultimately, she hopes to let other young caregivers know they are not alone. They have great strength and voice in the fight against ALS.

“There will be many difficult times in this journey where you might feel overwhelmed, tired, sad, or anxious. Just remember that you’re not alone. Difficult times present like a unique opportunity to grow, so just embrace and cherish each day,”

Learn more about the viva la vida movement

Join the Walk to Defeat ALS

Filed Under: Ballou Golf, Stories Tagged With: als caregiver, als stories, young caregivers

Shoot Out ALS Hero: Diane Tobin

March 11, 2022 by Rhema Jones Leave a Comment

For every Texan living with ALS, a caregiver is standing by their side every step of the way. The selfless care of their loved ones with ALS is an inspiration to our community. That’s why for the first time in ALS Texas history, Diane Tobin, an ALS caregiver, will be honored as the ALS Hero for the 2022 Shoot Out ALS Houston Clay Shoot.

Diane smiled as she remembered the day she saw Jim for the first time. It was around 1968 and they were both juniors at the University of Houston. Diane noticed him playing cards in the student union. “He was really cute…and I remember sitting down at the table around where some of these tournaments were, hoping he would notice me.” After several weeks, Jim finally noticed Diane and asked her on a date, and the rest is history.

The two lovebirds were married for 47 great years, raising a beautiful daughter together and later adoring their grandson. Jim and Diane found much joy spending time in their Houston community. They held season football tickets for the University of Houston for nearly 30 years. The two were very active, playing tennis, going white water rafting, and even running half marathons together. In January 2016, their lives changed forever when Jim was unexpectedly diagnosed with ALS.

Cherished Memories

After the diagnosis, their ALS Clinic team encouraged the Tobins to travel and take advantage of the time left to make memories. “I didn’t really understand how fast things could change,” Diane Shared. They truly took that advice to heart starting with a dream vacation.

That summer Jim and Diane took a European cruise to Paris. “We went through Paris, all these beautiful little towns. And it was just a wonderful memory, just a beautiful memory that I really do cherish because it was a lifelong dream and we did it.”

By the time they left for the trip, Jim’s ALS progressed so that he couldn’t walk very far. Diane took pride in pushing Jim around in his wheelchair, embracing every moment together in the City of Love. “Something I would tell a caregiver is not to be so afraid to do things…You’d be surprised you can do a lot more than you think you can,” she shared.

Just a few months after their trip, Diane planned a massive 70th birthday party for Jim. Nearly 100 friends and family showed up to celebrate him and the impact he had on their lives. And of course, the couple continued to show their devotion to the University of Houston, remaining ticket holders and frequently attending games with their alumni friends. When Jim moved to different stadium sections to accommodate his wheelchair, his fraternity brothers followed. “They were always just fantastic people in our lives and maintained that friendship,” Diane shared.

Finding the ALS Community

Initially, after Jim’s diagnosis, Diane shared they were scared to attend support groups for fear of what they would see. “We did not for like the first nine months go to any support meetings and this is the truth,” Diane shared.

When the two finally decided to go, Diane described the experience as amazing. Jim was eager to attend every meeting after, hurrying Diane to eat so they wouldn’t miss a single minute. And for as long as they could, the Tobins attended every connection group and Diane every caregiver support group.

Another way the two found hope was through the Texas Walk to Defeat ALS. Their team, Tobin’s Seals [Seeking to End ALS] became heavily involved as the years went on. Jim was even honored as the ALS Hero for The Woodlands Walk to Defeat ALS in 2019. In a touching speech, Diane shared:

Don’t stop living and challenging yourself. While many people let their illness define them and drop anchor, all of you and my husband Jim is evidenced by your being here at this ALS walk that you have chosen to redefine your life. You are living a life that has purpose and meaning.

Diane meant that with every fiber of her being, for Jim, for herself, for other Texans with ALS and their caregivers.

Evolving as a Caregiver

When a loved one is diagnosed with ALS, your life is turned upside down. For Diane, it threw her into a new world of being both a wife and caregiver to her husband. Though the journey was tough, Diane took every challenge in stride.

