TWG Lindsey Ball
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Cheri: [00:00:00] Welcome to The Writing Glitch. This is Cheri Dotterer.
Today, we are here with Lindsey Ball. She is an athletic trainer with a specialty in biomechanics. She found out A couple of years back that she has Erlos Danlos Syndrome, which both of my children also have. We have this connection and I'm very intrigued with what she is studying right now. Lindsey, welcome to the show and tell us a little bit more about what it means to be an athletic trainer.
Lindsey: I've been an athletic trainer the last eight years. You get to work with all sorts of different populations, different types of injuries, backgrounds, everything with people of all ages. So I've worked with kids in high school, fifth through 12th grade. I've worked with professional sports, co ed professional sports.
Cheri: But post injury that usually gets sent over to the therapeutic therapeutic end, so that would be like the physical therapist, [00:01:00] so if there's like an acute injury, they go that way? Is that the idea?
We actually are anywhere from emergency medicine, so straight on the field, and we do diagnosis and treatment of injuries, and we can actually do all the rehabilitation in house.
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The world has changed in sports medicine so much. So let's back up. I mentioned the words Ehlers Danlos Syndrome a little bit ago, and that's what I really wanted to talk about today and how it relates to kids writing.
Can you share? A little bit about what you're willing to share about your experience. How did you even figure out what Ehlers Danlos was and tell us what it is for that matter, because there's so much more that I don't understand about it.
. Ehlers Danlos or EDS is a connective tissue disorder.
There's 13 subtypes. The original diagnosis was just one [00:03:00] type and then up until 2017, there was only five types. I was diagnosed in 2015. I had a lot of injuries. I had a lot of stuff going wrong. Taking notes in class was super painful for me. It was just What was happening? I played collegiate sports and so we just didn't have any answers as to why I was sick or getting injured all the time.
My mom started doing some digging and that's when she stumbled upon this connective tissue disorder. She spoke to my primary care physician at the time back at home while I was away at school and she was like, that actually makes a lot of sense for everything that, she's been through since I was taken under her primary care.
When I was like, 5 or 6. We went to genetics, got tested that came back positive or the genetic mutation for EDS. My brother also got a diagnosis. He also has, he's also [00:04:00] marfoid he has a partial Marfan gene, has Marfan characteristics, but also has EDS.
Cheri: They were measuring Michael for Marfan. Marfan has something to do with the length of your arms compared to the height of your body, that your arms are unusually long. Am I, is that right? Okay. You say there's 13 subtypes. You have to go into which one that you are. My son and daughter were just diagnosed with hypermobility.
Their joints are very hypermobile . My daughter can dislocate her shoulder intentionally and lick her elbow. I should have known way back when she was little and did that for the first time that I knew something was wrong.
We tried to get her into gymnastics, which I think did her good because it kept her connective tissue working, kept it mobile. She left Penn State [00:05:00] cause she graduated . She left gymnastics and hasn't been as mobile since then.
Lindsey: Marfan's is another subclass of connective tissue disorder. It follows under the Loewe Dietz disorder as well. So there's this connective tissue research on that's coming out to explain a lot of.
Different things that are people being, that are being diagnosed with,
Cheri: how does it impact kids that little kids? What does it look like for if you're a parent, and you've got a child who you don't even know has this syndrome, but yet their writing isn't up to snuff, and they keep doing behaviors that are really odd.
It's a connective tissue disorder. One of the things that I have heard, and I can't do it so much as some of the kids, but even my kids can do it better. Like their joints go 90 degrees [00:06:00] the wrong way. Yeah, that. Yeah, that's the one. And they're, when they're writing their, that their index finger, which is supposed to be controlling the pencil, It wobbles all over the place, and then the writing gets really funky.
That's not the only thing that can happen. What are some other things that a parent might see with a young child who has the potential of having Ehlers Danlos Syndrome?
Children are flexible in nature anyway, as in the athletic training world, we like to call them little rubber bands because they snap back so quickly, but with kids that experience a connective tissue disorder of sorts, from my experience, , I dislocated both kneecaps by the time I was in 8th grade, and it was just super rare things of such that would happen .
It's, somebody called my name, I turned around, there went a kneecap. It's just like my handwriting has never been great. My [00:07:00] parents tried all those handwriting tools with the little puffer thing that goes at the tip of your pencil, but I still write weird to this day and I can't write correctly.
I have hand pain that I've always had and never noticed with taking notes or writing papers or doing everything like that. Finding those unique things that you just can't. Oh, that's odd. That was never, that's not normal. I never did that as a kid, it's a step, in the right direction of maybe there is something that we should check out.
