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    • Research News
    • ALS Association Research
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      • How to Share Your Diagnosis
      • Second Opinions
      • Resources
      • Clinics and Centers
    • Living with ALS
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      • Therapies & Care
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        • How to Improve Mobility
        • Dealing with Breathing Issues
        • Dealing with Speech & Swallowing Issues
        • Types of Assistive Equipment & Technology
        • Clinics and Centers
      • Living Setting
      • Daily Living Activities
      • Leisure Activities
      • Accessible Vehicles
      • More in Depth Resources/Manuals
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      • Changes in Thinking & Emotional Lability
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      • The Cowtown Affair
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A Note from Tonya: The Power of Small

June 4, 2022 by Tonya Hitschmann 2 Comments

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

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

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

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

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

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

Why are small wins important?

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

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

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

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

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

  1. It gives you motivation to keep going.

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

  1. It makes you feel happy.

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

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

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

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

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

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

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

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

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

-Tonya Hitschmann, Director of Community Programs

Read the June Newsletter

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

A Note from Tonya: May, May Be the Answer

May 6, 2022 by Rhema Jones Leave a Comment

May is National ALS Awareness Month, a month that is dedicated to education about the disease and the efforts happening around the world to find a cure, and to advocating for people with ALS and for their caregivers.

While designating one month as an “awareness” month is surely not an instantaneous fix, the increased visibility of the clinical statistics and shared personal stories just may be the missing pieces of the ALS puzzle.

Awareness can also be a tool for advocacy, an opportunity to connect with policy makers and share the urgency of action; backed up by our entire ALS Texas community! Every clinical trial, every milestone in advocacy leads us one step closer to creating a world without ALS.

Did you know that:

  • There are currently 58 active clinical research trials in Texas?
  • On December 23, 2021 we reached a groundbreaking milestone for the ALS community. President Joe Biden signed the Access to Critical Therapies (ACT) for ALS Act into law? ACT for ALS brings hope to the fight against ALS.
  • See more of our community’s impact in 2021:

There area number of ways to raise awareness, to help ensure that your voice is heard-and there is no age limit. Coming together as a community gives everyone an opportunity to become involved.

In Texas, we know that there are more than 3,000 young caregivers ages 5-30 years of age, and during the month of May, even youth and children can take action.  We’ll tell you exactly how to do this and more in this newsletter!

How can you continue to raise awareness in the fight against ALS this month?

  • Urge your representatives to support ALS research funding by signing the Dear Colleague letter.
  • Tell Insurers and Policy Makers to Ban Discrimination Against People Living With ALS
    The Institute for Clinical and Economic Review (ICER) is reviewing Amylyx Pharmaceutical’s AMX0035 and Mitsubishi Tanabe Pharma America’s (MTPA) oral edaravone. Their review will make a “value assessment” on these new therapies which will impact decisions on cost and access made by private and public insurance such as Medicaid at the state level and Veteran’s Affairs at the federal level. ICER’s value assessment uses methodology which has been called discriminatory by the National Council on Disability, a trusted advisor of the President and Congress. Sign the petition linked below to tell insurers and policy makers to ensure people living with ALS have immediate, full coverage and affordable access to new therapies. Sign our petition here.
  • Get an early start, and form your Walk to Defeat ALS team with family and friends.
    • Celebrate with us in October! We will be walking in-person in cities across Texas –
      Dallas, San Antonio, and The Woodlands on October 1.
      Austin, Fort Worth, and Houston on October 15.
      El Paso and Rio Grande Valley on October 29.

Awareness creates a foundation for change.

Together, as an ALS Texas community, in May and every month, let’s lock arms and be the catalyst for change!

-Tonya Hitschmann, Director of Community Programs

Read the May Newsletter

View Our Upcoming Virtual Events

 

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

A Note from Tonya: No Foolin’

April 1, 2022 by Tonya Hitschmann Leave a Comment

How many times have you heard yourself say, “I know I shouldn’t be doing this, but . . .” followed with an excuse for the bad choice you are about to make?  Everybody has done this, but those who are fooling themselves keep doing it instead of learning from it and moving forward.

We are creatures of habit.  The big question is “are you a creature of good habits or bad habits?”  If you are a creature of bad habits, maybe it’s time to look at how you have been fooling yourself by telling yourself things like, “it’s not so bad” or “I could be doing worse things.”  What do you REALLY, REALLY want in your life?  Are the choices you are making helping you reach your goals, or hindering you?  Maybe you just don’t know.  You are confused about everything these days, and without exploration, that can lead to worse habits.

