November 24, 2020

Brew Dads

Lately, most of us have an abundance of time at home. A lifelong friend and home brewing enthusiast, the great Chris Elder, stops by to discuss and walk me through my first home brewing experience.






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Northern Brewer Starter Kit
Bottling Bucket
Catalyst Conical Fermenter
Corn Sugar
Star San

Tilt Hydrometer


November 17, 2020

Meningitis 101


Dr. Todd Wolynn, CEO of Kids Plus Pediatrics in Pittsburg, Pennsylvania, works to educate about immunizations, infectious disease and primary care. He stops by to discuss the symptoms of bacterial meningitis, the potential long-term effects, and the vaccines available to help prevent it – as well as the work he is doing to empower vaccine advocates.




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Episode Transcription:

John:
I'm excited to talk to you about meningitis, which sounds kind of odd, but it's something that is deeply affected my life. And I think it affects a lot of people as well. And I think there's some really good information to get out into the public space about meningitis, but before we get in too deep, tell me what you can about yourself and, and your practice and what you do.


Dr Todd Wolynn:
I am a general pediatrician. I'm a lactation consultant and I'm also the CEO of a, an independent pediatric practice in Pittsburgh, Pennsylvania. The name of that practice is Kids Plus Pediatrics. And we're in Pittsburgh. We have three offices about a hundred employees, so we're kind of a large, I guess, small size practices, is how they categorize us.


John:
Okay. So let's talk about meningitis kind of generally speaking, what is meningitis?


Dr Todd Wolynn:
Meningitis is an inflammation of the meninges. So that's the lining that covers over the brain and the spinal cord. The question gets to what can cause meningitis and there's a few different causes, right? So there's bacterial causes, there are viral causes and rarely there's even fungal causes. But most commonly when people refer to meningitis, they're typically talking about bacteria or viral meningitis. And those two are pretty different.


John:
Different in what way? So I, as I've mentioned before, I'm a survivor of bacterial meningitis, but I know some people that have had viral and it seems to be less severe.


Dr Todd Wolynn:
Correct. Yeah. In general both are pretty uncommon, right? So these are relatively rare compared to other viral bacterial illnesses, but that's correct. I would say viral meningitis, you will have symptoms that represent the inflammation again of the meninges, the lining of the brain and the, and the spinal cord. So you can have symptoms that can be somewhat similar, headache, fever, neck stiffness light sensitivity, visual issues, sometimes cognitive issues, but in viral meningitis, the symptoms typically aren't as severe, are self-limited and typically can go away. They may require some medical support, but oftentimes may not require medical support. Conversely, bacterial meningitis can cause real serious disease. So it, it also is inflaming the lining again, the meninges over the brain, the spinal cord, but these symptoms can become quite severe. And the thing that the that's really the, the scariest piece of bacterial meningitis is that the symptoms can go from mild, almost like cold like or viral, you know, mild viral symptoms like to coma or death with within a day's time. Now it could take longer, but it can go that rapidly. And that's why it's quite terrifying when we hear about outbreaks in our community, because when they hit, you will oftentimes see the picture of a relatively healthy, a child or young adult who gets this disease. And, you know, you hear terrifying stories of these people ending up in ICU, or even, even dead in rapid fashion.


John:
I guess what you're saying is the bacterial would be more aggressive and more fatal. So it sounds like it can happen very quick or maybe not.


Dr Todd Wolynn:
Correct. Yeah. It doesn't always have to have that rapid 24 hour course. And I'll tell you that you hear cases. I'll distinctly remember one of a girl and I think she, I think she did not survive, but she had gone to the emergency room three times, three times within like a day and a half or two. And again, because these symptoms are kind of nondescript at first, maybe some achiness, some fever, some headache that, you know, an onset, it might look like a viral illness and you go to an emergency room and you're not looking at that initially. And while the patient may feel pretty lousy, the, the healthcare providers as they do the workup if they're not suspecting meningitis, they could easily write it off as, Oh, this looks kind of viral. I don't know exactly what it is. Just here have some fluids. They might give them IV fluids or tell them to drink and send them home. And I distinctly remember this girl and I don't remember if she went to the same year, three times. I know she went to at least the same one twice. Second time went back again was told oh it looks viral. I think maybe was for, I don't remember what the particular treatment was, but by the third time she showed up and then went into an ICU. I don't believe she survived. And that just goes to show that this is a really hard disease to, to accurately diagnose early. And even when, even when accurately diagnosed and antibiotics are administered for neisseria meningitidis, the bacteria, even when you do that, you still have kids that die or go on to have significant long-term complications. So it's, it's a, you know, it's pretty terrifying in that respect. Even if you make the right diagnosis, you could have, I think it's about 10 to 15% of people will go on to have death at 10 to 15%, even if accurately diagnosed. And another 20%, like one in five can have long-term complications. And these can include depending on how the bacteria is kind of invading the body. If it's just in the the meninges, you can have damage to nervous tissue, right? So cognitive issues, you can have vision issues. You can go on to have a deafness you can, depending on if it starts to go into the bloodstream, you can have things like amputations, organ loss. So you, you start to look at what's called a meningococcal meningitis, which is inflammation of the lining of the nervous tissue versus meningococcemia where it gets into the blood. And that has a particularly high fatality rate. So when we look at the two different types of ways that it can attack along the lining of the nervous system versus the bloodstream, the death rate goes up to as high as I think, 40%, if it gets into the bloodstream. And if you've ever seen pictures of, of patients who have suffered that type of infection, what you'll see is what are called purpura. Those are ruptured essentially blood vessels with leaking blood and people will have these kind of reddish purplish spots under the skin. And that's a particularly scary sign when we see a purpuric rash that that's a real emergency. And if we ever see kids with that rash, they immediately are into the emergency room in intensive care unit, typically if it's related to neisseria meningitidis.


John:
As far as what meningitis looks like, I think you just kind of walked through most of it there. Purple spottiness I've heard that. Are there any other telltale signs that would, it would indicate meningitis versus...


Dr Todd Wolynn:
Yeah, if we think of like classic meningitis signs, right? So the purpuric lesions are when the blood stream on the bacteria is getting into the bloodstream. When we think straight meningitis, we'll oftentimes hear kind of the classic things you're taught in medical school is, you know, people complaining of a headache sometimes like, you know, just a horrific headache, neck stiffness, light sensitivity. If we see those, you know, are, are kind of the red flags should be going up for, Hey, am I possibly dealing with some form of bacterial meningitis here? And neisseria meningitidis isn't the only bacteria, but it's it's certainly the main one we think of for these symptoms. And again, that requires getting those kids or young adults or infants or older adults. I mean, it can affect any age group, but in this disease, it does affect kids and young adults particularly Meningococcal B. And we can talk about the different stereotypes, which are different kind of types of neisseria meningitidis. But yeah, when you see symptoms of horrible headache, neck stiffness, light, sensitivity fever, boy oh boy, that that is something that should get any healthcare provider pretty nervous, and getting that patient in for immediate care. The bloodstream, again, it could have achiness, fever, but by the time you're seeing the purpuric rash, these patients are gonna look horribly sick. They could already have impact of organs, again, they potentially could also have neurologic issues. But when their organs are getting affected and that purpuric rash is being impacted really you're starting to see systemic or full system effects of that bacterial infection.


John:
Why do you think that it is that it affects adolescents and youth so much more so than other generally the population?


Dr Todd Wolynn:
Some of these diseases have relation to either a condition so like infancy we know kids are more susceptible to certain bacteria. So meningococcal B is known to impact infants and can cause disease. But adolescents and young adults for meningococcal B also are susceptible as are the other types of meningitis, which we'll talk about. And that's more likely related to types of behavior and living quarters. So we know that certain types of meningitis really seem to, for whatever reason cause infection in these populations that live in close quarters. So dormitories at like colleges, barracks and military installations where lots of people living in close contact. And the other thing, when we think of dormitories in college life are certain types of social behaviors, sharing drinks and intimate contact is also felt to spread this disease. So in college, we know those are all pretty high risk types of behaviors. So those are the two things we often think about for a higher risk for kids with meningitis. So in the military you know, the recruits are now, I believe uniformly immunized against both meningitis B as well as types A, C, Y, and W and again maybe following this, we can talk about the different types. And now in, in general population, I would say for high school, at least in our area in Pennsylvania, it's mandated to get what's called the quadrivalent meningitis vaccine. And that protects against types A, C, W, and Y, and then the B, which does not fit in the same vaccine, you have to get a separate meningitis B vaccine. That is given at an older age and required by some colleges, but not all. So if it's okay with you, if you'd like, I can talk a bit about the different types of meningitis.
John:
Yeah, absolutely. Let's do that.


