Maddie can walk again! A POTS Diary follow-up

Jill Brook: [00:00:00] Hello, fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of POTS Diaries Updates with a very exciting update from Maddie, who was with us in Episode 83. Maddie, thank you so much for being here today.

Maddie: Yeah, I'm excited to be here.

Jill Brook: So last we left you, you were in Upper Michigan, you had a wonderful service dog, and you were blacking out a lot. Is that your memory as well?

Maddie: It is.

Jill Brook: Okay, so hopefully everybody will go and listen to episode 83, and if you can give us a little bit of maybe 30 seconds about what state you were in when we last talked to you, and what has happened since then, that would be great.

Maddie: Yeah, so I'm still living in Michigan. I'm 18 now. The other podcast was a couple years ago, I believe. Now I still have my dog. He [00:01:00] doesn't do public service work anymore. He developed an anxiety that impacted his ability to do tasks. So he still helps me at home, not so much in the public setting.

I'm not blacking out near as much, thankfully, about once a month. So that's good improvement. Overall, I would say I'm a lot more functional than I was then. I've had a decrease in POTS symptoms, and then what I didn't really focus on last podcast, I was also dealing with a lot of mobility challenges.

Those, I would say, probably, honestly, got worse after we last spoke but then with some recent treatments, have gotten significantly better, and so those symptoms are less, POTS symptoms are less, neither are cured as expected, but a lot better and a lot more functional now.

Jill Brook: Yeah, so after we had spoken to you, we had said, you know, let us know if anything interesting happens, and I think before you got in touch with us, you actually stopped being able to really walk, right?

Maddie: Yes.

Jill Brook: Yeah, do you want to talk about [00:02:00] that?

Maddie: Yeah, so it was kind of, I, I started in 2021, in January. My POTS symptoms began, I got a lot of dizziness, the fainting all those stuff that we're all too familiar with. And then I didn't have any change in my movement patterns at the time, but I would say like my lifestyle was a little bit more sedentary just because it was so hard to be upright.

And then about six months later, so I think it was August of 2021, I started having more issues with my mobility and changes in my movement pattern. That was kind of the start of like, these abnormal movements and gait patterns and stuff, and that progressively got worse until until I went into inpatient rehabilitation, and that was in February of 2023.

Jill Brook: So, can you say it in plain language? Like, I know you're talking about, like, some mobility issues and movement patterns, but, like, to [00:03:00] a five year old, can you say what was going on with your walking?

Maddie: Yeah, so, I was having a lot of trouble, like, staying upright, my balance was affected, my knees would kinda, like, cave in and give out. Basically what was happening is that my nervous system was going a little bit crazy. And the neuropathways, the signaling of the brain that, like, tells the body what to do, there was like abnormal signaling in those, like, neuropathways is probably the easiest way to describe it.

Jill Brook: So, how unable to walk or able to walk were you? Like how bad was it? Could you walk to school? Could you grocery shop? Could you go for a walk? Could you exercise? What was happening?

Maddie: Not really. From a school perspective I, I, what I did before I went into inpatient it was my junior year of high school, so I would walk to my morning classes and by walk, honestly, it was barely even walking, [00:04:00] but they were a short enough distance that I could get there in about 10 minutes, which is still a pretty significant amount of time for something that would, used to take me one minute. But it was very slow, it was painful because it would cause falls I just didn't feel like I could, like, give in to any sort of mobility aid or anything so I did what I could in the morning, and then in the evening, or not in the evening, in the afternoon, my classes were just so spread out that like, it wasn't feasible to walk, I would be missing class, missing lunch, so, in the afternoon, I would use a wheelchair, I didn't really grocery shop or go out a whole lot, it was just too exhausting and slow and not really honestly even walking at that point.

I remember my first day that which I think we'll get into a little bit later, but when I was admitted to the hospital the therapist did their assessments and the physical therapist did hers and four feet was the distance that I could walk before, like, [00:05:00] my knee hit the ground and that's like the end of the test once you have, like, any sort of fall or anything, so four feet was, like, my maximum.

Jill Brook: Four feet? Wow. So you were 16 years old and you could walk four feet before your knees hit the ground. That sounds rough.

Maddie: Yeah, I was probably 17 when it got that bad, but yeah.

Jill Brook: Oh, man. Okay. And so it sounds like at that point you decided to go to a program in a hospital or what, what is it that you decided to do at that point?

