April 23, 2025 • 29 mins
It is not trite to say that some people see challenges as obstacles and others see them as opportunities. Katy Arvidson was ten years old when she was diagnosed with Pompe disease. In spite of that diagnosis, she kept going and eventually obtained her Master’s Degree in Social Work. Katy is currently Ms. Wheelchair Alaska, embracing a platform of not just surviving but thriving. She talks about her life, work, and dedication to helping people. Katy can be supported and reached through The Dane Foundation, whose mission is to provide for the unique needs of individuals with physical and developmental disabilities: http://thedanefoundation.org/donate.html More information about the Ms. Wheelchair USA competition can be found at: https://www.mswheelchairusa.org/
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We're always interested in hearing from individuals or organizations who are working in substance use disorder treatment or prevention, mental health care and other spaces that lift up communities. This includes people living those experiences. If you or someone you know has a story to share or an interesting approach to care, contact us today!
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:12):
Welcome everybody.
This is Avoiding the AddictionInfliction, brought to you by Westward
Consulting and the Kenosha CountySubstance Use Disorder Coalition.
I'm Mike McGowan.
You know, it's not trite to say thatsome people see challenges as obstacles
and others see them as opportunities.
Katie Arvidson was 10 years old whenshe was diagnosed with Pompe disease.
(00:33):
In spite of thatdiagnosis, she kept going.
And eventually obtained hermaster's degree in social work.
She's now a retired, licensed clinicalsocial worker and advocate for
persons who experience disabilitiesand mental health challenges.
She recently joined the advisory councilfor the Alaska Disability Law Center.
Where she focuses on the overlap ofdisabilities and mental health, and
(00:57):
since this is the beginning of MentalHealth Month, I thought it would be
a great opportunity to have Katie on.
She is also currently Ms. WheelchairAlaska, embracing a platform of not
just surviving, but thriving and willbe competing, I believe, this summer
in Ohio for the national competition.
We're gonna talk aboutour story and work today.
Welcome Katie.
(01:18):
Thank you.
Okay.
I had to look it up, so I'msure I'm not the only one.
Start us off by tellingus what Pompe disease is.
I got that right.
I pronounce it right, right.
You did.
Yeah.
Pompe's disease.
This is a very interesting fact.
I didn't know this till a few days ago.
He was in the Netherlands, Dr. Pompe, whodiscovered the disease, and he died during
(01:38):
World War II protecting Jewish people.
Which is pretty incredible story.
Anyway, so Pompe's disease,the way I describe it best,
it's a rare muscular dystrophy.
In the United States there'sonly about 5,000 of us total.
And essentially what happensis I'm missing an enzyme.
(01:59):
My body does not produce an enzymethat it should, and so I'm not
able to break down complex sugars.
And all of that materialbuilds up in my muscle tissue
and wastes the muscle tissue.
It's progressive.
But everybody has a very differenttimeline depending on how much
(02:21):
enzyme your body produces.
So in the infantile form it used to bethat they didn't produce any enzyme and
they would've died within a couple years.
It would've impacted their heart.
Thankfully, I don't haveany impact in my heart.
And so I have more of what'scalled the juvenile form.
So I produce more than the babies.
(02:42):
But then there's also like adults who arelike, well past midlife in their fifties
and sixties who are just being diagnosed.
Like they didn't start havingsymptoms until their fifties.
So it's a very wide sort of range aroundhow devastating Pompe's disease can just
(03:03):
be to your body, if that makes sense.
Yeah.
I was reading an article about you andit, and it said that when you were in
school that you knew, oh, here we go.
'Cause you were havingdifficulty managing stairs.
So did you like, know that eventuallyyou'd end up in a chair and if so,
what does that do to your psyche?
(03:26):
Man, that's a really good question.
I didn't know.
There was so little information whenI was diagnosed, like no information.
I got the diagnosis and thedoctor said, well, good luck.
You probably won't liveto see adulthood, but...
Wow, wow.
There was no treatment, therewas no information, just there
(03:47):
was nothing at that time.
And so I you know, grew up like everykid does kind of normally through high
school and then around 20 years old whenI was in college I'm all over campus.
I'm carrying my backpack aroundand parking in the parking lot.
(04:09):
Have to go up this huge set ofgiant stairs to get to my classes.
I just started not being able toget up those stairs, like exhausted.
Like when you get to the top of thestairs, I can't pick up my legs anymore.
Wow.
And that's when it kind ofclicked, like, oh, this is real.
(04:33):
Like, I've known it for mostof my life, but I just didn't.
It just wasn't a partof my life until then.
And still even then, you know,you don't know how it's, I didn't
know how it was gonna end up.
I didn't know how I would progress.
I didn't know if it wouldgo slowly or quickly.
I didn't know I would end upin a wheelchair or needing
(04:55):
the other AIDS that I use.
So it just sort of happens,it just evolves over time.
And it's sort of like continual lossesthat you just get used to, like grief
after grief, after grief of loss.
I think that's kind of thebest way I can describe it.
Yeah, that's a great wayto describe it actually.
(05:17):
Well you said you didn't knowmuch about it, but apparently
neither did the doctors.
You got some advice that was bad, right?
I did.
Yeah.
I think they were thinking like.
I've got childhood diabetes or something.
They told me to suck on somehard candy, which is complex
sugar when I'm feeling tired.
(05:37):
And it was just, it wasso unknown back then.
And I do think one of the bigimpacts it had on my life.
Is i've always been more intouch with my own mortality.
Mm-hmm.
I've always had this thing looming overmy head, like, I've got this disease.
I don't know what it's gonnabe like, but I know I have it.
(05:58):
And
my sense of mission and purpose inmy life has been driven by that.
Does that have something to do withwhat you majored in in college?
It doesn't really.
I went to college, liberal arts school.
I really liked psychology.
