2 posts tagged “ALS advocacy”

Worth a thousand words: A day in the life of Larry

Posted April 14th, 2017 by

As a child, Sarah Howell loved art. She got her first camera at 6 years old and realized, over time, that she had a way of connecting emotionally and expressing herself through photos. Now, she has her own studio. Her passion? Capturing genuine family moments. Sarah often stays overnight in the home of the family so she can spend the entire next day with them, from start to finish.

A day in the life of Larry Tyler

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

When Sarah’s friend, Teri, asked her to capture a day in the life of her father, Larry Tyler, she was both shocked and honored. Larry, living with ALS that required 24-hour care, wanted the photos released to raise awareness and funding for ALS.

Sarah was there with her camera, from Larry’s wake-up at 10:30am, until he went to bed that evening. What emerged was a series of 24 deeply moving photos that capture a day in the life of Larry and his family.

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

While she was prepared for sad moments with the family, she wasn’t prepared for the level of caregiver exhaustion she witnessed. For Sarah, the realization that ALS is a family disease was the hardest part of her visit.

 

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

Despite the hard moments of exhaustion, chaos and frustration, Sarah also witnessed how Larry and his family coped: with laughter and humor.

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

Reflections

After this time with Larry and his family, Sarah now wants to photograph a day in the life of one person living with ALS every year. Even though she doesn’t have a personal connection to ALS, she feels that this story could resonate with other caregivers. She shared her collection at a gallery and was moved by the reception.

Sarah hopes the collection will not only raise awareness for ALS, but also to increase awareness of the need for caregiver support and therapy. In the meantime, she hopes that her photos can do some good.

Check out the rest of Sarah’s 24 photo collection with Larry.

Find other ALS caregivers

Do any of Sarah’s photos resonate with you? Share in the comments.

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NFL Player Steve Gleason’s Inspiring ALS Story

Posted February 7th, 2012 by

Learn More About Steve's Advocacy Organization, Team Gleason

Did you catch the pre-game show before Sunday’s Super Bowl XLVI?  If not, you missed a beautiful NBC piece about Steve Gleason, who spent seven seasons as a safety with the New Orleans Saints.

Diagnosed with ALS a year ago, Gleason now walks with a cane, and his speech has been impacted.  The new father remains upbeat, however, and has thrown his energy into ALS advocacy work through Team Gleason.  (One recent project: bringing two ALS patients to the Super Bowl to fulfill their lifelong dream.)

Tune in below for the full NBC profile, which includes an interview with Steve, 34, and his wife, Michel:

Steve’s story reminded us of two topics covered on our blog last year.  During the NBC piece, Michel states that one of her biggest fears is Steve losing ability to speak.  This devastating aspect of ALS recently came up in our interview with ALS blogger Rachael, who discussed how important her eye gaze system (which translates eye movements into words) has been since losing her speech.  She says, “It allows me to converse on an almost level footing, conveying thoughts and observations, expressing myself in my own style with all its complexities and idiosyncrasies.”

Finally, Steve is another example of an athlete being diagnosed with ALS, just like baseball player Lou Gehrig, who is indelibly associated with the disease.  The NBC piece explores the potential connection between impact sports and neurological diseases.  Other researchers, such as Dr. Martin Turner, are investigating a possible link between ALS and athleticism in general.  Check out our post “ALS and Athleticism:  What Have We Learned?” to hear more about Dr. Turner’s research and how PatientsLikeMe data on ALS handedness (i.e. which hand is dominant) has contributed to it.