Dr Todd Wolynn:
I think there are 12 different types of neisseria meningitidis. And they're broken down by what are called serogroups. So they're identified by different proteins expressed on the outside of the bacteria. And it's pretty interesting. If you look at the epidemiologic studies, they can tell you what types are more predominant during different times. So different decades you'll see that sometimes type A's more prominent, or type C is or type w and so it's also geographically different. So what might be very common types in the Eastern hemisphere might be very different in the Western hemisphere. Now you heard me reference type B and I kept mentioning it separately from several of the other types. So the most common types we see in the U S and the Western hemisphere are definitely types A, C, W and Y. And that's why they came up with a vaccine to address those four types. So there is, what's called a quadrivalent vaccine, quadrivalent standing for four serogroups, and that's types, A, C, W and Y with a first dose given an age 11 to 12 years of age. And then a second dose of boosting dose given at around age 16 years old. So it's a two dose series again, first dose at 11 to 12 with the second and final dose given at age 16. Now you heard me say the quadrivalent at A, C, W and Y, you didn't hear me say B and while they've tried and tried, and they're continuing to try to get a vaccine that takes care of A, B, C, W and Y so far, they haven't been able to get the B in there without interfering with the other types. So currently the meningitis B vaccine is given at age 16 with a follow-up dose. Usually they recommended about a year. So we give that dose at 16 and 17. And again, that's the one that we see pretty commonly in those groups. Like I said, that college age, or living close-quarter living in barracks or dormitories.


John:
I don't want to get into COVID-19 specifically, but just in general, how does the infectious rate of COVID and how COVID has spread? How does that link or become common with meningitis? Is it through the droplets?


Dr Todd Wolynn:
Yeah, there's still a lot to be found out about COVID right? So it's a virus. So we're comparing that as we compare it to these types of bacterial meningitis, different in that COVID is a virus that neisseria meningitidis as a, as a bacteria, the while they both infect secretions, the droplets that are spread spreading COVID, we believe are small to very small droplets, so it can travel three to six feet, and there's even some modeling that shows it could even travel further and smaller droplets. In bacterial meningitis, we don't think of it really being suspended in air very long. When we think of fatality the COVID depending on the data you're looking at could have a fatality rate of 1, 2, 3%, I think, in the higher range. But we've already talked about the neisseria meningitidis can have pretty significant fatality. If you are looking at the meningitis, we said maybe 10 to 15%, and if it gets into the bloodstream up to 40%. So the thing that's terrifying about the bacterial disease neisseria meningitidis is it's absolute rapid symptoms progressing to severe or death within 24 to 48 hours, whereas COVID, which is scary and certainly has killed lots and lots of people isn't nearly as fatal, but it's pretty darn infectious. And as we see, and I do like to point this out, what we're seeing with COVID right now is a world without any herd immunity. So it's a, it's a new virus. There's no real protection in the, in the population from it. So if you're exposed, we see how rapidly it's tearing through the, the USA and the globe. The interesting thing with neisseria meningitidis that bacteria is that people can carry this in their nasal pharynx in the back of their throat, essentially, without causing any disease. And we don't know why some people, it goes on to progress to disease and another people, it doesn't. They just seem to carry the bacteria. So that's another kind of fascinating quandary that we have with neisseria meningitidis.


John:
Yeah. And that's the same thing for me too, especially with the infectious rate of meningitis, it seems to be pretty infectious. But where I was in a college setting, when I, when I got meningococcal meningitis, I was the lucky one. So nobody else had any symptoms or nobody else was hospitalized or anything with, with any kind of symptoms. So is it normal for that type of scenario as well?


Dr Todd Wolynn:
Correct. Right. So a lot of times you'll see one person get it while maybe living in a dorm or in a fraternity, or even at home, and nobody else getting any symptoms. Now, there have been cases certainly were, if you swab everybody, they come in contact with, you can see people that may be carrying the bacteria, but again, having no symptoms. And so we still don't have a clear understanding as why that may be related to certain types of genetic predisposition or behavior, but we don't have absolute answers on that. If you're in close contact with somebody that has meningitis, meaning sharing a household or an apartment or a dormitory, we will treat those people. Just because we know there's risk. And we can't predict if they might go on to get the disease. So there is treatment that goes to, to close, close contacts of people that go on to get the disease.


John:
In your practice or in your medical experience, have you had any firsthand encounters with meningitis?


Dr Todd Wolynn:
Yeah, I mean, it's the thing is it's rare. So in my twenty-five years of practice, we've had a couple patients that have had it. I saw more when I was a resident, because don't forget when you're a resident and you're working at the hospitals, you are that referral center for a large region, as opposed to a practice where you could potentially go your whole career with maybe only seeing a couple of cases or perhaps a few. When you're working at the hospital in the emergency room or in the intensive care unit, you definitely are going to be seeing those patients referred in from the entire region's worth of practices. So there, sadly, I did see kids with meningitis now, thankfully the majority that I remember over those three years of residency and four years of medical school the majority survived, but some did not. And someone on to have really terrible complications, again, there's amputations there's organ failure. And then having you know, the wonderful opportunity of working with the national meningitis association, I've had the chance to meet other survivors like yourself. So Blake Schuchardt and Francesca Testa both survive, but both had complications whether it was cognitive and muscular kind of need to recuperate or amputations or organ failure. So you know, I've, I've certainly met people as well that have survived. And I actually did 14 years of clinical vaccine research. And I remember when we were involved in the early studies looking for a meningitis vaccine, I met a gentleman who had four limbs amputated because of his experience with neisseria meningitidis. So it's it can be a pretty, pretty devastating disease.


John:
Without a question. It can. So I guess it's the combination of the rareness of the disease and kind of the ambiguous nature of the symptoms that makes it really hard to detect in a, in a timely manner.


Dr Todd Wolynn:
That's right. Yeah. You don't seem, you don't see it frequently, so it's not necessarily the top of your mind and the symptoms can start off as pretty run of the mill viral symptoms of achiness, a little fever, just not feeling right. Some headache. I mean, that can be anything right. That could be flu. That could be just a, a non-flu viral illness. And as I said, that one girl that went into the ER, three times, you know, within, I think it was like 24 hours or so two times they sent her back out saying it looks viral. And I think the second time gave her some fluids. But you know, if you're not thinking of it, if you're not doing the testing, which can include blood work to see how the immune system, particularly the white blood cells are reacting to the infection that could give us an idea if it's bacteria or not. And if you're thinking meningitis besides getting blood samples for looking for cultures of blood counts, we usually do, what's called a lumbar puncture. And while this sounds pretty terrible when needles inserted into the cerebral spinal fluid to get a sample of that, and that should lower in the spinal column it is, it is a test that can tell us if there's a bacteria invading into the cerebral spinal fluid. So those, those tests really help guide the decision for types of treatment.


John:
In my experience, when I was taken by ambulance to the hospital, of course I'm unconscious. So I don't have any memory of that, but the doctors that were at the ER, when I arrived, we're trying to identify the, what the issue was. And based on the way I was presenting to them, they originally thought that I had a drug overdose and it wasn't.


Dr Todd Wolynn:
So how long were you sick for before you were unconscious?


John:
Basically, I was feeling bad starting on a Thursday evening and I was in the hospital by noon on Saturday. So I went to bed Thursday evening feeling kind of like I had the flu, which is another thing I want to ask you about too, as a, as it relates to the flu and woke up Friday morning with the worst, you know, looking back at it, the absolute worst flu symptoms anybody could ever have with getting sick. And I had to like vertigo feeling where I was, everything was spinning. I couldn't, I could stand, but I couldn't stand for more than a few seconds because it, I fell like this, the world was spinning to me and I was violently getting ill and after maybe an hour or two that stopped. And I went back to sleep in my bed and by the grace of God and lots of other miracles that happened in between a friend of mine found me unconscious called 911. And they took me to the, to the hospital by ambulance. And it was at that point where the, they thought that I had overdosed on or they had thought that I had overdosed on drugs or something.


Dr Todd Wolynn:
Right, I mean, cause unless you had fever, the very first thing that goes through a lot of people's heads are teenager you know, unconscious, let's start thinking of things. They can cause loss of consciousness. So there's, there's basically algorithms we go through, but they include, you know, overdose, which certainly is not uncommon. And if you look at the reasons for a loss of consciousness in that age group, drug certainly is high. So you have to consider it, but you always have to consider infection. Then it sounds like they must have realized at some point that infection was a possibility. And it sounds like they ended up treating you for that too as well.


John:
I think the way that they finally determined it was through the lumbar puncture or what I would call it, what I call a spinal tap.