I took a introductory class.
(06:19):
I really liked it.
And so I said, okay, Iwanna major in psychology.
Not really knowing where that would lead.
But I enjoyed it.
I enjoyed learning about it.
And then I started working ata home for children who were in
the foster care system and didn'thave foster care placement.
(06:40):
And I loved those kids so much.
That was why I decidedto go into social work.
Hmm.
To see what those kids weregoing through was heartbreaking.
But I love developing relationships withthem and helping them think through the
(07:00):
hard parts of their life and being ableto comfort them in some ways and cheer
them on and give them a safe place.
How did you do all this?
Because as you're going to school, asyou're working, I also read that you were
doing these, how often were you going toNew York from Alaska for treatment, right?
(07:23):
Yeah.
Not until af it was about my mid twenties.
So I had graduated college,graduated middle, or graduate school.
And my body was slowly deteriorating,but not, not to the point where
I couldn't function, right.
I started using a cane at some point.
(07:43):
And then in my mid twenties,after my husband Josh and I
got married they started thefirst clinical trial for a drug.
It's essentially an enzymereplacement treatment.
And it pumps the enzyme intomy body and it slows the
progression of the disease down.
That clinical trial started after wehad moved back to Alaska, and so I was
(08:09):
flying every two weeks from Alaska toNew York City to get this treatment.
It was terrible.
(chuckle) I can't, I think people makethat trip once a year would say that.
I can't begin to describe howoverwhelming... It was like I just
(08:33):
put my head down and I kept moving.
Yeah, right.
That's where I was going.
Yeah.
I was working still, I bring my laptopalong and work on the plane and get
my treatment and come back home.
It was a sort of a three day deal.
I'd fly to New York City,which would be all day.
I'd get there at like twoor three in the morning.
(08:54):
Right.
They pumped the enzyme intome and I'd come home the
next day and go back to work.
How do I describe it?
It was like I was on acontinual two week loop.
It was consistent.
It was a routine.
I had a routine, butit was so overwhelming.
(09:16):
It was like I'd travel, I'd comehome, I'd wash my clothes, I'd go to
work, I'd packed my bag, I'd travel,I'd come home, I'd wash my clothes.
Like it, it, there wasn't...For me, the future disappeared.
It was just, I have to put myhead down and get through this.
How'd you cope?
(09:37):
Not well, honestly.
It was really hard on our marriage.
Yeah, I bet.
You know, we, we hadn't been marriedvery long, maybe two or three years
before I started this clinical trial.
It was really hard on me personally, justemotionally, there were actually a couple
(09:58):
things that helped me get through it.
I was able to bring a companionwith me on these trips.
And so I started inviting young women thatI worked with, or I knew through church.
And like they grew up in Alaska, right?
They've never been to New York City.
And their joy and their excitement aboutgetting to go to New York City with
(10:21):
me, build my cup, you know, like they,they would get, and they're lining up
like, when can we go when can we go?
And so that part of it was.
Part of it helps so much.
And we'd save our per diems and buy thecheap tickets to a Broadway play after
(10:43):
I got my infusion and go out for dinner.
And that part of it was great.
I mean, New York has such a buzz, right?
The energy is so exciting there.
And so that part was,that part filled my cup.
Is it same buzz as where you'rein Fairbanks, is that right?
Oh my gosh, no.
(11:03):
(laugh) I, no, no.
It's so slow up here.
Like this really rhythmis not like a city at all.
It's just chill.
Yeah.
Well, did I, I have to askyou, did the infusions work?
I think it did.
It's not a cure, it's a treatment.
(11:24):
But it slowed theprogression down, I believe.
I'm not sure I would be aliveif I hadn't had the treatment.
Do you still do 'em?
Yes.
Yep.
20 years later, every two weeks.
But I do it in Alaska now.
Oh, all right.
You just saw my reaction.
I'm like...
No, no, no, no.
Still flying 20 years laterevery two weeks to do it.
(11:45):
Oh my gosh.
No, no.
I did that about five years.
And then and then they were able tobring the treatment up to Alaska for me.
Well, thank goodness.
That's great.
Oh, yes.
You were telling me off theair that you also coped in a
not the healthiest way too.
You started using some substancesto be able to get through.
I did.
(12:06):
I started drinking alcohol.
I was flying so often.
That can't be good.
Right?
I was bumped up into firstclass, almost every flight,
and they served free alcohol.
And so I'd be on the plane and I'd havea glass of wine, and then two glasses
of wine, and then three glasses of wine.
And then I started drinking at home and
(12:31):
it's,
hmm.
It is complicated.
It helped me get through, butit also dulled me in a sense.
All the way around?
Not just...
All the way around.
Right.
Yeah.
So that had to take a toll on your work,your optimism, your marriage again.
(12:54):
Yeah, absolutely.
Yeah.
All of it.
And then I also in combination withalcohol, and this part was truly terrible.
I had a doctor prescribe a benzodiazepine.
Yeah.
I was waiting for that.
And I got addicted to that too.
And, like I'm a social worker,I should know better, right?
(13:15):
But I was in so much pain.
Yeah.
I'm still fighting to walk,like falling and getting
concussions and it hurt so bad.
And I'm like, I am going towalk as long as I possibly can.
And that benzodiazepine incombination with the alcohol.
(13:37):
Was I, I was a zombie.
It, it was, it was horrible.
I was blacking out every night.
I'd wake up in the morningand I'd be like, oh no.
Did I yell at Josh again?
Did I scream at him again?
And I was blacking out every likenight, like I could not remember
(13:58):
what happened the night before.
How did you turn that around?
Oh man, this is great.
Part of my story.
COVID hit.
(laugh) Yeah.
(laugh) God bless COVID.
It was COVID.
Thank you COVID!
Yeah, no, what happened is,mental health became available
through distance delivery.
