August 2, 2023 • 38 mins
Happy SMA Pride Month!! We are taking a moment this week to celebrate all the accomplishments and moments over the years to be proud of! Then, thanks to all of you, we are doing a special Q&A: SMA Edition. We top the week off with SMA Bingo
For transcripts of this week's podcast click HERE
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We would love your feedback... If you enjoyed this episode, tell us why! Leave us a review and make sure you subscribe on your favorite podcast platform.
Executive Producers are Riley Peleuses + Michaela Garrison for YEA Networks / YEA Podcasts
If you are interested in advertising on this podcast or having Shane and Hannah as guests on your Podcast, Radio Show, or TV Show, reach out to podcast@yeanetworks.com
For transcripts of this week's podcast click HERE
Thank you to this week's sponsor:
EveryPlate - Get started for just $1.49 per meal with code 49junkyard at EveryPlate.
com/PODCAST.
For more Mayhem follow:
@junkyardmayhem
@shaneburcaw
@hannahayl
Website
We would love your feedback... If you enjoyed this episode, tell us why! Leave us a review and make sure you subscribe on your favorite podcast platform.
Executive Producers are Riley Peleuses + Michaela Garrison for YEA Networks / YEA Podcasts
If you are interested in advertising on this podcast or having Shane and Hannah as guests on your Podcast, Radio Show, or TV Show, reach out to podcast@yeanetworks.com
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
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(00:23):
I have found the dot gear inthe hills of the Himalaya and she has
proven that dorgi varies. Here yourmuscle weaitness no no no oh. They
(00:46):
did in with a trumpet because it'sSMA Pride months. It is yea your
special month. And did SMA Pridemonth Jindal, Oh, geez as Sam
May as Sam May? I haveas Sam May all day. I am
(01:07):
great, I am great, Ihave as Sam Nay, I'm great.
God so much worse than I thoughtit would be. Annah, it's just
my Pride month. Is your favoritemonth of the year? Is it my
favorite month? I know it's yourfavorite months. My Pride month is a
month to honor the thriving community,the driving SMA community. Yeah, there
(01:34):
you go, and to celebrate andembrace the experience of living with SMA.
Yeah. Well, some people docall it SMA Awareness Month, Yes,
and then a faction if people callit SMA Pride Month, you were in
that faction. Yeah, it's allpretty much the same, right, It's
just about awareness. Just sounds moremedical, So you don't really need like
(01:55):
awareness of no, and if youwant to channel, you're aware of about
something. Yeah, So we're gonnatake the pride to end all. Yeah,
and I did. Whenever you liketalk to people about that, the
immediate response is often wait, you'reproud to have SMA, Like, how
is that possible? Isn't disability abad thing? Good rhetorical question or good
(02:21):
good question that you're posing to yourselfto answer. Interesting that you ask that
hypothetical whole person. This is likea a long journey for many people with
SMA, many people with disabilities,is like getting from a point of not
feeling pride in your disability or youridentity and moving towards having pride in it
(02:46):
and embracing it. And for mespecifically, like my keenage and early fundies,
I did not have pride in myselfand my disability. I did everything
I could to like not be disabledto others, Yeah, and yeah,
that's the thing, is like theway you describe it, it's all about
(03:07):
how people perceived you. It wasn'tlike you were trying to not be disabled
at home. It was like youdidn't want to be labeled with that at
school, right. I was worriedabout the social implications yea of having the
disability, having estimate. Yeah,And unfortunately I really internalized the messages that
(03:28):
society has given me about disability,that it's a tragedy and that I'm worthless
and I'm lovable and all the filmwas that we always see in stories about
disability. So I didn't feel pride. I mean, like the only thing
you would have seen in the newswas that maybe someone would pity ask you
to prom and they might get afront page newspaper for it, exactly that
(03:52):
stories. Yeah. Or you knowBullion of chairs handed the football to run
five yards, yeah, and noone talls him. Not the kind of
things that you were interested in.And so you know, it wasn't until
I got older, met Hannah,met other people with disabilities that were older
(04:14):
than me or my age who wereout there just living their lives, not
worrying about the perception or others becausethey felt pride in who they were and
what their disability meant. And thatwas like a big shift for me to
get there for years and I flounderedalong the way at points, but today,
(04:36):
like I love my life with thedisability, I love even my life
with the SMA, and I don'tfeel like they are a negative part of
my distance. As I said thatsentence, I thought that we hadn't hit
heard oh boy, and I verytrying to hold it was like looking at
(04:57):
all the lights that need to beon. Don't worry, we're recording.
So I thought it want me todo for Uma Pride Month is celebrate Uma,
celebrate you for the whole episode.Yeah, this is like a repeat
of your birthday. So maybe justtell me everything that you love about me.
Anything that's anything that celebrates Shane inany way is his favorite thing ever.
(05:18):
So now Shane's going to talk aboutsome of the things that he is
proud of that kind of have todo with SMA. Uh. And I
just want to tease him because hewrote out a list and why a little
list, and it's the cutest thingin the world. I am proud of
my organization. You are number one. Might be might not be able to
(05:39):
move my feet, but I canwrite a list. You can make a
list. I will make lists.I can put a title. I'm surprised
there's not an Excel document that's sittingthere. I've originized it in a very
cell like way. Diad what youhad, which was just notes, but
um, I was in a rush. Okay, I'll make it into it
(06:00):
self way there, just to besafe. But here are some of the
things that I'm proud about, andthen and you can reflect upon them.
Yeah, I'll see if I agreewith your self description. Yes, that
will be fun, all right.Number one, I am proud that I
learned to be proud of my disability. It was not easy, and it
did take some serious self reflection andlike realizing that maybe I wasn't being as
(06:29):
healthy or as kind to myself asI could be, and realizing like the
negative implications that it had on mylife and on other people, Like I
perceived other disabled people negatively because Ifelt negatively about myself. Yeah, so
I am never wrote books and Iwrote books, you know, and blogs
and stuff where I wasn't always themost disability kind or accept him. Yeah.
(06:56):
So I'm proud that I learned tobe pad And I mean in general,
people changing their minds is a reallybig thing. So that was a
big thing to change your mind about. So maybe give me a grade for
each line? How good of me? Was it? A plus? They
don't all have to be A Well, I'm going to be afraid if I
give you anything under an A plusnumber two. I am proud of my
(07:17):
sense of humor, oh plus,And I don't mean there's bradshally like there
are tons of disab about people funnierthan me, but I am proud that,
like I use my humor to makeother people feel comfortable about disability tolpits
(07:40):
that maybe aren't always approachable. Yeah, do you agree? I agree?
I already give you my A plus. I mean that's a huge part of
our content is trying to make thingsthat we talk about educational and also fun
for people to listen to. Andyour humor is like the main part of
that when you first like learned aboutme and then we began to talk.
(08:03):
Yeah, right, it's disability andor suma something that felt hard to approach
for you or like tabboo, Oh, that's a good question. You remember,
I know, I don't. Iwish I remembered. I mean not
I don't remember ever feeling like itwas taboo. Maybe like right in the
beginning, I was like, Iprobably shouldn't ask about it. I don't
(08:26):
know I probably thought that. ButI also think that you brought topics up,
you know, to me, sothat I didn't really have moments where
I was like, I really needmore information, Like I never felt that.
