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Support Plays Important Role in Living with ALS

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By Ben Stephens

Ben and his family

Like most people with ALS, I’d noticed some changes long before the diagnosis came. In August 2013, I began having difficulty buttoning my shirt. After seeing three different neurologists, receiving an incorrect diagnosis of multifocal motor neuropathy, and a series of tests like a spinal tap and MRI, I finally received a diagnosis of ALS in December 2014.

ALS has forced a lot of changes on my life. As an estate planning and probate attorney, I have a number of clients who rely on me. After my diagnosis, I hired an associate, which allows me to continue to work while living with the realities of ALS. I quit driving about two years ago, and I’ve learned to work remotely. I had to sell my house because of the stairs, and my family and I moved to a duplex. ALS has affected almost every area of my life.

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Austin Family Grateful for Outstanding Support on Their ALS Journey

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By Jackie Barry

Jackie Barry lives with her husband Tom in Austin, Texas. She was diagnosed with ALS in 2016 and has been involved with the ALS Association since then. Read her story below.

In early 2015, I began having a speech problem, like a lisp, which seemed to get a little worse when I was stressed or tired. We were in the midst of getting home repairs done, so I thought it would just go away if I ignored it.

In August that year, I saw the doctor about it, and he suspected it could be a stroke or a brain tumor, among other things. I had an MRI, MRA and a carotid sonogram done, which all came back normal. Shortly after that, I was referred to a neurologist, who sent me for a swallow test, after which he believed it was a neuromuscular problem. He then referred me to Dr. Carlayne Jackson at UT Health in San Antonio. Dr. Jackson diagnosed me with ALS in February 2016.

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San Antonio Family Learns to Live with ALS

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By Guillermo Garcia

Guillermo and his family

My name is Guillermo Garcia. I am from San Antonio, Texas, and I was diagnosed with ALS in November 2015. It was ironic, because in August of 2014 we saw the Ice Bucket Challenge explode. Prior to that, we didn’t really have any knowledge of ALS and didn’t personally know anyone who had it. A group of us got involved in the challenge with my daughter’s softball team, and we started challenging everyone to do it. But we still didn’t really have a good idea of what it was.

In October of that year, my wife asked if I’d noticed that I had some twitching going on. I hadn’t until she pointed it out. We waited about a month to see if it would go away, but it didn’t. It just so happened that at the time, I was also having some issues with what we thought was carpal tunnel. I told my doctor about the twitching and was referred to a neurologist for some tests. I was diagnosed with ALS in November 2015, a year after initially noticing symptoms.

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Offering Help, Hope, and a Voice to those Living with ALS

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By John Quinn

John and his family

Like many people with ALS, I first noticed symptoms several months before I was diagnosed. In December 2015, I was dropping my right foot when I walked and began fatiguing more easily than normal.

I went to multiple doctors and finally saw a neurologist who suspected I had ALS, and he recommended I go to Houston Methodist hospital. In May 2016, I went through a series of tests for two days at Houston Methodist hospital and was given an ALS diagnosis.

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First Radicava Recipient in Texas Hopes Others Will Benefit from New Drug Too

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Lois is a wife, a mother of two girls, and grandmother to seven grandchildren.

After 46 years of teaching, Lois Albright retired, and she and her husband moved from their home in Brenham, Texas to Austin to be closer to family. Her daughters had been encouraging her to retire for many years, but she loved to teach.

“People who retire just get sick or have bad things happen to them,” Lois would say in response.

Just a few months after she retired, Lois was diagnosed with ALS in February 2017 – on Valentine’s Day.

Who would’ve thought?

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Caregiver reflects on ALS journey, impact of donations

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When Kristin Sedate’s father was diagnosed with ALS in 2014, she stepped in to serve as one of his primary caregivers. Read her story about their journey through ALS and what your donations meant to their family. 

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Scientists Take Promising First Step in Accelerating ALS Diagnosis

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The Neurological Clinical Research Institute has recently made significant strides in working toward diagnosing ALS earlier and measuring the progression of the disease. The NCRI imaging team conducted its first successful PET imaging scan of a person living with ALS to measure inflammation in the brain, which is a promising first step in the TRACK ALS imaging biomarker study.

Dr. Nazem Atassi and his team at Massachusetts General Hospital developed a tracer that binds to support cells of the nervous system in the brain. The tracer serves as a marker of inflammation and tracks changes in the cells of the nervous system. The PET imaging scans measure inflammation in the central nervous system, where cells move to the already damaged area of the brain and worsen damage by further harming neurons.

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Why We Need the ALS Ice Bucket Challenge

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Trece Porrata - Why We Need the ALS Ice Bucket ChallengeGuest post by Trece Porrata, a patient with ALS

My husband was challenged to do the Ice Bucket Challenge last year when we were visiting friends in Port Aransas with our kids. As he was filling the bucket with ice, he jokingly asked me, “Wait, what am I doing this for?” I replied, “ALS, silly!” realizing that I didn’t actually know what it was.

Quickly, I went into the house to do some research about ALS. I ended up on the ALS Association of Texas website, reading through ALS symptoms. As I went down the list — muscle weakness, fine motor control issues — I noticed that I had been experiencing some of those same symptoms lately. But I didn’t think much of it at the time — after all, ALS is a man’s disease, right? And we had an Ice Bucket Challenge to complete. I went back outside to tell my husband what ALS was, and moments later I was laughing at his reaction to the freezing water, handing them towels and forgetting all about my symptoms.

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