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A Note from Tonya: May, May Be the Answer

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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

 

Under Ballou Skies Hero: Michael Christian

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Michael Christian is a man of many talents; from playing music, to restoring antiques he has always been a hands-on person. Though Michael has lived in many places, his love of music has always followed him wherever he travelled. He has played the drums in many different bands and loves to joke about his experiences. He and his wife, Susan, decided to settle down in Texas after the birth of their son, and Michael opened his own business where he restored and repaired furniture. He also continued his love of music by joining the Austin Banjo Club.

“I had my business for close to 30 years. My hands could make anything I wanted, and they could play the drums,” Michael said, “I noticed my hands were getting uncooperative. I went out to my workshop to hammer a tiny nail into a tiny board, and as I swung my hammer, my wrist just flipped over. That was a shock, but that was the beginning of going to three different neurologists to be tested.”

This was the beginning of Michael’s ALS journey. He and Susan visited multiple doctors in the hope that one of them would be able to rule out ALS as the cause of the weakness in Michael’s arms. Finally, on a visit to Houston, Michael was officially diagnosed with ALS. After the diagnosis, Michael was able to continue playing music with the use of special wrist splints, but by 2018, Michael’s ALS had progressed to a point where he had to give up his music playing career.

Even with Susan’s history as a nurse, ALS was difficult to understand.

“What did we know about ALS?” Susan said about her reaction to the diagnosis, “I was a registered nurse for 50 to 60 years. I worked full time, I knew about ALS, but what did I really know about it other than it is Lou Gehrig’s disease. It was an opportunity for us to get educated about it all and to meet a lot of people with ALS”

By connecting with the ALS Association of Texas, Michael and Susan have been able to find support among other members of the ALS community. They both attend support groups where they connect with others going through similar struggles.

“The ALS Association of Texas has just been completely wonderful to us in our lives. We go to the meeting where we talk with other members, and all of that stuff is so informative and important to let you feel like you’re part of a community that totally understands what you’re going through. Any question about ALS is answered so quickly. Without the Association, I would feel totally lost.” Michael said.

Michael is a naturally upbeat person, and he approaches his life with ALS with optimism and humor. He focuses on the positive things in his life, like the friends and family who still bring him joy every day.

“My own thankfulness is that I have Susan, we’ve been married for 43 years, and she was a nurse, so she’s just a 5-star caregiver. Our two grandsons from our daughter and her husband are just a hoot, and we love them so much, they’re so entertaining and usually have us in hysterics. As far as reasons to live, our grandsons are two of them. I don’t know how much longer I’ll get to see them grow up, but I’m looking forward to every minute of watching that happen.”

Though the road is long, Michael still has hope that one day, a cure will be found for ALS.

“I don’t think any of us are expecting miracles, but by golly, we’ll still take it.”

Register for the Under Ballou Skies Golf Classic and Party

How the Equipment Loan Program Goes Beyond the Delivery

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Texans living with ALS rely on medical equipment to help them walk, speak, move, and breathe on their own. Through the Equipment Loan Program, these families in need can access the equipment they need at no cost. This program is more than just the physical delivery of equipment to a family’s door. It is an incredible resource of knowledge, independence, safety, and hope to Texans with ALS.

Here are just a few ways our team together with community partners support the ALS Texas community beyond the delivery:

Collaborative Care through Equipment

Conversations regarding equipment typically start in the multidisciplinary ALS clinic. The different therapists—speech, occupational, physical, respiratory, etc.—can work together to give Texans with ALS a clear, collaborative picture of their equipment needs. Texans with ALS often go several months between one clinic visit to the next, but equipment needs constantly change.

In-home visits are critical in keeping up-to-date with these needs. Our team utilizes these visits to identify additional equipment needs and any changes needed to equipment being used. When ALS Texas is unable to make these visits, community partners like RQS fill in the gaps.

“When we’re in the homes, we are the eyes and ears, and we can intervene with all of this stuff,” Fernando Ortiz, Respiratory Therapist at RQS

Though RQS’s focus is respiratory needs, their team members are very attentive to the other needs of Texans with ALS. They relay this information to ALS Texas and the clinic, ensuring equipment needs are met in real time.

