ALS Texas

A Note from Tonya: Seasons of Change

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If we had no winter, the spring would not be so pleasant. If we did not taste adversity then prosperity would not be so welcome. – Anne Bradstreet

At about this same time every year, we begin to notice the changing of seasons all around us.  Since we live in Texas, it’s not quite like this scene from an October Vermont vacation that I took in 2017, but we still notice the falling leaves that need raking, cooler temperatures, changing colors- and pumpkin spice lattes.  In fact, we know that we can count on it happening every year.

We observe our environment cycling through phases and stages of transition. We also quickly realize that nothing ever stands still, that nothing ever maintains its current state for very long. All of nature cycles through seasons of change and transformation, effortlessly and naturally — just like we transition through psychological and physical states of transformation throughout our lives; although, sometimes not quite as effortlessly and naturally.

The seasons of life are, sadly, not as predictable as the earth’s seasons!  Sometimes they last a great deal longer than you want them to!  Sometimes they last a short amount of time.

To grow through life’s inevitable ups and downs, we must move through each season in turn, as illustrated below by seasonsofchange.com

Fall – Sensing a Shift in Your Life and Preparing for What’s to Come

Early Winter – Retreating, Reflecting and Reconnecting with Your Deep Nature

Winter Solstice – Catching Sparks of Hope in the Darkness

Late Winter – Exploring and Experimenting to Firm Up Your Vision for the Future

Spring – Bursting into Bloom and Putting Your Plan into Action

Summer – Celebrating Your Harvest

We naturally create and transition between the four seasons of life as a result of our responses and reactions to everything around us-people, events, and circumstances. This essentially means that HOW WE RESPOND to our environment will directly influence what we get back from our environment — whether they are problems or opportunities.

You cannot control the seasons that come into your life (much as you may want to!), but you can control how you respond to each one.  Don’t hate the season. CHANGE your mindset and perspective and experience each season as a learning experience, not a time to simply endure and get through. You will also learn new things about your strength and yourself, which in turn will help you grow.

What season are you in or transitioning through right now?  Life is a journey with many phases. Let’s not allow the pain of one season to destroy the joy of others.

Tonya Hitschmann, Director of Community Programs

Read the October Newsletter

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How ALS Texas Supports the Emotional Needs of Our Heroic Veterans

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September 23, 2021, marks the thirteenth anniversary of the Department of Veterans Affairs recognizing ALS as a service-related disease. Those who have served in the armed forces are twice as likely to be diagnosed with ALS than civilians. This applies to both those that served during peacetime and wartime.

Researchers have looked for decades for a link between military service and ALS, but none has been found. A 2019 ALS in the Military Report discussed findings from the 1990’s through recent years. It examined those in the military from as early as 1910. After a staggering amount of evidence was found, ALS was finally declared a service-related disease in 2008.

A Unique ALS Experience

With this status, the VA provides support to veterans who completed at least 90 days of consecutive service. This includes financial and medical support. Though there are specific benefits for veterans with ALS, they also have a different experience than most.

Veterans with ALS are in a unique position. They must balance the emotional toll of a devastating disease plus the emotional burden of serving in the military. They must also come to terms with the fact that their service to their country put them at risk for ALS.

Between their distinct emotional experiences and a separate support system through the VA, veterans with ALS are a niche group in our community. Their perspectives require an outlet where they can be fully understood by their fellow former servicemen fighting this disease.

Supporting Veterans with ALS Emotionally

ALS Texas is committed to supporting our veterans with ALS emotionally. In 2020, our team launched a new virtual support group for these veterans and their caregivers. Veterans with ALS across the entire Texas can connect with one another. Providing this community an outlet to discuss their unique ALS experience is crucial.

This group meets every third Tuesday of the month at Noon, and you can find the latest meeting time and register here. In the last year this group has grown tremendously along with its impact.

A Growing Impact on the Community

Many veterans joined this group and found a great sense of community from their peers with ALS. This includes veterans like Ron McAnally who is new to the ALS journey.

Ron served in the U.S. Army from 1974 to 1977. “Some people went to college. I had 3 years of ROTC in high school and joined the Army right out of school,” he shared. Ron’s MOS (Military Occupational Specialty) was being a Voice Radio Operator with the 39th Signal Battalion, 128th Signal Company.

When he came back home his fight was not over as he was diagnosed with ALS in late 2020. The virtual ALS Veteran’s group has been a great resource for Ron and his wife May.

I came into this ALS Veteran Group scared, broken and unsure of what was going to happen to me and my wife. The veterans and some of their spouses in this group, that Steve Morse from the ALS Association of Texas provides for us, are helping me get through the initial impact of being diagnosed with this horrible disease and helping me and my wife to understand the VA benefits and how to get the help we need to live with this disease through the complicated VA system.

When asked how this group impacts this community, Ron shared the following. “Seeing other service members living with and battling this disease is heartbreaking, but the comradery with them is heartwarming, and they always let me know I’m not battling this ALS alone. They truly are my heroes.”