Maddie: So for a while we were going to different doctors. They were telling us different things pretty unhelpful things to be honest. They were like there's nothing we can do like go, go figure it out. Maybe you're stressed, whatever.

Jill Brook: They said you couldn't walk more than four feet because maybe you were stressed.

Maddie: Pretty much, yeah. I had a couple of doctors that were like, we can't see this on a picture, so you must be [00:06:00] crazy. Like, go work it out with a therapist. And that, I think, is one of the biggest issues, is that when doctors can't see something on, like, a picture, like an MRI or something, we don't fit into a box.

And so, then it's like, we don't know. So it must be, it must be you. So for a while, honestly, pretty unhelpful. I was doing a little bit of outpatient.

And then it, it, like, it was getting worse. I was to a point where I was like very upset and the way the medical system was treating me and just not able to do as much as I wanted in my life. I was a junior in high school, so I was like, like, this time is going fast, like, I want to be able to go to college and be independent and stuff.

So I sent my neurologist a letter and I was like, here's where I'm at. I can't do a lot. I want to be able to do a lot more. I think that I need, like, more intensive physical rehabilitation because outpatient a couple times a week isn't cutting it. It's maybe helping a tiny [00:07:00] bit. Maybe not, but it's not helping me be where I want to be so I need you to refer me to someone that can help me and whether it be this place or if you have another place in mind, that's fine, but I need something because, like, I can't do this alone and she referred me to a Physical Medicine and Rehabilitation doctor at a hospital that, the entire hospital, like, what they do is Physical Medicine and Rehabilitation. For people who don't know what that is, it's like using like physical and occupational therapies and stuff to heal the body and get better.

So I was referred to that doctor. He evaluated me, talked to me and agreed that like where I was at was A, not safe and B, it wasn't like a very high quality of life and so he was like, you honestly need like inpatient rehabilitation, you need like a lot more intensive than just outpatient.

So then, within less than two weeks, I [00:08:00] was admitted inpatient to this hospital.

Jill Brook: Was this far from home or was this in Michigan?

Maddie: In Michigan, about three hours away, so definitely a little bit of a drive, not super feasible in terms of like, my parents being able to just run home and run back and stuff, but in the state at least.

Jill Brook: Okay, so you packed up and you prepared for how long of a stay?

Maddie: No one could tell me. That was the fun thing. They were like, we're not really sure how long it'll be. When I got there, the, the inpatient doctor was like, traditionally, people like you, we might see you for about two weeks, but if it's not working out, it could be sooner, or if you get better really fast, it could be sooner, or if it takes more time, it could be longer.

So, the total time spent inpatient was five weeks and then two weeks intensive outpatient at the same hospital. It actually would have been all of that inpatient, but insurance was really fun and decided that even though the doctor said I needed to stay, they [00:09:00] decided that I didn't need to stay inpatient.

Jill Brook: So seven weeks intensive. Okay. So what happened at this program? What was the day like there?

Maddie: I would have occupational and physical therapy every day. I would have two sessions of each, an hour session and a half hour session of each, so that itself is three hours. And then I would have probably close to an hour of time where I would devote to, like, working on in my hospital room, the exercises that they would give me and stuff.

That was kind of at minimum. They could also throw in extra therapy sessions, so it could be more than that. There were also, like, a couple other therapies. We had, like, recreational therapy, which was, a little bit more fun, but still working on like improving movement and stuff. And then I also had like a couple blocks in the day where I could work on schoolwork so that I wasn't falling behind and that was built into my schedule.

So from about 8 30 to [00:10:00] 4, that was like the part of my day that was like therapy, some schoolwork some breaks in between, but pretty much the day was full of that. And then, after that, I could have, like, my parents to visit. I would have my dinner and wind down and it was exhausting, so rest.

Jill Brook: Yeah. So what were the exercises like that you were doing during this time?

Maddie: Lots of different ones. It was a gradual approach, definitely but we did a lot of different things to help. The first thing was that like, I was having so much trouble being upright, so they were like, okay, what if we just, like, eliminate gravity? So, I got, they got me in the pool pretty quickly, they had a pool there and I did a lot of aquatic therapy because then we can focus on like just getting the movement patterns right with the water kind of holding me up and then a body weight supported treadmill. And then we kind of gradually went away from the support, like going from doing pool therapy every day to [00:11:00] every other day and stuff.

