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Welcome to Connecting ALS. On today's episode we reflect on the connection between ALS and military service.
Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
This transcript was exported on Nov 09, 2022 - view latest version here.
Gerald McCormick:
Yeah. And we have a number of states with really big budget surpluses. This is the kind of thing that gets people's attention. If they think they can really move the needle just a little bit, they're more likely to do it. And if they know someone who has got ALS it helps, it personalizes it.
Jeremy Holden:
Hello everyone and welcome to Connecting ALS. I am your host Jeremy Holden. According to multiple studies published over the years, people who served in the military are more likely to develop ALS than people with no history of military service. Because of that, ALS was deemed a service connected disease in 2008. Research into the connection between military service and ALS grew out of studies of veterans of the Persian Gulf War in 1990 and 1991. In a September 2003 issue of neurology researchers published a study on the medical records of 2.5 million personnel who served in the Persian Gulf War and found that those who served in that war were nearly twice as likely to develop ALS than those who did not serve in the Gulf. The risk was higher among those who served in the Army and Air Force.
A second study in the same issue found similar results on the increased risk of ALS among Gulf War veterans. And since that study looked at Gulf War veterans who were younger than 45, the researchers concluded that the incidents rate among Gulf War veterans could increase as they get older. Subsequent studies extended the population to include people who served in the military during previous wars, and those who served during peace time leading to the finding that regardless of when or where someone served, military veterans are at a higher risk of developing ALS. But why? Here researchers have as many questions as they have answers. According to a study of the connection between ALS and the military commissioned by the ALS Association, some evidence suggests that veterans with known exposure to certain toxic elements like burning agents used in warfare are at an increased risk. Exposure to CTE and traumatic brain injury have also been studied as potential explanation.
So as we honor our country's veterans this Veteran's Day, it's a good moment to reflect on the connection between military service and ALS. This from the conclusion of the ALS and military service White paper referenced earlier. Since 2001, ALS has taken the lives of more veterans than the wars in Iraq and Afghanistan combined. Although many questions remain unanswered, scientific evidence strongly demonstrates that military service increases a person's risk of ALS. Additional studies are needed to find factors that may be influencing this risk and to investigate how these factors can be translated into preventative and or treatment strategies. As we work to address the risk of ALS and military veterans, we must bear in mind that resources also are needed to care for and serve those living with the disease today to help improve quality of life, to provide access to necessary medical care, and to assist people with ALS in meeting the day to day challenges the disease has imposed on their lives. And we will share a link to that full report in this episode's show notes.
My guest this week is Gerald McCormick. Gerald is a Gulf War veteran and former majority leader in the Tennessee general assembly, and he is currently a consultant for The Ingram Group. Earlier this year he was diagnosed with ALS. Gerald, thanks so much for being with us this week on Connecting ALS.
Gerald McCormick:
Well, thanks for having me. Been looking forward to it.
Jeremy Holden:
Why don't we get started with just introducing yourself to listeners and letting us know about your connection to ALS.
Gerald McCormick:
Yeah. Well, Gerald McCormick live in Nashville, Tennessee, formerly was in the state legislature here and was the house majority leader for six years. Retired from the legislature in 2018. In I guess it was 2021, sort of early in the year I developed a limp in my right leg and eventually went and had it checked out and then checked out again and checked out again over and over again. As often happens with ALS, they have to decide it's not everything else before they get all the way to ALS. So went in for the, I think they call it an EMG where they stick needles all in you and check your nerve reactions and that kind of thing. And finally they came to the conclusion that it was ALS and I think that was in February of this year. So it's been a little less than a year since we've gotten the diagnosis.
Jeremy Holden:
Prior to being in the legislature in Tennessee, you served in the first Gulf War.
Gerald McCormick:
Yeah.
Jeremy Holden:
You're a military veteran. We're bringing this conversation to listeners on Veterans Day. So happy Veterans Day and thank you for your service. But when were you made aware of the connection that ALS was a service related disease and that veterans have a higher likelihood of being diagnosed with ALS?
Gerald McCormick:
Well, I think I've read over the years that Gulf War veterans were more likely to have a number of different problems. And I'm like everyone else. That's something that happens to other people and not to me or my family. But of course after I got the diagnosis, I looked into it and I want to say it was somewhere around four or five times more likely that you get ALS if you had served in the Middle East, particularly in the first Gulf War in the military. There were the burn pits. There were environmental issues with, I think Saddam Hussein burned a lot of oil wells on his way North. And so there were environmental hazards that they think had something to do with it. Now that's over 30 years ago, maybe it was something else. But the military and the Veterans Administration automatically assumes, it got called a presumption and they presume that that was the cause of it. And whether it was or not, I don't know. Never had any family history though. So I think there's a good chance that that's what it was.
Jeremy Holden:
And we'll share a link in the show notes to the report that the ALS Association put together on that higher likelihood and the connection between military service and ALS. So diagnosed in February. How did you respond? How have you engaged, I guess, in the fight against ALS? How did your family respond? Talk to me about what the last couple months have been like.