So yeah, but you're good attalking about stuff. You even said
maybe that I humorously broached topics wellon our first visit. People know that
you made a bingo sheet for meto fill out with the care activities.
(08:48):
Yeah, very humorous, of veryhumorous of you. Yeah, I love
kay. This is that something mightsound weird, but I am proud that
I moved out of my parents' house. Oh that's a plus. I love
the environment dad. But actually,I'm gonna give you a I'm gonna give
you an an. I'll describe whylater. That's offensive. I know.
(09:11):
On my Pride month, I haveto give you something other than an A
plus. You would dare and Idon't like. Living with your parents is
not an objectively bad thing. Welive with my parents. Yeah, exactly,
Like this isn't the cent if you'reliving your parents. It's bad.
Yeah, but I was afraid tomove out of my parents' house because they
(09:33):
had always been the ones that didmy care. And it was a big
mental and emotional leap for me tomove not just out of their house,
but a thousand miles away yea,to have a brand new care giver and
like care of situation. Yeah,well they know that, and like not
(09:58):
having my parents two round to behelping out. Yeah, and I bravely,
yes, forged a new path yeafor myself. Well, yeah,
you came to me, you leaptinto my arms and carried me away.
Well that's why I'm giving you ana minus is because you did it,
and you moved into an apartment withme. You never liked it, you
(10:22):
didn't go because some people like goto college all caregivers like they do that,
you know you, it was alittle bit easier than some people where
they're just like moving into an apartmenthiring caregivers. Yeah, I can't give
you an A plus. If theyget an A plus, you get an
a minus. So the cheer oflike goodness, yeah, is that you
(10:43):
hired caregivers. Yeah, you're onyou you like move out and you handle
it. All you know, Idon't know. Yeah I did. I
just think that's a lot of steps. That's a lot scarier than moving into
an apartment with me, because ifyou're moving out to live on your own,
yeah, like hired caregivers, you'remaking every decision, you know your
own exactly. You and me sharedevery like. I'm not giving myself an
(11:03):
a plus for moving in with you, right, because that wasn't very difficult.
Should but it was harder for you. It's one of the best things
you've ever done. It was,But I get a beat because it wasn't
as brave. You get an aminus, and people who moved out on
their own get an a plus.And you have people that live in their
parents had a plus. They do. I'm just proud because I was afraid,
bit I did plus plus. Iam proud of the boats ever and
(11:31):
to educate people about SMA. Yeah. And although some parts of those early,
like my first book, nicely,yeah, I had something with it.
Today I'm not. It's thrilled thatI wrote down for all the eternity.
Yeah, but some of them disabilityrelated, some of them not.
(11:52):
Yes, equally horrible that you wrotethem. I was young and once again,
it's very young. I have justfound that, you know, from
like having an idea to write abook, I wanted to be out there.
I did it. I want andnow those are out there and real
(12:15):
in the world. Yeah, sure, I'll buy them because it's it's a
pregnant a plus people who like,haven't read your first book and have no
idea what's in it, and you'realways giving it like like I'm always be
Yeah, I just had to hatethat book so much. I don't hate
to read it. I would recommendjust giving a few of the chapters about
(12:37):
other other people. Well one otherthere's one other person in there I think
I can't remember. I honestly didn'tread the whole book. I found it
to be a poor, poor book, and yet you're giving it an appreciate.
I liked your second book. I'mgiving you an a plus because you
wrote the book. People love it, Like so many people I've seen come
up to you and been like,I read this book. I absolutely love
(12:58):
it, and I'm like, didyou I read about previous young friends?
So yeah, though you wrote aboutone girlfriend right who you said you were
going to marry. Yes, butthere's another story that one doesn't. I
think the one that says I'm goingto marry this person. And the best
part about this is that when thebook came out, they had already broken
up. So like Shane sent thebook in and they broke up like a
(13:22):
week later, and then he waslike, can I get that back?
And he wasn't able to get itback, so it had to be published
after they broke up, and youwould only dated for like a month for
you lasses it was not anyway readthe book. Actually my mind, I
actually liked the book. I dolike the book. It's funny. Every
(13:43):
other chapter is not offensive to you, No, it's not. That's just
so funny. Anyway, we'll putyeah, the next and maybe last thing.
Yeah, the last thing that I'mproud of is my superb communication skills
(14:03):
slash my ability to advocate for myself. Yes, it is not easy in
like medical set aims, or insuranceset aims, or inaccessibility set aims.
To stand up for yourself and youknow, dictate how you're going to live
(14:24):
your life when there are other maybeprofessionals disagreeing with you. But I've out
endured it, like standing it forwhat I need, what I want and
how I want to live my lifeand realizing that like just because I have
a disability doesn't mean that I amlike a patient that needs to be managed
(14:48):
by doctors. Yeah. Every doctoris like, oh, you're right.
I'm want to say, oh,I don't listen to your doctor. But
there are people with disabilities who andI've fallen victim to this at times to
myself, like I take doc.There's orders as like the bo and all,
(15:11):
even if they don't drive with like, but I know about my body.
Yeah. And I think that alsoprobably started in school when you were
doing like your I E. P. And you you know, spoke up
for yourself about what you wanted andteachers were like that's not how we do
it, but you were like,this is how I'm going to do it.
I mean to my parents feel liketeaching me how to do that?
(15:33):
Well, yeah, definitely tell peoplewhat I need how I want them was
to be. Yeah. So andit works in our relationship too. Your
communication skills, not the telling peoplehow it's I just mean your communication skills
are you know, a huge apositive in your relationships too. Thank you,
Loving life. Yeah you're saying noauthentically or because you know that's like
(15:56):
when people are like, what areyour favorite things about Shane? That's always
one of them is your ability tocommunicate and how you bring that out of
me better? Man, I justhealed some warm and fuzzy, A plus
on every count. All right,give me have you pride? Month boy.
We're gonna take your break. AndI'm really do that because I put
(16:18):
out a request to my Instagram followersfor questions about SMA and you. We're
you going to answer some of them. Let me get back. All right,
we are back. I have thequestions here on Shane's phone. I'm
going to select them. You gotall the questions? Oh my god,
(16:41):
there's a lot of repeats, sosorry if we don't get to get to
all of them. Yeah, there'slike there's a thousand questions, but well,
I'll just pick them as we go. And Hana, can you answer
some as well? I want tosee how well you know me for so
as like a answer as me.Yeah, okay, I'm gonna give you
a softball first. Is it thereason you're so funny? Oh? We
(17:03):
just addressed that. Who asked methat? Zoe? Zoe? Thank you?
And yes, okay, what doyou feel is the hardest misconception to
deal with when it comes to SMA. I feel the immediate assumption by most
strangers that I am socially and intellectuallyincapable. Like the dut response to me
(17:34):
is often like keep treat me likea baby, and to assume that I
am not an adult that can carryon an adult interaction. Yeah, yeah,
definitely miss for you. Now,all right, okay, when were
you diagnosed? And do you havefriends with the same conditions? The same
(17:55):
person Shane was diagnosed when he wasabout a year old and think it was
like eleven months into the doctor andaccurate, I know you well, and
yes he does have friends with thesame condition. Yeah, I'm not gonna
like listen to that, my guess. But yes, does it affect your
breathing? Yes, so the voluntaryeffects voluntary muscles, they sure the ones
(18:22):
that you control voluntary because it affectsthe motor neurons. So like, it
doesn't affect any muscles that are theones that like you're hurt, like all
those ones there can be competitions,but not like your heart muscle deterior right,
um, but anyway, yeah,so the muscles in your chest that
(18:44):
allow your long spanned, and contractare voluntary and h they are we can
buy. So the main result ofthat is that when I get sick,
I typically end up with like respiratoryissues and it's harder for me to half
out whatever is in my lungs.So I have devices to help with that,
(19:07):
like a nebulizer and half assist,which is like a vacuum. Yeah,
for you, you haven't used ina decade. H Is it painful?