Dr Todd Wolynn:
That's right. Yep. And there's, once you get a positive lumbar puncture, you know, you could have a negative one if you perhaps maybe don't get the needle in the right space and get enough fluid. But if it's positive, it's positive. So if you're getting white blood cells that are increased in the spinal fluid, and if you see any bacteria, when you do the analysis, that's pretty definitive. And then again, combined with their symptoms and the history, whatever history they could get, then you got to jump into the action and start supportive measures and get antibiotics on board as quickly as possible.


John:
Yeah. And that's one of the things that I think is so important and critical too, is that I don't, I didn't have any history. Now, I don't know if the ER knew that, you know, initially, but I wasn't on any kind of drug. And I had no medical history as far as, as far as anyone was concerned. I was 19 at the time. And of course I was also 10 feet tall and bulletproof. So I mean, I had no history of any kind of disease or illness or any kind of, I was I was your average 19 year old. And so for my timeline there, the Thursday evening to Saturday, sometime around probably 10:00 AM to noon, you know, we're talking 24 to 48 hours, like you said earlier. And it went from, from zero to, to something pretty quickly.


Dr Todd Wolynn:
And were you living in an apartment or a dormitory?


John:
I was in an apartment at the time. I had two roommates. I'd been in a dorm that the pre the previous year, but no, but I was, you know, very social and in lots of things and in intermural sports and I, which is some of the things that are kind of baffling to me is that I, I didn't, you know, I sit in classes with anywhere between 10 and 200 kids throughout the week and doing intermural sports where particularly the basketball was going on when I was, I was playing and coaching a basketball team and coming into contact with, with people physically and all those kinds of things. And again, I was, I was the lucky one. I was the chosen one. So, look at me.


Dr Todd Wolynn:
Well, and again, you, so by medical history standpoint, while nobody might've known exactly what went on for those 24, 12-24, 36 hours proceeding, what ends up being you being sent to the hospital, your age and your setting of 19 year old attending college, right there already puts meningitis much more high on my list, but it also puts up, you know, alcohol and drug overdose, right. And trauma. But if you didn't have a obvious hit to the head where we saw a blood or a wound to the head, you start kind of going through this decision-making process, which says, okay, if it doesn't look like trauma, could this be seizures? Could this be, you know lots of other things, but then you start looking at tests in addition to your history and your physical exam. So you rapidly start trying to acquire all this information. So you get as much history as you can simultaneously you start applying your knowledge base as to what we call index of suspicion. What are the kinds of things that we know that can cause these symptoms? Well, not narrowing it down too quickly because you don't want to miss something. Right? So what if we say, Oh my God, this could be meningitis, but in fact, you overdosed on drugs, right? Particularly in narcotic. Well, if I wait too long to administer the medication that can reverse those symptoms your life could be at risk as well. So we, we obviously look at your vital signs and we look at symptoms that would go along with overdose versus infection versus seizure versus, you know, maybe it could be something bizarre. Maybe you had a rare bleed or a stroke, right? All of those things can cause loss of consciousness. So we very quickly have to, you know, check your neurologic exam, check your vital signs, check your pulses because all of those things can start revealing and taking me down one path versus another, a bleed, a tumor, drugs, infection. And as we start doing the work of, sometimes we're working up a few of them at once by doing some of these initial screens, just with history and vital signs and physical exam. And then slowly you start peeling off, nope, this does not look like a bleed or it doesn't look like a tumor from, you know, what we know, or, or maybe we don't know if we say, well, let's get to the things that could most quickly and most having their most devastating impact. If we don't do something. So drugs then goes higher on the list and infection. And again, a bleed would be pretty rare for that age. So, you know, all this stuff is happening like on the fly in the emergency room. That's what those doctors are trained to do is take all that information, the information they're gathering in rapid fashion as well. As soon as you walk in there and start going down the decision tree and deciding what needs to be done. And as you said, blood count would have added to your vital signs. And then if they did a lumbar puncture, they would've gotten, there we go. And I don't know your specific case, but it sounds like if you think it happened after the lumbar puncture, that's usually pretty definitive. If the positive signs are in the blood, in the cerebral spinal fluid.


John:
And just to make things even more fun, it seems to me like it seems to rear its head during flu season or the winter or early spring months. Is that just me?


Dr Todd Wolynn:
Well, there can be some seasonality to it. That's for sure. And don't forget. Closer quarters often is associated particularly with school years, right in the fall and spring that could happen in the winter too. We won't see as much in the summer, but is typically out in the summer as well. And we're not in as close a quarters all the time cause we're outside. But yeah, there can be some seasonality to it and all the more reason why I tell people it's important to get things like vaccines that you can be protected against. So first and foremost, as we're talking about meningitis, there are the two meningitis vaccine. So there's the quadrivalent meningitis vaccine at 11 to 12. And again with the second dose of 16, and if you get that, you're pretty well protected all the way through your college years or at least late teen and even early twenties. And then the meningitis B vaccine, which will be offered at 16 and again, a second dose, a 17-18. And if you get those two that has pretty amazingly successful protection against the five types then that are in those two vaccines. If you go on to get a flu vaccine, that's additional protection against the disease that we're going to have to figure out is flu causing this. Cause as you just pointed out, if it happens during flu season, now I have to also figure out, well, wait a second. If I'm thinking of infection could flu cause this, that would be really typical to put you into a coma, but sometimes flu can be horrific and it can kill people. So we know that flu can be devastating. And then you know, there are other infections that can be pretty overwhelming. So not all of them have vaccines, but the ones we can be vaccinated against makes a lot of sense.


John:
While we're on the topic of vaccines, if you don't mind clearing up any kind of misconceptions that may be out there about vaccines in general.


Dr Todd Wolynn:
Sure. Yeah. So here's the deal after clean water. And, and the, the work that went into cleaning public water systems really the next most amazing public health feat was the creation of vaccines to prevent vaccine preventable disease. Prior to vaccines, you know, worldwide, we would have millions of kids, including in the U S dying of infectious disease, whether it was polio or whether it was diptheria or whether it's pertusis or meningitis. I mean, all these diseases. And as vaccines started coming out to protect against all these diseases, we saw a dramatic increase in survival of kids remaining healthy all the way through adulthood. When a lot of these kids, you know, yes, you could survive maybe a disease like measles or mumps or rubella, but some kids, a lot of kids didn't or went on to have permanent disabilities, even chickenpox. You know, almost all kids my age had chickenpox. I actually didn't. I was one of the first recipients of the adult chickenpox vaccine, but the point being that all these diseases that we have vaccines for caused horrific illnesses and deaths in kids, and people think, Oh, it's better to get the natural affection and survive it than to get these vaccines, that's a hundred percent not true. In any of the vaccines that we have out now while nothing is risk-free. And that means Tylenol. That means aspirin. That means bananas. That means water. Everything can have a level of toxicity depending on who's receiving it and what dose and how they get it. So yes, vaccines can have risk just like Tylenol or aspirin, but they're incredibly safe and very effective. Most vaccines are incredibly highly effective. I'd say they're probably the most variably effective vaccine we have out there is the flu vaccine. And even that one, while it's less affective than most of the vaccines we have. And it depends on the year. Some years are better than others. We also know it has amazingly protective effects, even on years where it isn't a great match. And even if you still get flu, having gotten the flu vaccine, we now know that it reduces the chance of that flu infection resulting in a hospitalization in ICU admission or even death. So I do want to point out that there's a lot of misinformation out there. And for anybody listening to this podcast, what I would say is that a lot of people hear misinformation on social media. The sources aren't always clear. They come in oftentimes saying, Oh, we're, we're worried about safety or, or, or the impact of vaccines. But what they don't tell you is a lot of people that are pulling the strings behind these campaigns are funding them, is that when they push this agenda being anti-vaccine, that it's often time's got profit tied to it. So there's money to be made. Sometimes it's political gain, or sometimes it's power and even hostile foreign nations. We have good data on this, which this anti-vaccine narrative to cause distrust in our institutions. But imagine, you know, John, if you had had the meningitis vaccine, and when I talk to Francesca and Blake, the same thing, right? They said, you know, I think Francesca was like a month away from getting her first meningitis vaccine when she got the disease. So who wouldn't do anything to protect their kids with a vaccine rather than get these diseases. So, you know, I understand that because of the disinformation out there, there's a lot of questions and having questions does not make you anti-vaccine, it makes you a good parent. And if you want your questions answered, absolutely you should have a healthcare provider take time and answer those questions. But for the people that are pushing absolute nonsense. And I mean, there is some crazy stuff out there, not just vaccines, but conspiracies that the earth is flat, or we never landed on the moon or you name it. All I can say is what does the science say? And as a physician, I took an oath to do no harm. And I took an oath to, you know, really serve families. And that's why I went into pediatrics. So my kids are all vaccinated against all the diseases, including meningitis and all, all, all three of mine got both meningitis vaccines, they got the HPV vaccine, they got the flu vaccine. I mean, they got all the vaccines that they could get and I'm vaccinated too. Like I said, I even even entered into a vaccine study when I was in medical school. My infectious disease professor said, go down to room six and check that kid out with chickenpox. And I looked at him and I said I haven't had chickenpox. He went what and I said, I haven't had it. He goes, are you sure? And I said, yeah, I have my blood tested. I don't have any antibodies. And he, he took out a piece of paper and a pen. He goes, Hey, they're currently doing a study on the first vaccine against chickenpox. So this was before we had a vaccine for chickenpox. This would have been I think it would have been early, early nineties, I think, early nineties, maybe 91, something like that. And I went down and they they interviewed me at the study. They drew my blood. They said, yep. You don't have any antibodies. And told me about the study and I entered it. So I'm also a vaccine study patient who went through clinical trials, got my blood drawn a bunch, got the vaccine as a, as a patient going through testing and continue to get testing for multiple years after that. So yeah.


