ALS Texas

ALS Heroes: Jim & Diane Tobin

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Jim Tobin was training for his third half marathon when he began noticing weakness in his hips and right leg – not a good sign for a runner. Two and a half years later, in January, 2016, after many tests, he received the diagnosis that would forever change his life: ALS. 

His wife, Diane, says, “Those three letters sent shock waves through us when we heard them. Suddenly life was different.”

They wasted no time, and decided to travel to Paris, a dream that had long been on their bucket list. Though they had to navigate the streets of Paris with Jim in a wheelchair, the memories they made are something they both cherish.

That trip pretty much sums up how Jim has lived his life as a person with ALS. He is a testament to the fact that just because you have a diagnosis of ALS, it doesn’t mean you stop living and challenging yourself. He has chosen to redefine himself, to live a life that has purpose and meaning. He hasn’t let the disease take his joy.

The Importance of Community

Focusing on community, rather than isolating himself, has been one of the most important ways he’s continued to live his life to the fullest.

“ALS is an isolating disease,” says Diane. “There’s no better way to break down the wall of isolation than to build connections and community,” she adds. 

Jim and Diane have been fortunate to have the support of many friends. Diane says, “Jim made lifelong friends playing tennis and golf and running half marathons. To this day, they are still here for him, dropping by to visit and hosting their men’s breakfast group at our home.”

Hope for the Future

Jim is quick to say, “ALS is not incurable, but it’s a complicated disease. Curing it takes a lot of money.”

It’s that hope for the future that spurs his and Diane’s passion for raising awareness and resources to support others with ALS and to help find a cure. 

While they know they’re fortunate to be able to afford the care and devices Jim needs, they realize others are not. Jim recently was able to get an Eye Gaze machine, making it easier for him to reconnect with friends and family through email, texts and calls. He and Diane want others living with ALS to have access to the same kind of assistive technology. 

The couple believes the ALS Association of Texas helps people with ALS “live their lives in the best way they can.” That’s why for the past three years they’ve participated in the Walk to Defeat ALS in Houston. They and their team raise money for the ALS Association to fund research and support for those living with ALS. One particular program that is dear to their hearts is the ALS Texas equipment loan bank, which allows people with ALS free access to durable medical equipment and assistive technology. Equipment can be very expensive. ALS Texas provides this equipment, easing the financial burden and helping to provide a better quality of life for people with ALS. 

Since Jim’s diagnosis Diane has been inspired by a piece called  What ALS Cannot Do. It’s become the couple’s mantra and has encouraged countless individuals living with ALS and their families. 

“While you have ALS, you are not ALS. It is merely a part of you.”  – Diane Tobin

What ALS Cannot Do

ALS cannot cripple love.

ALS cannot erode faith.

ALS cannot destroy peace.

ALS cannot silent courage. 

ALS cannot suppress memories.

ALS cannot weaken family.

ALS cannot erode the spirit.

ALS cannot conquer the soul.

Baseball: Not Just a Game, But a Lifetime Passion

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Submitted by Darin Severson, Regional Operations Manager – South Texas, at Capital Senior Living

During a recent visit to Heritage Oaks, I was asked to meet with a resident who had a complaint and wanted to speak to someone in charge. I was introduced to the resident, Richard. Richard invited me in to his home, and asked me to sit down for a few minutes to talk. I quickly realized that Richard did not have a complaint, but a request. As I sat and listened to Richard, I understood that his request was a heartfelt request to enjoy his lifetime passion, one last time in-person.

It turns out that Richard has ALS and spends most of his days in his room, in his power wheelchair, listening to baseball games on the radio or watching the games on TV. His passion is the Houston Astros, and his request was very simple, yet powerful. He wanted to see his beloved Astros play one last time, in person, while he still had sufficient command of his body, and was able to enjoy the experience. His only issue was that no one in his family had a vehicle that would get him to and from the game, as he has a power wheelchair. A plan was developed, and with the help of the ALS Association of Texas, Richard would get his wish.