She once shared that during their trip to Paris, the front wheels of Jim’s wheelchair caught on the cobblestones. This caused him to fall onto the street, luckily with no injuries. Diane reflected on the incident, “We were just getting started…a bump in the road would not stop us.” She carried this spirit with her throughout their entire ALS experience.

As Jim’s ALS progressed, so did her caregiving experience evolve. As he would lose function of muscle groups like his hands, Diane added more duties that she didn’t have before. She spent several years thinking she had to do everything alone, but soon she realized it wasn’t possible. Diane noted how difficult it can be for caregivers to step back from their loved ones with ALS. Many think nobody does it as well as I do or nobody can take care of him as well as I do. But it’s a slippery slope to isolation and feeling trapped as a caregiver.

“At some point, you have to get help, and I did,” Diane shared. She was amazed to find the outside caregivers brought new things into Jim’s life that she couldn’t. They brought more laughter and adventure. And most importantly, they gave Diane the chance to invest time in herself so she could spend more cherished moments with Jim as his disease progressed.

Holding on to Love

Throughout Jim’s battle with ALS, Diane held on to love. Though her life was now filled with caregiver responsibilities, she never lost sight of their true relationship—husband and wife. “You have to be careful that you don’t lose your identity of being their wife or mother or whatever it is and start to become only a caretaker. They’re that same person. He was the same person I fell in love with,” Diane tearfully shared.

Remembering those things, Diane always strived to make sure Jim felt empowered to make his own decisions, even if she wasn’t ready for them. Diane described this time as the hardest thing she’s ever had to experience. As it became more difficult for Jim to breathe on his own, he was admitted into the hospital for seven weeks. The last three of those weeks, Jim was placed on a trach.

She noted that Jim never wanted to live with a trach and made the decision to forgo that treatment. Though Diane wished to hold on as long as she could, loving Jim also mean learning to let go.

I had to respect his decision because it was his life. When I would try to say, ‘Oh no we can work this out. We can do it.’ He would always say to me my decision…he would mouth it to me once he couldn’t talk. That’s what I’m talking about—empowering the person with the disease. – Diane Tobin

Jim passed from ALS in fall 2021. He lived a wonderful life surrounded by Diane, his daughter, and his siblings by his side. Though Diane cherished all 47 years together with Jim, she only wished she had more time.

The Next Chapter

Losing a loved one to ALS is devastating, yet it’s especially difficult for family caregivers. Diane describes the emptiness she felt after Jim’s passing. “After being a caregiver for so long, it’s like all-consuming to lose that job and lose that person.”

Today, Diane still holds on to those precious memories she and Jim made together—from their wedding day to raising their daughter, to football games at their alma mater, to Paris, and even in finding community through ALS.

That community has helped Diane as she walks into this new chapter. She’s connected with a group of five other ALS widows who frequently spend time with one another. “The ALS Support group gave me support after I lost my husband from a group of women that could totally understand…what I’m going through, the sadness because they’ve been there,” she shared.

She encourages other caregivers to lean into the ALS Texas community and find that support because it’s impossible to do it on your own.

This is a great organization because it helps people in the worst places…you helped alleviate that [fear] in our hearts and made the journey one we could make. – Diane Tobin

You can support ALS Caregivers like Diane Tobin by joining us for the 2022 Shoot Out ALS Houston Sporting Clay Shoot on March 24, 2022. Your support allows ALS Texas to continue investing in the selfless ALS caregivers in our community through mental health workshops, niche support groups, educational presentations, and more!

