Sep 14, 2020
For All Abilities – The Podcast Henry Furler Part Two
For this episode of For All Abilities: The Podcast, I got to talk with one of my very favorite people. I interviewed my son, Henry Furler! Henry and I talk about the life threatening medical problems (including epilepsy, dysautonomia, autoimmune disease, autoimmune encephalitis) that he has faced throughout his life and how he has succeeded despite all the challenges.
To connect with Henry, please follow him on LinkedIn (Henry Furler) or email him at jhenryfurler@gmail.com.
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Transcription by Otter.ai
Betsy Furler 0:05
Welcome to for all abilities the podcast. This is your host, Betsy Furler. The aim of this podcast is to highlight the amazing things people with ADHD, dyslexia, learning differences and autism are doing to improve our world.
Henry Furler 1:17
I'm so glad to be here again. So when we left off, we were talking about middle school and then High School is when it really got interesting, right? Yes, I'm in ninth grade. For the first semester. I was completely, I was completely homebound. And
that would have been 11th grade. No, it was 10th grade Dengue Oh, I think it was in 2008 it might be 11th grade because Henry's usually right about dates. So, okay, anyway, so I'll start at 10th grade since we're mentioning that. Um, so in 10th grade I started at a very small private school called Xavier educational like how to me where the majority of the classes are online, but you go to a school location and they have like tutors
interact with. So okay, tell them about being Dengue So in 2015, I went on a youth group trip and to Port Aransas, Texas, and a week later
National Institutes of Health on tropical diseases and specifically, I think the West Nile and Dengue so he had a presumptive diagnosis of dengue fever, with all the symptoms and you're right that after
Betsy Furler 9:38
So we forgot Henry also to tell them that while all this was going on, you were very active in Boy Scouts. And you're also very active in the children's advisory board at Texas Children's so wanted to tell them a little bit about Boy Scouts because you had finished your Eagle before he had dengue
Henry Furler 9:56
Let me finish with the dengue first Okay.
to the National Institutes of Health because the disease had finished its progression and she couldn't report it it was tested too late yes um, and dengue of the
Betsy Furler 10:33
pretty much for your lifetime after you get them dengue is one of those and that will come up later. And he also during the dengue he started having a lot a lot of severe dizzy spells and heart rate variations and breathing variations and was ultimately diagnosed with dysautonomia, so tell them a little bit about your extracurricular activities since your life wasn't awesome.
Henry Furler 11:00
In the hospital, it seemed like it was. So a few years before I got dengue I became an Eagle Scout. Through the Boy Scouts of America, I built a cell phone charging station for the emergency Center at Texas Children's Hospital. And then I was on the children's advisory board at Texas Children's Hospital, which helped a lot with making the hospital more family pay family. Patient Centered Care is what they call it.
Betsy Furler 16:01
All through your life really, although you've been really medically complex and sick so much, but the good thing about you, Henry is, if you're not in the hospital, you're pretty much living life as quote unquote normal. So, maybe dengue was awful, and then you develop the dysautonomia after it. And then two years ago, almost in November, on November on November of 2018,
So much for being on my podcast for two episodes. Yes, I am glad that I got to share my story with all of your listeners. And if somebody wants to reach out to you to get more information or find out more about you, how can they find you? My email again is jhenryfurler@gmail.com. Thank you for being here, Henry. I love you so much. I'm so proud of you. I love you too. So, thanks for listening to my part two of my interview with my son Henry. And please like rate review, and subscribe and all of those things to my podcast on whatever podcast you're listening to this on. Please share the podcast and please follow me, Betsy Furler on LinkedIn and on Instagram at for all abilities on Facebook for all abilities, Twitter.
Have a listen to for all abilities, the podcast and please subscribe on whatever podcast app you're listening to us on. Hi, everybody. Welcome back to for all abilities the podcast. This is your host Betsy Furler. And today we are talking about talking with someone who has succeeded so exceptionally despite a lot of challenges. Frequently we talk to people with different types of neurodiversity like autism, ADHD, dyslexia and learning differences or with people with physical challenges, and today I am talking to my son for part two His medical story and medical challenges. So part one talks about kind of birth three Middle School. And part two, we are starting with his high school years. So welcome back to the show, Henry.