John:
When did the meningitis vaccines become widely available?


Dr Todd Wolynn:
Yeah, so the quadrivalent remember the ones that covers type A, C, W and Y the first vaccine in the U S that came out for the quadrivalent meningitis vaccine came out around 2005. And then the meningitis B B as in boy vaccine that came out around 2015. So about 10 years later. And there's different companies that make it. So I don't usually, for these purposes mention one particular vaccine over the other, if they're safe and approved and by the FDA and given in offices, I don't care what company makes it as long as it can be used.


John:
So those are relatively new. And for me, what it wouldn't have helped me in 1998,


Dr Todd Wolynn:
Correct. Yeah. Right. Because this is before. And like I said, I remember, I think it was Francesca who think hers was like, just like a month or two later is when she, she recalled them. She would have been able to get her dose. She and Blake both have pretty compelling stories. And I was honored to be able to do work with them on behalf of the National Meningitis Association.


John:
And regarding the National Meningitis Association, how do you think education has changed with meningitis over the past 5, 10, 15, 20 years?


Dr Todd Wolynn:
Yeah. I'll tell you what I think is going on. And there's a couple of things. One it used to be, I think that when your healthcare provider there, weren't like all that many vaccines when I started and before I started the reviewer. But if your healthcare provided it, I think most people just went ahead and accepted them. As newer vaccines are coming out and with the advent of social media, particularly its huge popularity over the last 10 to 15 years, there's so much different amounts of information out there and really hard to sort through what is what. And so the really factual sites like the CDC and the NIH and even medical professional organizations, sometimes it's hard to, it's hard to even sort through that. I think in the last five, six, seven years, they've improved the information they provide. So they're not talking to scientifically and making sense of information, but what's happened with social media is you get both good information, but oftentimes a ton of bad information. And it's hard for somebody to sort through that and where the trouble begins is when misinformation comes out, we, as humans are hardwired for detecting threats and risks. And if you think about it clickbait, right, the stuff you tend to click on is really sensational and oftentimes scary whether it's about, you know, shark attacks or Loch ness monster or alien abductions, right. They could be really fantastic, almost believable right after the titles read, but you still have a tendency to want to click on it because we're hardwired to do that. And so when you see information like, Oh, these vaccines sterilize people or government and doctor or pharma, or they're all in bed with each other and making money off of harming people, right. It sounds crazy, but you, you, a lot of people will click on those stories. And again, as I said, the real ulterior motives for people that push this, this information out there, but how do you combat that? Well, you combat that with people who have real stories of what the diseases can do and that's because these diseases harm and kill people. And before we had vaccines, they devastated multiple families each year, which doesn't happen now because the vaccines are there. So the National Meningitis Association just like groups like families fighting flu, go out there and help real people tell real stories of survival from these diseases are sadly people, they lost to these diseases. And that becomes a real awakening. When you see a real person with a story that's their own, or their family's telling you just how bad these diseases can be. And that is a pretty potent anecdote to false and, and, and, you know disinformation. And so that's why I think groups like national meningitis association and other groups that are out there trying to tell people what can really happen really as a potent affect. It doesn't take away from the fact that healthcare providers and doctors need to be better communicators. A lot of times we interrupt our families and our patients. We oftentimes are rushed to get in and out of the room. And so don't give adequate time. I think the families that have questions, and honestly, I believe that visits and the constraints put on healthcare providers are so significant that we can't spend the time we want to, which is why I'm a huge proponent of healthcare providers getting out on social media platforms to be able to engage their families in other ways, which is why our practice has a Facebook page and a Instagram page and Tik Tok. And we have a YouTube and a Vimeo channel and we podcast because then we can reach families 365 days, even seven days a week in 24 hours a day, depending on when they're up and looking for information.


John:
And in general, if somebody feels like they trust their healthcare provider, speaking to you as a, as the provider should I feel like I can't ask these questions or like you are in a rush to do whatever you need to be doing. I mean, these are discussions that we should be having. And as, as the patient and as the parent, we need to have these discussions with the providers, is that right?


Dr Todd Wolynn:
A hundred percent yes. And if your healthcare provider, isn't taking time to talk to you, I think you give them one more chance by saying, Hey, I have some questions. Can we talk about these? And they have a chance to either take some extra time and discuss it then or say, no, I really have to get out to the next patient, but let's email or find another way, or let's talk via phone and set up a call, which I think is totally fine. Right? Some days may be really crazy or somebody might be really sick in the next room and they may really have strong time constraints. There's nothing wrong with that. If they're willing to say let's talk tonight or talk tomorrow or at the end of this week, but if they don't give you an option to talk to them, I think it's completely reasonable to go and look for another healthcare provider who will answer your questions. I mean, that's, I want a healthcare provider that's going to answer my questions, but again, what we do and I mean, we do Facebook live every every Friday I do Tik Tok live every Monday night. We try and make a bunch of venues and through our Facebook page, we've had thousands and thousands. I think we're closing in on 10,000 questions over the last several years where we take time to answer them there. So we try and meet people where they're at because we recognize the 15 minutes in the exam room or 20 minutes, or sometimes even longer might not be convenient for the patient. Maybe they have to go pick up another kid from childcare, or maybe they have something they have to run do and just want to get the visit done and get immunizations or whatever the issue is they need to have address that day. So it's not just the healthcare provider that may be in a hurry that they could be the family members. So I think in 2020, we have lots of different ways to take time to talk to one another, but we do have to take time to talk to one another. And by the way, for families that have a lot of questions or even fear of particular treatments, including vaccines, I don't view that as, as wrong. I view that as somebody that wants what's best for their kid and needs to have time to answer those questions. Now the, how you meet the, those questions and how you spend that time can vary as I just described, but there's nothing wrong with having questions. The real issue I have and I, you and I talked a bit before we started, this was, you know, in 2017 in the fall, we posted a video about the HPV vaccine and that vaccines an amazingly effective and safe vaccine. But it, for whatever reason, through an HPV seemed to really trigger people that have strong anti-vaccine beliefs. And rather than when we, so we posted a video saying, Hey, did you know the HPV is truly cancer prevention? And it, it was a really popular video. It had 15,000 views. People were calling and making their appointments. And then three weeks after we posted it, the anti-vaccine community, these are not people with questions. These are people that were hell bent on attacking us, found the video and launched a global coordinated anti-vaccine social media attack on us over 800 accounts on Facebook posting over 10,000 times simultaneously attacking our ratings and reviews on Facebook, Yelp, and Google from all over the world. So it was Australia, New Zealand. It was California. It was Czechoslovakia. It was Ireland. It was Italy. It was all over the world. And it wasn't, hey, we have questions about this vaccine. It was you're baby killers. You're killing people. Didn't know us. Weren't even from our community, but they now use the tactics of swerving and attacking. And by the way they, they again oftentimes have very nefarious, ulterior motives. So those are the people that I would say really cause real destructive discord, but people with general questions, absolutely not. And their questions should be answered.


John:
Speaking of social media, Dr. Wolynn, where's the best place to find you on the web?


Dr Todd Wolynn:
Sure. Visiting our practice website, at www.kidspluspgh.com.


John:
Well, thanks. A bunch of Dr. Wolynn. Appreciate everything you're doing, especially as it pertains to the meningitis community. And thanks for joining me.


Dr Todd Wolynn:
I really appreciate the opportunity. And I think what you're doing is great to educate your listeners. So thanks for the opportunity to speak.

November 10, 2020

The Blind Life

 Sam Seavey, host of The Blind Life channel on YouTube, stops by to discuss Stargardt macular degeneration, iOS versus Android, Mac versus Windows, a personal hygiene tip and Simon & Garfunkel. 