Cheri: I'm glad that you included the hand pain because I know one of the things that a lot of kids complain about is hand pain. We need to think about distinguishing hand pain that's related to a connective tissue disorder from hand pain because of. stiffness that's not related to a connective tissue disorder.
One of the things that my daughter talks about is the fact that her muscles [00:08:00] are over tense all the time because she's trying to stabilize her joint. That's a different kind of hand pain than what a child might feel that's just has an overworked hand. Can you describe the difference?
, I guess from a personal standpoint if my hands were just tired and just overworked it felt way different than what my classmates would describe my hands almost feel unstable, like, when I'm writing with a pencil even in today's world in healthcare taking notes or writing stuff for patients, my fingertips bend too far back.
Being able to control the pencil like that, or, my thumb sublux is my knuckles sublux, which is pretty rare to find. Normally it's your actual finger joints, but my knuckles sublux I found that out in college.
Cheri: What that means is a [00:09:00] dislocation what I was describing with my daughter's shoulder.
Sublux is another term for that.
Finding braces or something that would control the corrective movement and not causing too much hand pain, but you just learn to deal with those things when you have something like this.
Cheri: I'm thinking about is like a figure eight ring.
It's a ring that goes over your fingers and it has this ring that goes here and then there's a ring that goes here, stabilizes the joint. Is that the kind of brace that you're talking about?
I do have a few of those for my fingers, but I actually had a designed brace for my knuckles to individually and then it's a solid piece that would go on the back and then wrap over my wrist.
Cheri: If we take this to the knee, it's like a knee brace on steroids. Yes. Yes. A knee brace for each [00:10:00] one of the joints of your finger. That is pretty intense. Out of curiosity, was that an occupational therapist who created that? Yeah, go for it, hand therapist. Yeah, it was. If you struggled all your life, what are some of the compensatory strategies that you've developed so you don't have to write over long periods of time?
What are some things that you did in elementary school, middle school, high school, and in college? Divvy it up a little bit because I'm sure you wasn't the same thing the whole time.
No Elementary school, I had to get those really fat pencils because I could not hold steady a regular pencil, mechanical pencil, any of those.
Cheri: But they were short and fat, right?
They were actually the big tall ones.
Cheri: Big tall ones, okay.
That's what we'd have to get for me in elementary school. And the bulky crayons. , [00:11:00] because , I couldn't control a regular crayon. In middle school, I got all of those fun, fancy gel pieces to put up the tip of your pencil or the squishy foam ones, and I even had some of those tripod grip things to go at the end of your pencil, because we write all the time.
In high school I , I found some special red, black, and blue pens on Amazon . Or I would find in the Staples store that were a little more bulky. That's what I would use. I really like
Cheri: these. Today you're using a fatter barrel pen than the average, I'm guessing.
Yeah.
I like these paper mate. pens these kind of bulkier sided because I can hold them a little bit more firmly.
Cheri: This is contrary to what I often recommend for kindergarten, first, [00:12:00] second, sometimes even third grade students, where I'm recommending golf pencils, which are shorter. and the smaller barrel. I like the hexagon shaped ones rather than the round ones because that'll often just flip around in kids hands, but the hexagon gives that a little extra barrier.
So I want you, the audience, to hear that many times I am recommending golf pencils. However, if you've got a child with potential Erlos Danlos Syndrome, and their joints are constantly unstable. Lindsey is suggesting that the larger barrel might be a better choice. Golf pencils are going to solve this for every student.
This just proves it.
Yeah. And I tend to buy the big boxes of the big paper mate pens because they are bigger [00:13:00] barrels and I'm able to control those better.
You have them around when you need them, how do you tolerate keyboarding? Do you get fatigued ? Do you use a specific keyboard, like a mechanical, or do you use the one that comes like with a laptop that you barely touch?
Cheri: What's better?
I just have on my laptop here just the regular laptop keyboard that's attached. That's nice and easy to touch. I'm also a fast typer so my fingers do get fatigued especially when I'm writing like manuscripts or papers.
I have to take continuous breaks but I feel like the ease of the keyboard pads are a little easier for me to like press down.
Cheri: One of those high end gaming keyboards that's a mechanical is going to just fatigue your fingers fast.
Yes, is what I have found.
Cheri: Yeah, my son's the opposite. He absolutely finds that the mechanical keyboard is better because that tension that's [00:14:00] created adds stimulation to his fingers. So he knows he's pushing the key. He can't feel the other keys, if that makes sense. I guess that has to do with the amount of proprioception you have in your joint.