Henry Furler 1:40
that was a mess.
Betsy Furler 1:42
And he had had we also forgot to say that he had a vagal nerve stimulator implanted, which is an implantable device, almost like a pacemaker for your brain, right?
Henry Furler 1:51
Yes, that within. That was at the beginning of eighth grade.
Betsy Furler 1:56
But yet your seizures persisted. It has helped over time Yours at your Caesars Caesars persisted. So for ninth grade you are home. And do you remember why what were we what we were getting ready for
Henry Furler 2:09
for that fall? I do not. We were
Betsy Furler 2:11
getting ready for the ketogenic diet. Oh, yes. So tell them about starting the ketogenic diet.
Henry Furler 2:17
So when we first decided that we were going to do the ketogenic diet, and we went to the hospital and talked to the doctors, they were adamant that I would not follow the diet completely, because I was a teenager, and they were wrong.
Betsy Furler 2:36
So I said, Henry is like the most compliant person on the face of the earth, even if he is a teenager. So why don't we just try it? So we actually changed hospitals. Remember, we had to change
Henry Furler 2:48
we moved from the Texas Children's Hospital to children's Memorial Hermann.
Betsy Furler 2:53
Yep. So we had to change. neurologists made a new neurologist and then she got him started on the diet. So tell him about that. fat.
Henry Furler 3:01
So it's an interesting diet, lots of mayonnaise, butter, olive oil, um, you have to measure all of your food in you have to weigh all of the food, and it's very time consuming. And we did it for almost five years.
Betsy Furler 3:23
So for the first like two or three months, I think I made almost all your meals. Remember, we used all those little recipes or those little things that we had to follow and measure to wait a 10th of a gram. And then you took over, learn to cook started cooking all sorts of super interesting keto things, and it did help them with it did help with your seizures after when you start the diet.
Henry Furler 3:50
Like my mom said, for the first what is it three to four months I think you have to do everything very very specific and you have to weigh everything no carbs at all. And then after that you can start transitioning into the more relaxed where you don't have to weigh anything, weigh everything, but I'm still a lot of oil and drinking olive oil, which is not the best thing to do with olive oil please
Betsy Furler 4:27
and eating Manet she got a you liked eating man a straight?
Henry Furler 4:31
Yes.
Betsy Furler 4:32
Mayonnaise is delicious and heavy cream, lots of heavy cream.
Henry Furler 4:35
Yes. But you can mix things with heavy cream. So
Betsy Furler 4:38
that's true. And so you kept on that and you did well and then in 10th grade Well, you had a couple of hospitalizations, several hospitalizations on getting the keto kind of settled in your body. Because you had refeeding syndrome. Remember, like prisoner Have war have when you're fed, again because of the effects of the keto, and then some hospitalizations for illnesses and seizures and all the regular stuff for us. And then in 10th grade, you got really, really sick. And, and tell them about that.
Unknown Speaker 5:20
So
Henry Furler 5:23
around
Or mentors that are actual teachers. I'm there to help you with all of the assignments. So the assignments are online. And for the majority of the classes and they're graded, and outside of the school, that's how
Betsy Furler 6:17
it was done then yeah, now it's a little different
Henry Furler 6:20
yet now they have actual teachers, um, and quite a few of my classes while I was there had actual teachers I'll mention that in a minute. Um, but, um, because you could work at your own pace at that school that worked very well with my medical issues at the time.
Betsy Furler 6:43
Henry didn't really like being homebound and ninth grade and being homeschooled. He was homebound through the school district, but I also homeschooled him or he homeschooled himself, but he really likes the input of other teachers and peers. So Xavier worked really well for that and it was nice and flexible.
Henry Furler 7:01
I loved the majority of my classmates as well my graduating class was I think 10 or 11 students. I loved the majority of them. There were a few that were a little difficult, difficult to
I started having some really bad symptoms, my body would be aching a lot.