Episode Transcript: 

John:
This is exciting. I've been looking forward to talking with you but to set the table a little bit, can you tell me about your vision and you know, your acuity and what you can and can't see, and just any details you want to share about that so we can understand where you're coming from.

Sam Seavey:
Yeah, yeah. So I have Stargardt's disease. It's I guess categorize as basically as, as a juvenile form of macular degeneration. And so I was diagnosed at age 11, started, started losing my sight then and it's been a slow progression, thankfully knock on wood. It's been pretty slow. My current acuity is well, I should say the last time I had a checked was about a year or two ago. It was 20/400 in my left eye, 20/800 in my right eye. And if anybody's familiar with macular degeneration, we, we lose our central vision. So we have large blind spots. And so we still have utilize our peripheral peripheral stays pretty decent. You know, as, as, as good as peripheral can be for seeing everything. And then I, you know, we have a little bit of night blindness difficulty in low light situations. Our colors tend to fade, so we have trouble with that, which is, you know, great makes, makes editing a lot of fun editing my videos. And but yeah, so I've been living with Stargardt's for well over 30 years now.

John:
And is that on the same trajectory? Has there been any change to it or is it still been the same?

Sam Seavey:
It's it still seems pretty gradual. Yeah. I'm very lucky. I've I've got a friend who she has Stargardt's as well, and she has these big drops in vision and they always kind of coincide with her having her kids. She has three kids and she had these big changes around the same time, which confirms that children just ruin everything. And I'm kidding, of course, but both fathers here. No, but so yeah, like I said, I'm pretty lucky. I think it's hard to tell. Of course, you know, it's, it's one of those things where you just, all of a sudden, you think, huh? You know, I remember five years ago, I could see this and now I'm, I really can't. But you don't notice it as it's going on really. At least with the slow progression that I'm experiencing.

John:
The one that you have that's 20/400 is pretty similar to me. I'm about 20/300 in one eye. I have zero vision in the other. So we're about the same that eye there. Yeah. What's the most common misconception you get when you tell somebody that you're blind or I guess you would consider yourself visually impaired or what do you consider yourself?

Sam Seavey:
Yeah, I don't, I don't have any problems. You know, some people get hung up on titles and stuff. I don't. I say blind all the time. It's just easier. I'm blind. Maybe I'm lazy. I don't want to, I don't want to do that many syllables, visually impaired. I just say I'm blind. I figure if, if the government considers me legally blind and then I'm fine with calling myself blind too. But I kinda it's, it's interchangeable visually impaired, legally blind sight impaired, partially sighted. I do it all really. But I think, you know, you're saying what, what's the biggest misconception people have they, well, I, I think, and I'm sure a lot of people can relate to this is the, the average public doesn't realize that it's a spectrum vision impairments, a spectrum. They think it's it's, they think it's in shades of black and white it's you could either see, or you can't see, or if you can't see a little bit, then it's okay, just get some glasses and everything's going to be fine. You know, they don't, they tend to not realize that there are some impairments out there that glasses can't help, you know, and I've kind of the sarcastic, sarcastic side of me comes out sometimes and it's like, Oh, I'll get glasses. That's a great idea. I wish I had thought of that.

John:
Yeah. I can relate to that. I consider myself ambiguously blind because if I tell you that I'm blind, as you said, just for sometimes simplicity, and then you see me riding a bike or you see me doing something that would, you know, contradict that. It's a, it's my vision. I find difficult to describe, which is why I'm doing this, this podcast thing, just to talk to people about their experiences, how they represent themselves and just that kind of stuff to where it makes more sense to me and maybe some others as well. What about mobility? I've seen some videos that you've done with canes, the white canes and your vision spectrum that you've been in. Has it always been canes or have you used other items or

Sam Seavey:
No? I, the cane really for me is, well, as I mentioned, I don't do well in low light situations. So a cane is very important for that. You know, if, if, if it's dark and I'm in unfamiliar areas, I don't have good depth perception. And so I can't judge the depth of a curve or a step. So I use the cane for that, but 99% of the time, it's just for identification. And this is what I talk about on my channel when I, when I'm promoting using the cane and, and, you know, people get in your canes and get out there and try new things. It's like the cane answers all the questions, you know, if I go into a store and I say, you know or for example, the restaurant, I go into a fast food place and I can't see the menu board on the wall behind the, the cashier. Um so when I walk up there and as you said, I, you know, all intents and purposes, I look perfectly sighted because I'm not running into things. I'm not using a cane to, you know, I'm not tapping it back and forth and all that. But so when I go in there and I say, you know, yeah, I'm sorry, you know, what are your specials or what are your combos or whatever. And I've actually had people literally turn around and look at the board and like it's right there. And so I, then I have to go into the whole explanation. It was like, Oh, yes, I know. I, I, you know, I, I know I don't look visually impaired, but I am, I can't read it, blah, blah, blah. And then you get people saying, well, why didn't you bring your glasses? And so, you know, just to solve all those problems, I had the cane, they take a look at the cane and, Oh, well, we have a, you know, a burger and fries is number one. You know, and it's like, ah, refreshing. I don't have to go through all that rigmarole you know, it's, it just takes care of all of that.

John:
Kind of like a universal symbol.

Sam Seavey:
It is, it is. I mean, and part of that, that's the good and the bad, because, you know, there is still a negative stereotype for the cane out there. It's a lot better than it was, and it's getting better all the time, but there still is. And some people, you know, still, still feel that and they're hesitant to use it. And so that's part of my, the goal of my channel is to, to help people be, be you know, embrace it and, and, and look at the positives and the positives definitely outweigh the negatives and grab your cane and get out of the door and do something.

John:
As it pertains to the condition of your eye, the Stargardt's disease. Is there any research or any kind of medical stuff that's going on that, you know, or think could possibly restore any of your vision?

Sam Seavey:
There, there are, there's a lot of clinical trials and, you know experimental medicine and all these things very similar to RP. So, you know, there's a lot of, a lot of hype around RP and especially I think sparks therapeutic, I believe is the name that kind of came out with their treatment last year or year before Stargardt's is, is related. So there is, I, I'm not fully up to date on it. I do know that it's, most of it is just to prevent more loss of vision. And then there are some that say, well, you might get some of your vision back and it was slight improvement. I don't believe, and I could be completely wrong, but I don't believe any of them are saying, we're going to cure it. It's going to be, you're going to be back to 20/20. I don't think that's possible, but for younger people, younger generation, and that it may be just recently diagnosed. There are treatments that will prevent them from getting as bad as I am now, but at the same time, I don't really keep up with it because I, you know, and this has been controversial on my channel, that I'm more in the camp of, I don't, I don't want to chase the cure. You know, there's some people that they spend all their times reading the blogs and the forums and, and what's going on today. What's, what's the news, you know, and I would just rather spend my life enjoying the vision I have and enjoying my family and, and, you know, getting out and cutting my grass and, you know, just the everyday life, I would rather, you know, live, learn how to live with my vision impairment and enjoy my life rather than spend all my days waiting for the cure.

John:
Yeah. I feel like we're on the same page there too. I don't want to chase. I feel like something likely will, will happen for a lot of people with the way technology and medicine is improving over time. I'm hopeful that that will be within my lifetime, but I don't have enough time to devote to that type of stuff without trying to live and, and be just successful at being who I am. And there's also a lot of, there's a lot of downsides to those trials and things too. And it's, it's when, when it's when it's patented and it's it's guaranteed to work and all that stuff, I'm, I'm definitely in, but in the meantime, I think I'm very well the way I am.

Sam Seavey:
Yeah. Yeah. And there's some crazy stuff going on. You know, bionic eyes and contacts with augmented reality displays in them. I mean, there's some really cool stuff not necessarily medical, but technological that, you know, could be, could help us in, in the future. Yeah.

John:
And that's the kind of stuff that you talk about a lot on your YouTube channel, which I don't know if we've mentioned yet is called The Blind Life. A question that I've been trying to kind of answer for myself from watching some of your videos is I can't tell if you're an Android or an iOS guy. So which is it?

Sam Seavey:
So here's, here's where I, I completely alienated half your audience. Let's go for it. Yeah. Cat's out of the bag Pandora's box has been opened. No, I've actually made tons of videos about this on my channel already iOS versus Android for the visually impaired community. What's better. I am, I am both actually, so I, but I'm, but I'm more on the Android side. I've always been an Android lover. Got my first Samsung galaxy. I think I had the galaxy four was my first phone forever ago. My first smartphone and that's no, that's no secret on my channel. I've got a ton of Android videos and things, but I, we were talking a little bit before the show that and I was telling you how I used to be an AT trainer. And so being a trainer, you know, being a good trainer, you, you need to be proficient on all the different operating systems so that you can properly train your clients. Um you know, you never know who's going to walk in that day, if they're going to want to learn how they use the Android, or if they're going to want to learn how to use the iPad. So, you know, you need to know how to use those. So I, I know how to use them both how to use both operating systems. And then in November of last year, I went ahead and bought my first iPhone. And so I use an iPhone for my work or for my daily driver. And I use an Android phone for my work phone. But I tend to still, I use my Android more because mainly, maybe because I'm familiar, it's familiar. But there's still so many things on iOS that just frustrate me to no end. I'm like, why, why, why can I not install a ringtone super easily and just download a ringtone and install it? And why do I have to jump through all these hoops to do this? You know, it just doesn't make sense to me, but but I, I won't, I won't go off on too much of a tangent cause I know you're an Apple guy.