(14:20):
I couldn't get mental health treatmentbecause I was in a wheelchair and I
couldn't drive anymore and nobody inmy community, in Eagle River, it's
close to Anchorage, about a 30 minutedrive to Anchorage, but nobody in
my community would take Medicare.
Like there were literally no therapistshere and I couldn't get to see a therapist
(14:44):
and COVID hit and we started being ableto get mental health treatment through
Zoom and that I turned it around.
Good for you.
Yeah.
I saw a couple of socialmedia posts that you did.
That some people have lumped everybody,some people in the government,
(15:08):
into a fairly disgusting category.
Yeah, I'm a social worker.
It hurt and it ticked me off to be honest.
People say the stupidest things.
Yeah.
The cruelest things, Ithink on the internet.
But yeah, somebody said, basicallyhe was laughing about federal
(15:28):
programming being slashed for peoplewho depend on our social safety net,
Medicare, Medicaid, social security,you know, TANF, like everything.
And so it essentially was saying.
People who need that help are parasites.
That was the word that was used.
(15:48):
Parasites.
And yeah, not cool.
Not cool.
So I, you know, part of what I'm doing isMiss Wheelchair Alaska USA is, I am trying
to put out information about disability,how it impacts our mental health.
But also provide like amessage of hope, right?
(16:10):
Like, yep, we may be in wheelchairs, butwe can still contribute to our society.
We still have things to say.
We still have things wewanna do with our lives.
And, if you haven't had the experienceof trying to live in a wheelchair,
most people just aren't aware of thetiny little things that we deal with
(16:32):
on kind of a day-to-day basis thatjust aren't a concern for other people.
They just never thinkabout these things, right?
And so part of my message is to be realand to be honest about what it's like
and educate people and provide some hope.
Well, I was thinking about that actually.
(16:53):
I was gonna ask you aboutthat because things that we
take for granted, a lot of us.
Like getting up in the morning,going to the bathroom and
brushing your teeth, right.
Yeah.
Are things that you have to put thoughtand planning into, and that Katy has
to take a toll on your mental health.
So you have to be vigilant with notonly the physical, but the emotional
(17:15):
and the mental part of it as well, tonot get down, to keep being hopeful.
Yep.
It's absolutely true.
As my disease progressed, therewas a period of time when I was
drinking and using substances.
I got to the point where I couldn'tget out of bed on my own anymore.
I needed somebody to help liftme up in the bed, swing my
(17:37):
legs over, and help me into mywheelchair, and I didn't have any...
I didn't have any in-home caregiving,so we found a neighbor who could
stop by about three o'clock in theafternoon and get me out of bed.
So I was in bed every day untilthree o'clock in the afternoon.
(17:58):
Wow.
Wow.
And talk about depression, I mean...
Yeah.
Just devastating.
I have in-home caregiving now,which has also changed my life.
The in-home caregiving andhaving therapy available.
But it is hard.
I can't just get upand go to the bathroom.
It's about a 10 minute processto get me to the bathroom.
(18:20):
We've made a lot ofmodifications to our home.
We're very blessed.
Josh has a good incomeand that definitely helps.
It makes it easier.
But that's not the case for a lotof people with disabilities and
a lot of people in wheelchairs.
We are lucky in the sense.
(18:41):
Other people live in pure poverty.
Mm-hmm.
And that's hard to watch.
My friends struggling with those things.
Are you also, well, Joshua was telling me,I, for those of you who are interested,
we interviewed Joshua a while back.
You can listen to his podcast, alittle different topic, but he was
(19:03):
saying how some people are confusedas far as what kind of insurance
they have, like in Alaska, right?
Alaska is called Denali Care, Ithink in Wisconsin BadgerCare,
but that's essentially Medicaid.
It is, yes.
People don't know that.
So are you and others concerned, worriedabout funding decreases or additional
(19:25):
hoops you would have to jump throughto be able to get just the basic care?
Absolutely.
Yeah.
Yes.
I can say in the disability communityright now, the fear is palpable.
It is real and genuine.
People are genuinely scared thatthey're not going to be able to
(19:46):
receive their healthcare anymore.
And in the House recently,they just passed a budget.
It's not the budget resolutionyet, but it's like the plan for
how they want to reduce spendingor increase spending for all of the
various committees and departments.
Right.
And Medicaid is under thesomething commerce, anyway, I
(20:12):
can't remember that part of it.
But part of the budget is thatthey want to slash $880 billion
out of that particular pocketof money, and that's Medicaid.
Mm-hmm.
That's Medicaid.
And you know, there's still alot that has to happen for that.
And so I hope that itdoesn't end up happening.
(20:35):
But the Republicans control the house,the Senate, and the executive branch,
and if they wanted to push thatfunding decrease through, they could.
People are important though.
And we've seen some of that lately wherepeople are like, whoa, whoa, whoa, whoa.
Out loud.
Which is interesting.
Yes.
But you also have gotten a lot of support.
I know Joshua's really supportive,but is Carol your mom, right?
(20:59):
Yes.
Okay.
Sorry to bring her up.
I wanna meet her.
She seems like a pip.
Oh, she is such a character.
Some of her comments on social mediaare, boy, she's a little tiger.
Yes, she is.
Yes she is.
It's really funny.
She went on and got her master's degreein social work too much later in life.
(21:20):
But yeah, she's fierce and fiery.
Like she was quick to like, boom,she took over the argument for you.
Oh yeah, she did.
Yep.
And I'm like, mom, slow down.
(laughs) Yeah, well, haven't we allsaid that at some point to our parents?
I'm like, mom, slow.
Like slow down.
(laughs) Like, part of what I'm tryingto do in my messaging with the Miss
(21:41):
Wheelchair thing is do it in a waythat everybody can hear the message.
Yes.