, I have one of those new mouse pads that are like the big bulky ones that have the big hump on them and like the foam.
Cheri: Oh, okay. You're going to have to show us that one.
Yeah.
Cheri: If you have it handy.
I have my old one. I'll have to send you a picture of it.
. It is corrective. So you don't have this crooked. Up down, instead , this one is actually real big and bulky and has it's almost very thick.
Cheri: So that you can use a regular mouse? Or
and so I don't have to , cock my wrist up a certain way, and because my wrist hurt if I'm sitting in too much of a cocked position, I use these new more bulky mouse pads.
I [00:15:00] use, a normal
Mouse. But I buy the bigger, mouses that are the gaming mice. But this mouse pad that I have found is a life changer.
Cheri: I think we're going to have to share it and I will put A link or some kind of identifier in the show notes for you guys that are listening to this and you're going, what is she talking about?
We will definitely get that information to you. Any other quick thought suggestions that you have when it comes to adaptations for writing?
I don't think so. I think it's just finding out what fits you. I did a lot of trial and error. Finding out, especially in college I'd buy probably eight packs of pens to try and find out which one I liked the best, because we weren't allowed to write with pencils in the athletic training department.
[00:16:00] It had to all be pens. And trying to find a pen that worked was a big hassle for me. I found one that worked and I've just continued to use that.
Cheri: That's what you got to do. As far as college goes, did you have a lot of accommodations for college? Your writing or did you grin and bear it?
By that point in time, you knew a lot about what was going on with your writing skills.
I just dealt with it. I never really said anything, but I knew I would have to take extra time to write out things or if you write a soap note.
It took me almost twice as long to do and I would have to make multiple copies as I'd chuck one off the desk because it hurt or like my writing started to go sideways it wasn't until grad school that I started putting adaptations and getting a note [00:17:00] that would allow me to take that extra time as needed.
Cheri: Listen to what she said. She grinned and bared it during undergrad. It wasn't until she was in grad school that she went for the accommodations. Not my recommendation. There is a way when you are in 11th grade to have a 5 0 4 an IEP converted to a 5 0 4 so that you can prepare for college.
For those of you who are looking at the high school level and how to prepare for college, you need a 5 0 4 in place and you have to do that in 11th grade. before they sign that acceptance to college so that they can then take it to the Department of Disabilities at the university and get accommodations.
Lindsey, did I tell you about my daughter's accident when she was a senior at the [00:18:00] university? She ended up with a concussion. One of the things that they did for her is they gave her a pen to record as she was writing, it also had some auditory recording, and then somehow or another, this pen then did a transcript.
The actual class compared her notes so that she had her notes and the transcript from the class notes in some kind of software, I'm guessing, that she could compare the two and she was able to finish her senior year with that accommodation. And that pen did make a difference. She had to give it back when she was done with college,
she was doing a lot more keyboarding and not as much note taking, but she did have that availability. So there is that kind of tool out there that will record, but you [00:19:00] have to have a note from the Office of Disabilities to record class, unless you get specific.
teacher approval to record the classes. We can't record a lot. A lot of teachers are funny about that. Would you come, would you say that you agree with that?
. My master's was at a university that was very welcoming to accommodations.
And I didn't have to fight too hard but when I moved up here to where I am now it, sitting in person classes were a little more hard more difficult to get those accommodations that you need.
Cheri: And those accommodations will flow with you through to when you're out working in the field. You can have accommodations as an employee in a workspace depending on what happens in the future. Good luck to you. How [00:20:00] soon will you be done with your last degree?
I have one more year of classes and then it's on to my dissertation.
Cheri: , so you're about two and a half, three years away. Congratulations. More power to you. Good luck with everything. And I do believe you told me before that your dissertation is about Erlos Danlos Syndrome in athletes. Cool. Before we go, how do people reach out to you if they want to learn more about Erlos Danlos Syndrome?
I can give you my email address and then we can also attach my information as well to the paper that I've already just written and published as well, if that's of interest to anybody.
Cheri: Fantastic. And I found that paper through Erlos Danlos News. That's how we connected,
Thank you for sharing your understanding and your knowledge about Erlos Danlos Syndrome. I know this was [00:21:00] an unusual topic to have here on The Writing Glitch. I hope you listeners found it very interesting. And if you did, please write a review and subscribe to the podcast so you don't miss the next episode.
Thank you for being here, Lindsey. Thank you for being here. Go be awesome. Be brilliant. And remember you were put here for such a time as this.