John:
Well, I am an Apple guy and I think, I think Apple was first to the game for the visually impaired. For me was in 2009 with the 3g S that was the first model that came loaded with voiceover. And I've really had no reason to go otherwise or go anywhere else. And I think a lot of that is that I'm so comfortable with it. It does appear to be so easy to me and I don't have a big ringtone issue, like what you're talking about. So I'm probably not as, maybe as hardcore you know, Apple doesn't really let you hack their devices too much. So it's, you gotta pretty much use what they got, but for somebody that likes to tinker or change a lot of things, maybe maybe Android is a better thing. What's it called an Android? Is it called Talk Back?

Sam Seavey:
Talk Back, yeah. Androids screen readers is called Talk Back. Samsung for some reason has their own version of a screen reader. It's called Voice Assistant.

John:
Do you have a Samsung phone or device? Which one do you use?

Sam Seavey:
I kind of flip flop. I use talk back mostly if I'm doing something and talk back is giving me trouble. I'll, I'll jump over to voice assistant, but generally if one isn't going to read it, neither of them are going to read it. So let me, let me, let me clarify. Just so nobody out there completely hates me. I'll be, I'll give my, my reasoning for and what I, when people ask what's the better operating system for visually impaired. What I always tell them is that it depends. There's a lot of different factors. I'm not a one or the other kind of person about anything. And I think that comes from doing so many tech reviews on my channel. I have to, I have to look at the thing objectively and logically and weigh the pros and cons of everything. So when I, when I recommend a device, it there's a lot of different factors that need to go into it. Budget is number is maybe not number one, but as is definitely a huge one. A lot of people think, well, what should I get? And it's like, well, what can you afford? You know, if you can't afford a $1,500 iPhone 11, then it doesn't matter. You know, it doesn't matter how good it is. So budget is definitely, but my philosophy is if you, if your vision is to a certain point like for me, I'm still relying a lot on magnification and only a little bit on screen reading. So because of that, I lean towards Android because Android, as you said, is very customizable. I can make the icons really big. I can make the font way bigger than and it's also global which is something that drives me crazy about iPhone. But I can also have this giant clock on my home screen. I can do, I can just customize it to so that I can see it better a lot more. I also think Android has a better screen magnifier. It's just seems to be more intuitive. It's pinch to zoom all of this, but anyway, so, but if your vision is to a certain point where you're relying more on screen reading, I recommend iOS because iOS still, even though Android is getting close, iOS is still has a better screen reader. Voiceover just works better. It's it's the best in the game. And, and it's less frustrating. I'll say that.

John:
Well, that's reassuring to me. I, I rely mostly on voiceover on the, on the, on the handheld devices, the iPhone, the iPad and stuff, but on a, on a computer, I use magnification way more than I do a voice voiceover, just because the screen is so much bigger. And I feel like, I don't know. I feel, I think what you just said is what I also think is that, or what I have found is that voiceover really is, even though it has its quirks and things, and there was just an update a couple of days ago, and it messed a couple of things up that, that I didn't want to mess up. So you gotta fight through that type of stuff, but by and large I think voiceover is phenomenal.

Sam Seavey:
Yeah. Well, and with this iOS 14 update, they've upgraded or it got a pretty, pretty substantial upgrade voiceover. In fact, my video coming out Saturday is talking about all the new accessibility updates in iOS 14. And I talk about voiceover and it's voiceover recognition.

John:
Okay. So it seems to me like I've probably made a good choice for somebody that relies mostly on voiceover with Apple, but I really do want to try an Android device. I just, I guess I just need to get one and play with it. I have no reason to have two phones though with two phone numbers or anything, or two phone services. So I guess I need to get a tablet. What would be the tablet or I guess, smartphone you would recommend?

Sam Seavey:
I I really liked Samsung. I've always liked Samsung just because it has extra accessibility on top of Androids. stock Android's accessibility options for vision aren't that great. I mean, talk back aside and, and magnifier side, the, the, the font large text, isn't that large on stock Android. You've got the basics like color and version and things like that, but I mean, that's really about it. But Samsung adds in a bunch of other really helpful accessibility features and, and like their large text is way bigger than stock Android's largest size. So I've always liked Samsung. I've tried a lot of them. I tried all of them really as far as what to get you, you really want to get something modern though. That's kind of the thing is, is if you get an older device, it's kind of a catch 22, it's, you know, if you want to save money, you get an older device, but an older device, isn't going to have the newest and latest accessibility. It might have it on there, but it may not have the processing power to support it. And then your, your experience is going to be frustrating because it's slow and sluggish and things like that. So but Samsung has got some good tablets out right now and actually tell you the truth that Kindle can the fire tablets, Amazon fire tablet. I was really impressed. I did a review of that. And I was impressed with the screen reader. They call it a voice view and I think it had one of the most pleasing voices out of any screen reader I've I've ever tried. Yeah. And it was responsive and everything. So

John:
The Amazon Fire tablet?

Sam Seavey:
Yeah. And you can get them for like $70. They're dirt cheap. I mean, you know, or you pay more for the larger size, but they're not bad at all.

John:
Interesting. Okay. Well, let's either widen the gap or bring some people back by going through the Windows versus Mac discussion.

Sam Seavey:
Oh yeah.

John:
So I use Windows, I think you do too.

Sam Seavey:
Oh, well that surprises me. I was going to, I was pegged you for a Mac guy.

John:
Now see. Don't judge a book, Sam.

Sam Seavey:
Well, how do you change? How do you transfer stuff from your iPhone to your Window? I guess you use iTunes.

John:
Yeah. iTunes. And I'm a huge music fan and collector, which is something I want to talk to you about a little bit later too, but I have a massive iTunes library and just through iTunes, which I think they're trying to kill while on the, on the Windows side. But yeah, it's pretty simple.

Sam Seavey:
Unless you're coming from Android and then I could, I was just having it was so frustrating trying to figure it out that I eventually just bought like a $30 app that made it so much easier to transfer pictures and video from my phone to my computer. Yeah.

John:
Pictures are difficult. I will, I will tell you that I don't like that music and stuff is very easy. And if you, if you want to transfer photos, Apple makes it pretty easy. Also, you can just synchronize folders on a, on a PC through iTunes, but it doesn't give you the full access to the file. It's a, it's a totally, that's a rabbit hole I could go down. So it doesn't really make it, it doesn't, it's, it's difficult to describe, but you can get them on there. But I, with photos, I agree. It could be much easier.

Sam Seavey:
Okay. Well, I just bit the bullet and got this, this app Simple Transfer. It works perfectly, and it's so easy. And you know, for my videos, I do a lot of screen captures on my phone and like my, my next video coming out I recorded the whole thing on the phone and then had to, you know, so just to be able to easily transfer it, it's like, you know what, it's, it's worth it. It's worth 30 bucks to not have to deal with with trying to figure it out. Yeah. Yeah. Simple transfer you, you download it on your PC and downloaded the app and they talk to each other and, and transfer it right away. And it works great.

John:
Yeah. That's probably a lot easier than, than going through the iTunes route. Okay. So Windows, you use Windows, exclusively?.

Sam Seavey:
Yeah. and just because I think, well, a lot of this, you know, I think it all stems from what you started on, you know, if you started on a Mac, then you're going to be a Mac person and an Apple person. I've always been on Windows and the, with the last couple of updates to the accessibility it's really, really strong in accessibility right now. As far as magnifier and Narrator is Narrator used to be the joke in the screen reading world, you know, Windows Narrator, really. But they've improved it a lot and it's actually a capable screen reader now.

John:
How recent are those updates with the Narrator? Like within the last six months? 12 months? Two years?

Sam Seavey:
Yeah. They're yeah. They're, you know, they're doing their spring and fall updates. And so it's, it's with it. They've slowly been picking away at it with over the last two years, probably.