Navigating Equipment Needs through Insurance

For those with insurance or other health benefits, knowing when and how to leverage  those benefits for equipment becomes confusing. Our team is here as a guide through those processes.

For example, Medicare will only cover one wheelchair purchase every five years. At first instinct, many families would use their insurance to cover the immediate need of the manual wheelchair. Our equipment team educates ALS families about this policy, directing them to utilize the no-cost Equipment Loan Program for their manual wheelchair. That way they can then use their benefits to cover the more expensive power wheelchair down the road.

Even after they are approved for equipment through insurance, Texans with ALS can wait months before receiving their deceives. The Equipment Loan Program fills the gaps with loaners from power wheelchairs to speech devices until their customized equipment arrives.

Staying Proactive

While every person’s ALS progression presents differently, staying proactive is critical to ensuring equipment needs are met in a timely manner for the maximum benefit. This is especially important when it comes to respiratory care. Keeping the respiratory system strong and healthy is crucial in preventing other illness.

“If we stay one step ahead of it, the outcome is better. We prevent them from catching pneumonia. We prevent them from admitting into the hospital, going into respiratory failure or respiratory distress,” Fernando with RQS shared.

Respiratory care for ALS is unique. With most other diagnoses, breathing devices are used to rebuild strength to a point where the machine is no longer necessary. On the contrary, people living with ALS benefit from using these devices long-term. The team at RQS begins this education at the very beginning when families are originally diagnosed.

This approach to equipment education is beneficial on all fronts—nutrition, breathing, walking, and speaking. “The more education that we can give the Texan with ALS and the family members up front, the more we will keep them out of getting into trouble down the road.” – Fernando RQS

Overcoming Fears and Building Confidence

ALS is an overwhelming disease. The transition from pre-equipment use to equipment use is challenging for both those living with the disease and their caregivers. “There’s an emotional barrier, a mental barrier there, to accepting equipment, and accepting the assistance from equipment,” shared Steve Morse, VP of Mission Delivery at ALS Texas.

Our team and our community partners like RQS are here to support these families as they navigate these fears and questions regarding their changing needs. When Texans with ALS and their caregivers gain the confidence to accept equipment and the knowledge of equipment, their lives change for the better. Caregivers feel equipped to give independent and safe care to their loved ones. Texans with ALS gain their mobility and a sense of normalcy back.

The Equipment Loan Program is truly life-changing for the Texans with ALS and their caregivers. Beyond the delivery of no-cost equipment to their door, our team and community partners like RQS are dedicated to supporting them at every stage of this disease. But we can’t do it without you.

When you support the Equipment Loan Program, you give Texans with ALS their voice back, their mobility back, and their quality of life back. Will you give? RQS has provided a $10,000 donation match for the Equipment Loan Program. Don’t miss the chance to DOUBLE your impact!

Donate to Support the Equipment Loan Program

Learn more about the equipment loan progam

Three of the Most Common Equipment Needs for Texans Living with ALS

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ALS is an expensive disease and paying for necessary medical equipment is a heavy burden for many families. The ALS Association of Texas supports Texans with ALS with our Equipment Loan Program. This program helps Texans get access to equipment they need, at no cost to the family, so that they can stay mobile, communicate, and navigate everyday tasks. We also provide the education that people with ALS and their loved ones need to ensure that the equipment is operated safely.

Each person has their own unique needs as they navigate their life with ALS, and there are many different types of equipment to help with mobility, communication, and more. Here are some of the most common items needed by people with ALS.

  1. Power Wheelchairs

As ALS robs a person of the ability to use their limbs, a power wheelchair can help someone living with ALS retain their mobility. The average retail cost for a power wheelchair is $30,000, but as additions and alterations are made to the chair, costs can go as high as $70,000. Wheelchairs are a critical tool to help Texans with ALS maintain their independence and have the freedom to move around both in their home and in public spaces.

  1. Communication Devices

The ability to communicate is crucial to people living with ALS. Communication devices, like eye-controlled devices, allow Texans with ALS to continue to communicate with their friends and family even after the disease has robbed them of their ability to speak. These devices can be as expensive as $20,000 and constantly need upgrades due to changes and improvements in technology and software. Though the cost is high, the value someone gets from being able to communicate is priceless.

