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  • Understanding ALS
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      • How to Share Your Diagnosis
      • Second Opinions
      • Resources
      • Clinics and Centers
    • Living with ALS
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        • How to Improve Mobility
        • Dealing with Breathing Issues
        • Dealing with Speech & Swallowing Issues
        • Types of Assistive Equipment & Technology
        • Clinics and Centers
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      • Daily Living Activities
      • Leisure Activities
      • Accessible Vehicles
      • More in Depth Resources/Manuals
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Walk to Defeat ALS: Team Queen Bee

June 7, 2022 by Katie Gilroy 3 Comments

Monica McHam was diagnosed with ALS in 2021. She must now use a wheelchair and has lost the use of her voice, but Monica’s mind remains as sharp as ever. She is completely paralyzed on the right side but was able to type her story using two fingers on her left hand.

These are her words, and this is her story.

I am 66 years old.  I was born into a large family in Cincinnati, Ohio.  I am married to my heaven-sent husband, Mick McHam; we are celebrating our 27th wedding anniversary. We have no children, but between us we have 18 nieces and nephews, and they are all busy populating the next generation.

For as long as I remember, I knew I would see the world.  After one year of college, I enlisted in the US Army (to begin seeing the world).  I had my 19th birthday in basic training.  I was in the army for not quite eight years, and I was stationed at three different bases in Germany.  Because of Germany’s central location and with 30 days paid leave per year, I got a great start on seeing the world. I travelled throughout Europe, Iberia, Scandinavia, Greece, Turkey, and parts of Africa.

In the years Mick and I have been together, we have travelled thousands of miles here in America.  It is a country filled with history, natural beauty, and wonderful people.

I finished college when I got out and later went to law school, both at the University of Houston. I lived in Houston for about 35 years and moved to Weatherford in 2018.

I was diagnosed with bulbar onset ALS, voice affected first, on April 6th, 2021.  I began seeking medical help in October 2020.  I had begun to slur my speech occasionally.  I sought help from a local ENT, who insisted my problem was acid reflux.  I could/did not believe him.  To humor me, he sent me for speech therapy, and many tests.  None of which confirmed or countered his diagnosis.   As a last resort, he sent me to a local neurologist. By now it was March 2021.

The neurologist recognized the problem immediately; he talked briefly about ALS and referred me to the neurology specialist at UT Southwestern.  I had multiple tests there to eliminate other diseases.  There was no other possibility, I had ALS.   During our initial discussion with the doctor at UTSW, she noted that in women over 65 with bulbar onset, ALS progresses rapidly.  I thought ‘not me.  I’m special.’

In a year and a few weeks, I have gone from fully functional to wheelchair bound.  I cannot walk, talk, hold a book, brush my teeth, bathe myself, dress myself, or leave the house for more than a few hours. My pulmonary function is down to 43 percent. All my water, nutrition, and medication are injected through a feeding tube. My right side is totally paralyzed, my left leg is weakening, and I have two functional fingers on my left hand.

Although we have a part-time home health aide, Mick is my primary caregiver.  He is a geologist, and like any good scientist, he immediately dove in getting the facts and learning   about this wicked disease. He found the ALS Association of Texas, multiple ALS forums, identified the equipment we would need, and got lots of help from them all.  He still goes back for help as my disease progresses.

When I told my siblings about my ALS diagnosis, they were appropriately horrified.  My younger sister, Patti Hill, is amazingly proactive.  The day after I told her about my diagnosis, she had gone online and learned a ton of good information about ALS.  She had found the ALS Association of Texas, signed up a team, put the walk and request for donations on FB.  She is our team leader…an obvious choice.

My parents and one brother have passed away. So now I have two sisters and three brothers, we are scattered across four states. Even at a distance my siblings shower me with love, cards, and visits. Several of them came to Dallas last year to walk with us.  The rest walked in their hometown.

The team name, Queen Bee, is a nod to my eye-smacking yellow wheelchair.  When I was being fitted for it, they asked me what color I wanted, noting the reds were quite popular.  I still thought I was ‘special’ so red wasn’t going to cut it.  The yellow popped out.  Mick said, ‘yellow and black, she’ll be the queen bee.’  Shortly afterwards he got bee stickers and plastered them strategically on my chair.

Patti, being the great team leader, got me a QUEEN BEE t-shirt, Mick a HUBBEE t-shirt, and the rest of the team members WORKER BEE T-shirts.

I walk because:  I want the world to know what ALS is.  Like me before diagnosis, the average person may have heard of Lou Gehrig or Steven Hawking, but that’s it.  I want the world to know and understand what ALS means.  Anyone can get it, it is evil and progressive, and there is no cure.

This brings me to my second reason for walking:  I walk to raise money.  I believe that science will find a cure or realistic treatment for ALS.  Not in my lifetime, but it will be found.  In the real-world research takes money.

At an individual level ALS Texas educates people about the disease, hosts support groups, and works year-round as an advocate for people with ALS. My hope is that every person diagnosed with ALS gets the love and support I have received.

My final hope (but not really an expectation) is that the next POWERBALL winner will donate millions to defeat ALS.

The rate of ALS in veterans is twice that of the public.  All military veterans with ALS will be classified as 100 percent disabled by the VA.

If you are diagnosed with ALS or possibly diagnosed, contact the VA center near you.   It doesn’t matter when you served, how long you were in, what you did, where you were stationed, or how long you have been out.

The ALS advocacy organization that works with the VA is Paralyzed Veterans of America (PVA).  When you contact PVA, they will walk you through the process and hand carry your paperwork up the line.

You will receive amazing benefits in addition to all medical care.  ALS is an obscenely costly disease, and the VA goes out of its way to eliminate that source of stress.

ALS is also hard because once someone sees me in a wheelchair and learns I cannot talk, they act like I am not there. They ignore me or talk to me in a childish voice. It drives me crazy that my mind is fully intact, but I cannot communicate the fact. That a fully functioning brain is in this damaged body, apparently never occurs to them.

So, with rapidly progressing ALS, it seems I am not as special as I thought, at least not in the way I thought.  I am special because I realize my life has been an amazing journey. I am grateful to have found ALS Texas and to have the opportunity to contribute to its mission.  This is just one of the special gifts I have received.   I realize that in these ways, I am special…

If ALS were more widely understood people might understand that it leaves the mind intact. That is the greatest things that ALS Texas does…educate the public.