And so I don't wanna jump into justthe political divide and the arguing
and that I'm really trying to stayout of that because I want people,
everybody to be able to hear my message.
And but yeah, my momjust (laughs), she just.
(22:04):
Steps it and runs with it.
Well I think we first heard an Alaskanwoman talk about being a mama bear,
so I think you're on both sidesof the political spectrum there.
That is a big, that is big time.
True.
Is she coming with you to Ohio?
She's gonna meet me there, I think.
Yeah.
Really.
That's great.
And my dad and my stepmom,they're really supportive too.
They're not on social media.
(22:25):
And so I'll send themlittle posts that I do.
And they're very supportive too, andI am hoping they'll be there as well.
I'm gonna obviously put a link to yourstuff in here, but also a link to the
Miss Wheelchair USA pageant and somethingcalled the Dane Foundation, where people
can actually contribute and support thoseof you who are in competition for it.
(22:47):
Tell us a little bitabout the Miss, Ms. Right.
Do I get there?
Yes.
You wheelchair USA competition.
Yeah.
I, oh my gosh, I am enjoying it so much.
So I put in an application, it's anapplication process essentially, and I
was chosen to be Miss Wheelchair Alaska,USA, and they sent me a crown and a sash.
(23:10):
Which you have to wear when you're out.
Right?
I have to wear when I'm out.
Yes.
And it's very awkward.
(laughs)
Like extremely awkward.
All of us with our crowns.
I think some of us arehandling it better than others.
But on a flight we are going to Hawaiiand they announced it over the plane and
(23:31):
everybody started clapping and I'm justlike, oh my gosh, that's so embarrassing.
(laughs) That's so good.
Oh no, you need to get theprincess waved down then.
Oh, man.
Yes.
So Miss Wheelchair, USA isa pageant for women with
disabilities who use wheelchairs.
There's thousands of pageants allover the place for everything.
And only two pageants forwomen with disabilities who
(23:53):
primarily use wheelchairs.
And the Dane Foundation is anonprofit started by the people who
also run Miss Wheelchair USA andthey work in collaboration, the Dane
Foundation and Miss Wheelchair USA.
And the Dane Foundation reallypushes the message of acceptance
(24:16):
and accessibility and understanding.
And they provide like day to day needsfor people with all kinds of disabilities.
Like if they need some socks and theycan't afford socks, the Dane Foundation
will find a way to get them some socks.
And
(24:37):
truly, the people who run thoseorganizations do it purely out of love.
Yeah, I bet.
Just purely out of carefor people who need help.
So when you get to Ohio, I assume there'sinterviews and stuff you have to do.
Do you also get the opportunityto present your platform, which I
(25:01):
believe is on mental health, right?
Yeah.
Do a little TED Talk, as it were, maybe?
Mm-hmm.
Yep.
Exactly.
Exactly.
There's all kinds of thingsI'm trying to get ready for.
I was just gonna ask you whereyou're at with that process.
Oh my gosh.
It's like, it just hit me, it'sthree months away and I'm like,
oh, I've got so much do to.
(laughs)
I haven't even thought aboutbuying a dress yet, right?
(25:23):
Like, I'm supposed to get a formaldress and I'm like, oh my gosh,
where the heck am I gonna do that?
I don't know.
But yes, they have judges.
There's a few different rounds ofinterviews and then I've got five-ish
minutes on stage to talk about myplatform, which is mental health.
And I wanna talk about.
(25:45):
Two different things, but I'vereally gotta pare it down.
I'm not sure how I'm gonnafit it all into five minutes.
But what I wanna talk about is.
How to reduce the risk of mental healthtrouble when you have a disability or in
a chair or any kind of disability, right?
There are things we cando to reduce that risk.
(26:09):
And I wanna talk about the reality of it.
Like people with disabilitiesare at much higher risk of having
to deal with depression andanxiety and it's just a reality.
Right.
And then the other thing that I wannatalk about is not how we can help
ourselves, but pushing for systems change.
(26:31):
Mm-hmm.
Right?
Like increasing accessto mental health care.
Making sure that people withdisabilities have the supports, like
the in-home caregiving that they need.
Making sure that people withdisabilities have adequate
transportation so they can get out oftheir house and go shopping, right?
(26:52):
Like every kinds of things.
And those are larger policy piecesthat are threatened right now and,
I'm speaking up about that stuff.
Good for you.
Because that hurts Katy.
That hurts nobody, you know, come on.
Yeah.
And as you said, there are somegood things that did come out of
COVID and one of them was a sense ofcollaboration when people collaborate.
(27:15):
But the other is that access to care.
We have a lot of therapists wholisten to this and many who have been
on, who have been provided peoplecare who wouldn't otherwise get it.
Alaska is not exactly an urban centerwhere there's tons of treatment.
So there's distant places where ifthey don't have the internet, they
(27:37):
can't get medical care, let alone...
Mental health care.
Right.
Yeah.
It's absolutely a reality.
I mean, most of Alaska is notconnected to a road system.
Right!
And so people get to theirvillages by flying or snow machine.
And getting just even primarycare out there is hard.
(28:00):
And psychiatric care is like
unheard of almost.
I mean, it's so difficult to get anybodymental health treatment in those villages.
But truly, I think COVID changedthat, at least for mental health care.
Yeah, that's great.
Well, Katy I'll let people know, althoughthey can follow you now too, so...
(28:23):
Yes.
Good luck in Ohio.
I can't wait to see how it all goes.
I'm super excited and I've been developingfriendships and relationships with
the other gals too, which is great.
'cause I don't know any other women ina wheelchair like, it's just me up here.
I mean, there are other women.
But yeah, it's been great developingrelationships with them too.
(28:46):
And I don't think you shouldbe embarrassed at all.
I know if somebody provided me witha crown and a sash, I'd be wearing
it 24/7 until my friends and familywould say enough Mike (laughs)
(laughs) Take it off now.