  1. Patient Lifts

Moving in and out of a wheelchair becomes increasingly difficult for people with ALS as the disease progresses. Many caregivers have difficulty, and sometimes suffer  injuries, trying to move their loved one in and out of their wheelchair.  A patient lift can be either manual or electric, and it helps reduce the difficulty associated with moving from a wheelchair into bed, the shower, or other areas of the home. This ensures the safety of both the caregiver and their loved one with ALS. An electric lift costs about $2,500 and helps reduce stress on the person with ALS and their caregiver.

While these 3 pieces of equipment are items that nearly every person with ALS will need at some point, there are many more pieces of equipment necessary to ensure the health and happiness of someone living with ALS.  Neck braces to aid posture, shower chairs to assist with hygiene, and breathing machines are just a few of the other items that a person with ALS may need in their day to day lives.

“The number of patients and families that we serve has grown substantially,” Equipment Program Manager, Marshall Nelson says, “Our budget is bigger now for the equipment program too which helps with trying to meet the needs of more people.”

The ALS Association of Texas strives to provide all these things and more to Texans with ALS. Need help with equipment? Contact our Equipment Program Manager, Marshall Nelson.

Learn more about the equipment loan program

Sweet Patina Challenge Brings New Life to the Fight Against ALS

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When Blake Evans felt inspired to combine his passion for cars with his heart for the ALS community, something unexpected happened. One rusty ‘57 Chevy and 48 states later, Blake and a small crew of family and friends created the Sweet Patina Challenge to embark what seemed like an impossible road trip to support the fight against ALS.

A Family Passion for Cars

Blake Evans, born and raised in Mississippi, grew up around cars from an early age. “I was born into it. My grandfather and my dad were old car guys,” he shared. “They restored old cars and always did the car show things.” The family passion for car restoration trickled down to Blake, and as he grew older, so did his own interest in cars.

“My main passion and hobby in life is tinkering with these old cars and taking them out on road trips, going out and finding the old junky ones that nobody thinks will ever run again and bringing them back to life.”

Today at 38-years-old, Blake lives in North Texas with his high school sweetheart wife of 14 years. They moved to Texas about 15 years ago when she came to be a cheerleader for the Dallas Cowboys. And now they have three beautiful children, one girl and two boys. They thought they’d be in Texas for just a couple of years. However, the Evans family fell in love with the Lone Star State and never left.

One thing didn’t change though—Blake’s love of cars. Years before coming to Texas, Blake also discovered another key passion that would later inspire him to join the fight to defeat ALS.

An Unexpected Interest in Healthcare

When it came time for Blake to graduate from high school, he knew he didn’t want to follow the traditional college route. “I actually wanted to be a firefighter when I graduated high school,” he shared. Unfortunately, Blake pinched a nerve while working for a fence company which put a pause on these plans.

“I went to a physical therapist and he started talking me through the education and all to become a Physical Therapists Assistant (PTA).” This chance encounter changed the trajectory of Blake’s life. Following much thought, Blake decided he wanted to pursue this career path—“I realized it was possible.”

Blake graduated from the PTA program in 2007 and immediately started working in sports rehab at an outpatient clinic. He also gained experience with nursing home and hospital work at this time. After moving to Texas with his wife, he found himself working in home health. That’s where Blake felt he shone as a PTA. “It just really clicked with my personality.”

Through this position, he met many people and supported them through numerous diseases such as Parkinson’s, MS, and ALS. “There’s such a wide variety of stuff you get with home health. It’s not just cookie cutter.”

A Budding Friendship

While Blake encountered many families along his career, he connected deeply with one of them. Several years ago, he met Mr. Bernard Rudler, who was living with ALS, and his wife. “There was something about Mr. Bernard that me and him kinda clicked. He had always been watching the old car restoration shows when I’d be there.”

Both Blake and Bernard enjoyed motorcycles and old cars. They connected more with each other more as Blake shared the adventures of fixing cars with his father. He would bring photos to share with Bernard of the cars during their appointments.

Through this friendship, Blake discovered the hardships those living with ALS and their caregivers face daily. “It’s heartbreaking,” he shared. “We’ve got these people battling this disease that there’s no cure for!” He decided that he wanted to do something about it.