Join the Walk to Defeat ALS

Filed Under: ALS Hero, Walk to Defeat ALS Tagged With: ALS Hero, ALS Texas, walk to defeat als, why we walk

Guns Up for ALS Leads the Charge for ALS Awareness in Lubbock, Texas and Beyond

October 26, 2021 by Rhema Jones Leave a Comment

Lubbock, Texas is home to people from all walks of life, but for one small group, one thing connects them all. They have ALS. Now, brought together by this devastating disease, this group is on a mission to raise ALS awareness in their community.

The story of the Lubbock support group starts with one family and their unexpected experience with ALS. Patricia England and her family love the community of Lubbock, Texas. She explained that even though she’s moved from the town to be with her husband in Oklahoma, “Lubbock is my home very much so.”

She recalls the difficult ALS journey her mother Jackie faced. Several years ago, Jackie started having trouble with her balance. Patricia laughed as she shared her mother was always a clumsy woman, so they didn’t think much of the symptoms. But after she also started having issues swallowing, the family searched for answers

“My mother was diagnosed in September 2018 at Texas Neurology with Dr. Heitzman,” Patricia shared. At the time, Patricia had moved to Oklahoma with her husband. But when Patricia’s sister broke both of her feet, she travelled down there to take care of her. Unfortunately, her sister passed in August 2019, and Patricia temporarily moved back to Lubbock to stay with her mom. “I felt like someone needed to be with her.”

Inspiration to Find Community

Jackie felt alone in her ALS experience and desperately wanted to find community. “I just want to meet other people that are dealing with this so I know I can live with it.” Patricia recalled her mom sharing one day.

Ok so what do we do? Patricia thought to herself. She was aware that there was a population of Texans with ALS in the area. Her mother had encountered several at her job as a nail tech, and they’d heard of more from a gentleman who attended her sister’s funeral.

“What if we do a support group? Let’s all get together and walk each other through this.” Patricia planned a first meeting for the new support group, but she needed a way to spread the word. She contacted a news reporter who conveniently was already preparing a story about a woman living with ALS in Lubbock. The reporter agreed to add an announcement regarding the new support group to the segment.

The day came and on November 12, 2019, the group met for the first time. Patricia was amazed at the turnout. “The first meeting blew my mind. People kept showing up and kept showing up.” Though they were aware of others in Lubbock with ALS, they had no clue just how many there were. And just like that, a medley of people with different ALS experiences came together to share with one another.

For the longest time, Jackie insisted she would never get a trach placed. A gentleman with ALS who also had a trach visited the meeting and conversed with her. Following that encounter, Jackie felt she could do it too. “Just seeing that hope, it was priceless,” Patricia shared. Among those in attendance was Amanda Stephens, a local speech language pathologist.

Providing Educational and Emotional Support

Amanda Stephens treated Jackie during her battle with ALS. Through that encounter, Amanda grew to find a passion for caring for those living with ALS in the area.  “We really don’t have a lot of support here in Lubbock when it comes to professionals who are really experienced with ALS and who can provide comprehensive care,” she shared. She accompanied Jackie and Patricia to an ALS clinic in Dallas. There, she met Dr. Heitzman and his team.

Seeing all the things that were available there that we don’t have here has inspired me to try to bring things here and develop a team in Lubbock, Amanda shared.

Unfortunately, Jackie’s ALS symptoms progressed quickly, causing her condition to decline. She lost her battle with ALS in March 2020. Patricia stayed in Lubbock for another year to handle her mother’s affairs before moving back to Oklahoma. “I will stay involved and do everything I can for this group and ALS in general because it is so near and dear to my heart. These people really are my family now,” Patricia shared.

Since Patricia’s departure from Lubbock, Amanda has stepped up to lead the group as it continued to grow. It started not only as a place for emotional support, but also a place for educational support. “I would bring in different professionals to talk about different aspects of ALS.” Amanda shared that she also does many of the communication device evaluations and encourages the participants to bank their voice.

A Growing ALS Community

People with ALS from all different backgrounds come together for this group in Lubbock. They all have one thing in common—they have ALS or love someone with ALS. Under this common experience, they’ve created unbreakable bonds. Some of those group members graciously shared their ALS experience with us and why this community is so important.

Ken Olson has lived in Texas since 1967. He and his wife Charlene have a background in law enforcement and emergency management. Ken was diagnosed with ALS in 2015 after experiencing drop foot and a complicated recovery from a bilateral knee replacement. “I’m the older dude with ALS in our group,” Ken shared with a chuckle.

Rebecca Talley was a runner who was very active in sports. She and her husband Tim met in university and were full-time missionaries in Kenya and Tanzania for 27 years. Rebecca also worked as an adjunct professor at Lubbock Christian University. She retired in 2019 after being diagnosed with ALS in March of that year.

Bruce Gilliam played softball for many years before being diagnosed with ALS in 2019. Today, the disease has progressed to his foot, legs, and it’s now affecting his right hand. That doesn’t stop him from coaching a senior softball team in Lubbock or spending time with his wife, Raquel, and rescue pup, Mia.

These are just a small handful of the many lives touched by this growing community in Lubbock. “By being in this support group, we are able to encourage each other. Because we may have been through it. We may not have been through that particular issue. But the greatest thing is that we all have one thing in common, and that is ALS,” Ken Olson shared. As the group continued to grow, they realized they could lead the fight against ALS in their community.

Leading the Charge for ALS Awareness

For many in the group, their first encounter with ALS was when they or a family member was diagnosed. They want that to change. The group discovered the Walk to Defeat ALS and decided that’s where they would get started.

There is a need to make awareness to the people of Lubbock and the south plains all around us…the only way we can get people aware is getting the word out there, and the Walk will help with that, Charlie Olson.

The Lubbock group joined the Walk in 2020 under the name Team Guns Up for ALS. They chose the name for ‘Guns Up,’ the slogan of Texas Tech. Many of the members have some affiliation with the university.

Last year, the group had plans to do a big BBQ cookoff to raise funds for the Walk. However, due to the unexpected circumstances of the pandemic, the team participated virtually. This year, they’re back bigger and better than ever.

The team hosted a BBQ cookoff in July to kick off their fundraising, raising $1,700 for their team. In October, the team has already passed their fundraising goal and is the top fundraising team for their local walk! They hope the funds they raise can aid in bringing awareness to the disease in Lubbock and beyond. “The more that we can bring awareness to ALS and everything involved in this is a good thing,” Amanda shared.

A Hope for Better Resources in Lubbock

Not only does the team hope to raise awareness, but they also hope to attract better resources in Lubbock. Amanda noted that while there’s a population of ALS patients in Lubbock, there aren’t many doctors equipped to treat ALS nearby. “I’d love to see more of our medical community involved in ALS.”