And then after we've kind of moved away from like the body weight support and the treadmill we would go to handlebars. So there were like parallel bars, which is basically just like two bars on each side for your hands to hold onto. So then we went to those. Once I mastered that, we went to a walker.

Once I kind of found my way around a walker, we went to two, like, forearm crutches. So that was kind of the gradual approach, I would say, but some other things that we did, they they actually had music therapists at the hospital, which I had no idea what this was, but they can time out, like, the beat of your steps and they can find, like, songs or metronomes that match that and that kind of helps the brain be, like, okay, on the beat I have to take a step. Stuff like that. We used some bracing to support, like, my ankles. There was, like, some of the therapists worked on, like, stimulating the nervous system, so they would do these things where they would, like, push on my legs and, like, [00:12:00] put, like, like, as, like, a sensory input almost, I would say.

And, like, one therapist talked to us about, like, kind of what was happening because after the session I was, like, I can, like, feel my feet in a way that I haven't in literally a year. She was like, well, that's because you haven't been jumping in a year. You can barely walk. So how could you jump?

So she was like pushing kind of up and down in that, like gave the input in my brain of like what that movement pattern is. And then we also found that we think some of the issue was the communication between the two sides of my brain. Because we started to do things that were like right brain, left brain exercises, like cross body training.

And after I did those, like I would be able to move better. So, kind of like that input into like, feeding the brain into like right communication pathways. And then a lot of just like repetition of movements, only using good movement patterns. If I can't master a movement pattern in a certain thing, then taking a step back.

Like if I, if I can't, if I can [00:13:00] only walk well in therapy sessions with a therapist guiding me through the exercises, then I shouldn't be doing anything alone yet, and I should be using a wheelchair all other times. So, just so that we're only feeding the good neural pathways, basically.

Jill Brook: So did they have any idea how your neural pathways had kind of gone bad? Cause it sounds like, it sounds like you had a worse thing than just POTS. Did this have a name or is it just something that can happen?

Maddie: So Functional Neurologic Disorder is kind of like a broad overview that encompasses part of what was going on with those abnormal pathways. So, definitely not, it's not like a symptom of POTS or anything, but POTS, I would say, like, predisposed me to getting it. Just that like being so dizzy all the time, that little bit sedentary lifestyle, I'm kind of like, lost the ability somewhat of like, being upright in a way.

And then [00:14:00] I have I also have Hypermobile Ehlers Danlos Syndrome, so everything was like, so stretchy that when I walked, like, my ankle would flip from underneath me and that also was another like, factor that predisposed me. And then I also have this thing in my ankle called clonus, which it's a reflex unrelated to these neuropathways and we're still trying to figure out what's causing it actually, but it basically, if I, like, bend it at all, it just spasms, so without my brace I can't really walk well because it just, like, spasms and I get stuck on my toes, essentially.

Jill Brook: Wow. Okay. So five weeks inpatient plus another two intensive outpatient. How hard was that? It sounds lonely. It sounds grueling. What was it like emotionally?

Maddie: It was hard, but the, like, place that I was in, like, all of the therapists, the nurses the doctors, like, honestly [00:15:00] were amazing, and it was like a place where, like, everybody who was there is working to get better from an injury or an illness, or whatever, and so, like, honestly, I would look forward to every day of therapy, cause, like, I got to, it was, like, so intensive and so much therapy that, like, I got to see these changes.

It wasn't just them being like, oh, okay, you have like a little bit of a better score on this test. Like, I got to like actively experience being better. So it was honestly exciting and not that difficult mentally because I had been like walking so badly for so long that I really wanted this for myself.

It was hard. Being so far away from home that I couldn't, like, have, like, a bunch of friends come in and stuff, but so that was a little hard, but kind of benefits outweigh the cost.

Jill Brook: Yeah, and, and, hospital food is famously bad. Was it for you?

Maddie: Yes, and I'm, I'm gluten free and extremely picky, so I pretty much ate grilled cheese for a month. [00:16:00] The menu was, like, so limited in gluten free, and that was actually probably the hardest thing, honestly.

Jill Brook: At the end of it, how functional were you? And let's just remind everybody that beforehand you could only make it four feet before your knees hit the ground, so that makes me think you really were only making it about two and a half feet before you started falling down.