I'd wear it around the house.
For those of you listening, youknow, there's links to the Dane
Foundation and the Ms. Wheelchaircompetition attached to the podcast.
(29:08):
Thanks, Katie.
Yeah.
This has been outstanding.
And what a incredibly resilientperson you are, inspiring.
Thank you.
I hope for all of you listening, you'reable to listen anytime you're able.
Until then, stay safe.
And I think Katy would say this too.
Stay informed.
Welcome everybody.
This is Avoiding the AddictionInfliction, brought to you by Westward
Consulting and the Kenosha CountySubstance Use Disorder Coalition.
I'm Mike McGowan.
You know, it's not trite to say thatsome people see challenges as obstacles
and others see them as opportunities.
Katie Arvidson was 10 years old whenshe was diagnosed with Pompe disease.
(00:33):
In spite of thatdiagnosis, she kept going.
And eventually obtained hermaster's degree in social work.
She's now a retired, licensed clinicalsocial worker and advocate for
persons who experience disabilitiesand mental health challenges.
She recently joined the advisory councilfor the Alaska Disability Law Center.
Where she focuses on the overlap ofdisabilities and mental health, and
(00:57):
since this is the beginning of MentalHealth Month, I thought it would be
a great opportunity to have Katie on.
She is also currently Ms. WheelchairAlaska, embracing a platform of not
just surviving, but thriving and willbe competing, I believe, this summer
in Ohio for the national competition.
We're gonna talk aboutour story and work today.
Welcome Katie.
(01:18):
Thank you.
Okay.
I had to look it up, so I'msure I'm not the only one.
Start us off by tellingus what Pompe disease is.
I got that right.
I pronounce it right, right.
You did.
Yeah.
Pompe's disease.
This is a very interesting fact.
I didn't know this till a few days ago.
He was in the Netherlands, Dr. Pompe, whodiscovered the disease, and he died during
(01:38):
World War II protecting Jewish people.
Which is pretty incredible story.
Anyway, so Pompe's disease,the way I describe it best,
it's a rare muscular dystrophy.
In the United States there'sonly about 5,000 of us total.
And essentially what happensis I'm missing an enzyme.
(01:59):
My body does not produce an enzymethat it should, and so I'm not
able to break down complex sugars.
And all of that materialbuilds up in my muscle tissue
and wastes the muscle tissue.
It's progressive.
But everybody has a very differenttimeline depending on how much
(02:21):
enzyme your body produces.
So in the infantile form it used to bethat they didn't produce any enzyme and
they would've died within a couple years.
It would've impacted their heart.
Thankfully, I don't haveany impact in my heart.
And so I have more of what'scalled the juvenile form.
So I produce more than the babies.
(02:42):
But then there's also like adults who arelike, well past midlife in their fifties
and sixties who are just being diagnosed.
Like they didn't start havingsymptoms until their fifties.
So it's a very wide sort of range aroundhow devastating Pompe's disease can just
(03:03):
be to your body, if that makes sense.
Yeah.
I was reading an article about you andit, and it said that when you were in
school that you knew, oh, here we go.
'Cause you were havingdifficulty managing stairs.
So did you like, know that eventuallyyou'd end up in a chair and if so,
what does that do to your psyche?
(03:26):
Man, that's a really good question.
I didn't know.
There was so little information whenI was diagnosed, like no information.
I got the diagnosis and thedoctor said, well, good luck.
You probably won't liveto see adulthood, but...
Wow, wow.
There was no treatment, therewas no information, just there
(03:47):
was nothing at that time.
And so I you know, grew up like everykid does kind of normally through high
school and then around 20 years old whenI was in college I'm all over campus.
I'm carrying my backpack aroundand parking in the parking lot.
(04:09):
Have to go up this huge set ofgiant stairs to get to my classes.
I just started not being able toget up those stairs, like exhausted.
Like when you get to the top of thestairs, I can't pick up my legs anymore.
Wow.
And that's when it kind ofclicked, like, oh, this is real.
(04:33):
Like, I've known it for mostof my life, but I just didn't.
It just wasn't a partof my life until then.
And still even then, you know,you don't know how it's, I didn't
know how it was gonna end up.
I didn't know how I would progress.
I didn't know if it wouldgo slowly or quickly.
I didn't know I would end upin a wheelchair or needing
(04:55):
the other AIDS that I use.
So it just sort of happens,it just evolves over time.
And it's sort of like continual lossesthat you just get used to, like grief
after grief, after grief of loss.
I think that's kind of thebest way I can describe it.
Yeah, that's a great wayto describe it actually.
(05:17):
Well you said you didn't knowmuch about it, but apparently
neither did the doctors.
You got some advice that was bad, right?
I did.
Yeah.
I think they were thinking like.
I've got childhood diabetes or something.
They told me to suck on somehard candy, which is complex
sugar when I'm feeling tired.
(05:37):
And it was just, it wasso unknown back then.
And I do think one of the bigimpacts it had on my life.
Is i've always been more intouch with my own mortality.
Mm-hmm.
I've always had this thing looming overmy head, like, I've got this disease.
I don't know what it's gonnabe like, but I know I have it.
(05:58):
And
my sense of mission and purpose inmy life has been driven by that.
Does that have something to do withwhat you majored in in college?
It doesn't really.
I went to college, liberal arts school.
I really liked psychology.
I took a introductory class.
(06:19):
I really liked it.
And so I said, okay, Iwanna major in psychology.
Not really knowing where that would lead.
But I enjoyed it.
I enjoyed learning about it.
And then I started working ata home for children who were in
the foster care system and didn'thave foster care placement.
(06:40):
And I loved those kids so much.
That was why I decidedto go into social work.
Hmm.
To see what those kids weregoing through was heartbreaking.
