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Jeremy Van Tress was diagnosed with ALS the week before his sixth child was born. A military veteran and long-distance runner, Jeremy initially decided against any interventions that would prolong his life. But after pursuing his bucket list and spending time with his family, Jeremy realized that “there was still life to be lived.”
Jeremy got a tracheotomy while studying for his PhD in social work. He later founded a nonprofit organization to provide telehealth counseling for people living with ALS. |
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"Never stop challenging yourself. Keep striving for small little goals,
whatever they may be, to keep you purposeful and pursuing something in life."
whatever they may be, to keep you purposeful and pursuing something in life."
What was your life like before ALS?
After getting my master’s degree in social work, I had started a job as a child welfare worker, but was laid off during the great recession. That propelled my decision to join the army. I completed basic training and an officer leadership course, and then jumped out of airplanes. I served from 2009 to 2015 on active duty and then exited to pursue medical school.
By the time I was in medical school, we had four kids and I was a family guy, raising kids and going to church, and trying to help other people the best I could. Life didn't pan out the way I envisioned it. In most cases, I'd say life seldom does. It takes twists and turns and everyone has to adjust in their own way. Life was actually really good before ALS.
By the time I was in medical school, we had four kids and I was a family guy, raising kids and going to church, and trying to help other people the best I could. Life didn't pan out the way I envisioned it. In most cases, I'd say life seldom does. It takes twists and turns and everyone has to adjust in their own way. Life was actually really good before ALS.
When did you notice your first symptoms?
We think my first symptoms actually started when I was deployed in Afghanistan. I was running 10 to 15 miles every morning when I started having problems with excessive gagging and coughing, and mild speech difficulty. My ear, nose, and throat muscles were really strained. I thought it was the dust in Afghanistan.
But I got back in 2014 and those symptoms just never went away. In 2015, I started experiencing some mild weakness in my left hand. I was having a hard time turning the tops of jars and little things like that.
I chalked it up to chronic fatigue. I thought I was just really tired. And then in 2016 I had symptoms that started to make me wonder what was really going on. I started to fall when I was running and I was a lot less coordinated in my stride and muscle movements, which was very uncharacteristic.
On the last run that I ever did in late September 2016, I was running on a trail, and one mile into it, I felt abnormally fatigued in my respiratory system, uncoordinated, and not able to navigate the trail. So I turned back and eventually had to stop. Walking back, I was really demoralized and didn’t know what was going on.
But I got back in 2014 and those symptoms just never went away. In 2015, I started experiencing some mild weakness in my left hand. I was having a hard time turning the tops of jars and little things like that.
I chalked it up to chronic fatigue. I thought I was just really tired. And then in 2016 I had symptoms that started to make me wonder what was really going on. I started to fall when I was running and I was a lot less coordinated in my stride and muscle movements, which was very uncharacteristic.
On the last run that I ever did in late September 2016, I was running on a trail, and one mile into it, I felt abnormally fatigued in my respiratory system, uncoordinated, and not able to navigate the trail. So I turned back and eventually had to stop. Walking back, I was really demoralized and didn’t know what was going on.
What was your diagnosis process like?
A primary care physician noticed my reflexes were off and some other tightness was going on, so they referred me to a general neurologist. The general neurologist, after doing a two-hour examination, told me that they knew I had some sort of neuromuscular disease, but they didn't know what it was. They referred me to a neuromuscular specialist.
I saw two physicians at two ALS clinics concurrently to get diagnosed a little bit quicker. They shared medical records. I was diagnosed within two months of seeing my general neurologist. So they caught on to it pretty quickly.
I saw two physicians at two ALS clinics concurrently to get diagnosed a little bit quicker. They shared medical records. I was diagnosed within two months of seeing my general neurologist. So they caught on to it pretty quickly.
How did you take the news?
When the neurologist diagnosed me with definite ALS, that's when I kind of balled in the room and everything came out. My wife and I were on different timetables. I think I was going through the grieving process earlier because I had been dealing directly with the disease for a while.
At the time when I was diagnosed, I think that she didn't really hear the diagnosis. On the drive home she said, "But I thought the neurologist said this." And I said, "No, the neurologist didn't say that, she said this."
