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A Note from Tonya: What’s So Funny?

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A Note from Tonya: What's So Funny?

As we begin another new year, I am starting it off with a wager, and I’m betting it all.

I bet that not a single person in our ALS Texas community laughed with joy when your neurologist said the letters A L S.  ALS is anything but a laughing matter-for individuals living with ALS, their closets loved ones and caregivers, extended family members, friends, and for our entire ALS Texas team. 

As we all lock arms to tirelessly advance funding for research and clinical trials, to support the 12 incredible multidisciplinary ALS clinics we have throughout the state- and as our ALS Texas team does all that we possibly can to help ease the burden for Texans living with ALS, we can, however, travel the journey together…and with laughter and joy.

Laughter and joy, along with a sense of humor, can help lead to a boost in overall well-being, morale, communication skills, and quality of life. Let’s keep in mind that overall well-being is not only related to our physical wellness, but also to our mental and social health.  Let’s also keep in mind that for our friends living with ALS, communication skills are available in several different ways.

Humor isn’t just about laughing and having fun, although that’s a big part of it. It’s also an effective tool in lifting plunging spirits; a well-established notion that’s 100% supported by scientific research. The curative power of laughter, along with its ability to relieve stress and burnout, may just be one of the greatest medical discoveries of our time.

Humor, especially during extremely stressful moments, has the benefit of acting like a “release valve,” relieving tension — if even for a moment — so everyone can re-set and re-evaluate.  It can help us travel emotional tunnels and complete stress cycles. It is indeed the glue that holds our most important human connections and relationships together.

Being able to find ways to laugh and things in which to laugh at can be great for our quality of life, no matter our point in life.

Laughter relieves stress, and laughter is an excellent defense mechanism. Some people may not always feel like being angry, sad, or scared at their current circumstances. Feeling amused by circumstances and finding anything to laugh at is a perfectly healthy way to feel and express yourself.

Laughing can improve moods and lighten a situation.  Humor can be found most anywhere. Remember one of the words I mention and share most often? PERSPECTIVE.

It’s a workout for the body. When physically possible, a good belly laugh stimulates the muscles of the stomach and face and helps digestion. It produces happy hormones, pain-relieving endorphins, and tears – it’s as physically and emotionally therapeutic as crying without the sadness.

It’s good for the brain. Some academic researchers say that the brain enjoys laughter as well – endorphins help release tension and people feel better mentally.

It helps create valuable memories. Sharing funny stories and reminiscing about fun stories from the past can lead to lots of laughter and help bring everyone closer together.

It builds support and trust. Being around other people going through similar circumstances can help create strong connections, especially if you all can find humor in some situations. Our ALS Texas Connection Groups, caregiver groups, workshops and events are the perfect places to help find some humor, and to build that support and trust!

It helps you feel in control. Giving yourself permission to laugh at a situation can go a long way.

Tell me something good!

Comment below or email tonya@alstexas.org to share your funny stories, and how you’re adding laughter to your life. I’d love to hear from you, and in a final bet, I wager that many, many others would like to hear from you as well.

Happy New Year!
-Tonya Hitschmann, Director of Community Programs

Read the January Newsletter
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A Note for Tonya: CompARROGANCE – The Comparison Trap

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On a recent Sunday, my friend and pastor shared another one of his many powerful messages.  The focus of this message was centered on living a life where kindness and generosity come naturally. Not only do I follow along in the listening guide and “fill in the blanks” of the printed outline of the message, but every week I also find myself making even more notes in the margins-quotes, words and phrases that stand out, and the parts of the message that most resonate with me. On this day, I wrote the word COMPARROGANCE.

“CompARROGANCE”:  Compare + Arrogance= CompARROGANCE

I think that one of the reasons it caught my attention is that as we find ourselves at the end of yet another year, it is so easy to compare 2021 to 2020, or any other year for that matter. Given the significant events which occurred throughout 2020, it is not surprising we are dealing with a multitude of fears that carried over in to 2021, and we seek to find reassurance wherever we can. We compare our victories and success, and we compare the challenges and struggles. We create a type of measuring stick in our minds, wouldn’t you agree?  Of course, one of the biggest problems with that imaginary measuring stick, is that we can always find a way to compare one thing to another.

Do you ever find yourself comparing yourself to other people? Comparing your life journey to that of someone you know? Of course, you do; you’re human. You and I have lots to learn from other people, and yet there is a world of difference between tracking with others to grow, learn, empathize, or celebrate versus tracking with others to see how we, or our lives stack up. One is at its core healthy, the other, destructive. In the second scenario, comparing to see how our situation stacks up is a trap, and becomes a prison cell that keeps us from achieving our true potential.

Somebody once said that comparison is the thief of joy. In other words, if you’re always comparing yourself to other people, then you’ll never be happy. Comparison with others often leaves us with an empty feeling in the pit of our stomach at the unfairness of life and its gifts. It is perhaps, the most foolish human activity of all time- and yet all of us have been fools.

For our friends who are on a journey with ALS, it can happen quite often. An ALS diagnosis is traumatic for every single family member. It’s not fair; it’s not deserved, and why are many others spared? An ALS diagnosis can come at different ages and at different stages in life, and each ALS experience can look very different in both symptoms of progression and in the timeframe.  All of these could be compared to someone else. Enter COMPARROGANCE.  Comparrogance involves observing, assessing, evaluating differences and it quickly leads to a value judgment that produces one of two outcomes: 1) arrogant superiority, or 2) envious inferiority. Comparisons can make it very difficult for us to empathize with another person’s situation-believing it isn’t as bad as ours; and discounting someone else’s pain.

So how can we learn more humility?  We can learn it from anyone and anywhere, and it’s an open book!  Seriously…

  • Keep a physical notebook, phone, or alternative communication device handy. Whatever your method, take notes when you have lunch with someone, attend an ALS workshop, or listen to a presentation. Glean insights from others.
  • Recognize when you are most susceptible to comparison. You will likely see that the pattern of comparison is most distressing when it closely reflects something that you value, or something that you think others value. Note those values so you can see it in black and white and assess whether you think they are true or not. When and what triggers you most?
  • Practice self-compassion. Your feelings are OK, whatever they are. There is nothing wrong with any emotion! Let’s not add shame, guilt, or criticism to our natural desire to compare. The trick is to see it for what it is, a way that our brain likes to work out how we’re doing. It is not always the truth and not always useful and that is why we need to evaluate it.
  • Consider other perspectives. When we evaluate the truth in our comparisons, remember we are seeing only one perspective. Think of it like the camera on a laptop for a virtual meeting, it only shows the background you choose it to show, you don’t point the camera at the messy desk or messy floor, the dirty clothes pile on the corner. We only see one perspective when we look at the lives of others; we never really know the whole picture. People’s lives can be just as complicated as yours, don’t oversimplify.
  • Take Action. Try using comparison as a guide for what you want to do, achieve, and be. Use it to inspire you towards your goals. Action is how we move forward, simply watching from the outside is not. Remember…Impossible is an opinion. Living your life in the direction that you want to, and on PURPOSE, will make comparison much less important.

-Tonya Hitschmann, Director of Community Programs

Read the December Newsletter

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A Note from Tonya: Caregiving as a Team

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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

Celebrating ALS Caregivers for National Family Caregivers Month

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“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

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

View Our Upcoming Virtual Events

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, 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 every second Monday of the month for this virtual group.  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