Two weeks after my meeting with Richard, he was surprised by his son and grandchildren with the news of his pending trip to the ball game. Richard broke down in tears when he heard the news. The day of the game finally arrived, the look on Richard’s face was like a child on Christmas morning. His son and grandchildren arrived at the community, and he was off on his trip to the Astros and Minute Maid Park.
While sitting at the game with Richard and talking with him, I learned that he was not just an Astro’s fan, but a historian of all things baseball, and all things Astros. I learned that the Houston Astros were originally the Colt 45’s, but, had to change their name because of a lawsuit. I also learned that Richard was an avid baseball player in his younger days and had always dreamed of making the “show”. In a rare moment of weakness from this man, he said, ”I had always dreamed of being in the majors, I just never thought that I would get a Major League Disease instead.” ALS or Amyotrophic Lateral Sclerosis is also known as Lou Gehrig’s Disease. Lou Gehrig was a baseball player for the New York Yankee’s for 17 years in the 1920’s and 30’s. ALS is a disease that impacts the neurons controlling voluntary muscles in the body. Richard later in the evening stated that he hopes that someday they will find a cure for this disease.

Richard continued his history lesson on the Houston Astros. He was at the first game in the Astrodome in the mid 1960’s, he remembers the events of the day well, and was able to recall the score. (I looked it up later.) He was spot on. The Astro’s defeated the New York Yankee’s 2-1.

The game was Thursday night, September 5th, the Astros found themselves down 7-1 after the second inning to the Seattle Mariners. Richard concentrated on the game, taking in the sights, enjoying his hot dog. Talking with his son and grandchildren and soaking up the experience. The Astro’s ended up winning the game in extra innings 11-9. Richard summed up the night with one word, “Amazing.” As Richard returned home, and was getting off the bus, he was beaming with happiness, and a grin that went from ear to ear. It was an honor to enjoy this experience with Richard and his family an evening I will always remember and be grateful for.

How Sunny Erasmus is Raising Her Voice for ALS

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Since being diagnosed with ALS in 2015, right before her 28th birthday, Sunny Erasmus has become a warrior for others with the devastating disease. “There are many things that ALS has taken away from me”, she says, “but my voice is loud and persistent in the fight to end this disease”.

In May of 2018 she was one of 570 ALS advocates who made their way to Washington DC for the National ALS Advocacy Conference. There, people with ALS, their friends, and their families were able to make their voices heard and speak up for those who no longer can.

Twenty-two Texans traveled to Washington, D.C., in May to attend the National ALS Advocacy Conference.

At the conference advocates like Sunny learned about the latest ALS research, care service programs, and advocacy efforts to prepare them for meetings with Texas congressional staff and representatives. During those meetings advocates fought for public policy initiatives that would improve the lives of people with ALS, including:

  • Ensure at least $10 million in appropriations for the ALS Registry at the Centers for Disease Control (CDC).
  • Ensure at least $10 million in funding for the Department of Defense’s (DOD) ALS Research Program.
  • Support increased funding for the National Institutes of Health (NIH) in FY2019, especially in the National Institute of Neurological Disorders and Stroke (NINDS).
  • Pass the ALS Disability Insurance Access Act (S.379/H.R.1171) to waive the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance.
  • Educate and influence Congress and Administrative officials to remove complex barriers to Medicare home health benefits for people living with ALS.

Sunny called the conference one of the most impactful experiences of her life, where she learned about what it means to be an advocate, what to advocate for, and the progress that’s being made by other ALS advocates along the way. “Keeping up energy and focus is hard”, she says, “but advocating for my fellow ALS soldiers has sparked a fire in me that will never go out”.

It’s advocates like Sunny that spark energy to create change in public policy and beyond. Interested in becoming an advocate? Sign up today!