But I love developing relationships withthem and helping them think through the
(07:00):
hard parts of their life and being ableto comfort them in some ways and cheer
them on and give them a safe place.
How did you do all this?
Because as you're going to school, asyou're working, I also read that you were
doing these, how often were you going toNew York from Alaska for treatment, right?
(07:23):
Yeah.
Not until af it was about my mid twenties.
So I had graduated college,graduated middle, or graduate school.
And my body was slowly deteriorating,but not, not to the point where
I couldn't function, right.
I started using a cane at some point.
(07:43):
And then in my mid twenties,after my husband Josh and I
got married they started thefirst clinical trial for a drug.
It's essentially an enzymereplacement treatment.
And it pumps the enzyme intomy body and it slows the
progression of the disease down.
That clinical trial started after wehad moved back to Alaska, and so I was
(08:09):
flying every two weeks from Alaska toNew York City to get this treatment.
It was terrible.
(chuckle) I can't, I think people makethat trip once a year would say that.
I can't begin to describe howoverwhelming... It was like I just
(08:33):
put my head down and I kept moving.
Yeah, right.
That's where I was going.
Yeah.
I was working still, I bring my laptopalong and work on the plane and get
my treatment and come back home.
It was a sort of a three day deal.
I'd fly to New York City,which would be all day.
I'd get there at like twoor three in the morning.
(08:54):
Right.
They pumped the enzyme intome and I'd come home the
next day and go back to work.
How do I describe it?
It was like I was on acontinual two week loop.
It was consistent.
It was a routine.
I had a routine, butit was so overwhelming.
(09:16):
It was like I'd travel, I'd comehome, I'd wash my clothes, I'd go to
work, I'd packed my bag, I'd travel,I'd come home, I'd wash my clothes.
Like it, it, there wasn't...For me, the future disappeared.
It was just, I have to put myhead down and get through this.
How'd you cope?
(09:37):
Not well, honestly.
It was really hard on our marriage.
Yeah, I bet.
You know, we, we hadn't been marriedvery long, maybe two or three years
before I started this clinical trial.
It was really hard on me personally, justemotionally, there were actually a couple
(09:58):
things that helped me get through it.
I was able to bring a companionwith me on these trips.
And so I started inviting young women thatI worked with, or I knew through church.
And like they grew up in Alaska, right?
They've never been to New York City.
And their joy and their excitement aboutgetting to go to New York City with
(10:21):
me, build my cup, you know, like they,they would get, and they're lining up
like, when can we go when can we go?
And so that part of it was.
Part of it helps so much.
And we'd save our per diems and buy thecheap tickets to a Broadway play after
(10:43):
I got my infusion and go out for dinner.
And that part of it was great.
I mean, New York has such a buzz, right?
The energy is so exciting there.
And so that part was,that part filled my cup.
Is it same buzz as where you'rein Fairbanks, is that right?
Oh my gosh, no.
(11:03):
(laugh) I, no, no.
It's so slow up here.
Like this really rhythmis not like a city at all.
It's just chill.
Yeah.
Well, did I, I have to askyou, did the infusions work?
I think it did.
It's not a cure, it's a treatment.
(11:24):
But it slowed theprogression down, I believe.
I'm not sure I would be aliveif I hadn't had the treatment.
Do you still do 'em?
Yes.
Yep.
20 years later, every two weeks.
But I do it in Alaska now.
Oh, all right.
You just saw my reaction.
I'm like...
No, no, no, no.
Still flying 20 years laterevery two weeks to do it.
(11:45):
Oh my gosh.
No, no.
I did that about five years.
And then and then they were able tobring the treatment up to Alaska for me.
Well, thank goodness.
That's great.
Oh, yes.
You were telling me off theair that you also coped in a
not the healthiest way too.
You started using some substancesto be able to get through.
I did.
(12:06):
I started drinking alcohol.
I was flying so often.
That can't be good.
Right?
I was bumped up into firstclass, almost every flight,
and they served free alcohol.
And so I'd be on the plane and I'd havea glass of wine, and then two glasses
of wine, and then three glasses of wine.
And then I started drinking at home and
(12:31):
it's,
hmm.
It is complicated.
It helped me get through, butit also dulled me in a sense.
All the way around?
Not just...
All the way around.
Right.
Yeah.
So that had to take a toll on your work,your optimism, your marriage again.
(12:54):
Yeah, absolutely.
Yeah.
All of it.
And then I also in combination withalcohol, and this part was truly terrible.
I had a doctor prescribe a benzodiazepine.
Yeah.
I was waiting for that.
And I got addicted to that too.
And, like I'm a social worker,I should know better, right?
(13:15):
But I was in so much pain.
Yeah.
I'm still fighting to walk,like falling and getting
concussions and it hurt so bad.
And I'm like, I am going towalk as long as I possibly can.
And that benzodiazepine incombination with the alcohol.
(13:37):
Was I, I was a zombie.
It, it was, it was horrible.
I was blacking out every night.
I'd wake up in the morningand I'd be like, oh no.
Did I yell at Josh again?
Did I scream at him again?
And I was blacking out every likenight, like I could not remember
(13:58):
what happened the night before.
How did you turn that around?
Oh man, this is great.
Part of my story.
COVID hit.
(laugh) Yeah.
(laugh) God bless COVID.
It was COVID.
Thank you COVID!
Yeah, no, what happened is,mental health became available
through distance delivery.
(14:20):
I couldn't get mental health treatmentbecause I was in a wheelchair and I
couldn't drive anymore and nobody inmy community, in Eagle River, it's
close to Anchorage, about a 30 minutedrive to Anchorage, but nobody in
my community would take Medicare.
Like there were literally no therapistshere and I couldn't get to see a therapist
(14:44):
and COVID hit and we started being ableto get mental health treatment through
Zoom and that I turned it around.
Good for you.
Yeah.