At the time when I was diagnosed, I think that she didn't really hear the diagnosis. On the drive home she said, "But I thought the neurologist said this." And I said, "No, the neurologist didn't say that, she said this."
How did you cope and start moving forward again?
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For a few months, I was pretty distraught. I accepted that I had the disease, but I was kind of in the angry phase.
Four days after I was diagnosed, we had our sixth kiddo. My wife was working at the time and I had stopped working right after I was diagnosed. |
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And so I had that time to kind of experience that dichotomy of emotion—that extreme joy of having my newborn and then anger and uncertainty with my ALS diagnosis. My sixth kiddo really centered me a lot as I tried to deal with those two emotions. I'd spend a lot of time just cuddling with him, rocking him in the rocking chair.
After I started to grapple with those emotions and make sense of them and move past those emotions, I took another nine months or so just to live life with my family. That really helped me cope.
I did as much of my bucket list as I could. I jumped out of an airplane one last time, a tandem free fall jump. I've always loved jumping out of airplanes. It was actually a big reunion because a lot of my friends came from all over to watch it and to be part of it.
And then we went on several cross country road trips that gave us a lot of really good quality family time and we got to see places and things that I'd never seen. The Team Gleason Foundation paid for a dream vacation to go to Disney World as a family. Just spending time with family really helped.
And then I went through another phase where I was like, "Geez, I'm not really ready to retire." That was the other awakening as I was transitioning into this retirement phase. I'm still so young, I don't feel ready for this.
And so I told my wife, "Hey, now I'm thinking about taking a couple of courses to kind of keep my mind sharp and to keep me busy and keep me productive." And she said, "Well, you've always wanted to be a doctor, so you might as well go for your PhD, right?" I was really taken aback by that. I didn't expect that reaction at all.
So I decided to pursue my PhD, which in itself was a huge blessing because I was in the toughest part of the disease when I had gotten mono and strep throat at the same time, which seemed to exacerbate my respiratory decline quite significantly.
Within the first weeks of starting my PhD, I was in the emergency room with acute respiratory failure. And by that time I had decided to get a tracheostomy. So there I was in the ICU, getting my tracheostomy and recovering while I had my doctoral program in full swing.
Hours after my surgery, I was working on my assignments again. I decided not to take a break because I've always been the type of person that plowed through adversity and worked and stayed productive and busy.
That really got me through those hardest moments. So I worked on my PhD for almost three years. It was a really empowering experience to do the program while I was going through all of this transition. So that really helped me cope, too.
After I started to grapple with those emotions and make sense of them and move past those emotions, I took another nine months or so just to live life with my family. That really helped me cope.
I did as much of my bucket list as I could. I jumped out of an airplane one last time, a tandem free fall jump. I've always loved jumping out of airplanes. It was actually a big reunion because a lot of my friends came from all over to watch it and to be part of it.
And then we went on several cross country road trips that gave us a lot of really good quality family time and we got to see places and things that I'd never seen. The Team Gleason Foundation paid for a dream vacation to go to Disney World as a family. Just spending time with family really helped.
And then I went through another phase where I was like, "Geez, I'm not really ready to retire." That was the other awakening as I was transitioning into this retirement phase. I'm still so young, I don't feel ready for this.
And so I told my wife, "Hey, now I'm thinking about taking a couple of courses to kind of keep my mind sharp and to keep me busy and keep me productive." And she said, "Well, you've always wanted to be a doctor, so you might as well go for your PhD, right?" I was really taken aback by that. I didn't expect that reaction at all.
So I decided to pursue my PhD, which in itself was a huge blessing because I was in the toughest part of the disease when I had gotten mono and strep throat at the same time, which seemed to exacerbate my respiratory decline quite significantly.
Within the first weeks of starting my PhD, I was in the emergency room with acute respiratory failure. And by that time I had decided to get a tracheostomy. So there I was in the ICU, getting my tracheostomy and recovering while I had my doctoral program in full swing.
Hours after my surgery, I was working on my assignments again. I decided not to take a break because I've always been the type of person that plowed through adversity and worked and stayed productive and busy.
That really got me through those hardest moments. So I worked on my PhD for almost three years. It was a really empowering experience to do the program while I was going through all of this transition. So that really helped me cope, too.
How did you decide to get a tracheotomy?