Betsy Furler 7:43
So you had a severe headache behind your eyes here you can tell that he had a severe headache behind his eyes, severe body aches and was very weak. And so we ended up going to the into the emergency room they thought he had meningitis. So they did a spine They'll tap on you with no anesthesia. Um, and they he was admitted, because he was so sick. And after quite a few days in the hospital, he was they, they didn't really know what was wrong, but my husband saw something on TV about Dengue fever. And we were able to through our network contact a local woman who also happens to be a national authority on tropical diseases. So she actually came to see him after we got home.
Henry Furler 8:34
She, she is a doctor and she is one of the national authorities with the
Betsy Furler 8:58
the disease progresses To that point where you have bleeding under the skin, and bleeding and the GI tract,
Henry Furler 9:06
I think, I think the the bruise was from an IV that I had at the hospital during the hospitalization and it stayed for over two weeks, even though there was no bleeding like from the IV, like they got it was a really good idea, actually. But the lady who came the National Authority who came to our house and did the test, she said, um, a week or so, later, she said, it's ding gang.
It is to help children so that they don't feel scared in the hospital.
Betsy Furler 11:39
And we learned a lot about things like we talked to the other kids and learn that they only gave people one chance of drawing blood. And we had been giving them three chances. And we realized that the error in our ways and we went to the one chance because if they don't get it on the first chance that they're probably not going to get it right. So you also were inquiring Middle School. Shut up, shout out to Mr. bola.
Henry Furler 12:02
Let me say something else about the Texas Children's advisory board. So there were a lot of fun things that I did with the children's advisory board one time. We tried new foods from the kitchen at the hospital and rated the foods and they were actually all really good. The food at Texas Children's is actually really good. Another thing, if any, but if any of you know of radio lollipop that some hospitals some children's hospitals have, we went to the hospital one night and we did like a children's advisory board takeover of the radio station and that was a lot of fun. Um, we have like a little day trip every year to celebrate the end of the children children's advisory board year and that was we did a lot of fun things and where are we now with the
Betsy Furler 13:04
choir. So I think that he did children's advisory board for like eight years, like from 11 to 19. Okay and then choir just say just give a shout out to Mr. bola
Henry Furler 13:16
shout out to Mr. bola for directing the linear middle school choir and for doing all those awesome trips with the choir we went to Disney World twice. It was a fun school trip to Disney World. And then we went to Fiesta Texas in San Antonio once
Betsy Furler 13:34
and one of the benefits of having a medically complex child is you get to go on all the trips because they get kind of scared of him and so I get to go and I don't know maybe the next time you go on a trip you might go by yourself finally because you're 22 now but anyway, I like having you there with me. Through all the school trips, I got to go even if they already had enough chaperones. They'd either kick somebody off to let me go or does add me as an extra. So that was fun. He also did the the geology thing.
Henry Furler 14:10
Yes. When I throughout the time that I was in high school, I did a G a series of geology field trips through the University of Texas at Austin. They have a program called geo force, Texas. And we did a series of professional college level and geology trips. A lot of my education actually since about fifth grade has been a college level staff, but presented so that a a middle schooler, or mostly high schoolers, it was like, it was like, I've been taking AP classes basically since I was in fifth grade. But um those trips were like college classes. And they were a lot of fun because we go to a lot of different places one year, we went to Padre Island and Puerto ramzes. And we went out and we took like an open ocean like boat and they let us swim in the ocean and a shark actually brushed my foot. It was a little scary but fine. We went to Utah, Montana and Idaho I think the last year and we went to go see I get Yellowstone and Yosemite mixed up all the time. It's the one with the big geyser. I think that's Yellowstone.
Betsy Furler 15:46
So that was really fun. And I didn't go on the trips, but I went to the location and hung out just to make sure that he was okay. And so we so we you got to do a lot of fun stuff.
you had or there earlier in that month, you'd had a little cold. And then about a week after that, you got the flu shot. And then a week after that, you want me to tell the story or you want to have it a week after that.