Gerald McCormick:
Well, of course we were shocked and didn't really believe it. I went to three or four different neurologists and finally was convinced by the last one at Vanderbilt, they have a pretty extensive program dealing with ALS. And so after we got over the initial shock, then I started talking to other people who had either had ALS or have it, as you know you never get rid of it or have friends or family that have done it. I had a fraternity brother who went through this about 10 years ago. A couple of guys that I went to high school with have been through this. And so I've talked to their family members and it just hits all different people in different ways. So we decided that we're just going to deal with it.
And I had one that was sort of humorous, guy in Chattanooga who used to run the newspaper down there had ALS. I was told that he worked in his wheelchair until really the weekend before he passed away. But when he first got it, people would go to him and say, Oh my God, I'm so sorry that you've got ALS and this is just tragic. And he would tell them, Well, you're going to die too. I just know what I'm going to die of. And he kept telling people that and getting them to laugh about it, which is a good attitude to take. You can either laugh or you can cry and you're probably going to do a little of both. But it is true that we're all mortal. I'm 60 years old, I'm not 30 with a new baby at home. I've had a lot of good experiences and expect to have more. I've already out survived some of the people that I know who have had it and I'm still walking and still healthy going to work every day and those kinds of things.
So I'm thankful for that and thankful for the chance to deal with these issues while I know what's going on. My father died in a car wreck. It was horribly shocking to all of us and unexpected and we were unprepared and at least this way you get a chance to prepare and you hope it's a long preparation period. I met a lady not long ago who's had ALS for 15 years and was still walking and talking and everything else. It's not likely to go on that long, but there's a lot left to do and time left to do it. And I'm fortunate that I'm able to still get around and do those things.
Jeremy Holden:
You mentioned going to work, still going to work every day at work. You work in the public policy arena. One of the key ways that the fight against ALS or the search for treatments and cures and making it a livable disease, a lot of that is in the public policy arena and advocacy. What have you learned about some of the public policy issues or initiatives that are out there that could help, whether it's expanding access to care or funding for research?
Gerald McCormick:
Yeah, that's a good question. And I remember it was funny or coincidental, Facebook memories that pop up. And right after I was diagnosed, one popped up and it was on the floor of the House of Representatives in Tennessee. In 2015, we got a visit from a guy named Tim Shaw who used to be a linebacker for the Tennessee Titans. And he came in and after I saw the Facebook memory pop up, I recalled it. And he had come in and had just been diagnosed with ALS and this is a guy just loaded down with muscles and literally an NFL linebacker. And he talked to us about it and about some of the gains that have been made and I recall that. So anyway, fast forwarding, he's actually, he's still alive. He doesn't look like an NFL linebacker anymore. He's had the atrophy in his muscles and everything, but he's still going and still very active in all this.
We had a walk, the walk that I think is the national event in the four big cities in Tennessee. I went to the Nashville one. Tim Shaw was there in his wheelchair and he gave a little speech through his voice recognition system. And so he's still providing that. Now Vanderbilt does have a program for ALS patients. They have a ALS clinic and actually it's again this Friday, which I'm going to go to it and they have 10 or 12 different doctors from different areas or physical therapists and people like that. So rather than make appointments all over town and take the whole month to do it, you can go in one day and do it. But getting back to the public policy, I do have a point here, Vanderbilt, a few years ago, the Tennessee legislature did a matching gift to Vanderbilt to help with their ALS efforts.
Having been the House majority leader and also the last two years I was in the legislature, I was chairman of the budget committee that finalized budgets. I am in a position to know the people and know the process of how to get money appropriated through the state. And the state of Tennessee right now is fortunate to have a big budget surplus. And certainly I'll be with my old colleagues and explaining to them the importance of the ALS efforts at Vanderbilt and hopefully we'll have a good chance of getting them to put some money in the pot.
Jeremy Holden:
It's an important point and one we've touched on periodically here. So often I get stuck in this framework of thinking of advocacy as something that happens in Washington DC with Congress and executive bodies. Yeah. State based policy is there for the taking too and it's an important component of advocacy.
Gerald McCormick:
Yeah. And we have a number of states with really big budget surpluses and this is the kind of thing that gets people's attention. And if they think they can really move the needle just a little bit, they're more likely to do it. And if they know someone who has got ALS it helps, it personalizes it. So there's something positive that comes out of this in different ways. And I was telling somebody the other day at the walk, Use me while you got me because I was in a pretty good position to be helpful and should be for a while, and certainly want to do that and looking forward to it. And maybe we can get this thing fixed before my four year old granddaughter gets old enough so that she's at risk of this type thing.
Jeremy Holden:
One of the public policy initiatives at the ALS Association's public policy team is pushing right now is to increase support in Congress for the Justice for ALS Veterans Act. We've talked about that on this program before, but have you had an opportunity to get up to speed on that bill and welcome your thoughts on that?
