ALS Texas

Virtual Groups Are Connecting the ALS Community Like Never Before

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

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

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

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

Virtual Platforms Extend Our Community

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

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

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

A Group for EVERYONE on the ALS Journey

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

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

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

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

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

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

The Future of Virtual Groups

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

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

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

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

Messy Motherhood: Jennifer Mercz’s Story

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I felt I was falling short in a lot of places. You can’t have it all together.

In January 2019, after a year of doctor’s appointments, increased symptoms, referrals and second opinions, Jack Mercz was diagnosed with ALS at the age of 53.  In a recent ALS Texas interview with his widow Jennifer Mercz, Jennifer shared “our whole relationship pretty much changed in a day.”  Jennifer and Jack had a then two-year old son, and Jennifer added, “I had been with my husband for 10 years and suddenly found myself not only caring for my husband but also my young child.” She recalled moments that included putting her son in the bath and helping her husband in the shower at the same time, and at the end of the day being too tired to even take a shower herself.

Jack and his family battled ALS for more than a year- and amid the COVID pandemic as well, until Jack passed away in September 2020. “Walking on this journey was one of the most challenging things my family has ever endured,” shared Jennifer. Yet, she is ready to share her experience with others. “This community and support are lifechanging; to have support and know that you are not completely alone.  Me sharing…if this helps one person that’s good enough for me.”

Jennifer shared that Jack was not very accepting of any kind of help; he wanted to be stronger in every way and help Jennifer at home when he was not traveling for work. Frustration over his declining physical abilities and strength led to anger and depression and Jennifer shared that she “became very standoffish emotionally-clinical with him.” While Jennifer did reach out to ALS Texas and the community as much as she could, she added that “things were moving so quickly that I didn’t seem to have time” to do more-such as accessing our ALS Texas equipment loan program sooner. “The ALS Association delivered a Hoyer lift to our home-it was great, and we needed it.  Jack was able to get up (after weeks of being in bed) and sit on the couch with our son.”  He told me that he wished we would have had that [Hoyer lift} earlier.  In retrospect, she added that she would do things differently in making some “executive decisions” about Jack’s needs; equipment and care that would have also benefitted her.  She urges all family caregivers to seek help with caregiving if at all possible-from anyone who is able to help, including friends and family members, and when someone says, “Hey, do you need help?” the answer is “YES! Here’s how you can help me.”

You put yourself on the back burner. Get help, even if just for an hour, so you can eat, shower, and take a deep breath. Support, from my husband’s perspective, was not a priority, but I needed it… 20-30 minutes for yourself is the most important.

ALS Texas offers programming and support for caregivers of all ages. You know when you receive safety instructions before traveling by air, and the flight attendant tells you that in the event of an emergency, you should put the oxygen mask on yourself before helping those around you? They say this because you will not be any good to those who depend on you if you cannot breathe yourself. This applies in caregiving too, and it is very important to remember.

Not only do we have Brewed Awakenings, our caregiver group just for women, or one of our many Connection (Support) Groups throughout the state for both those living with ALS and their caregivers, but we also host workshops such as Running on Empty: Burnout and Compassion Fatigue, The Cost of Caregiving.  Often, caregivers like Jennifer share that they just do not have time to attend any of these. In reality, you cannot afford NOT to.

Jennifer was dealing with so many different emotions, and candidly shares that she was “in such a dark place.  Added to all of this was an unneeded dose of Mom Guilt. Mom guilt is the feeling of guilt, doubt, anxiety, or uncertainty experienced by mothers when they worry that they are failing or falling short of expectations in some way.  Being a parent is one of the most difficult jobs in the world and does not come with a handbook, and surely not a handbook for when ALS enters your life. No book, pamphlet, workshop, or conversation can truly prepare you for what you are about to experience.  Jennifer recalled once giving her son a bag of chips and then going to care for Jack.  “When I returned the bag was laying there empty, and I thought to myself, I hope my son ate those and not the dog. At times that was all that I had time for.”

Pay more attention to what is real and less attention to what you feel. Feelings can trick you in to thinking you are the worst mom out there.  Being level- headed and rational with your thinking will help you to see what is really going on.

When asked how she and their now almost four-year old son are doing today, Jennifer replied, “Grief is a tricky thing. Overall, he is good, and I’m touch and go.  Today, I’m good.”  ALS Texas walks alongside our families throughout every phase of the disease and we also have many bereavement resources for adults, youth, and children, and hosts a quarterly Bereavement Group.

