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.

Clinical Trials Give Hope to Texans with ALS

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The ALS Association of Texas invests in research to discover effective treatments and a cure for ALS. One of the ways we support research locally is through clinical trials, which are conducted at our ALS clinics across the state.

Dr. Carlayne Jackson, Medical Director of the ALS Clinic at UT Health San Antonio, first became interested in clinical trials in neuromuscular disease as a medical resident at the clinic. She would be the first to tell you she “fell in love with the patients” she treated during her residency, fellowship and eventually her first two years of leading the clinic’s ALS studies.

Founded in 1996, the clinic is designated as an ALS Association Certified Treatment Center. Dr. Jackson and her staff have used their multidisciplinary approach to offer hope for the future of ALS to their South Texas community and the 250 ALS patients they serve. Through the generosity of the ALS Association and the Glenn Biggs Institute for Alzheimer’s and Neurodegenerative Diseases at UT Health San Antonio, the clinic has recently been able to add neuropsychological testing and the services of a Nurse Research Coordinator to their offerings.

The Clinical Trials Process

The Research Coordinator meets with patients interested in participating in a clinical trial, sharing helpful information, including the number of visits, what to expect at each visit, potential side effects and treatment effectiveness. Once they have a thorough understanding of the risks and benefits, patients are screened to determine if they meet the criteria defined by the company or group sponsoring the trial. It is important to note that most of the criteria are put in place to protect each patient’s safety. Researchers must quickly determine if an intervention is working or not.

After a particular therapy has gone through Phase I testing on a healthy population, the San Antonio clinic conducts Phase II and Phase III trials on ALS patients accepted into the studies. Phase II trials focus on safety and dosing of the medication. Next comes the pivotal trial – Phase III – which the FDA reviews in order to determine the drug’s approval for patients outside of the trial. Phase II trials typically take six to 12 months, whereas Phase III trials can last 12-18 months.

The Importance of Clinical Trials

Dr. Jackson believes clinical trials are vital.

We will never be successful in bringing effective therapies to ALS patients without them first being studied in trials. We can’t prove what does or doesn’t work without a trial,” she says.

Through clinical trials at ALS clinics, such as the one at UT Health San Antonio, we are one step closer to finding treatments and a cure for ALS.

It’s OK to Have a Meltdown!

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November is National Family Caregivers Month, and we at the ALS Association of Texas cannot think of a better time to share our enhanced support for family caregivers. You are appreciated, and each week in November, we will be connecting with you to share another tool for your ALS Caregiver Toolbox.

This week, allow yourself permission to have a meltdown!

Here’s another important resource to add to your ALS Caregiver Toolbox – the Caregiver Bill of Rights.

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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.