Do your joints, muscles, etcetera. Ache. I'll answer this
one. No, not specifically forShane um like it's it's not like there's
no like SMA specific pain. OccasionallyI'll have pain from just like being in
(19:30):
the same position you're like when wewake up if he hasn't moved a lot,
like his elbow will be sore orsomething, but not just like radiating
pain or anything, and not inany kind of like daily way. Yeah.
If I have pain periods, theyare in frequent. Yeah, and
from something specific that has happened,like if I squish his arm or something.
(19:55):
It usually had an injury something orlike haroldre you taking my tone,
I'll off, Oh right, thetoe nail was very painful. Yes,
how do you perceive sensation hot?Cold? My perception is normal, Yeah,
I know, normals, a weird, very average, typical, typical,
not affected by I am a bigbaby about hot feeds. Yeah,
(20:22):
I don't know what I think.I think I have a very tender tongue.
Yeah, tendered, Maybe it is. I don't know if it is
because you have very tender on bay, but like because your feet are very
tender in your like not in likeShane's very afraid of his feet being injured,
and I think that's a mental family. They're not. Yeah, they're
(20:42):
not toughened by walking around. Soyou're like, oh my little tosies that
you can't like relate that to myI don't know why your mouth is like
that. You even plenty of hotbags and still I sit my toffee like
the biggest bay, like like alltasted, be like yep, it's fine.
And then she will be like,oh my god. What are the
(21:06):
biggest changes you've seen on spinraza?I can say this one, yeah,
yeah, yeah, Shane has nolonger on spinraza. Actually now he's on
a different medication that's oral. Spinrazawas a spinal injection. He's now on
a Risdy and for both of them, first Spinraza that was first there was
a big change in holding his headup like next strength coughing, so like
(21:29):
his chest muscles felt more powerful.Yeah, um, chewing talking that was
way improved. Yeah, I thinkthat was like, oh and also your
core you were better at balancing,yeah, like less tippy. And then
for a Rizzdy, it's it's kindof stayed the same, mating all that.
Yeah, I think your arms gota bit weaker, which was so
strange. We don't really know why. I think it just targets different parts
(21:52):
of the body. Yeah, likethe and that's not as important as like
breathing and talking and chewing and allof that. So I feel like they
should say, because we do aboutlarge audience that like the the experiences of
these drugs are unique to the peopletaken like, so don't take my personal
experience as the truth about either ofthese medications. Yeah, a lot of
(22:15):
people one of these or the otherjust does not work for them, Like
they're like I felt nothing, Igot worse, like whatever. I feel
like that I need to say thatbecause like I've made the talentimes about these
drugs in the past and then hadlike formal like interactions with the pharmaceutical compitis
that are like, really have areport that you're experienced blah blah blah,
(22:37):
and there's meditation like yeah, thisis just my personal Yeah, yep,
I count Yeah and with that alarge caveats. Is this something that can
be tested for a while pregnant?Also? Love you guys? Yeah?
So they cams bringing for it inpretty natal tests down Yeah, and most
(23:04):
states hire it. Now, wellthat's newborn screening bad yeah. Um,
but like, yeah, you cantest for it. Yeah you can.
Do. They have special sports outthere for people with your condition. Yeah,
there are lots of adaptive sports.Uh, power saher power hockey are
(23:26):
pretty big here in Minneapolis. Idon't play that. I haven't yet.
I would love to. I don'tknow why you have. I don't know
really, it just feels like dauntedand to begin that you need like a
different reel chair and yeah, Idon't know. I I would love to
try it, but so far Ihaven't been brave enough. Yeah. Can
you explain the SMA types and howthey differ? And I know that sounds
(23:49):
like a ruction from my neurologious wife. Okay, Um, So there's I
think there's SMA zero that begins likein in in the womb, which is
like the most severe. Then SMAtype one is it begins like at birth
or shortly after, and that isalso more severe. They get less severe
(24:10):
as they go up in terms oflike how quickly yeah, your muscles are
affected, yeah, and how muchthey're affected. Yeah. So then Shane
is SMA type two, which isdefined by like you never walk. So
like Shane had symptoms when he waslike about almost a year old where he
was not trying to crawl, yeah, but it was like his arms and
(24:33):
like mouth like all that breath likebreathing muscles weren't as I guess you're breathing
all those kind of war but likehe wasn't as affected until he was older.
Like you could eat a burger normallywith your hands and like your two
would normally for you know ya,until you were like in a extrevity strength.
Yeah, a lot to be herein my keeenage years. Yeah,
(24:55):
I used to get the light ofmy own hair, yeah, and I
was like dirty. Oh I knowyou would like let yourself in at home
you had a key and you know. Uh. Then SMA type three is
people who have walked or still walk, And then I think there's SMA type
four that they're they are, andthen there's some that are like SMA without
something that's just like different and it'snot like the same yeah, same gene
(25:19):
thing, I don't know, butthose are like the general ones, and
even within those specific types, there'sa huge variance of experience. Like other
people with SMA type two can stillhound their hair in their thirties. Yeah,
so you know, they difference andpeople that also have to type like
type two are less strong than you. So there's a huge range. And
(25:42):
that's all the treatments available. Now. Yeah, if you get on your
treatment when you're a baby, year, don't follow this path. You don't
follow any of what we just said. Yeah. Yeah, seriously, there's
kids at like the SMA conference thathave type one who were treated at birth
and they're walking. Yeah, they'relike asymptomatic, you know. So it's
(26:02):
it's that kind of a thing.Now, do you remember when you first
realized you had a disability? Notreally like, yeah, I was in
my wheel chair at the age oftwo. Yeah, so like from as
early as I that my bradenhaid likeperhaps has memories and stuff or like sense
(26:22):
of self. Yeah. I wasusually a be a chair. Yeah,
I don't know. I knew,like when I was a literally kid getting
around my neighborhood and like playing withmy friends that they didn't all use beal
chairs, So like kind of understoodthat. Yeah, I didn't really deeply
think about it about it. Let'sdo you really how did you grow to
(26:48):
be so confident and self assured.I work with kids with SMA and hope
to instill strength, confidence and selfesteem. Yeah, yeadn't it really was
my parents letting me and then careaging me to do someone was on my
own. Yeah. So they didn'tsay we're gonna walk you ever did Ben's
house and like mandar your play?They were like, go and play like
(27:11):
the other kids that the neighbor heardplay. Yeah. So yeah, they
really encourage me day figure out life. Obviously walls have parted me, but
you know, probably to be independentlyindependent from a young age. Yeah,
Um, gosh, that's for you. I don't want one for you,
(27:33):
Hannah, or should I say Shane? Yeah, people are like I was
asking Shane a question, Why didHannah answer it? Hannah is me and
I am Hanna. I really wantto ask you one that you won't know.