Register for Shoot Out ALS Houston

Learn more about the caregiver program at ALS Texas

Filed Under: ALS Hero, Sporting Clay Shoot, Stories Tagged With: als caregiver, ALS Hero, clay shoot

ALS’s Youngest Caregivers: Caring with Love

January 25, 2022 by Tonya Hitschmann Leave a Comment

According to a 2005 report by the National Alliance for Caregiving, there are at least 1.3 million caregiving youth between the ages of 8 and 18 in the United States. Friends, this report was more than 15 years ago! Today, we know for certain that this statistic is very low; not only have the reported numbers increased, but many families are also reluctant to share their caregiving situation. Some families are embarrassed by their need for assistance and are hesitant to volunteer information on their household needs with school or social services officials. There are also many emotions and feelings involved, such as guilt, pride, denial, and fear. This means that young caregivers may be struggling in school or at home, and potential resources—like teachers or special support programs—are unable to offer assistance that may help relieve some of the stress.

In 2021, Forbes magazine shared information gathered by the new Global Carer Well-Being Index from Embracing Carers, highlighting that “25% of Gen Z and Millennial caregivers were in caregiving roles for the first time during the pandemic, compared with 15% of Gen X and Boomer caregivers. Overall, 20% of caregivers surveyed were new to caregiving and 60% of them were Gen Z or Millennials.”

In Texas, we know that there are close to 3,000 young adults under 30, youth, and children involved in the ALS experience.

Young caregivers are involved with both the activities of daily living (ADLs) and instrumental activities of daily living (IADLs), which include managing complex assistive devices, feeding, bathing and toileting.

This February, we are shining a loving spotlight on our ALS Texas young caregivers, and how they are rising to the challenge and supporting their families and loved ones living with ALS- with pride, advocacy, determination, empathy, and so much more! They are truly Caring With Love.

Before give you all of the information you need to save the dates of our calendar of events, we’d first like to share with you an incredible quote from Gabriel Poveda; insight that only someone who at a young age provided care for a parent or loved one is able to share with others. Gabriel’s father ended is battle with ALS in 2020, and Gabriel is now a senior at UT Austin, and in the Navy ROTC.

Words of empowerment and support for young caregivers:

 “You’re going to be a remarkably strong individual. For young caregivers, I really wish I could tell you that there’s some sort of personal…some sort of something that makes it a little bit worth it, but what that is, is very little.  The truth is-it’s going to be hard; very, very hard. The only personal solace I can genuinely give you is that you ARE going to be remarkably able to connect with other human beings.  You emerge with a sense of pain that makes us more empathetic and makes us feel closer to other people. Alongside your peers, you’re going to find that you enjoy more than them. It’s going to be bittersweet, but you’re going to enjoy walking, talking, and eating more than they ever are.  You’re going to enjoy having a family and having people you love more than they ever will…and when people are suffering, you’re going to be able to help them more than anyone else will.”- Gabriel Poveda

We invite you to join us for all our February Caring with Love events.  You will be inspired, empowered, hopeful, and connected to a community – a family that is here for you no matter what.

Tonya Hitschmann, Director of Community Programs

Caring with Love Virtual Events

We’re hosted several exciting events in February 2022 for Caring with Love month. Watch the recordings below!

Facebook Live Interview with Ronan Kotiya

Meet Ronan Kotiya, a young caregiver to his father, Rupesh, who was diagnosed with ALS in 2014. Ronan is passionate about raising awareness for ALS. He even published a book Rupesh J. Kotiya vs. ALS : My Dad’s Fight For Survival to provide an insight into what it’s like to have someone with ALS in your life. Way to go Ronan for being a young leader in the fight against ALS!

Trauma-Informed Yoga for Kids with Yoga N Da Hood

Youth today face so much trauma, including trauma connected with the ALS experience. YOGA N DA HOOD WELLNESS is dedicated to providing social and emotional learning through YOGA and MINDFULNESS for children of all ages. Through the practice of Trauma-Informed Yoga and Mindfulness, youth can develop stress and trauma management, self-esteem, enhanced strength and flexibility, and enhanced concentration and memory. Thank you to Mitsubishi Tanabe Pharma America for sponsoring this event!

Young Caregiver Panel Discussion

Join ALS Texas as we visit with some of our young caregivers throughout the state, in an open and honest discussion that all families will want to hear. We also encourage you to bring your family’s questions for the panel. We are all better and stronger together!

