September 5, 2024 • 30 mins
Join us as Mindy Henderson, Vice President of Disability Outreach and Empowerment for the Muscular Dystrophy Association (MDA), shares her inspiring journey with spinal muscular atrophy. Mindy offers a profound understanding of living with a neuromuscular disease, the impact of family support, and the transformative role of medical advancements. She also highlights MDA’s critical support, discusses her book "The Truth About Things that Suck," and the film "Good Bad Things." Plus, hear about her upcoming advocacy efforts in Washington D.C., emphasizing the importance of awareness, research, and civic engagement for individuals with muscular dystrophy.
Click the link to purchase tickets to stream “Good Bad Things”: veeps.com
Learn more about MDA at www.mda.org
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Perspective.
Perspective is spelledP-E-R-S-P-E-C-T-I-V-E.
Perspective the 30,000 footview.
Perspective put on someoneelse's shoes.
Perspective can also refer tothe state of existing in space
(00:20):
or one's view of the world.
Perspective R-E-A audioReemployability.
Speaker 2 (00:28):
Have you ever imagined what it would be like
to live in a wheelchair yourwhole life?
How would you feel to not beable to walk upstairs or even
out to the mailbox?
Imagine if you never had theability to walk or use your legs
and as you got older, themuscle weakness spread to your
arms, then eventually to yourlungs, making it difficult to
(00:49):
breathe.
Those are conditions that manypeople with muscular dystrophy
live with, some as babies andothers beginning as teens or
adults.
September is Muscular DystrophyAwareness Month, and I've had
the immense pleasure of speakingwith Mindy Henderson, Vice
President of Disability Outreachand Empowerment for the
Muscular Dystrophy Association.
Mindy not only does incrediblework for MDA, but is a personal
(01:13):
inspiration as well.
Speaker 1 (01:14):
According to Mayo Clinic, muscular dystrophy is a
condition that causes muscleweakness that gradually gets
worse.
It's caused by problems in thegenes that help protect muscle
fibers from damage.
Symptoms of the most commontype of muscular dystrophy begin
in childhood, mostly in boys.
Some types of musculardystrophy don't surface until
adulthood.
Treatments focus on managingsymptoms and slowing the course
(01:37):
of the disease.
Speaker 2 (01:38):
Muscular dystrophy.
Tell us a little bit about whatmuscular dystrophy is and how
it affects people.
Speaker 3 (01:45):
So muscular dystrophy , it's an interesting question
because you would think it's avery simple question.
But there is an actualcondition called muscular
dystrophy.
But muscular dystrophy is alsomore broadly used to talk about
the family of neuromuscularconditions and if you
(02:09):
extrapolate out all of thedifferent types and subtypes and
variations and things, thereare several hundred types of
neuromuscular disease andmuscular dystrophy is really
sort of that umbrella group thatholds them all together and
that people will refer to a lot.
(02:30):
And the Muscular DystrophyAssociation is actually the only
organization of its kind thatsupports the entire community of
neuromuscular conditions theentire community of
neuromuscular conditions.
Speaker 2 (02:50):
So, mindy, when we were talking yesterday, we got
through three quarters of ourconversation before you revealed
to me that you have a form ofmuscular dystrophy, right, and
you've had it since you were achild, is that right?
Speaker 3 (03:01):
That's true.
I have a form called spinalmuscular atrophy and there are
several types.
I have type two and I wasdiagnosed when I was only about
15 months old, and so you knowit's.
There are different ways tolook at disability.
I am a wheelchair user and havealways been.
(03:24):
I've never really stood orwalked, and so it's really what
I've always known, it's whatI've built my life around, and
so you know, in a lot of ways Ithink that that can be almost a
blessing.
I know so many people and thereare a lot of other
(03:45):
neuromuscular conditions thathave an adult onset and you know
I've, you know I've played thatout in my mind so many times
just that experience and howmuch harder it might be, not
that this doesn't have its hardmoments, but how much harder it
might be once you are.
(04:06):
You know, live a certainlifestyle for your entire life,
and then to lose that functionis quite devastating in a lot of
cases.
Speaker 2 (04:16):
So is there primarily ?
Does it begin with children?
You know, again, you mentionedthere's hundreds, right, so it's
really hard to nail downspecifics as to you know what
types of symptoms there are, butI imagine they're all related
in several ways if they're allkind of grouped together by MDA,
correct?
Speaker 3 (04:37):
Right that is true, and you know, it really does run
the gamut there.
Just within spinal muscularatrophy alone, I mentioned the
different types, and thedifferent types are really um,
one of the things that they'reindicative of is the age of
onset, and so type one is, youknow, oftentimes, at birth, um,
(05:00):
it can be um, observable, um, mytype is sort of um toddlerhood
I think I just made that word upand then there are also adult
onset forms of spinal muscularatrophy.