Many of the Lubbock group members travel far and wide for multidisciplinary care. Some travel to Dallas, Houston, or San Antonio. Others travel as far as the Mayo Clinic in Scottsdale, Arizona—all wanting to see doctors equipped to handle their disease.

Those that travel to clinics in other cities find better support. However, “travel is not always an option for people,” Patricia noted. Many factors affect this like financial reasons or because of disease progression. “There’s not a neurologist equipped to handle ALS in Lubbock, Texas. And my hope is we can get somebody there that can understand and can help.”

The group hopes that the efforts of the Walk will help encourage other medical professionals in Lubbock to join the cause.  It’s important to have knowledgeable professionals who can guide those experiencing ALS as they navigate treatments and those who claim they have solutions.

“There’s a temptation to look for cures on the internet. Having a doctor who is aware and can explain why these cures don’t work or not help can keep false hope from absorbing emotions and money,” Rebecca Talley shared.

The Importance of the ALS Community

The group also relies on each other to share wisdom and tips for their ALS experience. “It’s been so important for us,” Tim Talley shared. “There’s something deeply spiritual that happens in our group. We all remember those times that have been very raw. We’ve laughed, but we’ve also cried…It’s very real.”

Ken agreed as he encouraged others with ALS to get connected with a support group. These people can understand where you are and where your disease will progress. “It’s that kind of comradery that I think the value of the group is to each of us as individuals.”

Guns Up for ALS Puts a Face to the Disease

Team Guns Up for ALS hopes to put a face to the disease in Lubbock, Texas and beyond. “Living in the moment of this is what we can do right now—share our stories…raise the awareness. The little we can do in the moment,” Tim shared.

While the efforts of the team may not bring a cure in their lifetimes, they are thinking ahead to those who will follow them. “Unfortunately, we are losing people to this horrendous disease, but we are also gaining new people every meeting,” Charlie noted. All the members of the Lubbock support group know that the moments they spend fighting this disease bring us one step closer to a world without ALS.

Join us and Team Guns Up for ALS on Saturday, October 30 for the Walk to Defeat ALS! You can register in your city, then walk wherever you want. When you support the Texas Walk, you support the fight to end this disease and bring better resources to Texans with ALS.

Start Your Walk to Defeat ALS Team

Donate to Support the ALS Texas Mission

Filed Under: Stories, Walk to Defeat ALS Tagged With: als community, walk to defeat als, why we walk

Cool Cats for a Cure Walk for a Brighter Future without ALS

October 21, 2021 by Rhema Jones Leave a Comment

The close-knit Martinez family calls the Rio Grande Valley home. Even after Rodolfo Martinez’s shocking ALS diagnosis in 2016, the family remains as close as ever. For the past five years they’ve found community and hope through ALS Texas and the Walk to Defeat ALS.

A Close-Knit Family Discovers a Shocking Diagnosis

Rodolfo grew up in the Rio Grande Valley, but later in life, he moved to Dallas, Texas. He worked a career as a construction inspector for the city of Dallas for 25 years. After he retired, he moved back to the Rio Grande Valley to enjoy his golden years with his family.

Today, Rodolfo, his daughter, Rosie, her husband, and her brother all live together in a quiet home in the Rio Grande Valley. “It’s pretty different from the rest of Texas. It’s another world down here,” she described the region, just seven miles from the Mexico border.

He first started noticing symptoms in early 2016. Rodolfo was experiencing issues with his wrist. His doctor sent him to a physical therapist for treatment. While the physical therapist found nothing physically wrong with his wrist, they did find atrophy of the hand muscles.

Rodolfo next visited a neurologist in the Rio Grande Valley who would eventually send him to Houston for confirmative testing. There he was officially diagnosed in April of 2016. “It was a big shock for the family,” Rosie shared.

Finding Help Along the Way

Rodolfo’s neurologist directed him to the clinic at UT Health San Antonio for further ALS care. At this clinic, Rosie discovered the local support groups hosted by ALS Texas. Rosie’s interest peaked for the group, but Rodolfo still faced denial regarding his diagnosis. “My father sat for a few months, about six months with this fear kind of looming over him,” Rosie shared. A nurse connected the Martinez family to Linda Quiroz from the ALS Texas.

Once we made the connection with the ALS Association, we knew we weren’t alone.

Eventually, Rodolfo, his son Rudy, Rosie and her husband Danny all ventured to an ALS support group. Rosie described their first experience as ‘completely overwhelming.’ “We didn’t participate much, but we just listened and heard the stories. It felt good to know there were other people that were dealing with the same issues, that we weren’t alone.”

Linda Quiroz from ALS Texas prepared them for their first trip to the  ALS clinic in San Antonio, explaining what they could expect from the visit. Since that first trip, Rodolfo has strengthened his relationship with the San Antonio clinic. “He’s since been working with Dr. Jackson and her team,” Rosie shared.

Cool Cats for a Cure

During those initial meetings, Linda also invited the Martinez family to join the Texas Walk to Defeat ALS in 2016. “We decided to check it out. Let’s go anyway and see what it’s about,” Rosie said.

The family had quick shirts made and a small team of family members and friends. Cool Cats for a Cure was born. “My dad and I love cats. We’ve had cats my whole life. Every year my husband designs a new shirt with a cat on it.” Rodolfo feels like a true cool cat at the Walk to Defeat ALS and is completely behind it.

The Benefits of Local Care Programs

“Previous to my dad’s diagnosis, I heard about ALS through the Ice Bucket Challenge,” Rosie shared. “But I had no idea what ALS was.” You never know who will be affected by the disease, it affects people both young and old, from all walks of life, races, and genders. “In my dad’s case, it was spontaneous, it wasn’t hereditary. We really need to find a cure for this horrible disease.”

Rosie expressed gratitude to Dr. Jackson and her team in San Antonio for supporting her father. She helped him get approval for Radicava which has been extremely helpful in slowing his progression.

They [ALS Texas] provide lots of guidance and support. They help us find equipment when we need it. They’ve really helped us navigate this journey… He loves Linda. He loves the [clinic] team, the doctors and nurses, especially in San Antonio, Texas, they’ve made a great connection.

Rosie recalls how in 2017, ALS Texas also helped establish a multidisciplinary clinic in the Rio Grande Valley. For those with ALS in the area who couldn’t travel to distant cities for clinic, this resource is life-saving. Until this year, Rodolfo had received  primary care at the San Antonio clinic. Now he’s transitioning his care to the Rio Grande Valley clinic. His family knows that now there are equipped doctors locally to help in case of an emergency.