Try me. Why is something youlove physically about having yesterday? Mmmm?
(28:02):
That you have a chair wherever yougo? But I think that's true.
Let me think more. What doyou love physically about having us to
I That I get to carry youinto the pool and hold you close.
That's literally probably physical closeness with me, I can't think of. Yeah,
(28:22):
when I'm in the pool ahead thatis basically smothering me the whole time.
Yeah, m hm, you haveany different response, like physically it does
make for a good excuse to getout of them. Yeah, I didn't
think that was like I meant physically, Yeah, this is kind of devilution
(28:44):
of me. No, it's agreat excuse. But yeah, I can
get out of pretty much sometimes truthfully, when I'm you know, tired,
and sometimes when I just need tonot be doing any sometime. Yeah,
you don't feel well? Everyone hugeper That was another question I saw was
what's a perk that you love thatonly you get to experience that? And
(29:04):
like cutting lines like when we wentto the Eiffel Tower in Paris, there
was like a what three hour wait? And we were escorted to the top
of the Eiffel Tower. They likemoved crowds out of the way. Yeah,
it was just special treatment. Amazingoften because of my disability, shouldn't
be that way, but that theroad should just be fully acceptable and we
(29:25):
should treat the same of people thesame way. Retreat Now that one I'm
talking about the Eiffel Tower lines lines. That was nice because you get like,
you can't go to ninety percent.No, that's not true. You
can't go to I don't know sixtypercent of the places in Paris. Well
I didn't get to the actual topof the Eiffel Tower, that's true.
(29:45):
So you deserve to not wait inthe line for a half experience, you
know, like give you the perkswhere you get them, because there's other
things that you are completely excluded from. Yeah, that's reasonable, right,
Yes, great phrase, gam Yes, I really would like to keep that
line park, But mostly I justwanted to keep being held by my wife
in the pool. Yeah, allright, reirinitate one break and then we're
(30:08):
gonna be bad with Bingo. Brichis as absurd, unknown and weird as
it sounds. We'll be right back. All right, we are back and
it is time to play bingo.Not going to be confused with carry differ
Bingdo that I made for Hannah.We were getting didno One is a different
(30:33):
bingo game. I had seen somepeople like share this in their Instagram stories
and stuff over the years, andso I googled wheelchair user bingo. This
came up. It's it's posted ina lot of places, so I don't
know who the original person is thatmade this, but it has like things
that people say to you if youuse a wheelchair. So we're gonna go
through them and see if you getbingo. Let's see how many of them
(30:56):
I can say that I've experienced.First one, sorry our building is not
accessible too many times? No,not yet. Next, can you have
sex? I have at answered it. I was about to say yeah,
but if you had to play umyeah, I mean we get that question
(31:18):
time online every day. That's whatit is. There are things that people
say, yes, you haven't tryto thin if I've ever been after that,
like in person, yeah, Imean by friends and stuff. Yeah,
but not like maybe I speaking phrasedin a nice like yeah, whole
life is yeah, literally I'm prayingfor you. Yes, get that all
(31:47):
the time, and I don't.I have nothing against you pray or religion,
but I don't feel like I needto be prayed for. Yeah,
I don't. If you're walking throughthe grocery store and someone comes up,
I mean maybe some people appreciate this, but they just like begin to pray
over you for you to have abetter life. You might be like,
(32:08):
why do you think that I,out of everyone in here, have the
worst life. I'm actually okay rightnow. And then I said this a
lot behindness in the world. Ifyou're privately praying for me, are you
praying for it? Are you prayingthat I'm live of the walk? Are
you praying that my life improves?Because I'm telling you in hundreds of videos
(32:30):
that I have a great life thatdoes not need improving in the mayor yard,
So I don't need the prayers.Thank you, but I don't need
them. Thank you, not aboutthat at least. All right, be
positive, I know you'll walk again. Oh yeah, I've gotten this.
(32:51):
A lot of people, older peoplewill often come up to me and encourage
me, like not to give up. Hope, Yeah, keep fighting,
you'll you'll get there. This Iwon't. I have it did And there
forever. No, Uh, whathappened to you? Yeah? This is
(33:13):
one that tids. Yeah, definitelyI have been already. That's bingo.
You got Bingo. I'm gonna readyou one other like row and see if
you get Bengo that way? Okay, do you diagonal? I loved um?
Yes, So what happened to youis one? Then? Is it
permanent? Yeah, you've gotten thatquestion unless there's a new dread that completely
(33:37):
remires my DNA. Yeah, aswe understand that it's permanent. Yes,
it must be nice not having togo to work. Have you gotten that?
I don't think I've got because youdo work right now? Like people
wouldn't say that. Yeah, soyou didn't get Bengo? Can I have
a go? That's like about usingyour chair? But people don't really,
(33:59):
I mean people say jokingly. Butremember at like outdoor like festivals. Yeah,
really, a festival is a greatplace for many of these states to
happen, because if we're just walkingdown the road, we'll get like cat
called like disability cat haled by peoplethat'll be like may I returned? Yeah,
(34:20):
give me a chair? Yeah,I wish I had a seat.
How fast is that they go?Do you have a license for that.
Uh do you know blank they're ina wheelchair too. Yep, get that
a lot. I get people haveit up to me. I'm saying hey
Jacob ye, or hey you knowReggie yeah, and I'm like, no,
(34:45):
I'm sorry, and they're like,oh, wow, you dressed like
my nephew. Someone too close tothem. It shouldn't be it shouldn't be.
Mistake me. But the usually bea chair. So here's another one.
Have you heard about stem cell research? We get that here and there.
(35:07):
We did a lot of bizarre emailsencouraging me a lot alternatives, Yes,
like treatments, not that stem cellsare fringe, but like that's just
to go to. People will belike, stem cell research must cure whatever
you've got going on, and it'slike, that is literally not at all
(35:29):
what I have going on. It'snot. But i M prefer the ones
that are like I have found thedock there, yeah, in the hills
of the Himalaya, and she hasproven that dorgi varies cure your muscle weakness.
No, no, you seem veryhappy. Yeah, with the implication
(35:51):
that that is surprising. Yeah,and then you're too young to be in
a wheelchair. No, I don'treally ever had that with Yeah, I
feel like that is more like you'reI think that's more for people who go
into a wheelchair that have walked beforeand like look like they could walk.
(36:13):
Yeah, you know, like Idon't think people would ever be like you
don't look like you need that.Like some of the ones on here are
like, you know, like you'retoo pretty to be in a wheelchair,
which a girl would get, notyou, but you know you're too young
to be in a wheelchair. Whenit's a power chair, I feel like
you don't get as much. No, and and like you conlcted me,
Yeah, and I understand that Ideserve to be in that chair. Yeah,
(36:34):
you don't get the ones that arelike are you sure you need that?