I have always been a bookworm.  As a child, I participated in every read-a-thon and reading contest offered at school.  I enjoyed the challenge of moving up levels in the accelerated reader activities, and most of all I enjoyed going to new and different places in my head and learning new things-even if it was only solving the latest Nancy Drew mystery.  Not much has changed today.  Sometimes I read as fun escape. Others, I read to really learn, to challenge myself, and attempt to understand all that I am called to bring to this life.  I have a few favorites that I am reading right now. While one is Valerie Bertinelli’s Enough Already-love her!  I have two others on the table and in the lineup waiting to be called in-depending upon the day and my mood.  The quote below is from one of these books.

“I need time for my confusion.” Confusion can be a cue that there’s new territory to be explored or a fresh puzzle to be solved. – Adam Grant, Think Again: The Power of Knowing What You Don’t Know

Take a minute to think of one are area of your life in which you are confused or have been “fooling yourself”. Did you know that it truly is possible to be grateful and in pain at the same time? We have all heard that life can be “bittersweet”, or maybe you’ve also heard that life is “brutiful”. Do we let our confusion about these seemingly contradictory states lead us to creating some bad habits?  The other book on my table is Bittersweet: How Sorrow and Longing Make Us Whole– by Susan Cain.  Below is a wonderful description of this book, and the bittersweet lessons that life brings.

…she (author Susan Cain) employs the same mix of research, storytelling, and memoir to explore why we experience sorrow and longing, and the surprising lessons these states of mind teach us about creativity, compassion, leadership, spirituality, mortality and love.

Bittersweetness is a tendency to states of long­ing, poignancy, and sorrow; an acute aware­ness of passing time; and a curiously piercing joy at the beauty of the world. It recognizes that light and dark, birth and death—bitter and sweet—are forever paired.

If you’ve ever wondered why you like sad music . . .
If you find comfort or inspiration in a rainy day . . .
If you react intensely to music, art, nature, and beauty . . .

Then you probably identify with the bitter­sweet state of mind.

And this quote from Susan Cain’s book, is one of my favorites. “Whatever pain you can’t get rid of, make it your creative offering.” 

What are your creative offerings are you holding on to? Do you have some creative habits right now or ones that you would like to develop?  How can you turn pain in to power, in a bittersweet and brutiful combination of a life lived on Purpose?

  1. Put your fears aside and let your voice be heard. Sing, write, speak, or draw. Do what feels right for your journey. Journaling is an incredible way to write with ease and allow your voice to be heard in a safe place. This is powerfully good habit.
  2. Step outside of your comfort zone. Do new things and make new memories in any way that you can-more memories made= power.
  3. Practice Resilience. Change your perspective-why is this happening FOR me and not TO me?  Owning your response, your reaction to life is your power.
  4. Create a positive environment. What and who are around you? Is it peaceful? It is your space. It is safe? This is power.
  5. Take time each day for self-care and reflection. Start with one minute a day. This is power.

If you aren’t happy with the way things are going in your life, it’s time to stop fooling yourself. Take an honest look at what you might be doing to create bad habits and begin to make the change.  It’s time to create the life you want-No fooling!

-Tonya Hitschmann, Director of Community Programs

Read the April Newsletter

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Filed Under: Caregivers and Family Tagged With: caregivers, family

ALS’s Youngest Caregivers: Caring with Love

January 25, 2022 by Tonya Hitschmann Leave a Comment

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

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

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

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

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

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

Words of empowerment and support for young caregivers:

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

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

Tonya Hitschmann, Director of Community Programs

Caring with Love Virtual Events

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

Facebook Live Interview with Ronan Kotiya

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

Trauma-Informed Yoga for Kids with Yoga N Da Hood

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

Young Caregiver Panel Discussion

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

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

A Note for Tonya: CompARROGANCE – The Comparison Trap

December 4, 2021 by Tonya Hitschmann 2 Comments

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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Filed Under: Caregivers and Family Tagged With: als community, caregivers, Community, family

A Note from Tonya: Seasons of Change

October 2, 2021 by Tonya Hitschmann Leave a Comment

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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Filed Under: Caregivers and Family Tagged With: caregivers, Community

Virtual Groups Are Connecting the ALS Community Like Never Before

August 30, 2021 by Rhema Jones Leave a Comment

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

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

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

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

Virtual Platforms Extend Our Community

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

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

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

A Group for EVERYONE on the ALS Journey

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

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

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

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

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

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

The Future of Virtual Groups

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

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

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

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

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

The Rise of Male Caregivers

August 2, 2021 by Tonya Hitschmann Leave a Comment

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

Filed Under: Caregivers and Family, Stories Tagged With: als stories, caregivers

A Note from Tonya: Playing the Game of Life

July 10, 2021 by Tonya Hitschmann Leave a Comment

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

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

June 5, 2021 by Tonya Hitschmann 2 Comments

“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

View Our Upcoming Virtual Events

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

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