Support a Brighter Future without ALS

The Walk is important not only because of the awareness piece, but also because it supports local programs for Texans living with ALS. The Martinez family and so many others benefit from no-cost equipment loans, support groups, ALS clinics, and the critical research for a cure. Your support of the Walk funds these crucial programs. Will you join the fight?

It’s very important for others to participate in the Walk so we can spread awareness and also raise funds to get us closer to a cure…I see a brighter future ahead for when we can end the disease.
– Rosie Martinez

Start Your Walk to Defeat ALS Team

Donate to Support the ALS Texas Mission

Filed Under: Walk to Defeat ALS Tagged With: als stories, walk to defeat als, why we walk

Caballero Family Finds Wind to Raise Awareness to ALS

October 5, 2021 by Katie Gilroy 1 Comment


For Priscilla Caballero, her mother, Maggie, had always been a source of strength. Maggie was a single mother and raised her 4 children along with the help of their grandmother. Now grown up, Priscilla is a third-generation restaurant owner, and she uses the restaurants as platforms to help raise awareness and bring people together in the fight against ALS.

The Long Road to Diagnosis

Maggie and her family first started noticing signs of ALS in the summer of 2018 when Maggie was frequently tripping. The family visited a podiatrist who told them that Maggie had a sprained ankle, but when months passed, and Maggie’s mobility got worse, they realized they needed to see a neurosurgeon.

“That appointment was eye opening and concerning because he sat there and told us he had never seen anything like that. He couldn’t explain what was causing that lack of mobility in her foot,” Priscilla said about the visit to the doctor.

Maggie was told to see a neurologist, but with the holidays, they were not able to get an appointment until the end of December. By Halloween, Maggie was unable to move her leg all the way up to her hip, and shortly before Thanksgiving, the family became so concerned about her condition that they took Maggie to North Methodist hospital where she stayed for three days. A nurse there told Priscilla “if it was my mom, I would take her straight to University Hospital,” stating that they have more equipment there to help get answers.

Priscilla and her family did just that and took her mother straight from one hospital to the next. After a long 48-hour wait, the family was finally able to get a room on the neurology floor. As the tests and treatments continued, it became more and more clear that Maggie most likely had ALS.

“It was shocking because the first thing they do is hand you a paper that says terminal. The more you researched it, the more devastating it was.” Priscilla said, “Our only hope was maybe they’re wrong. Maybe it’s something else. But when we went to that first appointment, and the doctor told us it was ALS, and that there was no doubt, it was really hard to accept.”

A Whole New World

After the diagnosis was confirmed, Priscilla and her family got in contact with the ALS Association of Texas.

“Even in that short journey, we went to the ALS Association of Texas meetings which were so life-changing, because from the first time we went, she got to see that she wasn’t alone. We got to meet some incredible people that not only helped her as the patient, but also helped us as the caregivers because we were in a whole new world. We had to learn how to clean feeding tubes, how to rotate in bed.”

Priscilla and her family were able to keep her mother at home, and even though it was hard to see her decline, Priscilla says it was a good opportunity for the family to get every moment they could with Maggie.

ALS Texas continued to help Priscilla, Maggie, and their family throughout the journey by providing equipment, information, and support.

“The ALS Association of Texas lent us the eye gaze technology. And I’m so grateful for that because in her last weeks, those were the only way we communicated with her. Her last words were the words that computer read off to us, and that’s incredible”

Wind Warriors

The 2019 Walk to Defeat ALS was the family’s first walk. Maggie chose the name “Wind Warriors” for their team because “she always liked angels, wings, and things like that, so we thought it’d be great.” The team wore wings to the walk and even put wings on the back of Maggie’s wheelchair for the event.

“We put wings on the back of her wheelchair; for us it reminds us that she flies because when she was in that chair, she got mobility. She got wind.”

Priscilla’s Family used their restaurants as a platform to kick-start their fundraising. They sold t-shirts, held their own ice bucket challenges, and even held a special fundraising dinner. Together, they raised thousands of dollars to support Maggie and other Texans with ALS.

“It was nice to see so many people come together for that cause,” Priscilla said.

Maggie passed away in March of 2020, but her family continues to walk so they can support other families affected by ALS.

“It’s important to us because we know so little about this diagnosis and because no other family should have to suffer this way. I feel that awareness and knowledge need to be brought out in the medical industry. There were times that we got hospitalized and there were nurses and doctors who had no idea what ALS was.

Maggie’s influence continues to live on with her family; she had wanted nothing more than to have a granddaughter, and Priscilla found out that her new baby was a girl on the one-year anniversary of Maggie’s passing. She considers this a blessing and has named her daughter Maggie after her mother. She is glad that she was able to enjoy her mother’s final moments with her and encourages others to enjoy the time they have to spend with their loved ones with ALS.

“Although it’s an incredibly devastating diagnosis, try to look at it in some positive way and cherish every moment. I think the only good things I can say about the diagnosis was I could’ve lost my mom to a heart attack or an aneurysm – something where I never would’ve had time to say my goodbyes. We got 14 months to cherish every moment with her.”

 

 

Start Your Walk to Defeat ALS Team

Donate to Support the ALS Texas Mission

Maggie Shares Her Story  in 2019

Filed Under: ALS Hero, Walk to Defeat ALS Tagged With: als stories, walk to defeat als, why we walk

Family Bonds: How team BobKat Came Together

October 1, 2021 by Katie Gilroy 1 Comment

For Libby Castillo, her older sister, Kathy – or Kat, was always the one taking charge. Even though Kat was 11 years older, she and Libby were close throughout their lives. Kat had four children, one girl and three boys, who are all adults now. Even though Kat passed in April of 2021, her family continues to Walk to Defeat ALS in her memory.

The Diagnosis Process

The first sign of ALS that Kat experienced was numbness in her left hand. She soon began to lose functionality in the hand, so she and her husband began meeting with doctors to determine what was going on. After multiple visits, eventually they landed on a diagnosis of ALS. Kat gathered her family together to share the news of her diagnosis on National Siblings Day. Initially, some family members had no idea what ALS was. One of Kat’s sons immediately began doing research.

“He and I were the ones that sat down together and got on our phones immediately and started looking it up… we saw the lifespan of people who have ALS and knew this was not a good thing,” Libby said.

After Kathy had broken the news to her family, they got connected with the ALS Association Texas Chapter  and began going to support groups and clinics together.