I saw a couple of socialmedia posts that you did.
That some people have lumped everybody,some people in the government,
(15:08):
into a fairly disgusting category.
Yeah, I'm a social worker.
It hurt and it ticked me off to be honest.
People say the stupidest things.
Yeah.
The cruelest things, Ithink on the internet.
But yeah, somebody said, basicallyhe was laughing about federal
(15:28):
programming being slashed for peoplewho depend on our social safety net,
Medicare, Medicaid, social security,you know, TANF, like everything.
And so it essentially was saying.
People who need that help are parasites.
That was the word that was used.
(15:48):
Parasites.
And yeah, not cool.
Not cool.
So I, you know, part of what I'm doing isMiss Wheelchair Alaska USA is, I am trying
to put out information about disability,how it impacts our mental health.
But also provide like amessage of hope, right?
(16:10):
Like, yep, we may be in wheelchairs, butwe can still contribute to our society.
We still have things to say.
We still have things wewanna do with our lives.
And, if you haven't had the experienceof trying to live in a wheelchair,
most people just aren't aware of thetiny little things that we deal with
(16:32):
on kind of a day-to-day basis thatjust aren't a concern for other people.
They just never thinkabout these things, right?
And so part of my message is to be realand to be honest about what it's like
and educate people and provide some hope.
Well, I was thinking about that actually.
(16:53):
I was gonna ask you aboutthat because things that we
take for granted, a lot of us.
Like getting up in the morning,going to the bathroom and
brushing your teeth, right.
Yeah.
Are things that you have to put thoughtand planning into, and that Katy has
to take a toll on your mental health.
So you have to be vigilant with notonly the physical, but the emotional
(17:15):
and the mental part of it as well, tonot get down, to keep being hopeful.
Yep.
It's absolutely true.
As my disease progressed, therewas a period of time when I was
drinking and using substances.
I got to the point where I couldn'tget out of bed on my own anymore.
I needed somebody to help liftme up in the bed, swing my
(17:37):
legs over, and help me into mywheelchair, and I didn't have any...
I didn't have any in-home caregiving,so we found a neighbor who could
stop by about three o'clock in theafternoon and get me out of bed.
So I was in bed every day untilthree o'clock in the afternoon.
(17:58):
Wow.
Wow.
And talk about depression, I mean...
Yeah.
Just devastating.
I have in-home caregiving now,which has also changed my life.
The in-home caregiving andhaving therapy available.
But it is hard.
I can't just get upand go to the bathroom.
It's about a 10 minute processto get me to the bathroom.
(18:20):
We've made a lot ofmodifications to our home.
We're very blessed.
Josh has a good incomeand that definitely helps.
It makes it easier.
But that's not the case for a lotof people with disabilities and
a lot of people in wheelchairs.
We are lucky in the sense.
(18:41):
Other people live in pure poverty.
Mm-hmm.
And that's hard to watch.
My friends struggling with those things.
Are you also, well, Joshua was telling me,I, for those of you who are interested,
we interviewed Joshua a while back.
You can listen to his podcast, alittle different topic, but he was
(19:03):
saying how some people are confusedas far as what kind of insurance
they have, like in Alaska, right?
Alaska is called Denali Care, Ithink in Wisconsin BadgerCare,
but that's essentially Medicaid.
It is, yes.
People don't know that.
So are you and others concerned, worriedabout funding decreases or additional
(19:25):
hoops you would have to jump throughto be able to get just the basic care?
Absolutely.
Yeah.
Yes.
I can say in the disability communityright now, the fear is palpable.
It is real and genuine.
People are genuinely scared thatthey're not going to be able to
(19:46):
receive their healthcare anymore.
And in the House recently,they just passed a budget.
It's not the budget resolutionyet, but it's like the plan for
how they want to reduce spendingor increase spending for all of the
various committees and departments.
Right.
And Medicaid is under thesomething commerce, anyway, I
(20:12):
can't remember that part of it.
But part of the budget is thatthey want to slash $880 billion
out of that particular pocketof money, and that's Medicaid.
Mm-hmm.
That's Medicaid.
And you know, there's still alot that has to happen for that.
And so I hope that itdoesn't end up happening.
(20:35):
But the Republicans control the house,the Senate, and the executive branch,
and if they wanted to push thatfunding decrease through, they could.
People are important though.
And we've seen some of that lately wherepeople are like, whoa, whoa, whoa, whoa.
Out loud.
Which is interesting.
Yes.
But you also have gotten a lot of support.
I know Joshua's really supportive,but is Carol your mom, right?
(20:59):
Yes.
Okay.
Sorry to bring her up.
I wanna meet her.
She seems like a pip.
Oh, she is such a character.
Some of her comments on social mediaare, boy, she's a little tiger.
Yes, she is.
Yes she is.
It's really funny.
She went on and got her master's degreein social work too much later in life.
(21:20):
But yeah, she's fierce and fiery.
Like she was quick to like, boom,she took over the argument for you.
Oh yeah, she did.
Yep.
And I'm like, mom, slow down.
(laughs) Yeah, well, haven't we allsaid that at some point to our parents?
I'm like, mom, slow.
Like slow down.
(laughs) Like, part of what I'm tryingto do in my messaging with the Miss
(21:41):
Wheelchair thing is do it in a waythat everybody can hear the message.
Yes.
And so I don't wanna jump into justthe political divide and the arguing
and that I'm really trying to stayout of that because I want people,
everybody to be able to hear my message.
And but yeah, my momjust (laughs), she just.
(22:04):
Steps it and runs with it.
Well I think we first heard an Alaskanwoman talk about being a mama bear,
so I think you're on both sidesof the political spectrum there.
That is a big, that is big time.
True.
Is she coming with you to Ohio?
She's gonna meet me there, I think.
Yeah.
Really.
That's great.
And my dad and my stepmom,they're really supportive too.