 

Introducing UNLOCK ALS

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The ALS Association Introduces New Mission Integration Concept at the Walk to Defeat ALS

Each year, hundreds of thousands of people across the country bring their determination, energy, and passion to the Walk to Defeat ALS to celebrate the progress made in the search for a cure with the ALS community. This year, we’ll honor our loved ones who are battling ALS and who have battled ALS through our new program UNLOCK ALS.

We’ll celebrate the real possibility of unlocking the mysteries of ALS. Anyone may hold the key to UNLOCK ALS – a fundraiser raising funds for the cure, a person with ALS participating in a clinical trial, a researcher developing treatments, even you.

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New Leadership Model Enhances Mission Focus in Greater Houston Area

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ALS Association Greater Houston team (left to right): Jordan Coldrick, Care Services Coordinator; Paulette Bennett, Care Services Manager; Alexis Hyatt, Database and Operations Coordinator; Jessica Welch, Regional Director; Eniye Elegon, Regional Development Coordinator

In July 2016, the ALS Association of Texas welcomed Jessica Welch as the organization’s first Regional Director on its statewide team. Tasked with leading the full mission of the ALS Association in the Greater Houston and East Texas region, her leadership in this new role has catapulted the Chapter forward in achieving its mission.

Thanks to this new on-the-ground leadership in the region, the team in the Houston office has a greater sense of ownership of their work and a renewed passion for ensuring they successfully meet the needs of those living with ALS in the region. And the results are evident with improved communications and team cohesiveness among the care services, fundraising, and operations functions.

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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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Fishermen Cast a Line for ALS

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On June 8 and 9, more than 65 fishermen from around the state gathered for the first-ever ALS Fishing Classic in Port Mansfield, Texas, raising $30,000 for the fight against ALS.

Participants competed in a speckled trout and redfish competition for prizes furnished by Yeti. They enjoyed a raffle, live and silent auctions, and delicious local food.

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ALS Can Never Steal the Joys of Motherhood

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In 2001, Patricia and Oran Hamilton welcomed their son Patrick into the world. As Patricia started this new chapter in her life, she knew that she wanted to cherish every moment of motherhood. Over the years, she watched as her son grew, encouraging his love of learning.

When Patrick was 11, Patricia started experiencing weakness in her hand, and went to a neurologist who gave her three different diagnoses. In March 2014, she was finally diagnosed with ALS.

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ALS Texas Implements New Leadership Model to Manage Texas-Sized Growth

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New Regional Director Joins North Texas Team

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ALS Association North Texas team (left to right): Taylor Brewer, Care Services Coordinator; Christina Flinn, Special Events Coordinator; Janette Steinheimer, Care Services Manager; Catherine Nodurft, Regional Director; Sharon D’Souza, Operations Manager; Elise Bernard, Communications Manager

Since it’s official formation in early 2012, The ALS Association of Texas has seen an exponential increase in the number of Texans with ALS that it is assisting. Along with that growth came the increasing challenge of ensuring that the chapter was best positioned and resourced to provide people in every corner of the state access to ALS clinics, support groups, loaned medical equipment and other resources to live with ALS.

To that end, last year the chapter began developing a staffing structure that went beyond the traditional department-focused organizational chart to something that would provide for on-the-ground leadership in each of its three regions serving ALS patients and their families within Texas.

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Texans Travel to Washington, D.C., to Advocate for People with ALS

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Twenty-two Texans traveled to Washington, D.C., in May to attend the National ALS Advocacy Conference.

More than 570 ALS advocates from across the country joined together for the 2018 National ALS Advocacy Conference in Washington, D.C., on May 13-15. Nearly every state in the country was represented, with 22 advocates hailing from Texas.

Stacey Crowder was one of the Texans who went to D.C. to advocate for People with ALS. Stacey was diagnosed with ALS on August 11, 2016. He’d first noticed a slight twinge in his left bicep earlier that year, and when he received an ALS diagnosis, it took him and his family on an emotional roller coaster. At first, Stacey was devastated and scared, but he was able to cope by relying on his spirituality and the support of his friends and family.

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