Juan, an independent medical technician in the U.S. Air Force and PVA Texas chapter member, was diagnosed with ALS in October of 2015. Over the past seven years, he and his wife Meg, who serves as his caregiver, have become passionate advocates for ALS patients and their families. They enjoy meeting others who are engaged in the fight against ALS. They are both grateful for the benefits Juan receives as a Veteran, and for PVA’s support throughout the process.
The diagnosis has changed Juan for the better, in some ways. “Believe it or not, I am a lifelong introvert, but when ALS struck and I met others living with it, they inspired me to shed my fears of public engagement and public speaking,” he says. “I have put myself out there. I actually do some stand-up comedy and all the material is regarding living with ALS.”
Such a difficult diagnosis affects the whole family, of course. Juan and Meg have four children, three of whom are siblings they adopted. They are childhood sweethearts – they began dating at 16 and got married at age 21, 22.
Sometimes people say, “Oh my God, you've been married forever,” says Meg. "I'm like, ‘Yeah, I know. I still like him.’”
Meg worked for many years in the military, where her specialty was HR. She faced a lot of challenges wrangling the branches together and having to consolidate military and civilian personnel systems, learn city ordinances, travel, serve Generals, etc. She eventually recognized that she could no longer work at the Joint Base San Antonio, serve as Juan’s caregiver, and be an effective parent to four children – one of whom was deployed – at the same time. So she retired and became Juan’s caregiver, but is using some of that verve and determination she gained in her job to run a very cooperative and mindful household, where everyone acknowledges that they are only human. And there is certainly a lot of love.
They have been spending time with family and friends traveling around the country in an RV, and Juan writes about their experiences on a blog. In between it all there is some time at home, some stand-up comedy by Juan, some Bucket List adventures, and some harrowing moments in an RV on downtown city streets.
In the Fall, Juan looks forward to walking his only daughter down the aisle and having a father-daughter dance. Meg expects there may be various other adventures to come. “I was joking with my neighbor yesterday. She said, ‘I love that you guys travel and don't let things stop you.’ I told her you have to make changes, you can’t just do everything that you want to do. But then I said, ‘ I don't know – knowing my husband, he might find a place that you can bungee jump in your wheelchair or something.’
We spoke with the couple to get a little background on Juan’s story, and we wanted Meg’s perspective and advice on caring for a Veteran with ALS.
Did you enjoy serving in the Air Force?
Juan: I loved it. I like to explain to my civilian friends that I wasn't a doctor but I played one in the Air Force.
So what kind of work did you do in the service?
Juan: I was an independent duty medical technician (IDMT) - they only exist in the military. It's a small contingency of active duty individuals. On average, there's about 300-400 individuals that are performing this duty and basically it is like a junior position.
[From the Web]: An IDMT is the only enlisted health care provider who can give care in the absence of a licensed, privileged or credentialed health care provider at U.S. Air Force medical treatment facilities, host medical treatment facilities, remote or deployed sites.
How did the first symptoms present?
Meg: His first symptoms were tripping. And he noticed that he was having difficulty with grip strength. He just couldn't tighten things. Or he would play, run around and kick the ball with the kids, and he was tripping. Or he noticed the top of his shoes were dragging.
And he was really tired, always sleepy. He thinks he had it maybe two years prior to the first diagnosis in October of 2015.
Juan, did you become a member of Paralyzed Veterans of America after your diagnosis?
Juan: When I was diagnosed, I did reach out. It was one of the first resources that was offered to me. I was aware of PVA, due to the fact that my background is in healthcare management; and I had looked into potentially working for either the VA or PVA when I was looking for employment after retiring. I wasn't intimately familiar with everything PVA did, but I'm very well aware and informed now that they're an integral part of my care team. My local NSO does a fantastic job.
Meg: [The NSO] is really good, he's very available. He set Juan up with all his initial payments, and helped him with everything that he needed at the start, like his wheelchair. We have very good people who care, and they take their job seriously. We are treated very well here.
What prompted the RV adventures?
Meg: We knew we always wanted an RV when we retired. And we thought there was no way we were going to be able to do that, because we didn't know that they had RVs with modifications. But one day I found one with 6,000 miles on it and it had the RV lift.
Did you have to learn how to drive it?
Meg: The way they taught me how to drive that big old RV is took me to a parking lot and said, "Let's drive." And then they let me go and I drove home that night towing our van.
But I’ve driven in downtown San Francisco by mistake. I got stuck because it was the Golden State Warrior ticker tape parade. We were bumper to bumper and they kept diverting me, but I couldn't go the way they were telling me to go because of the street blockages. So I was literally in this large RV, trying to cross intersections downtown in Chinatown. It was not fun, for an hour and a half. And then when our truck’s brakes failed [that we were towing] I was in downtown Chicago, driving and parking. I was downtown Boston, and in New Jersey. We didn’t stop the trip we were on; we just figured it out. I wasn’t going to let it stop me.