They're not on social media.
(22:25):
And so I'll send themlittle posts that I do.
And they're very supportive too, andI am hoping they'll be there as well.
I'm gonna obviously put a link to yourstuff in here, but also a link to the
Miss Wheelchair USA pageant and somethingcalled the Dane Foundation, where people
can actually contribute and support thoseof you who are in competition for it.
(22:47):
Tell us a little bitabout the Miss, Ms. Right.
Do I get there?
Yes.
You wheelchair USA competition.
Yeah.
I, oh my gosh, I am enjoying it so much.
So I put in an application, it's anapplication process essentially, and I
was chosen to be Miss Wheelchair Alaska,USA, and they sent me a crown and a sash.
(23:10):
Which you have to wear when you're out.
Right?
I have to wear when I'm out.
Yes.
And it's very awkward.
(laughs)
Like extremely awkward.
All of us with our crowns.
I think some of us arehandling it better than others.
But on a flight we are going to Hawaiiand they announced it over the plane and
(23:31):
everybody started clapping and I'm justlike, oh my gosh, that's so embarrassing.
(laughs) That's so good.
Oh no, you need to get theprincess waved down then.
Oh, man.
Yes.
So Miss Wheelchair, USA isa pageant for women with
disabilities who use wheelchairs.
There's thousands of pageants allover the place for everything.
And only two pageants forwomen with disabilities who
(23:53):
primarily use wheelchairs.
And the Dane Foundation is anonprofit started by the people who
also run Miss Wheelchair USA andthey work in collaboration, the Dane
Foundation and Miss Wheelchair USA.
And the Dane Foundation reallypushes the message of acceptance
(24:16):
and accessibility and understanding.
And they provide like day to day needsfor people with all kinds of disabilities.
Like if they need some socks and theycan't afford socks, the Dane Foundation
will find a way to get them some socks.
And
(24:37):
truly, the people who run thoseorganizations do it purely out of love.
Yeah, I bet.
Just purely out of carefor people who need help.
So when you get to Ohio, I assume there'sinterviews and stuff you have to do.
Do you also get the opportunityto present your platform, which I
(25:01):
believe is on mental health, right?
Yeah.
Do a little TED Talk, as it were, maybe?
Mm-hmm.
Yep.
Exactly.
Exactly.
There's all kinds of thingsI'm trying to get ready for.
I was just gonna ask you whereyou're at with that process.
Oh my gosh.
It's like, it just hit me, it'sthree months away and I'm like,
oh, I've got so much do to.
(laughs)
I haven't even thought aboutbuying a dress yet, right?
(25:23):
Like, I'm supposed to get a formaldress and I'm like, oh my gosh,
where the heck am I gonna do that?
I don't know.
But yes, they have judges.
There's a few different rounds ofinterviews and then I've got five-ish
minutes on stage to talk about myplatform, which is mental health.
And I wanna talk about.
(25:45):
Two different things, but I'vereally gotta pare it down.
I'm not sure how I'm gonnafit it all into five minutes.
But what I wanna talk about is.
How to reduce the risk of mental healthtrouble when you have a disability or in
a chair or any kind of disability, right?
There are things we cando to reduce that risk.
(26:09):
And I wanna talk about the reality of it.
Like people with disabilitiesare at much higher risk of having
to deal with depression andanxiety and it's just a reality.
Right.
And then the other thing that I wannatalk about is not how we can help
ourselves, but pushing for systems change.
(26:31):
Mm-hmm.
Right?
Like increasing accessto mental health care.
Making sure that people withdisabilities have the supports, like
the in-home caregiving that they need.
Making sure that people withdisabilities have adequate
transportation so they can get out oftheir house and go shopping, right?
(26:52):
Like every kinds of things.
And those are larger policy piecesthat are threatened right now and,
I'm speaking up about that stuff.
Good for you.
Because that hurts Katy.
That hurts nobody, you know, come on.
Yeah.
And as you said, there are somegood things that did come out of
COVID and one of them was a sense ofcollaboration when people collaborate.
(27:15):
But the other is that access to care.
We have a lot of therapists wholisten to this and many who have been
on, who have been provided peoplecare who wouldn't otherwise get it.
Alaska is not exactly an urban centerwhere there's tons of treatment.
So there's distant places where ifthey don't have the internet, they
(27:37):
can't get medical care, let alone...
Mental health care.
Right.
Yeah.
It's absolutely a reality.
I mean, most of Alaska is notconnected to a road system.
Right!
And so people get to theirvillages by flying or snow machine.
And getting just even primarycare out there is hard.
(28:00):
And psychiatric care is like
unheard of almost.
I mean, it's so difficult to get anybodymental health treatment in those villages.
But truly, I think COVID changedthat, at least for mental health care.
Yeah, that's great.
Well, Katy I'll let people know, althoughthey can follow you now too, so...
(28:23):
Yes.
Good luck in Ohio.
I can't wait to see how it all goes.
I'm super excited and I've been developingfriendships and relationships with
the other gals too, which is great.
'cause I don't know any other women ina wheelchair like, it's just me up here.
I mean, there are other women.
But yeah, it's been great developingrelationships with them too.
(28:46):
And I don't think you shouldbe embarrassed at all.
I know if somebody provided me witha crown and a sash, I'd be wearing
it 24/7 until my friends and familywould say enough Mike (laughs)
(laughs) Take it off now.
I'd wear it around the house.
For those of you listening, youknow, there's links to the Dane
Foundation and the Ms. Wheelchaircompetition attached to the podcast.
(29:08):
Thanks, Katie.
Yeah.
This has been outstanding.
And what a incredibly resilientperson you are, inspiring.
Thank you.
I hope for all of you listening, you'reable to listen anytime you're able.
Until then, stay safe.
And I think Katy would say this too.
Stay informed.
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