Learn More about our Caregiver Programs

View Upcoming Support Groups

Wife, Partner, and Caregiver – The Balancing Act

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The ALS Association of Texas is dedicated to recognizing, empowering, and supporting family caregivers throughout Texas. Our hope is to share the different perspectives of the ALS experience and walk alongside every family member throughout the journey—the journey that is a marathon and not a sprint.

Did you know that in the United States, about one in 10 caregivers are providing care for their spouse? Stamina and success as a spousal caregiver mean knowing when to ask for help, finding time for yourself, and making peace with your partner. Now you have all the answers. That’s the end of this story, right? Not. Even. Close. All of the things mentioned above are so much easier said than done.

“Many people will say that they will do as much as they can until they can’t anymore, and that’s not good for anyone,” says Dr. Jacobs, author of Meditations for Caregivers: Practical, Emotional, and Spiritual Support for You and Your Family. Friends and other family members are often more willing to help than you think, so don’t steal their chance to be a blessing! (Know when to ask for help)

In visiting with families throughout the state, I’ve asked many wives this question. “What do you need most that ALS Texas is not currently providing?” More times than I can count, the answer has been, “What I need, you can’t help with. I am no longer a wife; I’m a caregiver, and you can’t fix that.” While it’s true that ALS Texas can’t change that, we can help provide more education, programming and support on how to take control of that balancing act and not lose what you value most in your marriage.

That ultimately starts with MAKING time for self-care! Start with just five minutes a day and add a minute or two as you can; even if you have to go into a closet to breathe deeply, read, meditate, and have some alone time, those few minutes can make a huge difference. One of the best pieces of feedback I’ve heard from a wife/caregiver is, “He can be very dependent on me, but I tell him that I need some uninterrupted time for myself.” (Finding time for yourself)

The Gupta Family

In September, we were honored to join the Gupta family from Plano, TX as they invited our ALS Texas community to walk alongside them in their genuine and very poignant journey with ALS. During the Gupta’s Family Talks special event, we listened as Hema Gupta emotionally shared, “I went from being a wife…to a caretaker. I think I….I honestly don’t think about any of that stuff, because it’s too hard, and I refuse, I refuse to let to let this…ALS, be the defining of the family.”

In her recent column We Are Both Patients, Kristen Neva shared, “I never imagined I would be providing this type of care for my middle-aged husband.” She adds that caregiving for her husband who has ALS, is stressful for them both, but their strong relationship helps them through the tough times.

“Spouses need to pause and recognize that their marriage has changed completely and may never return to the way it was,” says Dr. Denholm, PhD, a psychologist in West Palm Beach, FL, and author of The Caregiving Wife’s Handbook. “If the sick spouse is still able to communicate, I always recommend that couples talk about the changing relationship openly and honestly, and as soon after it starts changing as possible.” (Making peace with your partner)

As a caregiver, do you and your loved one living with ALS have an agreed-upon signal to let each other know it’s time for you to take a break? Many spouse caregivers struggle with the “G” word – guilt – and on a daily basis; they feel guilty for doing too little or too much. It shouldn’t be wrong to say, “I am your wife, above all, and not only a caregiver now.” Many spouse caregivers throw themselves into their new role so wholeheartedly that they neglect their own care or forget to consider how their spouse might be able to contribute.

Cultivate healthy communication as a practice. Being able to talk to your spouse candidly is important for every marriage, but it’s especially crucial for couples in which one person is taking care of the other. You may need to have delicate or difficult conversations about everything from toileting to the changing nature of your intimacy; the key is to not avoid those conversations. After all, caregiving is a partnership between the giver of care and the receiver of care. In practicing good communication as a husband and wife, you continue to focus on the art of adaptability. Experiment, think outside the box, and be creative in adapting to new normals – bring sexy back!

Knowing when to ask for help, finding time for yourself, and making peace with your partner are some of the biggest secrets to success in the balancing act of the wife, partner, and caregiver marathon. If you’re looking for ways to build these practices into your family’s ALS journey, our ALS Texas Caregiver Groups are a tremendous resource for spousal caregivers. We even offer a dedicated group for women, Brewed Awakenings.

