LAS VEGAS – For Teresa Thurtle, serving her country is just what she does.
The Air Force veteran retired as a Technical Sergeant, but she’s never stopped fighting to help other veterans, especially when it comes to ALS, or amyotrophic lateral sclerosis, which many know as Lou Gehrig’s disease.
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One reason is, it’s pretty much just a matter of time until Thurtle gets the disease herself. Not only does she have a strong family history of ALS, she’s tested positive for carrying the genes for the disease; even without the familial connection, being a veteran, she is twice as likely to develop the disease.
“My grandma was diagnosed in the 80s. She lived with ALS for about three years, and she died on her 49th birthday,” said Thurtle. “And fast forward to 2011 when my father was diagnosed with ALS. And from proper diagnosis to death, he lived nine months. And he also died at the age of 49. So it’s very odd how they both died at around that age, but lived with ALS at different lengths.”
Thurtle said by the time her father, Robert Thurtle, was diagnosed, it’s possible he could have been living with the disease longer than they thought, because it’s frequently misdiagnosed.
“So people could be living with ALS longer than we are aware because you just think it’s something else completely. My grandma, they thought it was diabetes at first, and then my dad, they thought it was rolling heart attacks. So the misdiagnosis was clearly there,” said Thurtle. “I was very young with my grandma. But I know it started in her feet, she was just stumbling in what we call drop foot, which I now know is just kind of stumbling and unable to walk. So that’s why they kind of thought it was the diabetes. And then my father, it actually started in his chest and so they thought he was having rolling heart attacks, kind of having trouble breathing, talking and he started stumbling as well. But also he had quite a few knee surgeries, so we just kind of thought it was his knees giving out because he tore a few ACLs. But for him, it was mostly in his chest and just, you know, starting to choke on food and like choke on his words.”
When Thurtle’s grandmother, Dianna Thurtle-Shuster, died in 1989-- the family was told ALS was not genetic. That’s because the first gene associated with ALS was not discovered until 1993. Diagnosing Dianna was more difficult because of that. But when Robert’s initial symptoms didn’t go away, he told his physicians his mother had passed from the disease.
“And she goes, ‘I think you should be genetically tested.’ So she sent him to a hospital in California, and it was there that it was confirmed he carried the gene,” said Thurtle.
Robert died in 2011 while Thurtle was deployed. After his death, Thurtle and her three brothers debated getting tested to see if they carry the gene, as well.
“We had all decided that we were going to get tested as all of us or none of us, just because who wants to live with one knowing and one not knowing.” said Thurtle.
They waited a few years because her youngest brother was only 15 at the time of Robert’s death, but eventually, they got their answers.
“Me and two of my brothers carry the gene, and then my baby brother does not,” said Thurtle. “We have the same parents, same background. So there’s no difference. We all grew up the same way.”
What is ALS?
According to the ALS Association, ALS is a fatal progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. A simple way of putting it is motor neurons that send messages from the brain to muscles in the body start to break down, which means the brain can no longer control voluntary muscle movement. As that progresses, patients may lose the ability to move, speak, eat or even breathe.
Most people who develop ALS do so between the ages of 40 and 70, although some younger people have documented cases as well. Most patients live between two and five years from the time of diagnosis, although in some cases, people have survived longer.
That is likely because the disease does not affect everyone the same way, much like Robert and Dianna had different symptoms. Some people may be weaker in some areas than others, for example, someone who cannot swallow, but can still walk and drive. The order in and speed at which functions begin to deteriorate can vary from from person to person, as well.
Some early-onset symptoms can be things like having trouble with fine motor tasks like writing, difficulty gripping objects, losing balance, tripping frequently, trouble with articulation, difficulty swallowing or chewing, muscle twitching and atrophy.
These days, there some FDA-approved drugs that can help slow disease progression or treat some symptoms, but there is no cure and no currently available drugs that are proven to stop or reverse disease progression.
As far as developing the disease, in cases like the Thurtles’, it is considered familial ALS, where the mutated gene is passed down. This accounts for about 10% of cases. Children have a 50% of inheriting that gene when a parent has it.
But for 90% of cases, there’s no known family connection or gene mutation, meaning really anyone can get the disease, anytime.