“There’s this resource out there of these support groups… they are an excellent resource for people who are going through this, especially for family members. We need that connection with other people to work through our emotions together,” Libby said about becoming involved in the ALS community, adding that the support groups were especially helpful for her mother who had to watch her daughter go through this disease. Though Libby initially went to the groups to support her mother, she soon found herself benefitting from the groups as well, “It was interesting to meet other people and let people know that we understood what they were going through as well.”

Joining the Walk

Kat had always been a go-getter, and that didn’t stop even when she was diagnosed with ALS.

“Kat would go after what she wanted; if someone didn’t give it to her, she’d find a way to get it herself. When she was diagnosed, she heard about the Walk, so when she was still able to walk, she gathered everybody up – her friends and our family—and we did our first walk at Woodlawn Lake in San Antonio.”

The team name, Team BobKat, is a combination of Kat’s name, and her husband’s name, Bob. They have been active in every walk since Kat was diagnosed and hope to continue carrying the torch in honor of Kat and to help others who are dealing with their own ALS diagnosis. Libby has taken on the role of team captain since her sister’s passing and hopes to make the walk as successful as possible in Kat’s memory.

“We are a direct example of how these funds help people. We were able to use the resources that the ALS Association provided,” Libby said, “We walk because we as a collective want to raise money for this association because we know the good that can come out of the funds that are raised.”

Helping Others Along the Way

Libby knows how hard it can be to deal with the news when a loved one is diagnosed with ALS. She urges others to be empathetic and gracious with both themselves and their loved ones and encourages people to reach out and ask for help.

“For the people with ALS and the caregivers – take the help… there’s help not only from friends and family that want to give it, but also from the Association as well.”

Even when Kat lost her ability to speak, Libby was always amazed with her sister’s tenacity. Kat continued to organize her family’s walk and even planned an entire wedding vow renewal ceremony for her and her husband using her eye-gaze machine.

“Despite everything that happened to her, I’m just amazed how strong she was mentally and emotionally. She has this big family… she had a very strong mind and was open to accepting the help and using the resources that were given to her to live her best life despite the diagnosis.”

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Filed Under: Stories, Walk to Defeat ALS Tagged With: ALS Hero, als stories, walk to defeat als, why we walk

“I Can” – Trace Craft’s Legacy Powers the Crusade to End ALS

September 21, 2021 by Rhema Jones Leave a Comment

“I Can”, the life motto of Trace Craft, a loving husband, father, and dedicated educator and school administrator. Trace lost his battle with ALS in September of 2020, but today his legacy powers the crusade to end ALS.

“Trace was my best friend, beloved husband, confidant, inspiration, supporter, teacher, and coparent….He was the most amazing man I had ever met…Not a day goes by that I don’t think of him. I miss him dearly!” his wife Jennifer shared in an interview.

Jennifer and Trace met in 1992 and were engaged within a year of meeting each other. Five years later, they married and were for 23 wonderful years. They have two boys, Jaycob and Trevor who are now 14 and 18 respectively. “We were a very close and active family,” Jennifer shared. “Trace, the boys and I loved spending time together outdoors…We also cooked many meals together.”  The Craft family’s love for each other spilled over into their involvement with the local community.

Their family moved to Weatherford in 2013 when Trace accepted a job as an Assistant Principle at Tison Middle School. He was very intentional about building relationships in this role with both his colleagues and with students. Trace started a club for young men in summer of 2017. The Boys to Men club was created to teach young boys how to be responsible and respectable men.

This group grew tremendously with more students and community mentors getting involved each year. Later, he helped found a Girls of Greatness club for young women. As Trace continued to impact his community in Weatherford ISD, he was promoted to Assistant Principal at Weatherford High School.

Their family also involved in the Weatherford community through church at Northside Baptist. Jennifer, who has a career as a pharmacist, noted that she herself viewed her coworkers as extended family. “That’s why we ended up having so much support I think once he was diagnosed was just because all of the connections, we were able to make.”

The Long Road to Diagnosis

Jennifer recalls the long process of coming to Trace’s diagnosis of ALS. She first noticed slurring of his speech in February of 2018. Through a series of doctors’ visits, Trace was misdiagnosed with stress and even discovered a small pituitary tumor in his brain. But none of those explained his declining condition, as he had also started to have problems swallowing certain foods.

After further testing, Trace was officially diagnosed with ALS on August 28, 2018. Jennifer shared how they held hands together in the car on the way home, wondering how to break the news to their two sons. “We told them that evening…It was hard. We all cried and hugged…Our ‘world’ changed. We now had to look at life from a different perspective.”

I Can – My ALS Blog

Trace blogged to document his progression and share his thoughts. In his first post, he shared his newfound purpose on the ALS journey.

“This disease will not define who I am or how I will live my life…My motto is ‘I Can.’ I can be positive. I can persevere in the face of hardship. I can be the best person I can be. I can be the man my God wants me to be. I can be determined. I can make a difference!”

At the end of that blog, Trace invited everyone to join his Walk to Defeat ALS team: Craft’s Crusaders. Jennifer noted how Trace’s favorite Bible verse inspired the team name. “The verse mentions being an ambassador in chains…Crusaders want big change now. They give a voice to the unheard while lobbying for a movement with unbridled passion.”

The Crusade to End ALS

Trace was eager to lead the charge against ALS. “He felt like it was a crusade to not only educate people about what ALS was—but also to try to get everyone on board to try and help find a cure for ALS or to find better treatment for ALS,” Jennifer shared.

The Weatherford community joined Trace on his new crusade. One of those people was Marvin Lofton, who first met Trace back in 2017 when they both worked at Tison Middle School. “His character speaks volumes, his integrity, his respect level for others, and the way that he showed how he cared about others was just something that he modelled and I idolized.” Marvin shared.

Marvin was familiar with ALS because his uncles wife had passed away from the disease the year prior. He joined the walk to honor them both. Marvin noted he was amazed at how resilient Trace was during the Walk.  “I can remember the first time we went on the walk…I’m like there’s no way this dude can be walking with this cane in the hot weather…this is a superhero, a real-life superhero.”

Trace recalled this experience on his blog the next day, “It was a very long three miles! I was not sure I was going to make it, but I pushed through to the end! I finished!…I told myself I was going to finish the entire three miles.” Their team raised over $10,000 to support the ALS Texas mission.

Jennifer described their first walk as both amazing and heartbreaking. “We saw people who walked in memory of loved ones lost, others further in the journey than us and the newly diagnosed like us. It was encouraging to see so many people rally for the same cause with no barriers and motivated by love.”