John:
Okay. So I use a program called ZoomText. Are you familiar with that? So I've used that for 22 years, always as an overlay on the Windows. And I don't like it. Yeah. There's a lot of things about it that are frustrating, but at the same time, I don't really want to getting to the point where I don't want to really learn something. There's a lot of errors that occur. They're getting better. I mean, I, I shouldn't say I hate it, but it, it, it leaves a lot to be desired. Maybe is a better way to say it. And I feel like I've seen you do a lot of stuff with Narrator and not to mention that the, the license for, for ZoomText is close to 500 bucks a year, if you want to buy the newest updates. And that's, what's so great about iOS with voiceover and the magnifier built in it's there, it's just there. And I feel like Microsoft has made a lot of changes to the accessibility things that are built in, but I just need to make the jump, I think, have you ever used anything from ZoomText or any other magnifiers?

Sam Seavey:
Yeah, I was a ZoomText user for many, many years. Zoomtext fusion was the last one I used. And, and mainly because I stopped because there was an update and I had just bought the program and then an update came out and that's when they, they switched over from using what was it called? Magic eyes? No, what was, I forget what their screen reader was called prior, and then they switched over to using Jaws and they wanted me to pay another $300 just for the update. Like I just spent all this money on this. So I, I, I was also a a Windows magnifier user from back from Windows seven. And this was actually, I was using it at work ZoomText at work, being a trainer. So I just, you know, I'm not just gonna be full-time Windows, magnifier user, and they've improved that a ton. They've got speech in included into Windows magnifier now. So I can be magnified if there's a section of text, I need to read, I want read out to media, I can just click a button and it will read it line by line or read the whole section or you know, they've got the edge shading or edge smoothing on the Windows magnifier. Now they've included different colored cursors. You can customize the size of the cursor. They've really done a ton of stuff.

John:
Is it easy to toggle the magnification on and off?

Sam Seavey:
Oh yeah. Yeah. Cause you can, you can do the keyboard shortcut. And I should mention that I've got videos on this stuff. Everything I talk about, I've made a, how to video on it. So if anybody wants to know, you can search my channel, but the hold down, the Windows key and the plus and the minus. If you have a keyboard with a, with a number pad it's super easy and you get really, really good at just doing it by feel, but what I've done is I have mapped those keys to the thumb buttons on my mouse. So I don't have to take my hand off the mouse. Now that was the biggest drawback. You know, I'd have to slow down your predict productivity. If you have to take your hand off the mouse to zoom in and zoom out on a keyboard. So now I don't do that. I just click, click, click, click, click, click, zoom outs. It's really, really cool.

John:
Yeah. I need to try that. And Narrator and magnifier, the thing that frustrates me with ZoomText, they've, they've come a long way, but a few years ago they changed the, the, you know, I use a lot of the keyboard shortcuts and they changed the, the main key for shortcuts is the caps lock key. And that's fine when ZoomText is on, because it doesn't register the caps lock Windows, doesn't see it until it's off until ZoomText is off kind of thing. So basically I get caught in this loop where my caps lock is on half the time. And I don't know, and I'm constantly, and you got to hit the caps lock key twice to turn it off and to turn to turn caps lock off. And it, it is a whip, it's a whip. I fight through it every day. And that, that will be the reason I leave ZoomText that right there.

Sam Seavey:
Well, and ZoomText is a very heavy program, very graphically heavy. So if you, I would not be able to use it, you know, with my editing software and my I use DaVinci resolve is my editor and I use Adobe after effects for my motion graphics. I wouldn't be able to use, and sometimes I have these things all open at the same time and if ZoomText was running. Oh, my, it would be like, just like trying to wade through molasses.

John:
Okay. So other than the smartphone, what is the best piece of technology you've reviewed or that you use on a daily basis?

Sam Seavey:
Other than the smartphone? Because that's usually my default answer.

John:
Yeah. That's mine as well.

Sam Seavey:
Could I, can I say the computer now? That's, that's kind of a cop out that I've reviewed. Well, see, I tend not to try and like play favorites. I have there's certain devices. So the, the wearable devices tend to be really hot right now in, in the world of AT. And they're great. And the VR style using the Samsung gear VR and Samsung phone tend to be the best that works for me. So I've, I've tried all of them. And that style, that combination of, of hardware tends to work the best for me. And there are several out there on the market that are using it. So I guess, I guess I'd say that in fact, I just talked to a little boy. I'm pretty excited. Talked to a little boy named Owen who's lives down Florida. And he has, Stargardt's just like I do. And he has his own YouTube channel. Give him a shout out outdoors with Owen. He has a fishing channel and he's, he's amazing really he's I think he's in sixth grade. So pretty young. I think he just started sixth grade and he is amazing. His knowledge about fishing is incredible, but he's, he's struggling. He's, he's a young guy and he's visually impaired. And you know, you probably, I don't know. What age were you when you were started losing your sight or?

John:
I was 19. I lost mine basically overnight. Okay. I didn't have any warning on mine.

Sam Seavey:
Okay. Well still, still young, 19, still young. So I'm sure you understand. You can, can relate, you know what it's like. Absolutely. Yeah. So he, he's going through a hard time. So I'm trying to help him. I did a zoom call with him and his mom last night and stuff, but I have an Irish vision which is one of the wearables I was just talking about and I have an extra one and I'm like, you know what, I'm going to send it to Owen because I think that's gonna be awesome for him. He'll be able to use it and be able to see out and see the birds and stuff out. And he lives right, right on the water down in Florida. And I think it's going to be great for him. So I'm excited about that.

John:
All right, let's go the other direction. What's the best piece of low-tech gear you have. And I should say, like, I've seen on the video, you've done the flashlight or you dropped something on the, on the ground and you just get down there with the flashlight and pan around for it. And it oftentimes will, will magically appear. Yeah. Yeah. That's genius.

Sam Seavey:
Well, and see, it's like, that's, that's the whole, the main focus of my channel is teaching people, these little tips and tricks that unless you're living in the visually impaired world, you maybe don't realize these things. And if you're new to the world, the, the world you know, no one's ever told you these things. So, so that's the goal of the channel is to, to share these little, little tidbits of knowledge, these little blind life hacks. But I'd say for me personally, it's my magnifier. I, I have a magnifier. I, I, I have the same style I've had for about 25 years now. It's an Eschenbach little pocket magnifier right now. I'm at the largest strength, the highest strength they do, which is 12 times, I believe it is. But it's, it's with me at all times. It's sitting in my pocket right now. If I go to sleep, it's on the nightstand. If I to take a shower, it's on the bathroom counter, it's always within reach. And if I leave the house, I actually have, I never leave the house because I have extras positioned, strategically positioned throughout my life. But if I, on the rare occasion that I do leave the house without one, I feel like I've left one of my legs at the at house. Because I rely on it so much. I mean, that's how I read my phone with it. Any kind of anything, I read anything with it, try to read anything with it. So that's probably it, my, my little magnifier, Maggie, Maggie. Yep.

John:
All right. Let's talk about the blind life channel. How long have you been doing that?

Sam Seavey:
So I started the channel in 2013, December of 2013. And at the time it was called the blind spot which was an homage to my vision impairment. And it was, I wanted, I wanted to create a channel that people could come and learn about real life living with vision impairment. So I, you know, I wanted it to be a literal blind spot on the internet. And I thought that was pretty clever. And when I came up with that name.

John:
That is clever. Yeah. But you probably ran into that. Had already been used maybe or some licensing issues or something.

Sam Seavey:
I got it. I got a nice letter from some lawyers one day. And this is probably about three years ago and some company up North that wasn't happy about I guess my popularity and in the, in the community and people contacting them, asking about me. And so, yeah, they, they sent me a nice letter and told me I had to change the name, which I was pretty bummed about at the time, because the blind spot was my baby. I've been, I've nurtured her and grown her for, for like four years at this time at this point. And so I was pretty upset about having to change the name, but in hindsight, it wasn't that big of a deal. And I think, you know, looking back, I think the name, the new name fits it fits the channel better anyway, fits, fits the theme of the channel.

John:
What's the coolest thing about creating on YouTube.

Sam Seavey:
It's definitely the community it's, it's interacting with. You know, I grew up, my sister's visually impaired too. She has the same eye condition I do. And so until I was in high school, I had never met anyone else who was visually impaired, let alone full on blind. And then I actually went to a summer program at a school for the blind. And that was the first time I was really around kids like me and other than my sister. And I ended up going there for my senior year and I graduated from that school. But even after that, you know, this was all pre-internet. So there was no way to jump on a Facebook forum or a group and meet other people like you. So since doing the channel, doing the YouTube channel, I have met just tons of just amazing people huge Stargardt's groups and community. I mean, I was on a phone call with a guy on a zoom call with a guy in Hong Kong this morning, and that's a direct result of the channel that, that never would have happened to me in my life, you know, without the channel. So I'm very, very thankful for that.

John:
What's the most popular topic or subject amongst your viewers.