Or like you don't look sick.That was also on there, because
you look like you would use awheelchair, so they're like checks out the
little knees and they're like, yeah, that's the stay in there. But
I'm gonna stay in fair for you. Yeah that was fun. Yeah,
I you got beaus. No onedoes bad joke better than you. Were
(37:02):
you. I'm going to take youout to dinner. Oh you were doing
that anyway, I know we havea reservation already. Yeah, the whole
month to figure out with my prideas well. Okay, all right everyone,
that is SMA Pride episode. Arewe going to do SMA Pride episode
(37:24):
every week of August? Well,because us, we don't figure out our
episodes until about a half hour beforethat remains to be seen. That remains
to be seen. I don't thinkso, everyone, don't worry. We
will change the theme. Shane doesnot get four episodes dedicated to this,
well, I'm gonna approach for it. Okay. I then we did an
advocate, absolutely very good communditator.Well, if you enjoyed this episode,
(37:47):
please like, comment, subscribe,give us a review. And it's a
junkyard out there. And this junkyardis proudly owned and operated by a beautiful,
heroic, brave, funny crowd individualwho lives with us and may form not everyone
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(00:23):
I have found the dot gear inthe hills of the Himalaya and she has
proven that dorgi varies. Here yourmuscle weaitness no no no oh. They
(00:46):
did in with a trumpet because it'sSMA Pride months. It is yea your
special month. And did SMA Pridemonth Jindal, Oh, geez as Sam
May as Sam May? I haveas Sam May all day. I am
(01:07):
great, I am great, Ihave as Sam Nay, I'm great.
God so much worse than I thoughtit would be. Annah, it's just
my Pride month. Is your favoritemonth of the year? Is it my
favorite month? I know it's yourfavorite months. My Pride month is a
month to honor the thriving community,the driving SMA community. Yeah, there
(01:34):
you go, and to celebrate andembrace the experience of living with SMA.
Yeah. Well, some people docall it SMA Awareness Month, Yes,
and then a faction if people callit SMA Pride Month, you were in
that faction. Yeah, it's allpretty much the same, right, It's
just about awareness. Just sounds moremedical, So you don't really need like
(01:55):
awareness of no, and if youwant to channel, you're aware of about
something. Yeah, So we're gonnatake the pride to end all. Yeah,
and I did. Whenever you liketalk to people about that, the
immediate response is often wait, you'reproud to have SMA, Like, how
is that possible? Isn't disability abad thing? Good rhetorical question or good
(02:21):
good question that you're posing to yourselfto answer. Interesting that you ask that
hypothetical whole person. This is likea a long journey for many people with
SMA, many people with disabilities,is like getting from a point of not
feeling pride in your disability or youridentity and moving towards having pride in it
(02:46):
and embracing it. And for mespecifically, like my keenage and early fundies,
I did not have pride in myselfand my disability. I did everything
I could to like not be disabledto others, Yeah, and yeah,
that's the thing, is like theway you describe it, it's all about
(03:07):
how people perceived you. It wasn'tlike you were trying to not be disabled
at home. It was like youdidn't want to be labeled with that at
school, right. I was worriedabout the social implications yea of having the
disability, having estimate. Yeah,And unfortunately I really internalized the messages that
(03:28):
society has given me about disability,that it's a tragedy and that I'm worthless
and I'm lovable and all the filmwas that we always see in stories about
disability. So I didn't feel pride. I mean, like the only thing
you would have seen in the newswas that maybe someone would pity ask you
to prom and they might get afront page newspaper for it, exactly that
(03:52):
stories. Yeah. Or you knowBullion of chairs handed the football to run
five yards, yeah, and noone talls him. Not the kind of
things that you were interested in.And so you know, it wasn't until
I got older, met Hannah,met other people with disabilities that were older
(04:14):
than me or my age who wereout there just living their lives, not
worrying about the perception or others becausethey felt pride in who they were and
what their disability meant. And thatwas like a big shift for me to
get there for years and I flounderedalong the way at points, but today,
(04:36):
like I love my life with thedisability, I love even my life
with the SMA, and I don'tfeel like they are a negative part of
my distance. As I said thatsentence, I thought that we hadn't hit
heard oh boy, and I verytrying to hold it was like looking at
(04:57):
all the lights that need to beon. Don't worry, we're recording.
So I thought it want me todo for Uma Pride Month is celebrate Uma,
celebrate you for the whole episode.Yeah, this is like a repeat
of your birthday. So maybe justtell me everything that you love about me.
Anything that's anything that celebrates Shane inany way is his favorite thing ever.
(05:18):
So now Shane's going to talk aboutsome of the things that he is
proud of that kind of have todo with SMA. Uh. And I
just want to tease him because hewrote out a list and why a little
list, and it's the cutest thingin the world. I am proud of
my organization. You are number one. Might be might not be able to
(05:39):
move my feet, but I canwrite a list. You can make a
list. I will make lists.I can put a title. I'm surprised
there's not an Excel document that's sittingthere. I've originized it in a very
cell like way. Diad what youhad, which was just notes, but
um, I was in a rush. Okay, I'll make it into it
(06:00):
self way there, just to besafe. But here are some of the
things that I'm proud about, andthen and you can reflect upon them.
Yeah, I'll see if I agreewith your self description. Yes, that
will be fun, all right.Number one, I am proud that I
learned to be proud of my disability. It was not easy, and it
did take some serious self reflection andlike realizing that maybe I wasn't being as
(06:29):
healthy or as kind to myself asI could be, and realizing like the
negative implications that it had on mylife and on other people, Like I
perceived other disabled people negatively because Ifelt negatively about myself. Yeah, so
I am never wrote books and Iwrote books, you know, and blogs
and stuff where I wasn't always themost disability kind or accept him. Yeah.
(06:56):
So I'm proud that I learned tobe pad And I mean in general,
people changing their minds is a reallybig thing. So that was a
big thing to change your mind about. So maybe give me a grade for
each line? How good of me? Was it? A plus? They
don't all have to be A Well, I'm going to be afraid if I
give you anything under an A plusnumber two. I am proud of my
(07:17):
sense of humor, oh plus,And I don't mean there's bradshally like there
are tons of disab about people funnierthan me, but I am proud that,
like I use my humor to makeother people feel comfortable about disability tolpits
(07:40):
that maybe aren't always approachable. Yeah, do you agree? I agree?
I already give you my A plus. I mean that's a huge part of
our content is trying to make thingsthat we talk about educational and also fun
for people to listen to. Andyour humor is like the main part of
that when you first like learned aboutme and then we began to talk.
(08:03):
Yeah, right, it's disability andor suma something that felt hard to approach
for you or like tabboo, Oh, that's a good question. You remember,
I know, I don't. Iwish I remembered. I mean not
I don't remember ever feeling like itwas taboo. Maybe like right in the
beginning, I was like, Iprobably shouldn't ask about it. I don't
(08:26):
know I probably thought that. ButI also think that you brought topics up,
you know, to me, sothat I didn't really have moments where
I was like, I really needmore information, Like I never felt that.
So yeah, but you're good attalking about stuff. You even said
maybe that I humorously broached topics wellon our first visit. People know that
you made a bingo sheet for meto fill out with the care activities.
(08:48):
Yeah, very humorous, of veryhumorous of you. Yeah, I love
kay. This is that something mightsound weird, but I am proud that
I moved out of my parents' house. Oh that's a plus. I love
the environment dad. But actually,I'm gonna give you a I'm gonna give
you an an. I'll describe whylater. That's offensive. I know.
(09:11):
On my Pride month, I haveto give you something other than an A
plus. You would dare and Idon't like. Living with your parents is
not an objectively bad thing. Welive with my parents. Yeah, exactly,
Like this isn't the cent if you'reliving your parents. It's bad.
