ALS Texas

Travel the World Without Leaving Your House

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Social distancing has quickly become the new normal for so many people over the past few weeks. To a person with ALS, this is not that uncommon. Often times, people with ALS feel socially distanced, whether they are avoiding everyday illnesses or they have limited mobility and difficulty leaving home.

We have put together a list of virtual experiences that you can check out from your couch. From iconic Texas destinations to museums and concerts across the world! Take this extra time you have with your loved ones to create a new memory – even if it is virtually.

Texas Attractions
The Alamo
Houston Zoo Webcams
Dallas Museum of Art

Art & History
The American Museum of Natural History
Street Art Exhibition
The Louvre
Great Wall of China

National Parks
32 National Parks
The Hidden Worlds of the National Parks

Music & Theatre
Watch a Live Concert
Watch a National Theatre Play

Ocean & Wildlife
National Marine Sanctuaries
Great Barrier Reef

Stress Less On Purpose

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Our Director of Community Programs, Tonya Hitschmann, has been hosting ‘Stress Less On Purpose’ workshops across the state of Texas and last week hosted a virtual statewide session. With the new normal of connecting virtually, we felt like this was a great time to host this workshop and share these tips and suggestions with our ALS Texas community.

Stress comes from wanting things to be different – it’s really that simple. Every single day each of us is faced with a number of stressors we choose how we respond to those stress triggers is what makes the difference. Ask yourself.. why is this happening for me, not to me?

Today and every day focus on your why and your purpose. Think about the following four things. Focused Attention, Body Scan, My Why and Support.

Focused Attention

  • Pause and challenge your thoughts. Choose how you’ll respond.
  • Meditation: Choose any object; a small candle for example. Start with one minute and stay focused.

Body Scan

  • Breathing
  • Left nostril breathing to calm. Long, slow, deep breaths.
  • Check your heartbeat. Rapid-100+?

My Why

  • When I can no longer change the situation I am in, I am challenged to change the way I view it.
  • Knowing your WHY gives you a filter to make choices…that will help you achieve greater fulfillment.

Support

  • ALS Connection Groups
  • Friends
  • Family

Find simple ways to have less stress in your daily routine. Close your eyes. Breathe in and out ten times-concentrate. Imagine when you breathe in that it reaches all the way to your pelvis and lifts your abdomen. When breathing out, let the air come all the way from the lower abdomen and pelvis. Deep breathing relaxes the body and focusing on your breathing relaxes your mind.

Thank yourself for what you do. During the day, make small notes of all of the things you have finished. Collect the notes in a jar or on a table. When you go to bed, take a look at what you’ve written down and thank yourself for all of the big and small things you have done. Gratefulness induces positive feelings, which in turn adds motivation to activity.

Stress can cause pressure to the scalp and head area. By relaxing these “think areas”, you will begin to ease your reaction to stress. Rub your entire scalp with your fingers. Close your eyes and let the relaxed and good feelings slide through your whole body. This exercise is better with a friend, because of the oxytocin hormone related to another person’s touch.

We look forward to hosting more workshops like this one for our ALS community! Watch the full presentation below.

Register for an Upcoming Workshop

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.

ALS Hero: Pete Frates

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In college Pete Frates was an all-star athlete, becoming the captain of Boston College’s baseball team and hitting a monster home run in Fenway Park in his final year. A few years later, on March 13th 2012, Pete was diagnosed with ALS.

Almost immediately after hearing the diagnosis Pete took the news as a challenge, asking his doctor “how much money do you need to cure this thing?” After hearing “one billion dollars”, Pete’s immediate response was- “I will get you a billion dollars.”

After watching his friends do silly challenges on social media, he and others affected by ALS came up with a simple idea – dumping ice water on yourself and encouraging friends to do the same to raise money for ALS. Although ALS was a relatively unknown disease, Pete had quite the network of friends – including athletes with large social media followings. Soon the Ice Bucket Challenge spread like wildfire. In the weeks and months after, celebrities like Lebron James, Oprah Winfrey and Bill Gates joined in, all to raise awareness and funds for ALS.

The Ice Bucket Challenge raised a staggering $220 million for ALS nonprofits, putting him well on his way towards raising one billion dollars.

It’s been 7 years since Pete’s diagnosis, and in the years since he’s continued to champion for those with ALS. His family said it best: “He was a beacon of hope for all.”

Pete passed away on December 9, 2019 at the age of 34, but his legacy will live on as a hero for people living with ALS. Thank you Pete and the Frates family for everything you’ve done to progress ALS research and bring us closer to a cure.

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.

ALS Hero: Steven Sykes

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“ALS Hero” is a series focusing on highlighting notable PALS who have made an impact on their communities and the world at large.

Through the years Steven Sykes has enjoyed an active lifestyle- mountain biking, skiing, trail running and playing golf along with his two children and wife Laura. In January of 2014 he ran and completed his last race, and later that year he was diagnosed with ALS.

Steven’s ALS diagnosis may have physically slowed him down, but it didn’t stop him or his love for the outdoors. He continued to play golf well into 2016 and in 2017 he and his wife journeyed across the country in their RV to make the most out of the time they had left.