So you know, and that's justwithin that one disease class,
(05:26):
disease class.
So you know, there are a lot ofother conditions that are, you
know, run the gamut in terms ofmild and severe and age of onset
and just everything you couldpossibly imagine.
And one thing that's reallycool is that you know, I work
for the Muscular DystrophyAssociation and they have been
my family my whole life.
I was an ambassador for them,starting when I was about four
(05:48):
years old, and so I grew upalongside of them.
They were incredibly supportiveof my family and me as I grew
up, and one of the things that Ithink a lot of people don't
know about the MuscularDystrophy Association is that it
was the individuals working forthis organization and working
(06:13):
with the scientific communitythat defined the field of
medicine, of neuromuscularmedicine, that there was not
such a thing 75 years ago.
So I find that an interestinglittle factoid.
Speaker 2 (06:30):
Yeah, if it weren't for MDA, probably some of the
treatments that you've undergonewouldn't have been possible,
right, which is why they're sucha close family, right.
Speaker 3 (06:38):
Yes.
Speaker 2 (06:39):
Can you tell us a little bit about spinal muscular
atrophy?
Is there pain involved?
What happens?
How are you personally affected?
Speaker 3 (06:57):
Yeah, it's not.
In my particular case there,fortunately, is not a lot of
pain involved.
You know, I think any timeyou're sitting all day long,
every day, you know you developsome issues with your hips and
your joints and your spine andthings like that and that can
ebb and flow a little bit.
Some of those sort of ancillaryissues that creep up can be,
(07:22):
you know, cause a little bit ofdiscomfort or pain from time to
time.
But spinal muscular atrophy isa progressive condition so it
has gotten worse over the courseof my lifetime and you know,
really there's not a superreliable way to predict how much
(07:44):
it's going to progress.
It does vary a lot from personto person.
I could get into a little bitof the science of it, but I
think I would probably even boremyself.
But you know there are a lot ofthings under the hood, so to
speak, that affect the severityand how quickly it progresses or
doesn't progress and what sortof issues you're going to go on
(08:06):
to have.
In most cases with spinalmuscular atrophy, because of the
weakening of the trunk musclesand things, you develop
scoliosis.
That in a lot of cases has tobe corrected.
It did in my case and that wasa really tough surgery when I
was about 14 years old.
(08:27):
You know other hip and boneissues because of the lack of
weight bearing and things ofthat nature, and so really just
about every muscle in my body,um, is affected, and so I have
(08:48):
limited use of my arms.
Like I said, I don't stand orwalk, and yet I am a fiercely
independent person.
I always say that whoevercreated me had the best sense of
humor, because I was createdwith these limitations that make
me dependent on people.
But I am fiercely, fiercelyindependent and have a great
(09:11):
support system and have workedreally hard to create a life
where I can work and drive andhave a family and all of those
things.
Speaker 2 (09:20):
On REA Audio we talked to a lot of people that
have overcome tremendouscircumstances and you know
whether it's something that is adisease, a progressive disease
that they that was of no faultof their own, or if it was of an
accident, you know, whatever itis.
When we talk to these peoplethen I think the number one
(09:41):
thing that always stands out inmy mind is those people that
have overcome those tremendousodds always have a tremendously
positive attitude and obviouslyyou know it comes from you as
well.
I mean, you just emanate thatand I know that this is all
audio, but if folks could seeyour background, it's incredibly
(10:01):
uplifting and positive and justcomfortable.
And you talk about your supportsystem and I know that that's
always important in the processof somebody and I'm sure it
wasn't always like this for you.
You know ups and downs and Ican imagine going through life
as a child and into your teenyears has got to be tremendously
difficult.
But I'm curious, mindy, is itsomething that you think you
(10:26):
were just blessed with insidethat attitude?
It something that you think youwere just blessed with inside
that attitude, or is thatsomething that you realized that
you had to work on and is avery conscious effort that you
have to look at every day.
Speaker 3 (10:38):
You know, I think some of both and you know, first
of all, thank you for that.
You know I certainly have mydays where I don't feel as happy
and smiley.
I think that I really genuinelydid get lucky with the family
that I was born into, becauseyou know, they made the decision
(11:03):
.
You know my parents when I wasdiagnosed and I mentioned that I
was just a baby.
You know I was 15 months when Iwas diagnosed and they were
told at the time because so muchless was known about this
condition, that I probablywouldn't live to be three.