Filed Under: Caregivers and Family Tagged With: als caregiver, ALS Family, caregivers

A Note from Tonya: Caregiving as a Team

November 6, 2021 by Tonya Hitschmann Leave a Comment

November is National Family Caregivers month. While we are focused on supporting every member of our ALS Texas family throughout the year, this month allows us an opportunity to host some extra special events for family members, and to remind everyone that caregiving should be a team approach, with your loved one who is living with ALS leading the charge.

PRE-GAME PREP: It is important to ask your loved one HOW they want to live, and if you can agree on an overarching goal, your strategy along the way will be a little easier to figure out. Like any winning team, you must know your strengths, and also be keenly aware of what you are up against.

When caregiving becomes a priority, relationships can suffer. Caregiving can be especially challenging for someone who also experiences a role change from adult child to caregiver, or spouse to caregiver. No matter how close you are with your partner, spouse, siblings, or children, conflicts can and will arise. Complicating matters, “parents often have preferences for which child will be their primary caregiver that may stir up resentments with siblings,” says Barry Jacobs, a clinical psychologist, health care consultant and AARP Caregiving Consultant. “How you behave with one another can affect your sibling relationships for the rest of your lives,” he observes. “When you pull together and work together, it can strengthen the relationship. When you don’t, it can weaken the relationship.”

Caregiving Corner.com shares that today, “Gen X and millennials may be doubly stressed because they are often in the sandwich generation- Caring for parents and their own children.” To help navigate these waters, Millennials and Gen Xers are using strategies that might benefit family caregivers of all ages.  “One of their strengths is spreading the workload. A recent report shows that millennial and Gen X family members use technology to support their caregiving. They also embrace more of a team approach than their older caregiving peers do.”

Think of your Caregiving Team as the Houston Astros or Texas Rangers baseball clubs. Your loved one is the coach – calling the shots. As the primary caregiver, you are the pitcher (1) in charge of the rest of the team! Now think about the people you rely on the most or those on whom you can easily call- family members, close friends, church members. Those individuals are your infielders. (2 – catcher, 3 – first base, 4 – second base, 6 – short stop, 5 – third base). Outfielders are those who may live far away and/or can help only occasionally (7 – left outfielder, 8 – 9 – center outfielders, 10 – right outfielder). Some examples could include family members that live out of town, neighbors, your loved one’s primary care physician, local community resources…and ALS Texas!

Remember, every team has players on the bench and ready to go in a pinch, so it’s good to have a list of a few alternates- but you must ASK for the help. Often, friends and family want to help, they just don’t know how. This can be difficult for the primary caregiver, especially if their loved one is resistant to others joining the care team. This is the time for you to tell the Coach what you need; what the team needs to be successful. Even All-Star players need rest and days off.

When building your team, consider which team player is best suited to which responsibilities, based on abilities, financial resources, proximity to you and your loved one, time availability and other key factors.

Don’t forget the big picture; caregiving can be a long season.

  • Watch for the signs. As a primary caregiver, your self-care is also a high priority.  You can’t care for your loved one if you are not taking care of yourself.  Know your limits, and your self-care warning signs. The same is true for your loved one living with ALS. On a stress scale of 1-10, what does a “5” look like for each of you?  Where are you today?
  • It takes the entire team! It’s not just the day- to-day caregiving responsibilities that need teamwork, but also things like yard work, picking up groceries, house cleaning. Who can help in these areas?
  • Pinch hit. Life happens! Who are your back- ups ready to play?
  • Days off. Primary caregivers need time off—to preserve marital harmony or simply re-center. Can you visit other family members? Or could other family members chip in to treat you to an afternoon or evening out?
  • Gifts and talents come in many different forms. It can be financial, physical, or emotional. One person may have less time but more money. Identify your team’s talent, and then build a strong and diverse team.

Think PPF: ask your team to be Patient, Positive and Flexible and have them encourage the same in you.