Discovering the Patina World

While Blake worked as a Physical Therapists Assistant, he still found time to visit his dad to restore old cars. In fact, his father is known as one of the best automotive painters in Mississippi.

“Everybody is used to us having the really pretty shiny old cars,” Blake noted. He noticed a new trend growing in the car restoration space. Folks would restore the interior and hardware of an old rusty car but leave them rusty. This style of car generates a lot of attention. “You roll up in a rusty car and people wonder how you even got here,” Blake shared laughing. “It got us into the Patina World—which is the rusty car look.”

Blake and his father started doing road trips with their restored patina cars. These trips would soon inspire him to start his own challenge. He experienced some burnout with the traditional car shows, but he didn’t want to give up on his hobby. In 2018, an idea struck him.

“If we could take my career in healthcare, my passion for the old cars, and my love for helping other people and put them all together, this was kind of the recipe for it. The rest of it just started happening.”

Inspiration to Support the ALS Mission

Blake recalls the day he approached his dad about the idea. “We need to be doing something bigger, for a cause or something.” When his father asked what he had in mind, Blake responded, “I think I’m gonna try to drive this old car to 48 states.”

Blake’s father was shocked at the suggestion. “You think it can make it that far?” he asked. His father also brought up the considerations of having to balance family, home, work and an intense road trip. But Blake was persistent and knew he could do it. “The idea kept coming in my mind and I couldn’t shake it. I’m sure I bugged the heck out of my wife with it. She’s always supporting of my crazy ideas,” Blake shared.

He knew he wanted this road trip to act as a fundraiser for ALS, so he approached Mr. Bernard about the idea. Like many others, Bernard’s first question was, ‘You think that car’s gonna make it that far?’ And when Blake revealed he wanted the trip to benefit ALS, he remembered how Mr. Bernard selflessly responded. ‘Don’t do anything to raise money for me. Raise it for the Association [of Texas].’ Blake connected with ALS Texas to get everything set up.

The Sweet Patina Challenge

Pretty soon, they departed in a 57’ Chevy and the Sweet Patina Challenge was born. “You go drive a new car to 48-states, you’re like ‘that’s cool.’ But if you can take an old car and do it, everybody’s paying attention to that,” Blake shared.

Their main goal was to travel to the lower-48 states and participate in car shows along the way. The funds raised from these shows and the help of community sponsors supported their travels and most importantly create greater contributions to the ALS Association chapters.

Upon establishing his goals for the trip, Blake then turned to the community that he loved dearly. “I knew how generous the car community was,” Blake shared. He worked to build a team of partners and who could help with the cross-country road trip. “We were very mission driven.”.

The team split up Sweet Patina Challenge into four different legs. They partnered with shops across the country to store the car between the segments of the trip. This allowed Blake and the team to spend precious time with family and maintain their local obligations.

Blakes dedicated team of his father and friends were with him every mile of the trip. “We were extremely blessed. We had two different friends of ours who were mechanically inclined…They kept the car exactly how we needed it.”

Memorable People and Places Along the Way

Along the way, they not only stopped at car shows, but also notable tourist attractions. “We tried to hit most of the big landmarks because that’s where the crowds would be,” Blake shared. He listed off many places like Niagara Falls, Mount Rushmore, Pike’s Peak, Devil’s Tower, Yellowstone, Yosemite, and Sequoia National Park. He laughed as he remembered the day the team drove across Death Valley in California. They even fried an egg on the hood of the Chevy to demonstrate the intense temperatures.

“The highlights of the trip would definitely be getting to actually stop and meet the people that are battling it [ALS].” Through those families, he saw not only how the disease affects each patient differently, but also the hardship it places on the caregivers. “It’s really tough to see the caregivers struggling.” These encounters only lit more fire in Blake to help in the pursuit of a cure and better resources for ALS caregivers.

Inspiring Nationwide Local Support for the ALS Mission

Not only did they support the ALS Association Texas Chapter, but they also created fundraisers for all 42 chapters in the US. Whenever possible, Blake’s crew met with other local ALS Association chapters along the way. The more attention the car generated, the more they could share the ALS mission with the entire country.

“You go drive a new car to 48-states, you’re like ‘that’s cool.’ But If you can take an old car and do it, everybody’s paying attention to that.”

