ALS Texas

A Note from Tonya: Playing the Game of Life

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On a recent rainy Saturday, I was playing the board game LIFE with my family. I need to also be transparent and share that I am not typically a fan of board games in general. They can sometimes move so slowly and take forever to finish- at least if you want a clear winner. I love sports and competition- and prefer games that have more strategy. I can even play a good “Chickie” or two in a game of Chickenfoot Dominoes and learned to “take my tricks early” in Spades- as taught by my amazing grandparents during summer trips to their house on Lake Altus in Oklahoma.

The board game LIFE can be kind of fun. You can decide if you want to take the path where you might get to have a family. You might even get to pick a house if you have a lucky spin. If you take a little bit longer route (see what I mean about taking a long time to play) you can go to college and have a career that pays more. However, the outcome is still for the most part random-and there is not a real strategy. If you try to play the board game LIFE with some strategy in mind, you will likely end up very frustrated. You are better off just spinning and seeing what happens; enjoying the break from work, the things that don’t have to be done right now, the stressors of life-and focusing on spending treasured time with friends and family.

We can apply this same approach to real life, too. While we can absolutely have a strategy for our life and should indeed make some really important plans, those plans will not work all the time, and circumstances and situations can and do change. Ultimately, we will have to accept that an awful lot in our life is left up to the spin.  Getting to that point is much like a board game-it can take a long time and include a lot of frustration along the way.

“You never win any games you don’t play.”  – Dallas Mavericks owner Mark Cuban

This quote reminds me that we must always be willing to playing the game, rather than getting frustrated, flipping the board, and quitting! Real life is messy. There can be art in the suffering, lessons learned with each spin, and while it is almost 100% certain that our lives will not go the way we have strategized in our minds, we can still get the win.

Are you a fan of board games?  Leave me a note and share some of your favorites!

Tonya Hitschmann, Director of Community Programs

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A Note from Tonya: If You’re Happy and You Know It

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“That makes me happy!”

“Is anyone really truly happy?”

“I’ll be happy when…”

We have all heard someone say these phrases, and if we are being honest, have thought and said them ourselves. HAPPY. You know how when you stare at a word for too long, it can start to look weird; like it is spelled wrong, or it doesn’t make sense?  Happy, is to me, one of those words.  Then, when I think about it even more, not only does it look weird, but I am amazed that such a small word can have such a BIG impact on our lives, and the lives of everyone around us.

Martha Washington said, “The greatest part of our happiness depends on our dispositions, not our circumstances.” Is it possible to experience happiness regardless of your situation; experience contentment whatever your circumstances? Yes, it is. And it all starts with awareness.

We are happy now, and sometimes we don’t even notice it. You see, happiness is very fragile, and we often make it conditional.  We struggle to balance what we currently have and what we want. The problem with conditional happiness is that it keeps us on hold while we wait for a perfect life- a life that does not exist. The solution is to stay present in the here and now. The problem isn’t life, but your expectations of it.

Have you ever felt like you’re just waiting for something really good, life changing, THE fix to everything that is broken, to arrive? You say to yourself, “C’mon future-I’m ready, because I know it will surely be better!”

The future is an illusion and only a concept in your head. That is how our minds trick us; we are promised that we’ll get something that we already have. The future begins today, right now-but how do we stay present in the here and now, and invite happiness into our lives?  Try these tips as a start!

Protect your mental health no matter what – Set your boundaries for self-care, and filter what you let your eyes read, and your ears hear.

That’s my jam. I dare you to NOT smile while blasting your favorite feel-good song!  And I double dog dare you to choose your ALS theme song. (bonus points if you email me and share your jam)

Write it down. Did you know that taking the time to write down just three positive things each day will make you more optimistic and less stressed?

Hello, Sunshine. Just a few minutes of fresh air and sunshine can give you a fresh new perspective.

Think positive. No matter how bad things may seem, be grateful. Warm water on a cold day? Amazing! Cold water on a warm day? Delicious!