Gerald McCormick:
How I think I could be helpful is I've got a number of former colleagues at the state level who are now in Congress. Dr. Mark Green is my congressman right now. He served in the legislature in Tennessee. Tim Burchett from the second district of Tennessee out of Knoxville, he's a friend and he serves in Congress and it probably shouldn't work this way, but it does. If they know people who are dealing with this, then they're more likely to pay a little attention to it. And I could be useful in that way. Bill Hagerty's a US senator who is someone that I worked with in state government before he became a US Senator. And those kinds of relationships, I think I can parlay into hopefully some support at the national level too and willing to do that however, the ALS Association thinks it's the best way to do it. I know you guys have federal lobbyists in that kind of thing, and certainly plug me in wherever you think it'd be helpful.
Jeremy Holden:
No, be careful what you offer up. Gerald, you mentioned getting this thing fixed. Thinking about the fight and thinking about the search for treatments and cures and making ALS a livable disease, what have you seen that inspires hope that we're on the right track and we're moving in the right direction and maybe making some progress along the way?
Gerald McCormick:
That's a good question. I may not give you the right answer on this one.
Jeremy Holden:
I don't think there is a right answer.
Gerald McCormick:
Something that has kind of struck me is how little doctors know about this. Seems like the times I've gone in and asked for advice, they're taking notes and asking me questions more than answering my questions, which to me means they, well, I mean, they don't know what causes it. They don't know how to stop it. They're desperately trying to figure it out. And I think some of the best minds in the country are working on it. So there's got to be a breakthrough at some point. The discouraging part is, which is really encouraging and discouraging. So few people have it, that it's not like cancer and it's mostly among older people. There are examples of much younger people who have gotten a disease, but it's more older people. It's not that many people. So that makes it more difficult to come up with a consensus that we've really got to do a moonshot type thing and try to beat this thing.
The one thing, it's odd that when I say the thing we've got going for us, it's also what's horrible about it, but everyone can sort of imagine how horrible it would be to be paralyzed. And so the horror of the disease might work in our favor as far as getting support to try to figure out how to manage it and eradicate it. It's funny and it's not funny at the same time, but oftentimes the more horrible it is, the more likely it is that you might be able to fix it. And there are a lot of ironies in dealing with ALS.
Jeremy Holden:
You mentioned the power of the personal and then meeting with lawmakers, appropriators, whoever needs to be met, and hearing personal stories, seeing the progression, it's something that we've heard from lawmakers, from opinion leaders that it's very powerful. So I think you touched on something important there. Gerald, I want to be sensitive to your time and respectful of your time. Any closing thoughts about the journey that you're on, the search for treatments and a cure and kind of what's on the horizon?
Gerald McCormick:
Well, one day we'd like to see a cure. Obviously everyone would, and hopefully at some point someone's going to break through and think, Wow, this is how it happens. Here's how we can stop it. And they'll be rich and famous and I'll be glad for them. I realize that that's probably not going to happen in my lifetime, but if it happens for the next generation, that would be wonderful. The other thing is, is there are, I call it whistling past the graveyard, but there are things that it helps a person with, helps you be more appreciative, helps you stop and pay attention to things instead of just getting through a work day. You understand that there are more important things than just going to work every day, although that's still important. And so there are blessings that are associated with it. It's not just sit around and be depressed.
It's get up every day and go live your life. We're going to take some trips and do some things that we probably, we've always put it off and now we're not going to put it off, we're going to do it. I would say one thing that really concerns me, and I'm very fortunate, my wife and I work very hard all our life, and we are relatively well off financially, and I talk on the phone for a living and do Zoom calls. So I'm fortunate from that standpoint, and I don't have to get out, but someone who works at a hardware store or a restaurant and is on their feet all day and they don't make that much money and maybe they don't have good health insurance like I do. The Veteran's Administration, the VA has been wonderful to deal with. I'm a veteran, I get a disability payment from them.
They've also are going to do things like retrofit our home for someone. It's harder to walk and I can't walk and get around like I used to. They're going to give me money to modify or purchase a vehicle. So there are things, advantages that I have. It's still going to be a miserable process and I know that, but at least I don't have the added stress of knowing I'm going to be bankrupt in a few months when I can't walk or whatever the case may be. And I think we really need to concentrate on helping those that don't have the ability to take care of themselves. My wife also works and has a good job and makes a relatively large amount of money. And we're so fortunate from that standpoint, and I just can't imagine if I work construction for a living and how that would affect my family and my ability to take care of my family. So that's something we need to keep in mind and hopefully focus a lot of our efforts on helping people who really can't help themselves.
Jeremy Holden:
I want to thank my guest this week, Gerald McCormick, along with all the veterans out there for their service. If you like this episode, share it with a friend. And while you're at it, rate and review Connecting ALS wherever you listen to podcasts. It's a great way for us to connect with more listeners. Our production partner for the series is CitizenRacecar. Post production by Alex Brouwer, production management by Gabriela Montequin, supervised by David Hoffman. That's going to do it for this week. Thanks for tuning in. We'll connect with you again soon.
ConnectingALS_111022_Ready2_YouTube (Completed 11/08/22)
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