Yeah, but I was afraid tomove out of my parents' house because they
(09:33):
had always been the ones that didmy care. And it was a big
mental and emotional leap for me tomove not just out of their house,
but a thousand miles away yea,to have a brand new care giver and
like care of situation. Yeah,well they know that, and like not
(09:58):
having my parents two round to behelping out. Yeah, and I bravely,
yes, forged a new path yeafor myself. Well, yeah,
you came to me, you leaptinto my arms and carried me away.
Well that's why I'm giving you ana minus is because you did it,
and you moved into an apartment withme. You never liked it, you
(10:22):
didn't go because some people like goto college all caregivers like they do that,
you know you, it was alittle bit easier than some people where
they're just like moving into an apartmenthiring caregivers. Yeah, I can't give
you an A plus. If theyget an A plus, you get an
a minus. So the cheer oflike goodness, yeah, is that you
(10:43):
hired caregivers. Yeah, you're onyou you like move out and you handle
it. All you know, Idon't know. Yeah I did. I
just think that's a lot of steps. That's a lot scarier than moving into
an apartment with me, because ifyou're moving out to live on your own,
yeah, like hired caregivers, you'remaking every decision, you know your
own exactly. You and me sharedevery like. I'm not giving myself an
(11:03):
a plus for moving in with you, right, because that wasn't very difficult.
Should but it was harder for you. It's one of the best things
you've ever done. It was,But I get a beat because it wasn't
as brave. You get an aminus, and people who moved out on
their own get an a plus.And you have people that live in their
parents had a plus. They do. I'm just proud because I was afraid,
bit I did plus plus. Iam proud of the boats ever and
(11:31):
to educate people about SMA. Yeah. And although some parts of those early,
like my first book, nicely,yeah, I had something with it.
Today I'm not. It's thrilled thatI wrote down for all the eternity.
Yeah, but some of them disabilityrelated, some of them not.
(11:52):
Yes, equally horrible that you wrotethem. I was young and once again,
it's very young. I have justfound that, you know, from
like having an idea to write abook, I wanted to be out there.
I did it. I want andnow those are out there and real
(12:15):
in the world. Yeah, sure, I'll buy them because it's it's a
pregnant a plus people who like,haven't read your first book and have no
idea what's in it, and you'realways giving it like like I'm always be
Yeah, I just had to hatethat book so much. I don't hate
to read it. I would recommendjust giving a few of the chapters about
(12:37):
other other people. Well one otherthere's one other person in there I think
I can't remember. I honestly didn'tread the whole book. I found it
to be a poor, poor book, and yet you're giving it an appreciate.
I liked your second book. I'mgiving you an a plus because you
wrote the book. People love it, Like so many people I've seen come
up to you and been like,I read this book. I absolutely love
(12:58):
it, and I'm like, didyou I read about previous young friends?
So yeah, though you wrote aboutone girlfriend right who you said you were
going to marry. Yes, butthere's another story that one doesn't. I
think the one that says I'm goingto marry this person. And the best
part about this is that when thebook came out, they had already broken
up. So like Shane sent thebook in and they broke up like a
(13:22):
week later, and then he waslike, can I get that back?
And he wasn't able to get itback, so it had to be published
after they broke up, and youwould only dated for like a month for
you lasses it was not anyway readthe book. Actually my mind, I
actually liked the book. I dolike the book. It's funny. Every
(13:43):
other chapter is not offensive to you, No, it's not. That's just
so funny. Anyway, we'll putyeah, the next and maybe last thing.
Yeah, the last thing that I'mproud of is my superb communication skills
(14:03):
slash my ability to advocate for myself. Yes, it is not easy in
like medical set aims, or insuranceset aims, or inaccessibility set aims.
To stand up for yourself and youknow, dictate how you're going to live
(14:24):
your life when there are other maybeprofessionals disagreeing with you. But I've out
endured it, like standing it forwhat I need, what I want and
how I want to live my lifeand realizing that like just because I have
a disability doesn't mean that I amlike a patient that needs to be managed
(14:48):
by doctors. Yeah. Every doctoris like, oh, you're right.
I'm want to say, oh,I don't listen to your doctor. But
there are people with disabilities who andI've fallen victim to this at times to
myself, like I take doc.There's orders as like the bo and all,
(15:11):
even if they don't drive with like, but I know about my body.
Yeah. And I think that alsoprobably started in school when you were
doing like your I E. P. And you you know, spoke up
for yourself about what you wanted andteachers were like that's not how we do
it, but you were like,this is how I'm going to do it.
I mean to my parents feel liketeaching me how to do that?
(15:33):
Well, yeah, definitely tell peoplewhat I need how I want them was
to be. Yeah. So andit works in our relationship too. Your
communication skills, not the telling peoplehow it's I just mean your communication skills
are you know, a huge apositive in your relationships too. Thank you,
Loving life. Yeah you're saying noauthentically or because you know that's like
(15:56):
when people are like, what areyour favorite things about Shane? That's always
one of them is your ability tocommunicate and how you bring that out of
me better? Man, I justhealed some warm and fuzzy, A plus
on every count. All right,give me have you pride? Month boy.
We're gonna take your break. AndI'm really do that because I put
(16:18):
out a request to my Instagram followersfor questions about SMA and you. We're
you going to answer some of them. Let me get back. All right,
we are back. I have thequestions here on Shane's phone. I'm
going to select them. You gotall the questions? Oh my god,
(16:41):
there's a lot of repeats, sosorry if we don't get to get to
all of them. Yeah, there'slike there's a thousand questions, but well,
I'll just pick them as we go. And Hana, can you answer
some as well? I want tosee how well you know me for so
as like a answer as me.Yeah, okay, I'm gonna give you
a softball first. Is it thereason you're so funny? Oh? We
(17:03):
just addressed that. Who asked methat? Zoe? Zoe? Thank you?
And yes, okay, what doyou feel is the hardest misconception to
deal with when it comes to SMA. I feel the immediate assumption by most
strangers that I am socially and intellectuallyincapable. Like the dut response to me
(17:34):
is often like keep treat me likea baby, and to assume that I
am not an adult that can carryon an adult interaction. Yeah, yeah,
definitely miss for you. Now,all right, okay, when were
you diagnosed? And do you havefriends with the same conditions? The same
(17:55):
person Shane was diagnosed when he wasabout a year old and think it was
like eleven months into the doctor andaccurate, I know you well, and
yes he does have friends with thesame condition. Yeah, I'm not gonna
like listen to that, my guess. But yes, does it affect your
breathing? Yes, so the voluntaryeffects voluntary muscles, they sure the ones
(18:22):
that you control voluntary because it affectsthe motor neurons. So like, it
doesn't affect any muscles that are theones that like you're hurt, like all
those ones there can be competitions,but not like your heart muscle deterior right,
um, but anyway, yeah,so the muscles in your chest that
(18:44):
allow your long spanned, and contractare voluntary and h they are we can
buy. So the main result ofthat is that when I get sick,
I typically end up with like respiratoryissues and it's harder for me to half
out whatever is in my lungs.So I have devices to help with that,
(19:07):
like a nebulizer and half assist,which is like a vacuum. Yeah,
for you, you haven't used ina decade. H Is it painful?