Join a Virtual Support Group

Trimming the Fat: A Husband’s Perspective on Caregiving

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While Tyler Wood may not like being in the spotlight and does not consider himself a leader, the way that he cares for his family and for others (and even for himself), shines a much different light.  Leaders are oftentimes not specifically chosen for the role, rather it finds them, and they either sink or swim.  Family Caregiver Tyler Wood has chosen to swim in all of the uncharted waters and realizes that not only is life (especially life as a caregiver), a triathlon, but it is also a team sport. In sharing his journey, he hopes to “lift others up and support, and hopefully help them out by sharing my story; giving them tips and tricks that I use” as a caregiver.

Tyler is husband to his beautiful wife, Mylinda, and they recently celebrated their 23rd anniversary. He is also father to three boys; ages 17, 13, and 10. Their 10 year-old son has special needs and is living with Down Syndrome. Tyler also works full-time at a wonderfully supportive architectural firm, and enjoys smoking and curing meats, and making knives – both as hobbies and side businesses.  Tyler is also the family caregiver to Mylinda who was diagnosed with ALS in 2018.

November 2020 is National Family Caregiver Month, and the theme for this year’s focused and intentional appreciation and dedication to family caregivers around the nation is Caregiving Around the Clock.  If you ask Tyler about the 24/7, 365 days a year commitment of a family caregiver, he sums it up perfectly:

“It’s about trimming the fat, really, and figuring out what’s important stuff…but with self-care, you have to make sure that you’re not trimming all of your stuff out. You have to give yourself time, and that’s part of the care of your spouse – is caring for yourself. Because when you take care of them, you give out of yourself, and it’s a bucket of water.  Every time you pour out of yourself a little bit, there’s less in that bucket. When that bucket is dry, you’re not going to be of use to yourself or your spouse. It’s every minute of every day, because you’re not just caring for your spouse in that daily care, you’re caring for yourself so you can continue to care for your spouse.”

You can’t punch a clock to the end the day when you are a family caregiver, and it can be hard on the caregiver physically.  However, Tyler would challenge that the “mental is the most strenuous, tiring aspect of the entire thing. If you’re not taking the time to rest your emotions and your mind, you’re not gonna make it. You’re just simply not.”

Tyler readily shares that the ALS Association of Texas has been helpful in providing equipment as needs arise. He adds that he is thankful that in two years, Mylinda has progressed slowly, and they have not needed much of that just yet.  However, what has been most helpful to Tyler and Mylinda are the information and contacts, especially in the Lubbock and West Texas area where resources are more limited.

“Through ALS Texas, we were also able to receive information about clinics throughout the state, and get tied into those, as well as connect with other people in the area who are struggling with ALS.”

Information is especially critical in navigating the day to day challenges and often-times new normals that are part of the overall ALS experience. Tyler’s biggest struggle as a male caregiver? “Thinking like a woman. You have to somewhat get in a woman’s head as a male caregiver and that’s dang near impossible for us guys! It’s the mental game that you have to play with yourself. As men, we don’t think about that stuff, but the ladies, they still want to look pretty; they still want to feel pretty.  Feeling pretty for a woman is huge.”  And the biggest challenge within this? Sharing in his genuine approach that always contains some humor and laughter, Tyler quickly offers, “I do not like touching feet.”

He adds with a more serious tone, “clipping her toenails, painting her toes…you know doing all that stuff.  You really start to think about what attracted you to your spouse. It’s almost like you gotta think about being the opposite sex, and what they think is important and make that important to yourself as well. When you take the time and make her feel pretty, it’s amazing the glow that comes out of her, and the more zeal for life she has, despite the situation she’s in.”

In his last words of encouragement and support for all family caregivers, Tyler adds, “Hug your spouse. No matter what you’re going through, they’re going through it worse. Hug them, love them, show them compassion.”

Watch Tyler’s full interview below.

ALS Caregiver Recognized for Excellence in Caregiving

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Caregivers of people with ALS are crucial in the care of their loved ones battling this disease. Being the primary caregiver for a loved one with ALS can be stressful – not only are you on call 24/7, but you may have additional outside responsibilities, like working a full- or part-time job or caring for additional family.

ALS caregiver Trixie Stanford was honored at the Gordon Hartman Family Foundation‘s 2nd Annual Excellence in Caregiving Awards in April. A Belton resident, Trixie serves as the primary caregiver for her son Charlie.

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