If you’re a Veteran in need of emotional support, we invite you to join this monthly group. If you’re not a veteran and need support, there are groups for you too!

Read about ALS and the military

View the full support groups schedule

Read more about the growth of virtual support groups

A Note from Tonya: No Regrets

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I love to read. Over the years, I’ve challenged myself to read more and more books; joining so many Book Clubs, taking on “read a book a month” challenges- you name it.   This summer, I read The Midnight Library by Matt Haig, recommended by the Good Morning America (GMA) Book Club, and I couldn’t put it down!

The Midnight Library is book about a thirty-something woman who is regretful about her life and feels alienated and unneeded in this world. In the depths of her wallowing, she comes across The Midnight Library. In it, each book represents a portal into another variation of what her life could have been if she had chosen differently.

“Every book in here, every book in this entire library-except one-is a version of your life.

 Except One? This one?

Yes.  That one.  It’s something you’ve written without ever having to type a word.

This book is the source of all your problems, and the answer to them, too.  It is called, my dear, The Book of Regrets.”

All of us at one time or another have felt REGRET. Feelings of regret can stem from looking back on past behaviors and decisions and believing that a better outcome may have occurred if a different choice was made.  Maybe you have heard this also referred to as “hindsight bias”?

Regret also shows up when we fail to live in alignment with our authentic selves, as illustrated in this visual from mindfulambition.net

So how do we live our best life without regrets? Is it even possible?

Author Bronnie Ware is an Australian nurse who spent several years working in palliative care, caring for patients in the last 12 weeks of their lives. Through many, many conversations, she heard and came to understand what people truly regret.  Knowing what others have shared as regrets can save us from regretting those exact same things later! During her observations, Bronnie found these common themes that we all should consider doing and/or maybe even doing a little more.

  1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.
  2. I wish I hadn’t worked so hard-especially on work that I don’t enjoy.
  3. I wish I’d had the courage to express my feelings.
  4. I wish I had stayed in touch with my friends.
  5. I wish that I had let myself be happier.

The greatest tragedy of regret is that regret represents a departure from the path of your best life.

In keeping with last month’s theme of More and Less (Fountain and Drain), let’s also explore a couple of things that we should do less of.

  1. Holding On to Grudges/Resentments: Let go.
  2. Caring What Others Think: You likely won’t care a year from now, heck-you probably won’t even care in a few days… Just do it.

What would your midnight library look like? Would your book of regrets be the thickest, heaviest book on the shelf?  You are writing YOUR story today, right now- “Never underestimate the big importance of small things.”

Like most everything in our life, regret-free living is a journey; it takes awareness, curiosity, practice… and a really BIG sense of humor!

No regrets; not even ONE?  Share a funny experience that you regret below, or you can even email me; I’d love to hear from you!

Tonya Hitschmann, Director of Community Programs

Read the September Newsletter

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Virtual Groups Are Connecting the ALS Community Like Never Before

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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
Youth and Children Groups
  • Youth Peer Support Group for Ages 8 – 13
  • Young Adult Peer Support Group
Specialty Groups

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!

A Note from Tonya: Be a Fountain, Not a Drain

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I have always loved water, from looking at the millions of sparkles and bold reflections, hearing the soft trickles and also the powerful waves, and feeling it cool my skin on the hottest of days.  Now, drinking as much water as I should, that is an entirely different story!

Leonardo da Vinci said, “Water is the driving force of all nature.”

There are many ways in which water can be used as a force, or even witnessed as a force of nature. We can see countless examples of raging seas, the breathtaking effects of water erosion, and even water wells that are saving lives in countries that do not have access to water. Water is truly a powerful natural force, capable of inspiring awe, admiration, and gratitude.  It is essential to our survival. The same can be said of our interactions with others, and even with ourselves. Are we being a fountain or a drain? Are we quenching thirsts or creating a drought?

What I’m talking about here means creating more and consuming less. More positive and less negative. Every single person that you come in to contact with is fighting their own battle(s); something or maybe even many things that they are struggling with. Don’t be a drain. Don’t just merely survive every day while only going through the motions. Don’t take more from others, and from YOURSELF than what you are giving. Pour out good and positivity. Be a fountain. You might be surprised by what can happen when you allow yourself to be vulnerable and communicate with others; your vulnerability can be an inspiration to others. Be a fountain. Ask others how they’re doing, and genuinely CARE.

Author and mental-health advocate, Kevin Hines threw himself off the Golden Gate Bridge 21 years ago and miraculously survived. At the time, he was a distraught 19-year-old college student with bipolar issues and voices in his head that he had kept a secret from his family and doctors for 15 years. Hines had taken a bus to the bridge visibly in tears and shared that he looked to the different strangers he encountered along the way hoping that just one would ask him what was wrong. Nobody did– and Kevin ended up vaulting off the bridge. He has also shared accounts from others who jumped off the bridge, including the story of one man who wrote a suicide note saying he would not go through with it if just one single person smiled at him that day. Don’t be afraid to ask your friends and family members if they are okay. Be a fountain.