Why are veterans more likely to be affected by ALS?
In short, we don’t know. We do know veterans are up to two times more likely to develop ALS.
But that’s one of the things Thurtle is fighting to find out.
“As soon as my father was diagnosed, and ultimately passed away, I immediately just got involved. So I raise money for ALS research for the ALS Therapy Development Institute. So I do that it’s a lot of fundraising effort, but I’m also an advocate. And I work a lot on Capitol Hill to get continued funding for Department of Defense ALS research program. And when I first started advocating back in 2011, we were asking for $7 million, and now we get $40 million,” said Thurtle “So it goes to show that even Congress is taking is taking the military connection to ALS seriously. So that’s a relief to hear. So I do a lot of that, as well as advocating for patient care and patient advocacy.”
Right now, there’s no clear answers as to why that connection between military service and ALS exists. It does not appear to be linked to service in a particular branch, era in which they served or whether service was during a time of peace or at war.
“We don’t know if it’s environmental factors with the military or job-related and to what the military is attributing to ALS. So further research will show that and that’s why we keep advocating for continued funding from the DOD to research that,” said Thurtle. “I mean, you know, there’s a few theories, is it related to pilots and association when they fly? Is it related to burn pits? We’re finding a lot of Desert Storm servicemembers are developing ALS. And I think we’re starting to see that from the war on terrorism in Iraq and Afghanistan. So it’s not quite sure yet. I mean, honestly, it can really be anything. But for me personally, I do think it increases my probability.”
The good news is, the Department of Veterans Affairs (VA) does consider ALS a presumptive service connection for military members that served at least 90 days of continuous active duty since 2008. Their families and survivors may also be eligible for benefits, including monthly compensation, regardless of when their loved one died because of the disease. The ALS Association has created a page outlining different benefits and grants that may be available to veterans with ALS that can be found here.
What resources are out there for people or families living with ALS?
For Thurtle, she’s not currently displaying any symptoms of the disease. So her focus is on helping those who are currently fighting the disease.
“We’re fighting for them. We actually have a Veteran Affairs advocacy group that I work with. We’re all veteran-associated or wife of a veteran who has passed or has ALS, that we’re fighting for them and that we’re working with the VA to to make it better for veterans and military members who develop ALS,” said Thurtle.
Because some of the disease’s symptoms can seem similar to other diseases, like Multiple Sclerosis and others, Thurtle recommends people get a second opinion if they’re diagnosed or even suspect they may have ALS but have been misdiagnosed. You have to advocate for yourself, do your own research, if you don’t think what your doctor is saying is accurate, find one that will listen.
“Go get a second opinion. I know that it’s really difficult for for some insurances and some people, but definitely go get a second opinion,” said Thurtle. “Doctors want to stay on the positive side. Like, they want to say it’s ALS as a last resort. And understandably, no one wants to get misdiagnosed with a terminally ill disease only for it to be something else.”
Thurtle also recommends getting connected with an advocacy group. IAmALS.org has several support groups, a peer support initiative, plus they also have information on clinical research and trials, interactive maps to find ALS clinics near you and more, all of which can be found here. Caregivers and loved ones can also find support there. The ALS Association has a Florida Chapter you can check out here.
If you’d like to find out more about treatments, research, and even help donate to fund treatments, the ALS Therapy Development Institute has resources you can access here.
Thurtle said one of the most unfortunate things about the disease is there’s no survivors, so sometimes fundraising efforts end when a loved one with ALS dies and then moves on.
But she plans to keep fighting, especially for those who can’t, for as long as she’s able.
“I’m still able and willing to go to Washington, D.C. and advocate for those who can’t go and take their stories to their elected officials, and help push things forward. I’m not going anywhere until we have a cure,” said Thurtle. “It’s important. And you know, it’s twofold for me. First of all, for my personal family, and myself and my brothers. But second of all, for my military family. I don’t want to see anybody that I served with have to go through what my family has gone through. But also I think everyone should have a philanthropy in their life. And this is definitely my calling. And it takes a lot. I mean, every time someone passes away, it eats a piece of your heart. But it makes me fight harder every year.”