“Regardless of the disease that is affecting you it is the people that surround you that effect how you live with the disease instead of die from it.” – Steven Sykes

Steven is truly taking life by the horns, and he’s our 2019 Clay Shoot Honoree! Join us on March 25th at the Greater Houston Gun Club for an afternoon clay shoot followed by cocktails, dinner, auctions and awards. Not a shooter? No problem! Dinner-only tickets are available for those who don’t want to shoot, but still want to support the fight against ALS.

Register Today

Voice Your Love: Hug a Caregiver!

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An ALS diagnosis can affect the entire family. As the disease progresses, and patients are able to do less and less, it’s family members that often dedicate their lives to caring for their loved ones. This is no small task, yet caregivers are not often praised or paid for the work that they do.

In fact, according to the National Alliance for Caregiving, in 2015 “An estimated 43.5 million adults in the United States have provided unpaid care to an adult or a child in the prior 12 months.” This is a staggering amount of people selflessly providing care for those who need it.

That’s why today, on National Caregiver’s Day, we’re encouraging you to Voice Your Love for a caregiver. They dedicate their lives to caring for others and we want to use our voices to uplift these special people.

Remembering Stephen Winthrop, Chair of The ALS Association Board of Trustees

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We’re sad to report that Stephen Winthrop, Chair of the ALS Association Board of Trustees, passed away peacefully on December 24th while surrounded by loved ones. Stephen will be remembered as a champion for those with ALS and a true ALS Hero.

On November 6th, 2013 Stephen Winthrop, Chair of The ALS Association Board of Trustees, was diagnosed with ALS. Without missing a beat, Stephen and his wife went to work spreading awareness of the disease through their Facebook page WillWinAgainstALS, and through fundraising- regularly being recognized as the highest earners for The ALS Association’s Massachusetts Chapter during the Walk to Defeat ALS.

Stephen taking part in the Ice Bucket Challenge

In his five years of living with ALS, Stephen was recognized with a Hero Award from the ALS Association, participated in clinical trials to further research efforts, took part in the Ice Bucket Challenge and served as Chair of the Board of Trustees. Stephen will always be remembered for his tireless work to spread awareness of this devastating disease.

“Over the past few years I had the privilege of working with Stephen on several occasions. Stephen led with wisdom, grace and showed true perseverance. He never let ALS define him. Stephen truly made a huge impact on the path to creating a world without ALS. He will be missed.”

Tanner Hockensmith
Executive Director
ALS Association of Texas

“I have ALS, but it doesn’t have me.” – Collin’s Story

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After being diagnosed with ALS in October of 2014, Collin Hadley gave himself one day to be frustrated, only one, before declaring “I have ALS, but it doesn’t have me.” 

Since that day Collin and his family have set out to make as many memories as possible, including 25 family trips, fundraising for ALS, finishing the Cowtown half marathon (in a neon pink stroller), and more. Although Collin strives to be positive he recognizes that not every day is easy. He says, “Though not visible on a daily basis, every month for the rest of your life is a little more difficult than the one before.”

Even in the face of ALS, Collin has continued to grab life by the horns with the help of the ALS Association of Texas. “When I had my first falls with this disease, they got a hoyer lift in my home immediately.  When it was no longer safe for me to stand up in the shower, they had a shower chair sent to me that day. When I could no longer get in the swimming pool with my kids, they found me a pool lift.” He went on to describe how an ALS Association representative made a 4.5 hour drive to deliver a power wheelchair to his hotel room when he was on vacation. “The ALS Association staff and volunteers have dedicated their lives to ensure that those living with ALS today can continue to live life and make memories”.

Collin stresses the importance of having a community of heroes to help people with ALS navigate through life- “This terrible disease takes a village, and thankfully the one many of you have built for me and my family is rock solid.”

Interested in becoming an ALS hero for people like Collin? Donate today!

Project Revoice: Giving Back Voices Stolen by ALS

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What does it mean to lose your voice? For many, the loss of vocal communication means losing a piece of what makes them feel human. As ALS progresses it robs people of their ability to speak, leaving them to talk to loved ones through devices with clunky, computerized voices.

Pat Quinn, creator of the famous Ice Bucket Challenge, spoke to the ALS Association about the pain of losing your voice- “It is crushing when you have so much to say but you are almost forced to keep it in.”

We understand the pain patients endure as they feel their voices slipping away and we set out to do something about it. In 2018 we launched Project Revoice– an initiative aimed to return voices stolen by ALS. Thanks to technology created by Canadian-based tech company Lyrebird, ALS patients will be given new, natural sounding “voices” by having their own voices banked and fed through speech-generating devices.

It’s through Project Revoice that Pat was once again able to hear his own voice. “It truly feels like a piece of me that ALS took away has returned” he said, in his own voice. He continued, expressing how this new development gave him the push he needed to keep going-  “This has lit a fire inside me to continue fighting with everything I have.”

The ALS Association hopes to spark more innovative efforts like Project Revoice, and each and every day we’re making progress thanks to wonderful people like you! Would you like to help us create a world without ALS? Donate today.