Tonya Hitschmann, Director of Community Programs

Read the November Newsletter

View Our Upcoming Virtual Events

Filed Under: Caregivers and Family Tagged With: als caregiver, als community

Celebrating ALS Caregivers for National Family Caregivers Month

November 1, 2021 by Tonya Hitschmann 1 Comment

“There are only four kinds of people in the world.
Those who have been caregivers.
Those who are currently caregivers.
Those who will be caregivers, and those who will need a caregiver.”
― Rosalyn Carter

November is National Family Caregivers month, a time to recognize and honor family caregivers across the country. While ALS Texas is focused on these things year around, November provides us a bonus opportunity to raise awareness of caregiving issues, educate our community, support caregiver self-care and mental health, and increase support for ALS Texas caregivers of all ages.

We look forward to celebrating all of the amazing caregivers in our ALS community in November!

Tonya Hitschmann, Director of Community Programs

National Family Caregivers Month Events

We hosted several exciting events in November 2021 in honor of National Family Caregivers Month. Check out the recordings below!

Veteran’s Caregiver Interview with Laura Garey

For unknown reasons, veterans are twice as likely to be diagnosed with ALS than civilians. ALS Caregiver Lara Garey joined us to discuss the experience of caring for a loved one who is a veteran with ALS.

Watch the Recording

Trauma-Informed Yoga with Ebony Smith

Watch this event in your most comfy yoga pants to experience the healing power of yoga with Ebony Smith from Yoga N Da Hood.

Watch the Recording

National Family Caregivers Month Interview with Special Guest, Broadcast Journalists & Podcast Host, Sarah Trott

Many might remember Sarah Trott from earlier this year as a contestant on the 25th season of The Bachelor. What you might not know is that she is deeply connected to the ALS community. Her father, Tom, was diagnosed with ALS in 2016. At age 19, Sarah’s world view and priorities dramatically shifted as her father and family battled the disease. A few years into her dad’s diagnosis, Sarah temporarily paused her career in broadcast television as a TV reporter and anchor to move home and help her mother and sister with caregiving. On October 20, 2021 in a loving tribute on social media, Sarah shared, “You hung up your jersey last Friday after a hard fight with ALS. Six years of extra innings and surpassing everyone’s expectations both physically and mentally.” Sarah now works with the local and national ALS organizations to advocate for research and caregiver support. She visited with our ALS Texas community to share her experience as a young ALS caregiver and offer resources for young caregivers.

Watch the Recording

Filed Under: Caregivers and Family Tagged With: als caregiver, national family caregivers month

Virtual Groups Are Connecting the ALS Community Like Never Before

August 30, 2021 by Rhema Jones Leave a Comment

When you or a loved one is diagnosed with ALS, your whole world implodes. You find yourself on a traumatic and isolating journey, having to come to terms with this terrible disease. ALS is a club you never want to be in, but you’re not alone.

It is estimated that there are 1,495 people living with ALS in Texas currently. This does not include the many caregivers, young adults, and children who love someone living with ALS. For all these individuals, the emotional burden is something no one should bear alone.

One of the best ways to cope with the emotional struggle of ALS is by connecting with others who understand what you are going through. Finding those people though can be the hard part, and that is where ALS Texas comes in.

We facilitate vital groups to help connect you with other individuals who are battling this disease. Today, we are connected now more than ever before with the rise of virtual support groups.

Virtual Platforms Extend Our Community

ALS Texas moved to virtual support groups last year for the safety of our ALS community amidst the pandemic. This not only allowed our community to stay connected during a difficult year, but also showed us greater possibilities with our support group reach.

In 2020, 1,633 people joined 160 virtual support groups and online presentations and that number is only growing! In the past, in-person connection groups were not always accessible. Some families did not have the available transportation. Others lived too far away to make the travel worth it. And as the disease progresses, leaving the home becomes more difficult.

Our in-person groups were only centralized by city. Now people can connect from the Panhandle to the Valley at the click of a button. Virtual groups allowed niche groups in our ALS community to come together in ways they hadn’t before. Now EVERYONE on the ALS journey can find a group to meet their needs.