Do your joints, muscles, etcetera. Ache. I'll answer this
one. No, not specifically forShane um like it's it's not like there's
no like SMA specific pain. OccasionallyI'll have pain from just like being in
(19:30):
the same position you're like when wewake up if he hasn't moved a lot,
like his elbow will be sore orsomething, but not just like radiating
pain or anything, and not inany kind of like daily way. Yeah.
If I have pain periods, theyare in frequent. Yeah, and
from something specific that has happened,like if I squish his arm or something.
(19:55):
It usually had an injury something orlike haroldre you taking my tone,
I'll off, Oh right, thetoe nail was very painful. Yes,
how do you perceive sensation hot?Cold? My perception is normal, Yeah,
I know, normals, a weird, very average, typical, typical,
not affected by I am a bigbaby about hot feeds. Yeah,
(20:22):
I don't know what I think.I think I have a very tender tongue.
Yeah, tendered, Maybe it is. I don't know if it is
because you have very tender on bay, but like because your feet are very
tender in your like not in likeShane's very afraid of his feet being injured,
and I think that's a mental family. They're not. Yeah, they're
(20:42):
not toughened by walking around. Soyou're like, oh my little tosies that
you can't like relate that to myI don't know why your mouth is like
that. You even plenty of hotbags and still I sit my toffee like
the biggest bay, like like alltasted, be like yep, it's fine.
And then she will be like,oh my god. What are the
(21:06):
biggest changes you've seen on spinraza?I can say this one, yeah,
yeah, yeah, Shane has nolonger on spinraza. Actually now he's on
a different medication that's oral. Spinrazawas a spinal injection. He's now on
a Risdy and for both of them, first Spinraza that was first there was
a big change in holding his headup like next strength coughing, so like
(21:29):
his chest muscles felt more powerful.Yeah, um, chewing talking that was
way improved. Yeah, I thinkthat was like, oh and also your
core you were better at balancing,yeah, like less tippy. And then
for a Rizzdy, it's it's kindof stayed the same, mating all that.
Yeah, I think your arms gota bit weaker, which was so
strange. We don't really know why. I think it just targets different parts
(21:52):
of the body. Yeah, likethe and that's not as important as like
breathing and talking and chewing and allof that. So I feel like they
should say, because we do aboutlarge audience that like the the experiences of
these drugs are unique to the peopletaken like, so don't take my personal
experience as the truth about either ofthese medications. Yeah, a lot of
(22:15):
people one of these or the otherjust does not work for them, Like
they're like I felt nothing, Igot worse, like whatever. I feel
like that I need to say thatbecause like I've made the talentimes about these
drugs in the past and then hadlike formal like interactions with the pharmaceutical compitis
that are like, really have areport that you're experienced blah blah blah,
(22:37):
and there's meditation like yeah, thisis just my personal Yeah, yep,
I count Yeah and with that alarge caveats. Is this something that can
be tested for a while pregnant?Also? Love you guys? Yeah?
So they cams bringing for it inpretty natal tests down Yeah, and most
(23:04):
states hire it. Now, wellthat's newborn screening bad yeah. Um,
but like, yeah, you cantest for it. Yeah you can.
Do. They have special sports outthere for people with your condition. Yeah,
there are lots of adaptive sports.Uh, power saher power hockey are
(23:26):
pretty big here in Minneapolis. Idon't play that. I haven't yet.
I would love to. I don'tknow why you have. I don't know
really, it just feels like dauntedand to begin that you need like a
different reel chair and yeah, Idon't know. I I would love to
try it, but so far Ihaven't been brave enough. Yeah. Can
you explain the SMA types and howthey differ? And I know that sounds
(23:49):
like a ruction from my neurologious wife. Okay, Um, So there's I
think there's SMA zero that begins likein in in the womb, which is
like the most severe. Then SMAtype one is it begins like at birth
or shortly after, and that isalso more severe. They get less severe
(24:10):
as they go up in terms oflike how quickly yeah, your muscles are
affected, yeah, and how muchthey're affected. Yeah. So then Shane
is SMA type two, which isdefined by like you never walk. So
like Shane had symptoms when he waslike about almost a year old where he
was not trying to crawl, yeah, but it was like his arms and
(24:33):
like mouth like all that breath likebreathing muscles weren't as I guess you're breathing
all those kind of war but likehe wasn't as affected until he was older.
Like you could eat a burger normallywith your hands and like your two
would normally for you know ya,until you were like in a extrevity strength.
Yeah, a lot to be herein my keeenage years. Yeah,
(24:55):
I used to get the light ofmy own hair, yeah, and I
was like dirty. Oh I knowyou would like let yourself in at home
you had a key and you know. Uh. Then SMA type three is
people who have walked or still walk, And then I think there's SMA type
four that they're they are, andthen there's some that are like SMA without
something that's just like different and it'snot like the same yeah, same gene
(25:19):
thing, I don't know, butthose are like the general ones, and
even within those specific types, there'sa huge variance of experience. Like other
people with SMA type two can stillhound their hair in their thirties. Yeah,
so you know, they difference andpeople that also have to type like
type two are less strong than you. So there's a huge range. And
(25:42):
that's all the treatments available. Now. Yeah, if you get on your
treatment when you're a baby, year, don't follow this path. You don't
follow any of what we just said. Yeah. Yeah, seriously, there's
kids at like the SMA conference thathave type one who were treated at birth
and they're walking. Yeah, they'relike asymptomatic, you know. So it's
(26:02):
it's that kind of a thing.Now, do you remember when you first
realized you had a disability? Notreally like, yeah, I was in
my wheel chair at the age oftwo. Yeah, so like from as
early as I that my bradenhaid likeperhaps has memories and stuff or like sense
(26:22):
of self. Yeah. I wasusually a be a chair. Yeah,
I don't know. I knew,like when I was a literally kid getting
around my neighborhood and like playing withmy friends that they didn't all use beal
chairs, So like kind of understoodthat. Yeah, I didn't really deeply
think about it about it. Let'sdo you really how did you grow to
(26:48):
be so confident and self assured.I work with kids with SMA and hope
to instill strength, confidence and selfesteem. Yeah, yeadn't it really was
my parents letting me and then careaging me to do someone was on my
own. Yeah. So they didn'tsay we're gonna walk you ever did Ben's
house and like mandar your play?They were like, go and play like
(27:11):
the other kids that the neighbor heardplay. Yeah. So yeah, they
really encourage me day figure out life. Obviously walls have parted me, but
you know, probably to be independentlyindependent from a young age. Yeah,
Um, gosh, that's for you. I don't want one for you,
(27:33):
Hannah, or should I say Shane? Yeah, people are like I was
asking Shane a question, Why didHannah answer it? Hannah is me and
I am Hanna. I really wantto ask you one that you won't know.
Try me. Why is something youlove physically about having yesterday? Mmmm?
(28:02):
That you have a chair wherever yougo? But I think that's true.
Let me think more. What doyou love physically about having us to
I That I get to carry youinto the pool and hold you close.
That's literally probably physical closeness with me, I can't think of. Yeah,
(28:22):
when I'm in the pool ahead thatis basically smothering me the whole time.