A Supportive Community

The community not only rallied behind the Craft family at the Walk, but also with their day-to-day life. The congregation at Northside Baptist quickly became helpers on their ALS journey. Gentlemen from the men’s ministry would visit the house to help lift Trace and move him throughout the home. Others would visit to mow the lawn, clean their house, prepare meals, and support them through prayer.

“We could focus on him and not focus on the minutia and monotony of the little things in life than can take you away from spending time with your loved ones. It was really encouraging,” Jennifer shared.

They not only had the support of their Weatherford community,  but also the support of the ALS Texas community. Their family benefited from the virtual support groups and multidisciplinary clinics. Jennifer mentioned how it was so convenient to come to one location for a full team of doctors. “I don’t think we would’ve ever have gotten as far as we did without that kind of multidisciplinary team…And I know part of that is because of the funds and the support that the ALS Association provides to keep those types of clinics going.”

Keeping Trace’s Legacy Alive

Trace lost his battle to ALS in September of 2020. Just seven weeks later, the Craft family participated in the virtual Walk to Defeat ALS. Jennifer noted, “2020 was hard just 7 weeks after Trace’s death, but it also helped me feel connected while I felt so alone.”

It is now nearing the one year since Trace has passed, and his legacy continues to impact the Weatherford community. After his diagnosis, Tison Middle School decided to honor Trace by renaming the Boys to Men club he founded to The Craftsman Club. “His impact on the community in Weatherford is going to be unforgettable and is going to be a legacy that going to live on forever,” Marvin shared.

Trace inspired Marvin to be an ongoing learner and pursue a doctorate degree. Today, he not only honors Trace through that process but also as the team captain of Craft’s Crusaders. “To keep that spirit and legacy alive is the reason why I want to be a part of it, not only in memory of trace but in memory of my aunt, Maddie Connor,” he shared.

We Can Make a Difference

Today, Jennifer and her two sons lean on Trace’s memories to power the crusade to end ALS. “We walk because of the fact that we want to honor those who have already been through this journey, we want to remember them, and help raise funds for those who are going through it now,” Jennifer tearfully shared.

The Walk brings hope to our ALS community, hope for a world without ALS. Jennifer shared, “I hope until then, ALS Texas continues their mission and the Walk is an imperative part of making the mission successful.”

When you join the Walk to Defeat ALS, you support critical research for a cure, to clinics, to virtual support groups. When you walk, you show Texans with ALS and their families that they don’t have to fight this disease alone. We Walk to honor those like Trace Craft who have passed from this disease. We walk to celebrate those who are bravely fighting this disease.

Take any positive word or words you want and put it behind ‘I Can.’ We can make a difference in this world. – Trace Craft

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Filed Under: ALS Hero, Walk to Defeat ALS Tagged With: als stories, walk to defeat als, why we walk

How Friends of Rupesh Are Fighting Back Against ALS

August 24, 2021 by Rhema Jones Leave a Comment

Siobhan Kotiya describes her husband Rupesh as a people person who is very outgoing. His personality aided him in making many great friends over the course of his lifetime. Now that he’s living with ALS, the Kotiya family and Friends of Rupesh are incredible advocates for Texans living with ALS.

An Unexpected Diagnosis

Rupesh Kotiya grew up in North Carolina and moved to Dallas, Texas fifteen years ago after spending some time in New York. Siobhan is originally from the UK, and after dating long-distance for a while, she moved to Dallas the same year. Today, they are married with two wonderful boys, Ronan who is 10 and Keaton who is 8.

Rupesh first noticed symptoms in his shoulders in 2013. He could not make his normal shots in basketball and it became difficult to do simple tasks. Concerned that something was wrong, Siobhan and Rupesh started to meet with therapists and specialists. Through a gradual process of elimination and second opinions, they unfortunately received an official ALS diagnosis in October 2014.

In that moment, everything changed for the Kotiya family. Their sons were only 4 and 2 years old at the time. Rupesh still had a successful career as the VP of Sales in North Texas and Oklahoma for Mainstay Investments, a division of New York Life. Nothing would be the same, but they would not let ALS get the best of them.

“It was that decision around fight or flight, and we just decided we were going to fight it. We were going to try and do everything possible,” Siobhan shared.

Overcoming the Challenges of ALS

Despite the challenges of a new diagnosis, Rupesh continued to work full time for two years. He had an impressive career as the VP of Sales, and it was only after it became unsafe for him to drive that he retired.

Daily tasks became difficult for Rupesh as his ALS progressed, such as showering and getting dressed. Their family searched for assistive options and they soon connected with the ALS Association of Texas. Rupesh was provided a shower chair from the Equipment Loan Program. From there, the Kotiya family continued to grow their relationship with the chapter and now they are passionate about supporting the ALS Texas Mission.

By the time 2020 came around, Rupesh felt his symptoms more in his arms, legs, and hands. It became more difficult for him to walk without a walker and now he uses a motorized wheelchair. In that same year, his doctor recommended that he have a trach placed and he is now on a ventilator 24/7. Even still, Rupesh doesn’t let that stop him from making memories with his family.

Friends of Rupesh and the Fight Against ALS

Siobhan describes her husband Rupesh as a people person who is very outgoing. Throughout his life, he has made many friends who are now eager to support his ALS journey.

The Kotiya family previously supported other walk events, but after connecting with ALS Texas, they decided to support the organization. “Even though the prognosis is never good and there is no cure, maybe we can be the ones to help find the cure,” Siobhan shared. They joined the Texas Walk to Defeat ALS under the team name, Friends of Rupesh.

“This provided us with the opportunity to support an organization that is not just focused on funding research and finding a cure but also supporting families that are going through it… They provide future hope as well as the day to day support that you need.” Siobhan shared.

Last year, during the pandemic, their goal was to raise only $750 – $1,000. However, by the end of the Walk, they had raised over $14,000 to support the ALS Texas mission. “Everyone just kept giving and giving!” Siobhan shared.

Siobhan hopes that Rupesh’s legacy will have a lasting impact on their two children. Already, their oldest son Ronan, has been inspired by his father. He wrote a book about his father’s ALS journey. “The book is written from the perspective of a 10 year old and aims to provide hope that you can still do many things, e.g., go on holiday, attend parties and most importantly, enjoy life with your loved ones”. What started out as a summer project turned into a fundraiser. Ronan has sold over 600 books and is close to raising almost $7,500 to benefit Texans with ALS.

Ronan isn’t the only one inspired by Rupesh to support the ALS Texas mission. Six years ago, one of Rupesh’s close friends created the “Friends of Rupesh” golf tournament to raise funds for the ALS Texas mission. This year marks the sixth anniversary of this event to honor Rupesh.