Sam Seavey:
It's definitely the, the assisted technology. So I, my channel, generally, I cover just about anything having to do with blind life on my channel. You know, I mentioned I do tips and tricks videos and how to's and things like that. But my, the main focus over the last couple of years has been assistive technology and reviews and things like that. And so that's definitely as far as viewership and numbers, the, I get the highest numbers on those types of videos. So AT review videos and things like that, although every now and then there will be a video that I, when I made it, I just assumed it was going to be a throwaway video. It's like, you know, I need to, I need to make a video this week. I'll just do this video. Nobody's going to care about it. And it's just another video. And then I can focus on something more important next week. And then those videos end up just striking a cord for some reason, with the community and having a big reaction. Like I made a video once on how to brush your teeth, how do blind people brush their teeth? If you can't see the, the end of the toothpaste or the end of the toothbrush, how do you put the toothpaste on the end of the toothbrush?

John:
Yeah.

Sam Seavey:
And the video was conceived. Just be a conversation I was having with, with my boss at the time we were talking about this and I was telling her how I do it. And she's like, Oh yeah, that's how I do it too. And, you know, I thought, I wonder if everybody does that, I'm where I should probably make a video. And so the trick and John, do you, do you know the trick of how well, how do you do, how do you brush your teeth?

John:
I put the yeah, it is a strange question. I know we were going to get this personal Sam, sorry. I put the toothpaste directly in my mouth.

Sam Seavey:
Exactly. Right. You just scored it right in your mouth. And I thought, well, surely everybody does that in the blind community because it's one of those, those things that you just naturally organically figure out. But no, it's, I've had people, some just the most amazing response to that video. I've had people say, you saved my life with this video. You know, you saved my marriage. Wow. I know. It's just like, this is just some, some dumb little video I've made one day. So you never know, you never know what's gonna, what's going to click.

John:
Yeah. It's funny. You mentioned that because I that's what I do. And I just figured that out. And there were so many times where I was trying to get the toothpaste on the toothbrush and I was like, this is ridiculous. It's gotta be a better way. And I don't remember the Eureka moment where it happened, but I've been doing that for quite some time. Yeah.

Sam Seavey:
Yeah. Yeah. And the only drawback is you can't share toothpaste with anybody else. But that's not, that's not a big deal.

John:
Really a drawback, because I don't know that you should be sharing toothpaste with anybody anyway, you know, not in this day and age that's for sure. Okay. Well, there were really two things other than all the reviews and the Windows and the, the Android stuff that I was intrigued by you, there was really one video in particular. And then some of your merch that really drew me to you. I was like, man, I want to talk to this guy. So the video that drew me to you was the Sound of Silence video. I mentioned that I'm a huge fan of music and I like Simon & Garfunkel. Then I have that album actually Wednesday Morning, 3AM is where that song comes from. Share that story briefly with, with the audience.

Sam Seavey:
Yeah. So I, the way this came about was just a viewer sent me an email and said, you know, I thought you might be interested in this article. I thought it was really cool. And you might want to share it with your, your audience. And oftentimes, you know, if, if, if I, I think it's a good, I, you know, good idea that will resonate, I will. And this was one of those times. But basically the article was from the Sandy, Sandy Sanford, I think was the gentleman's name, who is a college friend of Art Garfunkel's roommates. And they, I think shortly the way the story goes is shortly after they became roommates, Sandy started to lose his vision. And so the song is inspired, I guess, loosely inspired by this relationship between our Art Garfunkel and his, his roommate, Sandy, and how Art used to take care of them, basically help them out, walk them to class, all of this. And so art would refer to himself as the darkness. And he would say things like, you know, the darkness is here to read, read to you and things like that. And so that's where the iconic line, hello darkness my old friend apparently came from. Now, I've had some people in the comments, kind of argue it saying that Simon came up with it all by himself, but you know, this was the article. This was this, this gentleman's memoir. So you know, w who, who's the, who's the, no, it's a, it's still a nice story. I think though.

John:
It's really cool. And I've gone back and listened to that song many times since, since seeing that video, which we should note is no longer available. You know, and I got to tell you, Sam, you're not doing it right. If you're not getting copyright notices occasionally right on YouTube, you know, change your name. You gotta take some things down, but you're not, you're not doing things right. If you don't get, don't bump into a few of those situations over time. Right?

Sam Seavey:
I'm not a true YouTuber. If I don't get in trouble, I've been pretty good. I've, I've only gotten one once before. And yeah, so I got a copyright claim. It wasn't even a strike. It was a claim. And they gave me some options on what I could do. I could mute the music, which wasn't possible and some other things, but ultimately the video had been up for a week and had already been viewed well over a thousand times. And, you know my videos tend to kind of plateau after that. So I figured enough people had seen it. The easiest thing would just be to take it down. I was, I didn't have the video monetized anyway originally because, you know, I didn't want to, I, I did it didn't feel right to monetize something like that. So I just like, you know, and I'll just take it down and I am going to re upload it this time without the music playing in the background. And it wasn't even the actual song, like the official song. It was a cover that someone else on YouTube had done. So I thought I'd be okay. I thought I'd squeak under the radar there. But yeah,

John:
It was just an instrumental version, I think, too, wasn't it?

Sam Seavey:
Yeah. Yeah. It's beautiful. Beautiful. And I even gave credit in the description for the, the, the video Brooklyn Duo. They they've got some amazing music videos, so, but I guess there wasn't enough.

John:
Well, the other thing was, was I was scrolling through your channel. I saw your merch and I saw the shirt I can see, but I can't see. And I thought, man, that describes me so well, I think that's a genius T-Shirt how'd you come up with that?

Sam Seavey:
I didn't that wasn't my design or I, that wasn't my, I didn't come up with the saying, I saw it somewhere on Facebook. Someone said it a forever ago and it just kind of stuck with me and I thought, you know what? That would make a great shirt. And so, yeah, it's, it's definitely my most popular shirt and because it says I can see it, but I can't. And then underneath it says, hashtag it's complicated. And because it's so perfectly explains most of us living on the spectrum, you know especially when you walk into the store and the restaurant and you, you can't read the menu and they're like, what, but why? Yeah. Yeah.

John:
Wow, That's genius! I'VE got to get myself one of those.

Sam Seavey:
Yeah. Yeah. But I've got, I've got, I sell on Amazon and I on Teespring and I've got like 50 different designs all designed myself, you know, and, and coming up with designs and all having to do with low vision, some, some ironic or some sarcastic, some, you know inspirational, I guess you could say a lot of humorous ones. Cause I'm I'm yeah. I'm sarcastic person. So, you know, like you don't look blind. I was like, well, thanks. I guess, okay. You know? Yeah.

John:
Well, you got to have a sense of humor about things, so it's a good, it's a good way to be.

Sam Seavey:
Yeah. Well, that's the other thing about my channel is, and I've been, I've been criticized for not or kind of glossing over the negative side of vision loss. And I say, yeah, guilty. I, I, you know, nobody wants to go on YouTube and watch somebody complain about something for 10 minutes. You know, you want to go on and, and escape from your daily life and feel good and enjoy and entertain, you know? So we all, we all live it every day. We all know what the negatives are. I, you don't need me to tell you let's talk about the ridiculous stuff. You know, I have a whole series on my channel called why it sucks to be blind and it's, it's the humorous side. And so it's, it's like one episode will be reason. Number 34, why it sucks to be blind. Well one for example, that I just came to mind as we have these Bradford pear trees in my neighborhood, and they're beautiful. They lined the streets and in the springtime they flower. So these beautiful white trees all the way down the streets and things like that, but they stink rotten fish is what they smell like. So the entire neighborhood smells so bad for about a week. And so I say reason why number 32, why it sucks to be a blind. I can't enjoy the beauty of these trees like everyone else, but I can probably smell it worse than anybody else too. I noticed that smell. So it's little things like that.

John:
Yep. I can relate to that as well. So where's the best place to find you, it's a blind life on YouTube. Are there any other locations?

Sam Seavey:
Yeah. Yeah. So The Blind Life on YouTube, the URL is www.youtube.com/theblindlife. Or if you just Google The Blind Life, you'll find me. And then everywhere else. It's theblindlifesam. So Facebook, Twitter, Instagram, and also my email is theblindlifesam@gmail.com. And I'm very, very soon will, will have my website finished, which will be the culmination of all my stuff will be right there.

John:
Awesome. Look forward to that, Sam. Thanks for visiting with us.CV

Sam Seavey:
John. It was my pleasure. I had a lot of fun.

November 03, 2020

Q&A Two

 

Erin, is back! She confronts John about the "out" and they wrap up the story of how they met, discuss meningitis, the mindset of being tremendous and faith. 


Episode Photos: