Dear Meeting Mighty People Fans:
This time on the Meeting Mighty People Podcast; I had the privilege of hosting Jordan Lowe. In this episode, Jorden and I discuss what it means to live a meaningful life. We also acknowledge your unique challenges or hardships. For me, having the opportunity to learn about an unfamiliar diverse ability was quite fascinating.
All my Meeting Mighty People Podcast episodes are always fascinating to host. Everyone has a uniquely different story. They offer a perspective on living a meaningful life while living with diverse abilities. My highlight of this episode was Jordan’s heartfelt comment. He responded to one of my questions about understanding the world. Specifically, we discussed how he likes to navigate a world that is becoming accessible. He commented “Yeah Imagine if there was a perfectly accessible planet”. I faith all my listeners will enjoy this month’s episode of the Meeting Mighty People Podcast!
Hello everyone. Today we have the privilege of introducing Jordan Lowe. Jordan lives with Fisherman syndrome despite. His condition. Jordan has found a way to live a meaningful life and is very passionate about Hot Wheels and advocating for human rights for people with disabilities. Hello Jordan and welcome to the meeting Mighty People Podcast.
Hey Alexis, thanks for having me. It’s an honor.
Thanks for being here today. To start off. We would like you to tell us what you’re passionate about doing despite living with a challenging spinal condition.
for me, I have many hobbies. like you mentioned, I’m a Hot Wheels collector. I’m also being, I film YouTube as a part-time hobby as well.
going over elevator specs. and I am also in a, the RC hobby, have my own custom truck set up. So I can only, so I can only have one joystick, like my power chair. I’m just an overall tech guy, yeah, and I, really try to help. promote accessibility awareness throughout the community and just places I go to.
Awesome, wonderful. Accessibility is really important to me, so I’m glad it’s really important to you because eventually it’s gonna benefit everybody.
In all honesty, do, would you mind please sharing how this condition affects you?
Sure. So the short name for is called Fishman’s Syndrome, but if you look that up online, like you hop onto Google and you type it in, it’s this really long name that starts with the letter E and it takes up 25 letters in the alphabet.
And there’s only 60 cases reported worldwide. A lot of people that are diagnosed are very, how do I put this? Nonverbal or very challenged physically and verbally. And, one of the things about this condition is that, the way mine is that. I have a intraspinal lipoma that travels 85% down my spinal cord from my brainstem.
So it’s just fatty tissue just sitting there. And it has affected me, physically, of course. And it also, this condition also does show like. like visual changes. So I have a dermoid in my left eye. It makes my left eye look like there’s, like typically where the, your pupil is. There’s a little bit of whiteness, yeah.
Over the pupil, but I can see out of it. But my vision is very poor, so it has a few like. Facial, I don’t wanna say de formations, but just a few facial twitches to the condition.
How interesting. I never realized that affected you in that way. that’s makes me grateful for the disability that I have.
It doesn’t affect me that much. So I always look at your story and be like, oh, could be worse.
Yeah. that’s the thing, like you sit there and you think like, why has it gotta be this way? And then you look at other people in this world and it’s okay, you know what? You got lucky.
Just deal with it and just, you can just get through it
Exactly. No matter
what gets in your way.
Exactly, and that’s, why I think when people have bad days, I try and look out, oh, could be worse, but it could be better.
Exactly.
The people that don’t have disabilities don’t, people that don’t live with disabilities, yeah.
Don’t quite have an understanding for what lived experience is and how. How they need to take for granted that they can walk with two legs without any kind of support or say, drive without any kind of adaptations.
also it’s not just people with disabilities that are visible. It’s also, People with disabilities that are, that have disabilities that are invisible to the naked eye,
like A DHD, and so autism
fetal alcohol syndrome.
In that case, out of curiosity, I wanted to ask you, because this is a very special rare spinal condition. What’s a fun fact about it that you would like to educate us all on and tell us about to inform us all and educate us all?
Ooh, that’s a tough question because to be all honest with you, there is very little, information about this condition that.
All I can say is my condition has been written up by a, what was he a, I’m sorry. Oh, my neurosurgeon. he, did a writeup about me and actually posted a, blog about my condition and how it specifically affected my body with my diagnosis.
That’s that’s cool. I’ve never seen a never said and write about me, so it’s cool that you get to be the person that gets to educate people about this rare condition, even though the Lyft experience is not cool and challenging, sometimes I look at it as a good thing that people, you, have the opportunity to help.
Educate people and enlighten their eyes and so on.
Yeah, for sure. it’s like people look at me like as an inspiration and I’m like, how am I an inspiration and like I’m just being me. what’s so inspiring that I’m just a dude that. He’s in a wheelchair that lives with this rare spinal condition.
treat me like normal people, please.
Yeah, exactly. Like you don’t wanna be like, oh, that poor dude. and so on. He just, do you want him to be treated with equality?
Yes,
but at the same time, it’s People look at me as an inspiration. Like I’ve had some friends like say, oh, I’m going through this and this, and then they’re just like, you know what? I need to stop whi because look what he deals with on a daily basis.
Yes, true story people. I don’t wanna say need to stop being sad about their conditions, but need to be able to let the feel the negative, to let the negative go, to open up to realize that there’s positivity around you every day.
Yeah, exactly.
Thank you for sharing that. That was cool.
No problem.
I wonder and welcome you to share your preferred language when someone refers to you having fisherman’s syndrome. I prefer using person first language versus the other one. I’m curious to see what you prefer.
what do you mean by preferred language?
there’s person first and there’s identity first. Which one do you prefer?
Ooh. I would say just people look at me like, Hey, there’s Jordan cruising down the road.
So that would be person first.
Yeah, for sure. Like it, you just don’t wanna be known as that dude in the wheelchair cruising down the road.
I,
I would hundred percent agree with you. Some of my interviewees prefer identity first, and I just look at them like. Why you had to become human was first, before you had to become a person with a disability, before you had to become disabled.
You had to be born with first, before you came as a person with disability.
Yeah. Because like you don’t make these choices in life, you’re just. On this planet the way you are, you can’t do anything about it.
Yeah, exactly.
so yeah, I just, it’s like people, they look at me and the one thing that, the one thing that really bothered me when I was younger is like I had people just stare at me like. Who’s that dude? Like, why is he in a wheelchair so long? Like I, I remember, one day I was looking at Hot Wheels and I had this kid staring at me in Walmart and I’m just like, okay.
So I just went to another aisle and it’s just follow the leader and you just. He’s in the aisle with me. He stares at me, so I’m like, Hey, it’s rude to stare at people. And then he just left.
that’s probably better than his comment that was gonna come back.
he was only a young kid, oh, I wanna say at the time I was maybe 10, 11, maybe nine at the youngest.
I hate when people stare at you for inspiration and, just say you’re not, you are doing a good job. I like that. But you’re doing a good job walking through an aisle that is inaccessible and very tight.
Oh, Sorry about that. sorry, is that getting annoying in the background?
No, I don’t wanna hear anything.
Oh, okay. sorry about that. The, Nova Scotia just did its, emergency alert system test and it just threw me off focus. Can you, can you repeat that question please?
I just, that I hate when people look at me for not inspiration, but look at me because I’m in a wheelchair. I just, most people do look at me because I am this fantastic person raising awareness for accessibility. But there’s the very odd person that. It’s just Interesting.
Yeah, it’s like people look at you like as if you’re like from a different planet sometimes.
Yeah. You understand.
You imagine if there was a planet that it had way more accessibility than earth.
Yeah, I could see that. That’s a perfect segue into my next question. As a person with mobility challenges, because of my cerebral palsy, I have a very, myself understanding of what the community. We live in can sometimes be very inaccessible to people with disabilities, especially those with physical uniqueness.
I’m curious, what techniques and coping skills have you found helpful when you’re forced to do activities that support your daily living but are not accessible? For example, just getting out and going independently to visit friends.
Oh, the biggest struggle with the whole, going out and about just hanging out with friends.
Oh, I wanna say the biggest challenge is transportation. fortunately I live with my parents and we have a accessible vehicle. we have a lift in the back of our truck that just picks up my chair, and then we put it in the back of the truck and away we go. Sometimes, technology, I put the clean way with great technology comes great screw ups because ev one minute everything could be perfectly fine.
And then it’s like uhoh man down back needed.
Yes.
Like for one instance. I was out shopping one night and screwing around the mall. Then they were closing. So I was trying to go to the exit that was closest to where I was and they already closed that off and I, so I had to turn around and beeline it to my parents.
I went and floored. It is wide open, my power chair, and I don’t know if you. for people that are listening, if you have a car and you have an issue and your car goes into limp mode, it restricts your speed to like, I don’t know, keep your vehicle slash wheelchair at a safe pace so it doesn’t cause any damage.
So I, I floored it and my chair went in the lip mode. I’m like, oh. Because I was going pretty fast at the time. I thought I overheated the engines, so I just backed off the gas. I’m like, okay, let’s cool it down for a minute. And then I tried flooring it again and kept flashing the, the limp mode sign on my chair.
And I’m like, oh. So when I got to my parents, I’m like, this just happened. And when I was going up to. The hill at Walmart, I saw my battery levels go down and down. I’m like, mama, I’m not gonna make it up here. And I can’t do nothing. We get to the top of the hill and I’ve got one bar left and my battery gauge and dad just brought the truck over and loaded it up and I have an app that next to my chair through Bluetooth, which allows me to see all the stats and everything.
Including my, range of drivability. So like how many kilometers I have left on a full charge. And, it still said I had 52%. So I’m like, that doesn’t add up. So I called up my, salesman, at Lawton’s. and he, I told him what happened and he checked the diagnostics. Sure enough, there was an issue and I had to get a new battery replacement in the chair and it wasn’t even a year old.
So thank God for warning.
Yeah. See stuff like that happens that I wanna say people are getting better at recognizing. Those issues with power chairs can happen, so there’s better backup plans and better backup exit, but there’s still a long way to go.
Yeah. for one instance, the, one of the major things that people don’t really look at the most is the button positioning for the automatic doors.
Like you could just throw that set up on a building. Automatic doors, boom, wheelchair accessible. But you go to that in my, if you’re in my point of view and you see the button layout and that’s not gonna work. I’m not gonna be able to reach that because
in my high
school, in my high school, the button placement was so terrible that, the company actually came in.
Rigged up a pretty neat, tool for me. They made me a remote on my, that I could just hook onto my power chair. Then when I got close to the door, I just had to press the button on my little remote and it would open the automatic doors for
cool. See, I had a remote at my school, but you had to be. Close to the door thing to open it, which granted there’s a success in that, but mind you, for better design next time, I think I would tell them, line it up with the door through your not cook cockeyed when you get in there.
For me, it wasn’t so much about, oh, so sorry, go ahead.
But sometimes it’s like looking at your wind in life and saying, we got this done before we graduated. Yay.
Yeah. But for me it was more about range. I had to be about, maybe I wanna say a foot and a half before, I had like communication with doors, which wasn’t a big deal ’cause just take my hand off the joystick, press the button, and then wait for the doors to open and then, and I go,
yes.
that must have been an awesome feeling to be able to have somewhat of independence in your school somehow.
Especially in the winters. Oh, that really paid off.
Yeah.
Yeah. It’s also, it’s not just button placement for the automatic doors. It’s also, here’s my elevator community side. It’s where the buttons are located for the call buttons. When you wanna get an elevator.
I don’t know if you’ve been to some hotels where you go inside the hotel and you go to press the button to call an elevator, and there’s literally a trash can right in between both elevators and then in the middle, like right in the way of the call button.
It’s
it’s who’s a genius that came up with that?
And then it’s not only that, it’s the, it’s the phone button in the elevator if you’re stuck. Older models for, for one thing with older models, they can be retrofitted with UpToDate, updated phones. That’s more of a push button. Instead of having to try and open a cabinet, then press the phone box that’s sitting in the cabinet.
I tried fighting that for years in, my high school, but thankfully the elevator I had was, installed by a very, good company and not some cheap installation.
That helps when you see it being installed and you know that there’s other companies around there that make those type of elevators, it helps calm down.
Okay, this elevator isn’t coming out of, Mar isn’t coming from Mars, it’s coming from an actual company that knows what they’re doing.
It’s like you, you could compare it to a high quality installation, to I don’t know. Something you would get at a dollar store for an elevator
like, Matt, compared to like dollar store quality.
Yeah.
in that case, I, wanted to transition to the rare spinal condition in your me, in your medical, in adulthood. With this rare spinal condition, I would imagine you are like a trial error patient when it comes to treatment options because the doctors aren’t necessarily sure that the treatment they’re gonna perform is necessarily beneficial.
for my doctors, because of how rare my condition is, they, Matter who I deal with, they’re extremely cautious. and look at the best, opportunities that could benefit my health. So for example, I was on, I’m on two seizure medications and when I’ve been on since 2012, and then I added extra layer protection put on.
In 2021 and the pill, the extra layer of protection wasn’t cutting it because recently I went nine months having these epileptic episodes every month for the past nine months, and then they gave me this new drug that’s from the same family, but 10 to 30 times. Better with less side effect, with less chance of a side effect.
And I feel a million times better than what I did compared to the old drug.
Nice. That’s always a good thing. are? Your seizures are more vocal seizures, right From when I remember talking to you last time. Can you, describe the rarity of those compared to normal epileptic seizures?
funny you mention that ’cause I was gonna ask you if I could, talk a little bit about my, epilepsy and how, like my symptoms are and how I feel.
For one thing, I don’t know, the rarity of what I have are called focal aware features, so I don’t know the rarity for you, but it’s known in the science industry. I had these, I actually used chat GPT because I described how I feel. So you know how when your anxiety ramps up. You get your heart racing and everything.
Yeah,
that happens. But then I feel nausea kick in, so I just focus and breathe. And that way I don’t get sick, but I like, I never get sick from them, knock on wood. Anyways. So I burn off that feeling and then I get pressure in my head and down the back of my neck, and by the time it’s over, I am, I’m toast.
Like I’m drained with no energy, but I take Ativan in a dissolvable pill form to, and it’s a seizure stop or pill. I use that to help kill off the, focal aware seizure faster.
Yes. Because you would obviously at that point you’re getting nauseous and pressure in your head. That’s the fun to they thank God they are able to have medicine and science at this point.
Find something that works.
Exactly. I use an Apple watch to, monitor my art rate and my blood oxygen and just it, people use it for athletic stuff and everything, but for me it’s a medical tool. I actually have a portable BiPAP that was recently prescribed to me a year ago back in September.
I, long story short, I had pneumonia ended up in ICU for eight days and they tried me one night without a BiPAP or oxygen, and my blood oxygen still dipped into the mid eighties, so they weren’t happy with that result. And they said he needs a at-home bypass. So even my parents noticed before, before I got sick, throughout the time of the day, they hear me breathing over at the counter where I have my iPad set up across from the living room.
But since I’ve been on this BiPAP, they don’t hear me. And with my Apple watch, It gathers the data and I’ll get a ping on my phone for my health app and I’ll say, oh, you have a new blood oxygen trend that’s been happening for the past so many days or whatever. And quite recently my Apple watch updated my health app saying that my resting heart rate actually increased from.
I think it was 68 to 80 beats per minute over the past five days.
that’s a good thing.
Hopefully that’s a good thing because that means there’s more blood pumping and more circulation,
for my body, before I was on the BiPAP and everything, my heart rate would range between. I wanna say, ooh, let me think back. I wanna say from the sixties to the mid one twenties and now being on the BiPAP for a year. I’m steady around 40 to the high fifties at my lowest, and then my highest is I don’t wanna say below one 10, or my highest is like the mid one tens, but if I’m having an off day, my heart rate could be up in the one twenties. If I feel my anxiety kicking, I, I really, when I really feel my heart pumping up is when I’m like at 1 28 or into one 30.
It’s interesting how when we are in pain as people with disabilities, our heart rate goes up faster than regular. People, like regular people can only tolerate this much pain. And us we have a higher pain tolerance. So if we’re in pain, our heart goes, our heart rate goes up really high.
Oh yeah. one thing I forgot to touch on about my condition.
I only have 16% lung capacity. It was 30%, but I had a breathing test done. They said 16%. But with me, I also have Clus, which is an involuntary rhythmic tremor. So it’s in my legs, it’s in my arms. So when one starts, when one, it starts on one part of my body. It’s like a chain reaction. So it’s like earthquake mode for my body until we break the pattern to get everything calmed down.
Exactly. As soon as I can relate similarly in that way with cerebral palsy, as soon as one part of the body starts moving, or as soon as you move one leg, the other leg wants to go with it.
Yeah, it’s okay, slam the brakes on. Regain control.
Yes.
If there was something you wanted my listeners to know in the world to know about how to make the best of life living with this condition, what would it be?
Just specifically with my condition.
Yeah.
hypothetically speaking, living it exactly how I live it daily or based on however they get diagnosed with it.
Hypothetically speaking how you live with it every day.
Okay. for people that are listening, my advice, if you lived with this disability in. In my perspective is just to go with the flow of life. Like sure, there’s gonna be major transitions in your life that you’re not gonna be able to control and you just, you gotta go with the flow, whether it’s just through your life cycle or if there’s any medical interruptions.
You just gotta go with the flow. Adapt to it. And just also don’t be afraid to speak up. if you have your own opinion, don’t just sit there and be quiet. let your voice be heard and give the world your opinion. And I’m telling you, I’ve said some things where that I haven’t liked. certain turnouts and I’ve said, this needs to change.
So I’ve said some things and there’s been changes that have been made for the better, that has not only benefited myself, but has also benefit my community. like I said, don’t be afraid to voice your opinion and just go with the flow.
Yes. All they can do is to say no, and then you have to basically, if it’s a necessity, you would have to show them.
They’re gonna probably say no unless you show them or unless they know what you’re talking about.
Also, don’t be afraid to advocate for yourself. You know what’s best for yourself. So don’t let someone, even though they could be a medically trained professional, I’ve had an instance where I had to visit a wound care nurse where pressure sore and they, did a little liner mishap and I had to.
How do I put this? Rebuild what was lost besides the main area they were treating. So really you gotta advocate for yourself and say, okay, this is how you do it my way. Even though you’re medically trained for this kind of scenario and situation, but this is how sensitive. I am. So you need to treat things with extreme caution.
Like I would, if I could show you my health app on my iPhone right now, I could show you a huge list of medical notes that I have written up for in case I’m hospitalized or in general, just having, Respite character.
Yes. Yes, I could. I could see how, I can see how sensitive you would be because when you live with a disability, you’re so sensitive that it is like you are not doing it that way, but maybe do it this way.
it’s just that people have to adapt to your lifestyle and that way you get along perfect.
Exactly that way.
That way you’re living life comfortably and not, so
yeah,
not such in the medical world. When I was younger. My doctors always wanted my core to be stronger, but I would always work so hard to get my core stronger, and then it would never, it just wouldn’t feel good that way. So sometimes when I’m walking, I lean over just to give my back a bit of a break, even though it’s worse for your body.
Then
speaking of, Building up core muscles. that’s one thing I really had to build up after being really sick back in, 2021 just after the holidays, which was another 10 days in the ICU. So it took me a while to build up my core muscles to actually sit up straight by myself. If I wasn’t, say if I was sitting on a couch, I would just be like, uhoh, I’m falling over.
But over time, I just, if I’m not sitting in my power chair, that folded to me, I would sit there and I just try my hardest to work those muscles. And I tell you, when they say, no pain, no gain. I tell you there, there was some pain and, one thing I’m sorry, I forgot to mention this at the very beginning.
I’ve also gone through 12 surgeries in my life, and one of the things they did for one of my surgeries, which was a two step surgery on my back, they removed a rib and relocated it into my upper chest to, improve my posture before installing the rods two weeks later to stabilize my lung capacity.
Yes.
That’s a u unique, situation.
It, was a month in the hospital. it was a life saving surgeon.
Yes.
believe me, I could go on and tell the audience my entire life story, but I just don’t wanna take up everyone’s entire day.
Oh, you could. It’s fun. The more you tell ’em, the more they get educated in more. The less hassle you have to deal with when a person comes and does respite for you.
Speaking of respite, I had someone ready to go and then just their scheduling, they already deal with, working with other people with disabilities, like in special homes and all that, Just trying to get, I don’t know, a date figured out with them. never worked out. So now I gotta start from square one again for the second time because the first time I, my plans got, written off thanks to the pandemic.
And then the second attempt, this person is just too busy dealing. With other people with disabilities take care of. So I gotta, so hopefully, lucky number three, I actually have a respite care worker that can help out when my parents say either wanna go for supper or do something on their own.
Yeah.
And just I’m able to socialize with someone like.
Even though I have friends from high school that I still talk to this day, one of them that has actually come to the house and hung out with me and helped with me with some of my medical needs. Minor ones, not any major ones. she’s also fully trained in first aid, so it’s like. My parents had enough trust in her to hang out with me while they went out for supper and went to see a movie.
And then we played video games and just did things that we liked, we had in common. And she stayed the night at my place and we had a great time.
See that kind of friend slash respite relationship with adults is more about sexual living friend relationship with a kid my own age.
And this is the thing, when you get set up with respite care, you need to make sure your care worker is someone you can relate with. And get along with along. It’s the same ordeal, like in school. If you have an educational assistant, you gotta make sure the chemistry is right there as well when it comes to support and assistance.
’cause oof, I’ve had some horror stories during my years of schools.
Tell us about one of the four stories quickly, please.
Oh. Okay. Then, I’ll keep it brief, but in high school I had this ea some days she was decent and some days it’s like, like I would get maybe a 70 or a 74 on my math test ’cause I’m terrible at math.
And she says to me, you could do better than that. It’s I’m trying my best. So finally I just, I got so triggered. I sat up in my, my, my power chair, started it up, backed up, and she was super controlling. this person was super controlling, even was telling me how to drive my own chair. It’s like you actually have to take training like to, that way people understand how safe.
The chair should be programmed for your driving. For me, video games was a real help when it came to driver training, so I aced my test and this person was super controlling with my driving skills. It’s like I and I just was not picking up what she was laying down at that point. I just had enough, so I got up, fired this thing up.
Left the room. She’s like, where are you going? And I’m like, somewhere where you’re not around. And I went straight down to the principal’s office and I said to the secretary, I’m like, is the principal a avail principal available? Because we need to have a serious talk. And she’s yeah, he’s available.
So I went down and I said to straight, I’m like, I’m done with her. I’m like, I’m not gonna go through my final year of high school.
Like I am done. And when grade 12 came along, my grades were better and I had the best year of my entire life in high school.
That’s great.
Not only did I have a great EA that was supportive and well. I actually had a good sense of humor as well and wasn’t controlling, but, I got to attend a Rick Hansen Youth Leadership Summit in Ottawa back in Victoria Day, weekend of 2017. And, there were only 50 kids chosen Canada wide for this event, and you had to answer.
I believe it was three questions within a five minute period. So you either had to do it through a five minute video or a 350 word essay. Me being the YouTuber, I chose video and I met Rick Hanson back in 2012 at my local campus, and he was rolling in and I was the only person. There in a wheelchair besides him.
And I said, dude, you’re amazing. And he is you wanna chat later on? I’m like, sure. And then fast forward 2017, when one of my teachers told me about this summit that was happening, I put in my application video and at the end of the video is the picture me with Rick Hansen and a little pop-up note that says, can’t wait to see you in Ottawa.
And the beginning of March rolled around and got home from school and mom got a email and I got a text. And the same thing, the same message in both texts and emails, said, congratulations, Jordan. Low. You’ve been, chosen to attend the Rick Hanson Youth Leadership Summit at Carlton University.
may Victoria Day, weekend, 2017. And so that was a life changer, and I just actually finished my three years of, or my three year term of the youth leadership c or youth leadership committee with the Hanson Foundation. I gotta say, working with them is really great. If I had a choice to do some kind of job remotely, I would definitely work with Hanson Foundation 100%.
Because they understand situations with people like us with disabilities, so they’re super flexible. And if you’re just. If you’re too caught up and you can’t attend meetings, and when you get spare time, they’ll fill you in right away. And they’re not, they don’t, when they described you like what you missed, they don’t throw you the information like it’s a puzzle.
they have it broken down, simplified, good enough that you understand what you missed. What’s going on. So I would 100% work with them again.
Is there an election for the youth leadership or how does that,
I would have to get in touch with the person that runs the youth leadership committee because if there is, I forget the age range, but, If I’m not mistaken, I think the term for the newest members of the committee were just chosen and I’m in the alumni group now, so when it comes to applications, I can definitely pitch you an email.
That would be awesome. I have one last question for you today, and it is, what do you think makes the quality, makes a mighty person?
Say again. Sorry, you cut out on my end.
I have one last question for you, and it is, what do you think makes them a person? Mighty?
What makes a person mighty? Someone who is not afraid to back down from any challenge that gets in their way and just it’s. Just, they just, like I said earlier, they just go with the flow.
that’s what makes the person to make a person might, in my opinion, is just to go with the flow despite, no matter what challenges you face in life,
yes,
sure. It’s, it can be, it can be mentally draining. Physically draining on your body, but I’m telling you from experience that the PA patience is key.
And when the time comes, all that time and patience will reward you.
Yes. I enjoyed that answer and I, agree with you in that answer and that was an amazing answer and I’d like to end here today. So thank you for joining me on the podcast and sharing your journey, and I hope this educates people on Fishman syndrome.
I’m quite excited to hear about something. Something that I haven’t heard of before. So thank you for being willing
and thank you for having me an honor.
Meeting Mighty People by Alexis Folk 