Do not neglect the present by keeping your focus on the past, bring yourself to the moment and enjoy your journey as it truly is, not the one that you have imagined and planned in your head.  You are happy now, but you must be the first one to notice it.

Tonya Hitschmann, Director of Community Programs

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A Note from Tonya: Our Hope Is Our Belief, and Belief Is Our Hope

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May is ALS Awareness Month.  While every month of the year brings a long list of very worthy causes to our attention-well, July’s National Ice Cream Month might be a questionable “worthy cause”, but stay with me here.   The focus is awareness.  We see the name of the causes, hear them discussed in circles, read statistical information regarding their origin and current status- and all with the goal of becoming more aware of what is happening all around us.

We’re aware, then what?  May is ALS Awareness Month- what exactly are we aware of?  We are aware of the statistics-here are a few ALS Texas facts:

There are almost 3,000 young adults, youth, and children who are ALS family caregivers in our state alone.

These aren’t all of the statistics-and yet this information sure makes us aware that in 2020, ALS didn’t stop.  And neither did we.

Once we are aware, we must then BELIEVE that our awareness will bring about change, and believe in hope.  My favorite comedy series that is streaming right now(and favorite by a long shot) is Ted Lasso.  It is hilarious, and even more than that, it makes me feel good. I find myself immediately re-watching the second I finish an episode.  I have also discovered that I’m collecting Ted’s wittiest sayings to use when I most need them:

I believe in hope. I believe in BELIEVE. – Ted Lasso

As we help bring awareness to ALS not just in May, but every month, we are helping to create hope-hope of a world without ALS.  We bring awareness to the need for funding to help loan more than a million dollars in medical equipment to our families;  awareness to the need for more research in understanding the cause of, and treatment for this disease; awareness to that fact that thousands of young people are helping provide care to a loved one living with ALS-and maybe delaying college, sacrificing social relationships, and feeling isolated in their situation; and awareness that we have a “Texas-strong” community of clinicians, professionals and therapists, passionate ALS Texas team members, committed family caregivers, and those living with ALS, who are all locking arms in the fight and walking alongside each other every step of the way.

In a recent April 2021, Mass General Department of Neurology webinar and audience Q&A about the HEALEY ALS Platform Trial, Dr. Daragh Heitzman of Texas Neurology in Dallas shared “I am excited about the future”- regarding ALS research and clinical trials.

Awareness leads to belief.  We believe in persistence, in progress, and a world where ALS does not exist. Our hope is our belief, and belief is our hope.

Tonya Hitschmann, Director of Community Programs

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Young Caregivers in Texas Aren’t Alone

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It’s nearing the holiday season, and that means it’s time to focus on family and quality time. Especially during this time, it’s important to appreciate the dedicated caregivers working tirelessly for their family. We must never underestimate the strength that caregivers have for providing support to those who need it most, nor the toll that it takes upon them both emotionally and physically.

This National Family Caregivers Month, the ALS Association of Texas is recognizing, supporting and empowering family caregivers. In this third and final installment to our caregiver series, let’s dive into a caregiver perspective that’s frequently overlooked.

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

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

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

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

Abby Estrada, LCSW

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

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

Jothi Gupta

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

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

Connor Hadley

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

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

Gabriel Poveda

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

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

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

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

So what’s next for young caregivers?

We’re taking Gabriel’s feedback to heart! In January 2021, ALS Texas will launch online peer support groups for young caregivers involved in the ALS journey. The inspiring young people above will co-facilitate this group, continuing to change the world one day at a time. Each of them want to connect with other young people who feels isolated and alone. Young caregivers in Texas aren’t alone.

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

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.

Caregiver reflects on ALS journey, impact of donations

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When Kristin Sedate’s father was diagnosed with ALS in 2014, she stepped in to serve as one of his primary caregivers. Read her story about their journey through ALS and what your donations meant to their family. 

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