Yeah, m hm, you haveany different response, like physically it does
make for a good excuse to getout of them. Yeah, I didn't
think that was like I meant physically, Yeah, this is kind of devilution
(28:44):
of me. No, it's agreat excuse. But yeah, I can
get out of pretty much sometimes truthfully, when I'm you know, tired,
and sometimes when I just need tonot be doing any sometime. Yeah,
you don't feel well? Everyone hugeper That was another question I saw was
what's a perk that you love thatonly you get to experience that? And
(29:04):
like cutting lines like when we wentto the Eiffel Tower in Paris, there
was like a what three hour wait? And we were escorted to the top
of the Eiffel Tower. They likemoved crowds out of the way. Yeah,
it was just special treatment. Amazingoften because of my disability, shouldn't
be that way, but that theroad should just be fully acceptable and we
(29:25):
should treat the same of people thesame way. Retreat Now that one I'm
talking about the Eiffel Tower lines lines. That was nice because you get like,
you can't go to ninety percent.No, that's not true. You
can't go to I don't know sixtypercent of the places in Paris. Well
I didn't get to the actual topof the Eiffel Tower, that's true.
(29:45):
So you deserve to not wait inthe line for a half experience, you
know, like give you the perkswhere you get them, because there's other
things that you are completely excluded from. Yeah, that's reasonable, right,
Yes, great phrase, gam Yes, I really would like to keep that
line park, But mostly I justwanted to keep being held by my wife
in the pool. Yeah, allright, reirinitate one break and then we're
(30:08):
gonna be bad with Bingo. Brichis as absurd, unknown and weird as
it sounds. We'll be right back. All right, we are back and
it is time to play bingo.Not going to be confused with carry differ
Bingdo that I made for Hannah.We were getting didno One is a different
(30:33):
bingo game. I had seen somepeople like share this in their Instagram stories
and stuff over the years, andso I googled wheelchair user bingo. This
came up. It's it's posted ina lot of places, so I don't
know who the original person is thatmade this, but it has like things
that people say to you if youuse a wheelchair. So we're gonna go
through them and see if you getbingo. Let's see how many of them
(30:56):
I can say that I've experienced.First one, sorry our building is not
accessible too many times? No,not yet. Next, can you have
sex? I have at answered it. I was about to say yeah,
but if you had to play umyeah, I mean we get that question
(31:18):
time online every day. That's whatit is. There are things that people
say, yes, you haven't tryto thin if I've ever been after that,
like in person, yeah, Imean by friends and stuff. Yeah,
but not like maybe I speaking phrasedin a nice like yeah, whole
life is yeah, literally I'm prayingfor you. Yes, get that all
(31:47):
the time, and I don't.I have nothing against you pray or religion,
but I don't feel like I needto be prayed for. Yeah,
I don't. If you're walking throughthe grocery store and someone comes up,
I mean maybe some people appreciate this, but they just like begin to pray
over you for you to have abetter life. You might be like,
(32:08):
why do you think that I,out of everyone in here, have the
worst life. I'm actually okay rightnow. And then I said this a
lot behindness in the world. Ifyou're privately praying for me, are you
praying for it? Are you prayingthat I'm live of the walk? Are
you praying that my life improves?Because I'm telling you in hundreds of videos
(32:30):
that I have a great life thatdoes not need improving in the mayor yard,
So I don't need the prayers.Thank you, but I don't need
them. Thank you, not aboutthat at least. All right, be
positive, I know you'll walk again. Oh yeah, I've gotten this.
(32:51):
A lot of people, older peoplewill often come up to me and encourage
me, like not to give up. Hope, Yeah, keep fighting,
you'll you'll get there. This Iwon't. I have it did And there
forever. No, Uh, whathappened to you? Yeah? This is
(33:13):
one that tids. Yeah, definitelyI have been already. That's bingo.
You got Bingo. I'm gonna readyou one other like row and see if
you get Bengo that way? Okay, do you diagonal? I loved um?
Yes, So what happened to youis one? Then? Is it
permanent? Yeah, you've gotten thatquestion unless there's a new dread that completely
(33:37):
remires my DNA. Yeah, aswe understand that it's permanent. Yes,
it must be nice not having togo to work. Have you gotten that?
I don't think I've got because youdo work right now? Like people
wouldn't say that. Yeah, soyou didn't get Bengo? Can I have
a go? That's like about usingyour chair? But people don't really,
(33:59):
I mean people say jokingly. Butremember at like outdoor like festivals. Yeah,
really, a festival is a greatplace for many of these states to
happen, because if we're just walkingdown the road, we'll get like cat
called like disability cat haled by peoplethat'll be like may I returned? Yeah,
(34:20):
give me a chair? Yeah,I wish I had a seat.
How fast is that they go?Do you have a license for that.
Uh do you know blank they're ina wheelchair too. Yep, get that
a lot. I get people haveit up to me. I'm saying hey
Jacob ye, or hey you knowReggie yeah, and I'm like, no,
(34:45):
I'm sorry, and they're like,oh, wow, you dressed like
my nephew. Someone too close tothem. It shouldn't be it shouldn't be.
Mistake me. But the usually bea chair. So here's another one.
Have you heard about stem cell research? We get that here and there.
(35:07):
We did a lot of bizarre emailsencouraging me a lot alternatives, Yes,
like treatments, not that stem cellsare fringe, but like that's just
to go to. People will belike, stem cell research must cure whatever
you've got going on, and it'slike, that is literally not at all
(35:29):
what I have going on. It'snot. But i M prefer the ones
that are like I have found thedock there, yeah, in the hills
of the Himalaya, and she hasproven that dorgi varies cure your muscle weakness.
No, no, you seem veryhappy. Yeah, with the implication
(35:51):
that that is surprising. Yeah,and then you're too young to be in
a wheelchair. No, I don'treally ever had that with Yeah, I
feel like that is more like you'reI think that's more for people who go
into a wheelchair that have walked beforeand like look like they could walk.
(36:13):
Yeah, you know, like Idon't think people would ever be like you
don't look like you need that.Like some of the ones on here are
like, you know, like you'retoo pretty to be in a wheelchair,
which a girl would get, notyou, but you know you're too young
to be in a wheelchair. Whenit's a power chair, I feel like
you don't get as much. No, and and like you conlcted me,
Yeah, and I understand that Ideserve to be in that chair. Yeah,
(36:34):
you don't get the ones that arelike are you sure you need that?
Or like you don't look sick.That was also on there, because
you look like you would use awheelchair, so they're like checks out the
little knees and they're like, yeah, that's the stay in there. But
I'm gonna stay in fair for you. Yeah that was fun. Yeah,
I you got beaus. No onedoes bad joke better than you. Were
(37:02):
you. I'm going to take youout to dinner. Oh you were doing
that anyway, I know we havea reservation already. Yeah, the whole
month to figure out with my prideas well. Okay, all right everyone,
that is SMA Pride episode. Arewe going to do SMA Pride episode
(37:24):
every week of August? Well,because us, we don't figure out our
episodes until about a half hour beforethat remains to be seen. That remains
to be seen. I don't thinkso, everyone, don't worry. We
will change the theme. Shane doesnot get four episodes dedicated to this,
well, I'm gonna approach for it. Okay. I then we did an
advocate, absolutely very good communditator.Well, if you enjoyed this episode,
(37:47):
please like, comment, subscribe,give us a review. And it's a
junkyard out there. And this junkyardis proudly owned and operated by a beautiful,
heroic, brave, funny crowd individualwho lives with us and may form not everyone
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