A Group for EVERYONE on the ALS Journey

From those living with ALS to their caregivers, to their children, grandchildren, and everyone in between, every member of every ALS family needs a hand to hold as they walk along the ALS journey.

Our virtual groups are an emotional lifeline for the ALS community. Norman Jones, who was diagnosed with ALS in 2018 shared how these groups have impacted his life. “You’re able to express your emotion and your struggle. And then you get advice from others how they handle their struggles.”

Like many ALS families, they benefit from localized ALS Connection Groups that allow anyone affected by ALS to connect with those in their city. Several of those cities also facilitate localized Caregiver Groups. For those who are grieving the loss of a loved one, we host quarterly Bereavement Groups, helping support our community through every step of the ALS journey.

In the last year we have launched SIX new virtual groups with TWO more launching this fall! Each of these groups are geared to serve an emerging need in our community as follows:

Niche Caregiver Groups
  • Women’s Caregiver Group
  • Men’s Caregiver Group
  • Spanish-Speaking Caregiver Group [Launched October 5]
Youth and Children Groups
  • Youth Peer Support Group for Ages 8 – 13
  • Young Adult Peer Support Group
Specialty Groups
  • Veteran’s Group
  • ALS & FTD Group [Launched November 19]

We are constantly looking for ways to better support our ALS community. If you think there is another type of group that might be helpful to others, we would love to hear your ideas! Visit the contact us page to get started.

The Future of Virtual Groups

ALS Texas is here to support your emotional needs on the ALS journey, but it all starts with you. Those living with ALS and caring for those living with ALS have the most wisdom to pass to others who will experience this disease. Take it from ALS family, Mike & Mary Busch, who shared, “When you get further into the journey, you realize you have valuable experience that you can share with others.”

Director of Community Programs, Tonya Hitschmann is excited to see the growing connection group opportunities for our ALS families.

Connection groups are the way out of isolation island! ALS does not define an individual- the power to choose how life is truly lived comes from within. Every ALS Texas connection group creates an environment to meet new friends – those that understand the ALS journey, and those with common interests. Connection groups open the door to meaningful conversations and relationships, help combat loneliness and depression, and create a space for sharing information, experiences, insight, and encouragement.

It is true that we are better together than we are alone. Join a virtual group today!

Filed Under: Caregivers and Family Tagged With: als caregiver, als community, caregivers, family, support groups

Messy Motherhood: Jennifer Mercz’s Story

May 7, 2021 by Tonya Hitschmann 1 Comment

I felt I was falling short in a lot of places. You can’t have it all together.

In January 2019, after a year of doctor’s appointments, increased symptoms, referrals and second opinions, Jack Mercz was diagnosed with ALS at the age of 53.  In a recent ALS Texas interview with his widow Jennifer Mercz, Jennifer shared “our whole relationship pretty much changed in a day.”  Jennifer and Jack had a then two-year old son, and Jennifer added, “I had been with my husband for 10 years and suddenly found myself not only caring for my husband but also my young child.” She recalled moments that included putting her son in the bath and helping her husband in the shower at the same time, and at the end of the day being too tired to even take a shower herself.

Jack and his family battled ALS for more than a year- and amid the COVID pandemic as well, until Jack passed away in September 2020. “Walking on this journey was one of the most challenging things my family has ever endured,” shared Jennifer. Yet, she is ready to share her experience with others. “This community and support are lifechanging; to have support and know that you are not completely alone.  Me sharing…if this helps one person that’s good enough for me.”