These are just a few of the ways that the Kotiya family and Friends of Rupesh have rallied against the fight against ALS. In the last several years, they have raised over $35,000 to support the ALS Texas mission. Their story is a true testament to the power of our ALS community. Those living with ALS and their loved ones are determined to end this disease, and ALS Texas is here to lead the charge.

Why Should You Support ALS Texas?

When asked why others should join the Walk to Defeat ALS, Siobhan answered with confidence. “We are a family that’s going through this every single day and dealing with the challenges that come with it.” She continued, “Having that ongoing support that makes a difference to your life is so important as opposed to just waiting for a cure that unfortunately many won’t see in their lifetime.”

She noted how ALS Texas supports her family with resources like a shower chair. She also discussed how the North Carolina chapter is equipping them with a power wheelchair to use while they travel to the state where Rupesh grew up.

When you join the Walk to Defeat ALS, you not only support research for a cure, but also crucial local care programs. Most importantly, it gives us the opportunity to honor and celebrate Texans with ALS and their families.

Although everyone’s journey is different, we all have one common goal and that it is to rid the world of this horrid disease and to make those who are diagnosed as happy and comfortable as possible.

You can support Texans with ALS like Rupesh this year at the Texas Walk to Defeat ALS! With both virtual and in-person options, you can walk YOUR WAY! Register in the city nearest to you and walk wherever you want on Saturday, October 30. Learn more at alstexas.org/walk. Together we will create a world without ALS!

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Filed Under: ALS Hero, Stories, Walk to Defeat ALS Tagged With: ALS Hero, als stories, walk to defeat als

Walk to Defeat ALS Hero: Maria G. Sanchez

October 28, 2020 by Catherine Nodurft Leave a Comment

Written by Maria’s daughter, Melissa.

Maria was a hero to everyone for many reasons. For her closest family, friends, and mentees it was because they could feel that Maria possessed the ability to see the very best in them no matter what. They knew that her occasional tough love was actually just the frustration she felt from them not living up to their own limitless potential.

Quite literally, she was a hero because she was a registered nurse, a nurse manager at University Medical Center (UMC) in El Paso, and a clinical instructor for The University of Texas at El Paso School of Nursing. She was a go-getter, a leader, and well-respected at the hospital and in her community. Maria was dedicated to patient care, and accomplished many “firsts” for UMC. She was a mentor to many. So much so that her UMC family continues to raise awareness for ALS and joins the Walk every year in her memory.

“She was full of life. We would go out shopping, and she would out-last everybody,” her daughter Melissa says. She always had an inappropriate joke, a Maya Angelou quote, uplifting advice and a prayer ready for any situation and any person that needed it.

Maria worked to instill strong values in her children, Melissa and Francisco, and sparked their desire to give back. Her motto was: “To whom much is given, much is required.” Melissa and her brother saw this in action, as their mother continuously helped family and gave back to her community, never expecting anything in return.

When Maria was diagnosed with ALS in August 2015, she didn’t tell her children or her family until January. She wanted to protect them, as she always did. She took the initial heartache, head on, with only her husband David by her side. She referred to him as her rock and her angel because he stood by her side through every heartbreaking battle so that their children and family didn’t have to worry. And they didn’t because they knew she was in the best hands.

During her battle with ALS, her humor and unwavering faith gave her family peace. Her smiles in photos were bigger than ever. Her daughter believes she did this consciously in order to show her loved ones that not even ALS could destroy her fighting spirit and the love she had for them. Her whole life, she embodied the Maya Angelou quote, “We may encounter many defeats, but we must not be defeated.”

After Maria passed away, her family felt called to honor one of Maria’s final wishes, “Life goes on,” she said, “You have to go on.” There was no better way for them to go on than to honor her life by continuing her legacy of giving back by starting the Walk to Defeat ALS team Maria G. Sanchez’s Warriors and volunteering with the ALS Association of Texas. They have even started reaching out to corporations to help secure corporate sponsorships for Walk to Defeat ALS. Their hope is that their efforts contribute to helping people with ALS and their families in even the slightest way.

“I want to tell people with ALS that you are not forgotten. You are not alone. My Mom at times felt like she was a burden to us, but it is the honor of our lifetime to be there for you in your time of need, just as you have always been there for us. You’re our heroes and you will always be our source of strength.”

Want to get involved and support Texans with ALS like Maria?

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Filed Under: Inspiring PALS, Stories, Walk to Defeat ALS Tagged With: als, ALS Hero, walk to defeat als

Walk to Defeat ALS Hero: John Lay

October 22, 2020 by Catherine Nodurft 4 Comments

John Lay is a 3rd generation Austinite and a 4th generation Texan with a long history of being active in his community. He served on the Austin ISD school board for eight years and furthered his love for the river by serving on the Colorado River Alliance board for twenty years. Recently, John was bestowed the honor of having their annual River Hero award named after him. Family is everything to John and his wife Jill. Their tight knit family of five children and eight grandchildren must agree, as they all live within three miles of one another. John is outgoing, has never been afraid of a microphone or podium, and his children often joke that they are jealous of their parents’ fun social life and incredible friendships. John often says, “Surround yourself with people that make you smile.”

In early 2018, John started to have weakness in his arm. He consulted multiple doctors and went through many tests in search of an explanation. After no diagnosis had been made, he started to suspect that something serious was going on but didn’t want to worry his children. After a muscle biopsy later that year, a motor neuron disease was indicated. In early 2019, he was referred to Dr. Stanley Appel at the Houston Methodist ALS Clinic, and was diagnosed with ALS. The prognosis for survival with ALS patients is two to five years.

John and his wife Jill sat down with their family and shared the diagnosis without shedding a tear.

“I’m 70 years old, I’ve lived a long great life. Don’t be sad for me. The good news is we know this now and we have time together,” he told his children.

As soon as he was diagnosed, John and his family got to work researching everything they could about the disease and found the ALS Association of Texas. John and Jill joined the monthly support group and his children started their Walk to Defeat ALS team.

At first, John was hesitant to tell his story. He saw people in the support group and at the ALS clinic who were younger, with small children, and in later stages of the disease. When diagnosed, John was in his seventies, at the beginning stages, had watched his children grow to adulthood and have children of their own. He felt fortunate compared to many other patients.

Then John had a thought: “How do we raise awareness for this, not just for me, but for everyone with ALS?” As his children worked on their Walk team, they learned more about ALS advocacy and the work of the ALS Association of Texas. They talked to their dad about the impact of telling his story. John realized that “If my story can help other people and raise awareness, let’s go big for the Walk. I’m ready.”