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Early in my diagnosis I chose not to have life-sustaining treatments. I was very adamant. I didn't want to have any clinical intervention to prolong my life. And as I began to experience life with my family in the aftermath of my diagnosis, I realized that for me, there was still life to be lived.
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So I changed my decision about that. I kind of did a complete 180 and decided, "Hey, actually I do want life-sustaining treatments pretty much in all circumstances, except for if I, for some reason, become unresponsive to stimulus and brain cognition." So I did a complete 180 within three to six months and changed a lot of those.
Now, again, who's to say three or four years from now I might change that again depending on the circumstances that I find myself in? So I think we have to be flexible and malleable to the conditions that we find ourselves in and be willing to consider all possibilities in life.
I would strongly recommend that people be willing to consider all possibilities. One decision now doesn't necessarily equate to the same decision six months, a year, or two years from now.
Now, again, who's to say three or four years from now I might change that again depending on the circumstances that I find myself in? So I think we have to be flexible and malleable to the conditions that we find ourselves in and be willing to consider all possibilities in life.
I would strongly recommend that people be willing to consider all possibilities. One decision now doesn't necessarily equate to the same decision six months, a year, or two years from now.
Tell us about your nonprofit, Smile Inside.
I developed my nonprofit while I was in my PhD program. My dissertation focused on ALS patients, socio-ecological resilience, self-determination, and decision-making for life-sustaining treatments. I got into private practice and provided adaptive social work services via telehealth and Zoom.
That really kind of propelled my way into volunteering my time. I had a pension through the army that was providing for my family. And I wanted to give back to people with ALS who just don't have those resources. And that's really what prompted me to start Smile Inside and to, in my own way, give back and provide free clinical social work services to people who are really struggling.
That really kind of propelled my way into volunteering my time. I had a pension through the army that was providing for my family. And I wanted to give back to people with ALS who just don't have those resources. And that's really what prompted me to start Smile Inside and to, in my own way, give back and provide free clinical social work services to people who are really struggling.
What advice do you give to people living with ALS?
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Number one, give yourself a chance to feel whatever you feel after being diagnosed. There's a couple of components to that. There's the actual feelings—letting them manifest and letting them in and confronting those feelings. But then there's also time.
Time is an incredible facet of life that we often overlook. And with time comes patience and a willingness to submit yourself to the elements of life, so to speak. |
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I found that just giving myself room to feel and time to experience whatever this disease will make me experience has really set me on a path to just confront the disease instead of letting the disease have power over me. I've confronted it and taken whatever power I still have to beat the disease in my own way, I guess.
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Everybody does that uniquely. No one's going to do it in my exact way. I think that everyone has to find their own way to go about doing that.
And then I would say to never stop challenging yourself, whether it be lifting your hands to do a task or something as great as continuing to try to keep walking—under safe conditions, obviously. |
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Keep striving for small little goals, whatever they may be, just to keep you purposeful and to keep you pursuing something in life. That's made all the difference for me, just pursuing hard things in my life.
How have you not let ALS take over your entire life?
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I think that flexibility really has to come in where you can accept and adapt, accept and adapt. If ALS takes something from you, adapt and give yourself something back in return. That's what I've found to be super helpful.
ALS took running from me, but it didn't take my ability to be a social worker away. And so I adapted and found ways to continue being a social worker. |
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And the same thing with pursuing my doctorate and early on pursuing my bucket list and all of those things that just help you be flexible. So accepting what you can't control and adapting and finding ways to take advantage of the things that you can control.
You regained your speech recently. Can you tell us about that?
Yeah. I had tried to do leak speech several times after my tracheostomy and it never clicked. I always found it very uncomfortable and super exhausting. And it is really exhausting. There are times when I do have to kind of check out for a few hours, take a break and recenter myself and find another layer of energy.
I worked on it for a couple of days and got to a point where I felt more comfortable with it. It's still uncomfortable and exhausting, but I'm able to do it enough to make it work.
Note: The vast majority of people living with ALS are unable to speak again after having a tracheotomy.
I worked on it for a couple of days and got to a point where I felt more comfortable with it. It's still uncomfortable and exhausting, but I'm able to do it enough to make it work.
Note: The vast majority of people living with ALS are unable to speak again after having a tracheotomy.
