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        • How to Improve Mobility
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        • Clinics and Centers
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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

A Note from Tonya: What’s Your Story?

March 3, 2022 by Tonya Hitschmann 2 Comments

People want to hear stories. They want to hear our stories — they want to know where we are from, what we are doing, who we love, and where we are going.

In a recent meeting, our ALS Texas team shared how much we truly enjoy really getting to know our ALS Texas friends. ALS is a big chapter in your journey, but it is certainly not the entire novel.

I have shared before that the Apple TV show, Ted Lasso, is my absolute favorite. I jumped on board early on and was motivated and inspired by the leadership, wit, and wisdom, of the show’s main character and coach, Ted Lasso.  In fact, I ordered a batch of stickers with many of his most popular quotes-and have shared them with my family both here and in the United Kingdom (where the show is based) and am now sharing one of those stickers with you, too!  It’s a twofer-as it has two of my favorites.  “Be curious, Not Judgmental” (original credit to Walt Whitman) and “Be a Goldfish” (original credit to Ted Lasso; referring to having a ten-second memory and letting things go). If you’re curious about when Ted used the Walt Whitman quote, google “Ted Lasso dart scene”.  Not only should we share our stories, but we should ask others about theirs. Stories help define who we are. To know someone well is to know their story—the experiences that have shaped them, and the challenges and obstacles that have tested them.

When we want someone to really know us, we share stories of our childhoods, our families, our school years, our first loves, and the things that have molded and shaped us along the way. And when we want to really know someone, we listen.  We are curious and without judgment, as the journey was not ours to travel.

We also write our own personal narratives or stories. In her book, Rising Strong: The Reckoning. The Rumble. The Revolotion. author Brené Brown shares that “The most powerful stories may be the ones we tell ourselves. But beware—they’re usually fiction. Storytelling helps us all impose order on chaos—including emotional chaos. When we’re in pain, we create a narrative to help us make sense of it. Our stories are also about self-protection.”  She adds several tips for helping to re-write or re-frame your real narrative, so you are then ready to share it with others. Here is an excerpt:

Write it down.

The most effective way to become truly aware of our stories is to write them down, so get your thoughts on paper. Nothing fancy—you can just finish these sentences:

The story I’m making up…
My emotions…
My thinking…
My body…
My beliefs…
My actions…

It’s important that we share our stories. You may not believe it, but your story can help bring hope to people who are hopeless. Your story is unique, and yet within it, at least one other person will discover a shared connection.  Sharing our stories requires both courage and vulnerability, and the desire to connect with others.

Our ALS Texas groups and workshops are perfect places to connect with others and share your stories. Not only are you sharing your ALS chapter, but we encourage you to share the other chapters, too!  Those chapters mentioned above and more-the things you enjoy most, your families, your greatest adventures, your favorite places ever visited-the list goes on and on. You can always find all oour upcoming groups, workshops, and events on our ALS Association Texas Chapter website at alstexas.org/virtual-events!

I’d also really enjoy reading or hearing your story, and invite you to share with us! Just email me.

-Tonya Hitschmann, Director of Community Programs

Read the March Newsletter

View Our Upcoming Virtual Events

Filed Under: Caregivers and 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 from Tonya: What’s So Funny?

January 1, 2022 by Tonya Hitschmann Leave a Comment

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

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

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

A Note from Tonya: Caregiving as a Team

November 6, 2021 by Tonya Hitschmann Leave a Comment

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

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

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

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

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

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

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

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

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

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

Tonya Hitschmann, Director of Community Programs

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

Celebrating ALS Caregivers for National Family Caregivers Month

November 1, 2021 by Tonya Hitschmann 1 Comment

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

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

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

Tonya Hitschmann, Director of Community Programs

National Family Caregivers Month Events

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

Veteran’s Caregiver Interview with Laura Garey

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

Watch the Recording

Trauma-Informed Yoga with Ebony Smith

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

Watch the Recording

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

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

Watch the Recording

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

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

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

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