The Lay family started recruiting friends and family to join Team John Lay for the Walk to Defeat ALS. “Everyone who has ever met our dad just loves him… They would do anything for him,” says his children. More than 150 people walked, 340 donated, and they raised $55,000!

They continued their Walk celebration at an after-party at a friend’s restaurant where John gave a speech.

“This has been the best year of my life,” John said. “The support that my family, friends, and children’s friends have given me has been incredible. This is a journey and I’m on the journey, but as I always tell people, everybody’s got something. Each person has situations with their own family, you just deal with those things, you support one another and keep smiling. I wake up every morning and I’m happy to be here and I try to make the best of each day.“

John was accepted into Dr. Stanley Appel’s groundbreaking Treg trial in March, just when COVID-19 hit Texas and everything shut down. But John was determined. “If I can be part of the science to move the ball forward to slow the progression or find a cure, to be able to contribute that, then I don’t feel like I’m sitting down not doing anything,” he said. Right now, John doesn’t believe he will see a cure in his lifetime. But Dr. Appel’s trial has been shown to slow the progression of the disease, and that could make all the difference for a person living with ALS. John isn’t participating in the clinical trial for himself. He’s doing it to help others in the future. And he believes that if someone is going to find a cure, it’s likely to be Dr. Appel and his team.

The ALS Association funds Dr. Appel’s Treg study and supports the Houston Methodist ALS Clinic, which is why John and his family are passionate about raising funds through the Walk to Defeat ALS.

Since his diagnosis, John has lost the use of his arms. But he has still made it a priority to live life to its fullest. After his diagnosis in 2019, he took a kayak trip down the Colorado River, went to Wrigley Field, and visited the casinos in Lake Charles. Today, he’s spending as much time as possible with his family and friends, which has been challenging during the pandemic.

This year, the Walk to Defeat ALS is going to be much different due to the pandemic. Instead of bringing teams together for one large event, as we have done in years past, teams are encouraged to host their own Walk to Defeat ALS at Home, in the way that works best for them. On October 31, instead of bringing together a team of 150, the Lay family will gather and walk around their neighborhood, at a social distance, walking in unity with the ALS community across Texas.

Fundraising during a pandemic is a challenge, “This is a disease where you can’t sit on the sidelines for a year or two because of the impact of COVID. ALS can’t wait. It’s going to be harder to get federal funding during the pandemic, so it’s going to be things like the Ice Bucket Challenge, the Walk, and individual donations that moves the needle closer to slowing the progression of ALS,” his children say.

John is grateful for his circumstances, which can be a surprising thing to hear from someone who has been diagnosed with ALS. He has chosen to approach this in a positive way, cherishing each day he spends with his loved ones, sharing his story, participating in the clinical trial to move research forward and raising funds so that one day we can live in a world without ALS.

Want to get involved and support Texans with ALS like John?

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Filed Under: Inspiring PALS, Walk to Defeat ALS Tagged With: als, ALS Hero, walk to defeat als

Walk to Defeat ALS Hero: Judy Baucom

October 13, 2020 by Catherine Nodurft Leave a Comment

Dawn and Shelley have been participating in the Walk to Defeat ALS in Dallas for the past nine years in memory of their mom, Judy Baucom.

Shelley says, “Mom was the most selfless person I’ve known, who always put others first and loved big.  She was a great listener and gave the best advice – my kids still talk about things that she had told/taught them!  Up until the end, she wanted to make sure her family and those around her were taken care of – her concern for others took priority.”

True to her nature, Judy had been taking care of her sister, who was battling cancer, when the first signs of ALS started to appear. She was dropping things a lot, tripping occasionally, and her speech was a bit slurred. But Judy and her family all thought it was due to the stress and exhaustion due to caring for her sister. “It all makes sense now, but at the time she just chalked it up to ‘I’m tired, it’s old age,’” says Dawn.

Judy pushed past her own symptoms and continued to lovingly care for her sister until she passed away in June. Three days later, Judy had a fall and her left side went numb. Everyone thought it was a stroke, due to the stress of losing her sister. She went to rehab, and her family noticed that even with physical therapy, she still was not improving, but instead getting worse. In September, she went to the ER with leg weakness and tremors, and after seeing a neurologist for tests, was diagnosed with ALS.

As soon as her family found out about the diagnosis, Dawn and Shelley researched the disease and signed up Team Judy for the Walk to Defeat ALS in November 2012.

Judy helped design the team shirts for her Walk team. She loved hummingbirds, and included one on the front of the shirt. Her Occupational Therapist, upon learning that Judy was an artist, created a stamp of Japanese characters for “hope” and “strength” that she put on the back of the shirt. He even bought her a watercolor kit so she could continue to paint the hummingbirds she loved.

After her fall, Judy lost the ability to speak, and relied on a small whiteboard to communicate with her loved ones, often writing words of encouragement and inspiration for her daughters. Even in the midst of ALS, she was still caring for others.

Judy’s health declined quickly, and in October went to a hospice facility in Tyler.  She passed away on November 10 – the same day as the Walk to Defeat ALS, and merely six weeks after Judy had been diagnosed. The night before, Dawn and Shelley visited their mom, knowing she did not have much time left, said their goodbyes and told her they were going to the Walk to Defeat ALS. They got the news early the next morning that she had passed away. “She knew we were walking. We always said she wanted to be there with us,” says Shelley.

At the Walk to Defeat ALS, in addition to friends and family, Judy’s nurses, physical therapists, and other people she had briefly met during since her ALS diagnosis, joined Dawn and Shelley. Judy had known some of these people just a short amount of time, but she had made a significant impact on them and inspired them to join the Walk in her honor.

“Mom not only showed strength through this whole process, but beautiful FAITH.  She was continually thinking of others and shared her Faith and Love in the Lord.  What a wonderful Legacy she left behind, and we have been so blessed to have her as our mother and friend.”

Dawn and Shelley have continued their mom’s legacy in the nine years since she passed. Over the years, they have hosted fundraisers for their friends and family, auctioned off Judy’s paintings to raise funds, and hosted a BBQ on Walk day for the Dallas ALS community, all to fulfill the vision of creating a world without ALS.

“ALS is a horrible disease…That’s why we do what we’ve been doing since the morning she passed. Try to raise funds and make sure that those that are still fighting and continue to fight have a chance. And that’s how we honor our mom,” says Dawn.

Want to get involved and support Texans with ALS like Judy?

Join Team Judy

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Filed Under: Inspiring PALS, Stories, Walk to Defeat ALS Tagged With: als, ALS Hero, walk to defeat als

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