And Juan I understand you’ve taken up writing?
Juan: Oh yeah. I have two blogs. My original blog where I post regularly, and the website is dedicated to our travels and ALS advocacy. I dedicated myself to writing about ALS on social media every day for the month of May, which is ALS Awareness Month. And it was so well received that I've done it every year and of course it grew into a blog. I'm hoping to compile all of my writing into a book in the near future and self-publish.
What would you like to share with other Veterans who have ALS?
Juan: I do a lot of work with the organization I Am ALS, and within that organization we have created a team of veterans, caregivers, and family living with ALS. And through that team we've actually created checklist documents and guidance with respect to what to do when a Veteran is diagnosed. PVA is very prominent within those products because of the effectiveness and experiences that they bring. And often we tell newly diagnosed veterans that their first stop, or first contact should be their local PVA rep.
Meg: I think there's a lot of people out there that just want to hide in the sand. And I feel like, ‘No, we need awareness.’ Juan and I are an open book. We’re willing to share the good, the bad, and the ugly.
Follow Juan’s journey at https://alstexasdad.com/
MEG’S ADVICE FOR CAREGIVERS
SET BOUNDARIES
One of the things I have to tell Juan is, ‘I know you have ALS and I know you love being an advocate, but that's not necessarily my life. I have to participate in it, but it's not my passion. I'm doing it for you. I want to help out, but I don't want it to consume me; I still have kids to raise, I still have friends I want to go and do things with; I still have my personal interests.’
I see a lot of caregivers have a lack of trust with other people in their house, or with their patients. But they need to explain to their patient, ‘I know you don't want anybody else to do this, but I need a break. I need to be able to step away for a reason. I need to be able to go to the grocery store.’ Going to the grocery store, for me, is my break.
TAKE CARE OF YOURSELF
ALS is terminal. And I understand caregivers who feel like it goes by so fast and they want to spend every moment with that person. But it wears them out – and you are not helpful to that person if you don't take care of yourself. I think it's important as a caregiver to know your limitations. And just being able to know when and where you need to go for help.
One morning I could not sleep – so the next night I told everybody I was going to bed early. Juan wasn’t ready to go to bed. I said, “All right then, it’s between the kids to put you to bed.’ And they don't necessarily do the exact same thing I do when I put him to bed. But the point of the matter is he can handle it for one day. Our daughter is his caregiver during the day, so that gives me some respite. And I socialize with my neighbors a lot, play bunco. All of that helps me mentally.
Some caregivers say, I just can't, I don't have anybody.’ But you’d be surprised that you might have people if you open up the door.
ASK FOR HELP – AND BE SPECIFIC
I've learned to realize that not only do I need the help, but people have the desire to help, and they just don't know how.
When people ask, "What is something that we can do for you?" you can say, “It would be really nice if y’all just came over and brought dinner,” for example. I tell people to keep a running list of things that you need or want to do. For example, you've been meaning to clean out your garage. You've been meaning to clean out your shed. You've been meaning to organize your pantry, or you need help organizing your drawers, because they're a mess. Make a list of those things, and when people offer to help you can present them with what you need. If you keep saying you don’t need help, they are going to shy away.
WHEN YOU’RE OVERWHELMED, TAKE ONE TASK AT A TIME
When I feel myself getting down to a level of, ‘I’m not a good mom, I’m not a good wife, I can self-wallow. And I have to find a way to come out of that. The way I do it is try to find two things I can do to check off my list. Even if it’s, ‘I took the car to get washed,’ or, ‘I decluttered the junk drawer today.’
SURROUND YOURSELF WITH SUPPORT
I tend not to vent to family. I vent to my neighbor, who is an OR nurse, two doors down. I vent to my friend whose husband used to work with Juan. I vent to my friend whose husband died of ALS. I keep my friends that I want to vent to small. It has helped having friends that are just there for you without judgment. All they want to do is give you help. You don’t have to tell the world your problems, but, have at least one person who can sit there and listen, or call you and ask, ‘Hey, are things better in your life today?’
ACCEPT THAT YOU ARE NOT PERFECT
Certain caregivers think they can do everything. They think they're supermen/women. And I was one of those. Before, if somebody came to my house and there was a dust bunny or things were out, it would just drive me crazy, because I wanted people to have that impression of me, “Oh – she’s superwoman.” I didn’t want them to see the flaws in me. Eventually it's like, you know what? Everybody has flaws. I think when I realized that, I kind of let go. You just have to let things go. I am learning to relax more, and realize that people can stop over at my house. And it may not be perfect, but at least they're welcomed.