They would direct folks to donate to their local chapters when they asked about the road trip. “Now we have donations in 21 of the chapters across the country,” Blake enthusiastically shared. Just in the beginning of November, the team hit the $32,000 mark of total donations nationwide. Texas leads that effort with about $25,000 in donations! “It was an incredible trip. It’s kind of emotional thinking back on it,” Blake reminisced.

Honoring the Man Who Inspired the Challenge

Mr. Bernard Rudler passed from ALS earlier in 2020. While Blake couldn’t finish the trip before his passing, he knew Mr. Bernard wanted him to continue the fight against ALS. The fond memories of Mr. Bernard carried his team forward.

Blake, his father, and friends, Neal and Jacobe, kept on pushing and finished the final west-coast leg of the trip this summer. He remembered how the four men would celebrate with high-fives and hugs at each stop, feeling prouder as they came closer to finishing the goal.

“We took what passion we had for doing and we stuck to it…No excuses. We finished our 48-state drive.” – Blake Evans.

Turning Your Passion into Action

When asked how he’d encourage others to join the fight to defeat ALS, Blake emphasized the importance of passion. “If you can find something that you’re passionate about, you can make it successful. It’s gonna take persistence. Its gonna take time and sacrifice…. Know that it’s going to a good cause.”

For Blake his love of cars and passion for the ALS community turned into something amazing that will impact not only Texans with ALS but also those living ALS across the entire country. “I’m just proud that we did it,” he joyfully shared.

Blake like many others hopes to one day find a cure for ALS. He also hopes for better support for caregivers across the country and treatments to slow the progression. Every one of us has a role to play in the fight to for a world without ALS. “We all just gotta keep doing what we can to help find a cure,” he shared. Blake alluded to wanting to do another road trip down the road, but we’ll have to wait to see what the future holds.

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Blake extends his sincere thanks to the friends, family, community partners and sponsors who helped make his trip possible. View them here.

A Note from Tonya: No Foolin’

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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

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Mowing Down ALS One Yard at a Time

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At fifteen-years-old, David Sedate is no stranger to ALS. When he was just 8, his Grandpa Rich was diagnosed with the disease and passed two years later. Today, David has committed to honoring his grandfather’s legacy by supporting the fight to end ALS. 

One of David’s favorite memories of his Grandpa Rich was when they’d vacation to Montana together. It’s where Rich had grown up. Their 2012 trip would forever change their lives. It was then that the family first started noticing respiratory symptoms in their Grandpa. He’d soon after being diagnosed with ALS after visiting the ALS Clinic at UT Health San Antonio.

Following the diagnosis, the Sedate family relocated to a larger home to make room for their grandparents to move in. Rich’s ALS progressed quickly. Just soon after the family found out he had the disease, he couldn’t walk well anymore. He relied on a wheelchair to get around the house and spent a lot of time in bed. “It was always hard to see him like that,” David shared. But despite the adjustments he felt grateful that his grandpa was so close. “I got to spend a lot of time with him and see him a lot.”

Finding Support through ALS Texas

During that time, the family found support through the ALS Association of Texas. David’s mother recalls the challenges she faced making sure her father had the supplies he needed. “I found out and what I know a lot of ALS caregivers face is my dad was prescribed equipment that he needed, but the insurance doesn’t exactly really quickly approve all of those kinds of things, and so you get caught in the middle.”

She shared how ALS Texas was there to help fill the gaps when needed. At one point, Rich was in major need of a BIPAP machine. Unfortunately, insurance didn’t work fast enough to approve it. Through the equipment loan program at ALS Texas, the family was loaned a BIPAP machine free of cost. They even utilized a volunteer respiratory therapist who came to their house to show them how to use the machine.

I saw his lungs be able to fill up with air and it was the first deep breath he’d taken in a long time—and I just started crying. – Kristin Sedate

Through the Equipment Loan Program, they also received ramps to make the home accessible for Grandpa Rich’s wheelchair. The family also found community through local support groups.

Remembering Beautiful Moments

Just two years after being diagnosed with ALS, Grandpa Rich passed from the disease. Though he’s no longer with David physically, his memories of his grandfather carry him forward. David reminisced on the sweet memories he’d made with his Grandpa Rich during his childhood—from camping trips, to hikes, to exploring the State of Texas.