Henry Furler 16:48
I kept being what we thought were frontal lobe seizures, they call I think they call them focal seizures now, and that would look like temper tantrums For a few months before that,
Betsy Furler 17:04
really years but they've gotten progressively worse and we thought you had Pam's and tell them what pan's is because I always get it wrong.
Henry Furler 17:12
That's the pediatric autoimmune, neurological, something,
Betsy Furler 17:22
something like that. Anyway, we thought that he had that and then in November, I came home, our washer and dryer both broke that day. And so I Henry had had a seizure that morning, and then went into a catatonic state, he'd been having progressively more seizures and more strange behavior. But that morning in particular, he had a grand mal seizure. And then later in the day, he went into a catatonic state and our washer and dryer both broke, I ran to the store to buy a washer and dryer, and when I got home, he met me at the car with his backpack gone and said we have to go to the emergency room. There's something wrong with me. So we went and in the emergency room he went into a psychotic event and, and also started seizing and was very aggressive. Do you remember any of that? No. So they put him in scrubs like they would for a psychiatric patient. And then I convinced I and our wonderful nurse Lacey, and convinced them that it was medical because he was having so many seizures. So they did not put them on the psych ward, which is such a blessing because had they have done that it would have been really hard to get the medical testing that we needed. And it's a very long complicated story, which we might have to have a whole separate podcast for someday, but the short version of the of it is that he ended up having autoimmune encephalitis.
Henry Furler 18:55
If any of you have seen brain on fire The movie with what's her name? Susanna Callahan. Um, her story. It's basic, it's it talks about the autoimmune encephalitis
Betsy Furler 19:15
so you were having delusions and you are very, very scared and you are responding to that with being very aggressive and only certain people could be around you or touch you. So I was one of those people and Lacey was one of those people. And then as you got transferred to a different hospital there, there would be nurses here and there that you were okay with them touching you, but if someone would come at you or be confrontational at all, you got very aggressive and very upset and very scared. And like you wanted to flee and you were paranoid and it was horrible, horrible, horrible, and then your
Henry Furler 19:59
There were points before November, where when did we go to the wedding reception in Tyler?
Betsy Furler 20:09
That was right before that,
Henry Furler 20:10
Okay, um, when we got home when we were driving home, we passed No offense to anybody if they are a member of this faith but we passed at Jehovah's Witnesses meeting house and I thought that they were coming after me. And before that when my mom would be driving me back to school, I think that was for the spring semester.
Betsy Furler 20:41
So you went off to southwestern University and Georgetown taxes and you lived on campus for two years. And towards the end you got really so you are having a lot of separation anxiety
Henry Furler 20:53
when she would drive me up when she drove me up to the school for the spring semester. I was crying I didn't want to go back and I was having a lot of that separation anxiety. And one of the another one of the big symptoms of the autoimmune encephalitis is I'm trouble writing or reading and I basically stopped reading because it would hurt my eyes and I just couldn't understand what was going on. And when I looked back on some of my writing from that time, the letters would be, they wouldn't be wrong, but I like would squish them together. So there would be like an a and an E squished together and into a very small space. They weren't, they were distinguishable. But they were very squished together kind of like a cursive but no fanciness
Betsy Furler 21:50
and he really went after the psychotic event in the hospital and he remained in the neuro ICU and he's lost His ability to read completely at that time lost his ability to write his balance got very, very, very poor, and he was unable to swallow safely. He was aspirating when he swallowed. I at that point stepped in and told the doctors that I thought thought it was autoimmune encephalitis. And they told me to go back in the room and be a mom and stop being so smart. But they ultimately did start testing him for it and as I said, is a really long story, which we probably need a whole separate episode on. We could probably do a whole podcast itself on it. We ultimately through really through my advocacy and my mama bear ness. He finally ended up being diagnosed it took the several months,
Henry Furler 22:44
this specialty doctor at Texas Children's that we saw one appointment with, we walked in, he looked at our history, I think there were four doctors in the room. First, the they all looked at the history, I think before we got They're the psychologist who was the psychiatrist who was there. We walked in, she said hello to us. She said, I've looked at your history, it's not psychiatric and she walked out. And the specialty doctor for autoimmune encephalitis said, that's what this is.