Maddie: Yeah I don't remember how many feet I was when I was discharged. It was a lot more than four feet. And I remember like doing it. It's called the six minute walk test. I remember doing that test with my therapist and she was like, Maddie, you just walked this many feet. And I was like, oh my gosh, that's so good.

I'm so excited. And then I was like, what is the normal amount of feet? And she told me, and I was like, oh because I was still probably like, I don't know how far away I was from the normal, but I was pretty far from the normal, even though it was a lot more then. But I wasn't having any falls by the time I left.

I was discharged on two forearm crutches, so different than the kind when you break your leg. There's like [00:17:00] a, a handle and they're kind of used more for like a balance perspective and stuff. I was discharged with those. I was walking, not at a normal speed, but faster than I came in, safer. It took a lot less effort. energy to walk. That was one of the big things, like walking in such a messed up pattern, like, that took a lot out of me. It was very fatiguing. So I was discharged with those and then I was discharged in April by, I think it was July, maybe? That's when I lost the crutches, I was done with those only left with the brace that controls that spasming that I was talking about, and then now it's January we're recording. I would say that my walking doesn't really like affect me at all anymore. Might be a little different than a normal person's with the brace, but not much. If so I can keep up a normal speed. So my walking is pretty much, I would say, like, back to normal.

Not, I can't, like, run [00:18:00] in a way that I was able to anymore. I'm, I'm working on it. I'm at a minute and a half before I get too tired. But so I don't have, like, the best, like, balance and endurance as other people, but definitely a lot better.

Jill Brook: Wow! So tell me what that felt like when you got rid of your forearm braces.

Maddie: It was really exciting. It was, at first it was a little hard, but it was exciting not having to drag those around everywhere. And not having people comment on them, and like, it was exciting. Cause it was like another step in the right direction.

Jill Brook: Yeah, for real! And what is it like now to walk? Do you think about it? Do you just do it automatically? Is it exciting? Is it anything special?

Maddie: I honestly don't think about it much anymore. Still, like, like, I still think about, you know, like, having been in the hospital and stuff, so I still, like, think about that, and it's definitely, like, rewarding from that aspect, but, [00:19:00] like, I used to have to think about, like, okay, I put my heel down, then bring my toes forward, and, like, like, I had spent so much time walking abnormally, like, I had to, like, consciously think about all that.

I didn't believe my physical therapist when she told me that people move their arms when they walk. I was like, no, people don't swing their arms when they walk. She's like, yes, Maddie, they do, you have to do that. But I don't really have to think about it like that anymore.

Jill Brook: Wow! Okay, so, I mean, what is next? What are you working towards now? I know you said running, but can we ask what else is going on in your life? And what else is new or interesting? And what are your current goals or plans?

Maddie: I still want to get better at running. I've been working on it for a little over two months now. I'm still kind of at that minute and a half mark, and I can do a minute and a half, probably, like, four times with walking breaks in between. So I want to get that a lot better. I used to be a cross country runner, [00:20:00] so, I want to get back into normal running.

I'm hoping I might do tennis this spring and then going to college definitely is a goal. I want to go into nursing school, which I know is, you on your feet a lot. So, doing my best to get there.

Jill Brook: Wow, that's so exciting and so wonderful. Do you have any advice for people listening who might be working on improving some aspect of their physical performance?

Maddie: Don't give up. There's unfortunately a lot of people out there who maybe can't help or won't help, but there's a lot of people out there who can help and will help and will care about your journey. And so keep fighting until you find those people that you trust that are not gonna give up on you and that are gonna go through this journey with you because there's hope out there. I promise there's hope. There was a point where I was like, like, I honestly don't know if I'm gonna be able to like, walk again. Like I'm, I'm [00:21:00] in high school. How is this happening? I had absolutely no idea what my future meant. I wasn't confident in being able to go to college.

So, there's definitely hope out there once you find the right team of people. You just have to find those people that can help you and then it won't be easy. There'll be a lot of work involved, but it'll pay off.

Jill Brook: Beautiful. Well, Maddie, congratulations and thank you for sharing your story with us. We so appreciate it. And I just know that everybody listening is so happy for you, and I hope, you know, I hope you'll send us a picture of you out there walking.

Maddie: Thank you.

Jill Brook: Okay listeners, I hope you enjoyed today's conversation. We'll be back again next week, but until then, thank you for listening, remember you're not alone, and please join us again soon.