Even while living with ALS, David’s grandfather kept making memories. He taught David how to play the board game, Cribbage, and played it together every chance they got. One of his favorite memories with his grandfather after the diagnosis was the time he came to Grandparent’s Day at his school.

“So even it meant a lot to me, cause even though you know he was struggling with all the stuff he decided to come out and spend the day with me, it really meant a lot,” David shared.

Mowing Down ALS

David cherishes the memory of his Grandpa Rich as he navigates life. Today, he’s a Sophomore at Ronald Reagan High School and plays the trumpet in the school’s marching band. His band just recently won ninth place at the National Marching Band competition. When he’s not at school or band practice, David spends time with his new dog Pepper. He’s also found joy in a practical hobby—mowing lawns.

David’s older brother used to mow lawns for family and friends. When David turned 14, he started mowing lawns himself to make extra money. Instead of keeping the earnings to himself, David decided to contribute a portion of each lawn a good cause. He chose ALS Texas to receive those funds to support people like his Grandpa Rich living with the disease.

David’s mom, Kristin, is very proud of him and the work he’s doing in memory of her father through David’s Mow Down ALS. He encourages other youth to not be discouraged in getting involved in fundraising. Even the small amounts add up and bring us closer to a world without this terrible disease. Together, we can find a cure!

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Shoot Out ALS Hero: Diane Tobin

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For every Texan living with ALS, a caregiver is standing by their side every step of the way. The selfless care of their loved ones with ALS is an inspiration to our community. That’s why for the first time in ALS Texas history, Diane Tobin, an ALS caregiver, will be honored as the ALS Hero for the 2022 Shoot Out ALS Houston Clay Shoot.

Diane smiled as she remembered the day she saw Jim for the first time. It was around 1968 and they were both juniors at the University of Houston. Diane noticed him playing cards in the student union. “He was really cute…and I remember sitting down at the table around where some of these tournaments were, hoping he would notice me.” After several weeks, Jim finally noticed Diane and asked her on a date, and the rest is history.

The two lovebirds were married for 47 great years, raising a beautiful daughter together and later adoring their grandson. Jim and Diane found much joy spending time in their Houston community. They held season football tickets for the University of Houston for nearly 30 years. The two were very active, playing tennis, going white water rafting, and even running half marathons together. In January 2016, their lives changed forever when Jim was unexpectedly diagnosed with ALS.

Cherished Memories

After the diagnosis, their ALS Clinic team encouraged the Tobins to travel and take advantage of the time left to make memories. “I didn’t really understand how fast things could change,” Diane Shared. They truly took that advice to heart starting with a dream vacation.

That summer Jim and Diane took a European cruise to Paris. “We went through Paris, all these beautiful little towns. And it was just a wonderful memory, just a beautiful memory that I really do cherish because it was a lifelong dream and we did it.”

By the time they left for the trip, Jim’s ALS progressed so that he couldn’t walk very far. Diane took pride in pushing Jim around in his wheelchair, embracing every moment together in the City of Love. “Something I would tell a caregiver is not to be so afraid to do things…You’d be surprised you can do a lot more than you think you can,” she shared.

Just a few months after their trip, Diane planned a massive 70th birthday party for Jim. Nearly 100 friends and family showed up to celebrate him and the impact he had on their lives. And of course, the couple continued to show their devotion to the University of Houston, remaining ticket holders and frequently attending games with their alumni friends. When Jim moved to different stadium sections to accommodate his wheelchair, his fraternity brothers followed. “They were always just fantastic people in our lives and maintained that friendship,” Diane shared.

Finding the ALS Community

Initially, after Jim’s diagnosis, Diane shared they were scared to attend support groups for fear of what they would see. “We did not for like the first nine months go to any support meetings and this is the truth,” Diane shared.

When the two finally decided to go, Diane described the experience as amazing. Jim was eager to attend every meeting after, hurrying Diane to eat so they wouldn’t miss a single minute. And for as long as they could, the Tobins attended every connection group and Diane every caregiver support group.

Another way the two found hope was through the Texas Walk to Defeat ALS. Their team, Tobin’s Seals [Seeking to End ALS] became heavily involved as the years went on. Jim was even honored as the ALS Hero for The Woodlands Walk to Defeat ALS in 2019. In a touching speech, Diane shared:

Don’t stop living and challenging yourself. While many people let their illness define them and drop anchor, all of you and my husband Jim is evidenced by your being here at this ALS walk that you have chosen to redefine your life. You are living a life that has purpose and meaning.