Jennifer shared that Jack was not very accepting of any kind of help; he wanted to be stronger in every way and help Jennifer at home when he was not traveling for work. Frustration over his declining physical abilities and strength led to anger and depression and Jennifer shared that she “became very standoffish emotionally-clinical with him.” While Jennifer did reach out to ALS Texas and the community as much as she could, she added that “things were moving so quickly that I didn’t seem to have time” to do more-such as accessing our ALS Texas equipment loan program sooner. “The ALS Association delivered a Hoyer lift to our home-it was great, and we needed it.  Jack was able to get up (after weeks of being in bed) and sit on the couch with our son.”  He told me that he wished we would have had that [Hoyer lift} earlier.  In retrospect, she added that she would do things differently in making some “executive decisions” about Jack’s needs; equipment and care that would have also benefitted her.  She urges all family caregivers to seek help with caregiving if at all possible-from anyone who is able to help, including friends and family members, and when someone says, “Hey, do you need help?” the answer is “YES! Here’s how you can help me.”

You put yourself on the back burner. Get help, even if just for an hour, so you can eat, shower, and take a deep breath. Support, from my husband’s perspective, was not a priority, but I needed it… 20-30 minutes for yourself is the most important.

ALS Texas offers programming and support for caregivers of all ages. You know when you receive safety instructions before traveling by air, and the flight attendant tells you that in the event of an emergency, you should put the oxygen mask on yourself before helping those around you? They say this because you will not be any good to those who depend on you if you cannot breathe yourself. This applies in caregiving too, and it is very important to remember.

Not only do we have Brewed Awakenings, our caregiver group just for women, or one of our many Connection (Support) Groups throughout the state for both those living with ALS and their caregivers, but we also host workshops such as Running on Empty: Burnout and Compassion Fatigue, The Cost of Caregiving.  Often, caregivers like Jennifer share that they just do not have time to attend any of these. In reality, you cannot afford NOT to.

Jennifer was dealing with so many different emotions, and candidly shares that she was “in such a dark place.  Added to all of this was an unneeded dose of Mom Guilt. Mom guilt is the feeling of guilt, doubt, anxiety, or uncertainty experienced by mothers when they worry that they are failing or falling short of expectations in some way.  Being a parent is one of the most difficult jobs in the world and does not come with a handbook, and surely not a handbook for when ALS enters your life. No book, pamphlet, workshop, or conversation can truly prepare you for what you are about to experience.  Jennifer recalled once giving her son a bag of chips and then going to care for Jack.  “When I returned the bag was laying there empty, and I thought to myself, I hope my son ate those and not the dog. At times that was all that I had time for.”

Pay more attention to what is real and less attention to what you feel. Feelings can trick you in to thinking you are the worst mom out there.  Being level- headed and rational with your thinking will help you to see what is really going on.

When asked how she and their now almost four-year old son are doing today, Jennifer replied, “Grief is a tricky thing. Overall, he is good, and I’m touch and go.  Today, I’m good.”  ALS Texas walks alongside our families throughout every phase of the disease and we also have many bereavement resources for adults, youth, and children, and hosts a quarterly Bereavement Group.

Learn More about our Caregiver Programs

View Upcoming Support Groups

Filed Under: Caregivers and Family, Stories Tagged With: als caregiver, support groups

Wife, Partner, and Caregiver – The Balancing Act

November 13, 2020 by Tonya Hitschmann Leave a Comment

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

Filed Under: Caregivers and Family, Stories Tagged With: als, als caregiver, als stories, national family caregivers month, self-care, support groups

Trimming the Fat: A Husband’s Perspective on Caregiving

November 4, 2020 by Tonya Hitschmann Leave a Comment

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.

Filed Under: Caregivers and Family, Stories Tagged With: als, als caregiver, caregivers, caregiving, national family caregivers month

  • 1
  • 2
  • Next Page »
  • Site Map
  • Privacy Policy
  • Link Policy
  • Contact Us

The ALS Association of Texas | 877.714.0088
All content and works posted on this website are owned and copyrighted by the ALS Association of Texas © 2021


Dallas Office 14555 Dallas Parkway Suite 100-219, Dallas, Texas 75254
San Antonio Office We're working from home! Please send mail to the Dallas office.
Austin Office 2301 W Anderson Lane, Austin, TX, 78757
Houston Office 4201 Main Street, Suite 200-142, Houston, TX 77002