Betsy Furler 23:19
And at the time, he was on very, very high dose steroids when I got convinced them kind of that it was autoimmune encephalitis. And they put him on very, very high dose steroids and which caused a lot of other issues and also hospitalizations for blood pressure and all sorts of things because the results of the steroids but they slowly started work, they really helped tremendously, the very beginning, but he still had a lot of swelling in his brain and a lot of issues and still lost a lot of time. And then ultimately, tell them me what she finally started the treatment with. We started the ibig Or what is it? intravenous immunoglobulin treatments? Last August? It's been about a year.
Henry Furler 24:09
Yes. Um, and they have I don't know why we haven't been doing that forever now. They've basically made my life like all my it's treated all of my health issues basically.
Betsy Furler 24:26
Yeah, so now he's like 95% back right from that I mean encephalitis, his allergies
Henry Furler 24:32
will ever get to 100 but I'm good with 95
Betsy Furler 24:35
allergies are better, seizures are better, everything is better. You hardly ever have dizziness. And, um, you're in your senior year of college now. So it's gonna be a super senior. So
Henry Furler 24:47
I've been in college for five years,
Betsy Furler 24:49
but he's only been in college for five years. He's gone to five different schools took one semester completely off and he's only done one summer of work for schools.
Henry Furler 25:00
Southwestern University of St. Thomas. St. Constantine, the College of St. Constantine and
Betsy Furler 25:08
H nhcc. Oh, five schools. So he's amazing. So since my my big thing is accommodations, tell them what accommodations you have in college,
Henry Furler 25:20
I have a lot of extended time accommodations, and extra, I think one of them is like extra time with the professors if I need it. And I'm deferred. I think one of them is the deferred testing. So if I need to move the test to another day or if I need extended time for a due date, because a lot of my my entire anthropology degree program is online, which is something they offer for anybody but it works really well with my health issues. And also the school is like an hour from our house. We don't have to drive there. But um, all of those accommodations, the professors are very good with them. And the professors are nice anyway. And, um, during the regular school year, it's easy because the online classes, it's a lot more about. Um, I want to say it's about reading and the content. There aren't a lot of assignments, discussions on online discussion boards. And it's all spread out over the week. But over the summer, the first half of the summer, I took three classes that were only five weeks, and that's one whole semester of classes squished into one third of the time, and I got two A's and a B on those classes. So
Betsy Furler 26:51
yeah, so you're doing great in school. I'm so proud of you. My
Henry Furler 26:55
GPA right now is I think 3.6
Betsy Furler 26:58
Yeah. So So We're almost out of time, but tell everybody what you what your plan is after you graduate next May
Henry Furler 27:06
a go to school for graduate school, and I hope to do Holocaust and genocide studies. All not all at the same time. Not all three of these at the same time I should confirm because Holocaust and genocide studies is one degree museum studies and World War two studies
Betsy Furler 27:26
because you're very interested in empathy based curriculum around Holocaust and genocide studies, right?
Henry Furler 27:33
Yes, if anybody has heard of facing history and ourselves, that's a an empathy and understanding based curriculum for English on the social social sciences that helps students understand each other as well as understand historical events.
Betsy Furler 27:52
And you've done so much containing add on Holocaust and genocide studies. It's incredible. So, Henry, thank you. So
Betsy Furler or far for all abilities, and also I have a special LinkedIn group that is all about connecting people who were involved in technology for people with disabilities and digital accessibility. So if you connect with me on LinkedIn, I would be happy to include you in that group. Thanks so much for listening, and I will talk to you soon. Thanks so much for listening to the for all abilities podcast. This is Betsy Furler, your host and I really appreciate your time listening to the podcast. And please subscribe on any podcast app that you're listening to us on. If you'd like to know more about what we do in our software that helps employers support their employees with ADHD dyslexia, learning differences in autism, please go to www dot for all abilities.com You can also follow us on Instagram. And you can follow me on LinkedIn at Betsy Furler. It's f as in Frank. You are le Have a great day and we will see you soon.