Diane meant that with every fiber of her being, for Jim, for herself, for other Texans with ALS and their caregivers.

Evolving as a Caregiver

When a loved one is diagnosed with ALS, your life is turned upside down. For Diane, it threw her into a new world of being both a wife and caregiver to her husband. Though the journey was tough, Diane took every challenge in stride.

She once shared that during their trip to Paris, the front wheels of Jim’s wheelchair caught on the cobblestones. This caused him to fall onto the street, luckily with no injuries. Diane reflected on the incident, “We were just getting started…a bump in the road would not stop us.” She carried this spirit with her throughout their entire ALS experience.

As Jim’s ALS progressed, so did her caregiving experience evolve. As he would lose function of muscle groups like his hands, Diane added more duties that she didn’t have before. She spent several years thinking she had to do everything alone, but soon she realized it wasn’t possible. Diane noted how difficult it can be for caregivers to step back from their loved ones with ALS. Many think nobody does it as well as I do or nobody can take care of him as well as I do. But it’s a slippery slope to isolation and feeling trapped as a caregiver.

“At some point, you have to get help, and I did,” Diane shared. She was amazed to find the outside caregivers brought new things into Jim’s life that she couldn’t. They brought more laughter and adventure. And most importantly, they gave Diane the chance to invest time in herself so she could spend more cherished moments with Jim as his disease progressed.

Holding on to Love

Throughout Jim’s battle with ALS, Diane held on to love. Though her life was now filled with caregiver responsibilities, she never lost sight of their true relationship—husband and wife. “You have to be careful that you don’t lose your identity of being their wife or mother or whatever it is and start to become only a caretaker. They’re that same person. He was the same person I fell in love with,” Diane tearfully shared.

Remembering those things, Diane always strived to make sure Jim felt empowered to make his own decisions, even if she wasn’t ready for them. Diane described this time as the hardest thing she’s ever had to experience. As it became more difficult for Jim to breathe on his own, he was admitted into the hospital for seven weeks. The last three of those weeks, Jim was placed on a trach.

She noted that Jim never wanted to live with a trach and made the decision to forgo that treatment. Though Diane wished to hold on as long as she could, loving Jim also mean learning to let go.

I had to respect his decision because it was his life. When I would try to say, ‘Oh no we can work this out. We can do it.’ He would always say to me my decision…he would mouth it to me once he couldn’t talk. That’s what I’m talking about—empowering the person with the disease. – Diane Tobin

Jim passed from ALS in fall 2021. He lived a wonderful life surrounded by Diane, his daughter, and his siblings by his side. Though Diane cherished all 47 years together with Jim, she only wished she had more time.

The Next Chapter

Losing a loved one to ALS is devastating, yet it’s especially difficult for family caregivers. Diane describes the emptiness she felt after Jim’s passing. “After being a caregiver for so long, it’s like all-consuming to lose that job and lose that person.”

Today, Diane still holds on to those precious memories she and Jim made together—from their wedding day to raising their daughter, to football games at their alma mater, to Paris, and even in finding community through ALS.

That community has helped Diane as she walks into this new chapter. She’s connected with a group of five other ALS widows who frequently spend time with one another. “The ALS Support group gave me support after I lost my husband from a group of women that could totally understand…what I’m going through, the sadness because they’ve been there,” she shared.

She encourages other caregivers to lean into the ALS Texas community and find that support because it’s impossible to do it on your own.

This is a great organization because it helps people in the worst places…you helped alleviate that [fear] in our hearts and made the journey one we could make. – Diane Tobin

You can support ALS Caregivers like Diane Tobin by joining us for the 2022 Shoot Out ALS Houston Sporting Clay Shoot on March 24, 2022. Your support allows ALS Texas to continue investing in the selfless ALS caregivers in our community through mental health workshops, niche support groups, educational presentations, and more!

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Learn more about the caregiver program at ALS Texas

A Note from Tonya: What’s Your Story?

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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

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ALS’s Youngest Caregivers: Caring with Love

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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!