We all have days where we just want to be mad, or sad, or plain pessimistic. That’s fine- this is normal and allowed; but keep going! Try again for a good attitude the next day. Set a personal goal to make each day an above average day or as Simon Sinek tells us, an “ahead” day. Work to encourage someone who’s having a worse day than yourself. Be your own kind of happy and let that happiness flow from you. Be a fountain.

Here’s your challenge. Pick out one day of the week and devote it to making the lives of others better. I guarantee you that YOUR day will improve as well. Be a fountain.  Share your experiences below, or you can even email me; I’d love to hear your stories!

Tonya Hitschmann, Director of Community Programs

Read the August Newsletter

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The Rise of Male Caregivers

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In March of last year, ALS Texas launched a caregiver group just for women, Brewed Awakenings.  This group has seen tremendous growth in the last year, and so many ladies throughout the state have connected in both a unique and shared journey to lift each other up, share caregiving resources, and offer encouragement and support in a life experience that most will never truly understand.

Fritz Weiss

Now, in 2021, we are excited to finally launch our Men’s Caregiver Group on August 9, co-facilitated by husband, father, caregiver, and business leader, Fritz Weiss. Our mission is to support every member of the family, in every way that we possibly can, and this new connection group will allow us to support the rise of male caregivers.

Many may imagine a typical family caregiver to be an older woman caring for a loved one and delivering supportive services without pay. Though men may not be typically seen as caregivers today, the truth is that 40 percent of family caregivers are male.

Around 16 million men—husbands, sons, uncles, brothers, and close friends—are caregiving for a loved one, and that number is continuing to grow. (AARP)

Fritz Weiss is married to Laura Weiss, whom he met in a Freshman Chemistry Lab class at Texas A&M in 1983. They married in 1992 and have three wonderful children.

Laura began experiencing symptoms in early 2017 and was diagnosed with Bulbar Onset ALS in June of 2017. Laura and Fritz are both native Houstonians and were still living in Houston at the time.  Shortly after the diagnosis, they moved to the Lake Travis area outside Austin to be closer to family and to enjoy the lake.

As caregivers, men often have smaller emotional support networks and are less likely to seek out programs that could increase their caregiving capabilities and help them cope with this major life change.  Additionally, the insight below regarding male caregivers was also revealed in a recent AARP survey:

  • 66% of men work 40 hours a week. 62% of this group had to make special arrangements for work. 48% were tardy, left early, or took time off to handle caregiving duties. 15% had to take a leave of absence or work part-time.
  • 37% refrained from telling their employer about their caregiving responsibilities. For millennials, that rose to 45%.

According to the Journal of Men’s Studies, “male family caregivers are misperceived as performing only financial and transportation assistance, while women take care of hands-on needs such as dressing, bathing, and cooking.” However, we know that male caregivers do much more than just that.

Last year, during National Family Caregivers Month, we introduced you to husband and caregiver, Tyler Wood. When asked his biggest struggle as a male caregiver, Tyler replied, “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.

Fritz Weiss has been the primary caregiver for Laura since her diagnosis.  As ALS has progressed, Laura’s caregiving needs have increased, and to support those needs, some extremely difficult “executive decisions” have to be made along the way.   In helping to co-facilitate and lead the ALS Texas Men’s Caregiver Group, Fritz will bring his personal experience in juggling the hands-on daily skills and emotional support required of a caregiver, as well as the balancing act of maintaining self-care and continuing to use his personal gifts in a life lived on Purpose.

Fritz earned a degree in Computer Science from Texas A&M in 1987, and had a long, successful career as an Information Technology professional. In 2013, after Fritz retired from the corporate world, he and Laura bought a Salons by JC franchise and began developing and operating salon suite locations.

Fritz has always had a strong interest in real estate and has owned residential and commercial investment properties in Texas and Louisiana.  His experience with Salons by JC gave him further exposure to the world of commercial real estate. During the pandemic and while being a caregiver, Fritz got his Texas real estate agent license and has started working with a local broker to grow a new career in real estate. Also, during this time Fritz earned a US Coast Guard captain’s license. It is amazing what you can do online now!

Before ALS entered his family’s life, Fritz enjoyed spending time on Lake Travis with family and friends, and saltwater fishing on the Texas Gulf Coast and other locations around the globe. He hopes to be able to return to these hobbies someday.

If you are a male caregiver in Texas, you are not alone. We invite you to join us on August 9, and each month thereafter.  If you know one or more of the 16 million male caregivers in the nation, invite them to connect and engage with our ALS Texas community, as we support this rising group of caregivers.

Register for the Men's Caregiver Group

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

Read the July Newsletter

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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

Read the June Newsletter

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Messy Motherhood: Jennifer Mercz’s Story

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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

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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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