And the doctors told them, youknow, there were no treatments,
no therapies, no cures and,honest to goodness, they said
(11:27):
this to my parents to take mehome and let me be happy with
the time that I had and myparents, being who they are in
their infinite wisdom, decidedthat they were going to fight
for me and, despite what thedoctors said, they did physical
therapy with me and you knowthey didn't.
(11:47):
Let me ever make excuses forthings I didn't want to do just
because they were hard.
You know we lived in a and Iswear my parents were fantastic,
still are fantastic people, butyou know we lived in a
two-story house and my mom wouldhelp me, you know, kind of
(12:09):
crawl, shuffle myself up thestairs, and I'm sure that that
gutted her and was probably anincredibly difficult thing for
her to sort of make me do.
But I think it instilled amindset in me at a very young
age that nothing was going to bedifferent for me.
And you know, I may have to dothings differently, but the
(12:31):
outcomes could be the same.
And so I grew up just sort ofalmost taking for granted that I
could have and do anything thatI wanted in life.
I knew I was going to have towork for it and I certainly did.
But you know I really credit myparents with that kind of
outlook on things.
(12:52):
But you know, like I said, I'vehad times in my life where I've
had to make conscious decisionsabout who I wanted to be in
this world, and did I want to beangry and bitter or did I want
to be happy and make the best ofthings?
Speaker 2 (13:09):
Well, you've obviously made that second
choice, and in a very consciouseffort to do so More often than
not.
Speaker 3 (13:16):
Thank you.
Speaker 2 (13:17):
For sure.
So talk to us a little bitabout some of those treatments
that you had to undergo that arebecause of the Muscular
Dystrophy Association.
Speaker 3 (13:25):
Yeah, so I did grow up having to do all kinds of
physical and occupationaltherapy and let me tell you,
when I was a kid, I was a pillabout it.
I did not enjoy it and I feelso bad.
If any of my former physicaltherapists are listening, I
apologize, but I was yourtypical eight-year-old that
(13:46):
wanted to be outside playing andnot doing physical therapy.
But I was your typicaleight-year-old that wanted to be
outside playing and not doingphysical therapy.
But yeah, you know you spendall of this time sitting and so
you have to do things to keepyour body limber and to avoid
developing contractions and youknow all of those sorts of
things and maintain as muchstrength as possible, and so
(14:11):
that was one thing.
I had a number of surgeries.
I had some hip dislocationsbecause of the muscles' ability
to support the ball in thesocket and things like that my
spinal surgery, it and thingslike that my spinal surgery.
But to answer your morespecific question, there were no
(14:34):
treatments for this conditionuntil about eight years ago.
I want to say and I rememberthis like it was yesterday, I
will never forget it, becauseobviously you grow up hoping for
something, you know, somemiracle to come along and it was
December 23rd.
(14:55):
And you know, eight years ago,whatever, I guess, what was that
16.
?
Speaker 2 (15:01):
Yeah 2016.
Speaker 3 (15:11):
And yeah, and we had just had some friends over for
sort of a pre-holiday dinner andthey had left I got into bed
and pulled my laptop in with meand was going through email and
there was an email and thesubject line said first
treatment for SMA approved bythe FDA.
And this was before I wasworking for MBA.
I had heard through thegrapevine that there were some
promising things in the pipeline, but that was the first moment
(15:33):
that I knew that there wassomething and I just started to
cry and it was.
It was the miracle that I hadhoped for for so long, you know,
to go for, you know, 42 yearswith absolutely nothing that
anyone can do about this.
It was quite something.
And now there are actuallythree therapies on the market
(15:55):
now for SMA.
I've switched and I'm taking asecond therapy, but there's also
a gene therapy that's available, for I think it's children
under the age of two who arediagnosed and, you know, in a
lot of cases it can help prolongor even avoid a lot of the
(16:21):
symptoms of SMA for a very longtime.
Speaker 2 (16:25):
Wow, and that's all because of funding made by MDA.
Speaker 3 (16:41):
Yes, mda has been such a champion of.
You know, one of their, theirbig pillars is is science and
research and trying to get tothe bottom of these diseases,
and all of them are consideredrare diseases and so it's it's
an area that is so expensive todevelop therapies in, and you
know that funding is criticaland they are absolutely
brilliant and the network ofscientists and researchers that
(17:06):
they know and work closely withand the work that they're
funding is so exciting.
Speaker 2 (17:12):
So as the so you're the vice president of disability
outreach and empowerment.
You're also the editor in chiefof MDA Quest Media, which
includes a whole bunch of stuff,so you are super, super busy in
helping to get the word outabout muscular dystrophy and the
muscular dystrophy association.
So you have an integral part inmaking people aware of, you
(17:35):
know, muscular dystrophy as wellas their ability to be able to
help that.
So talk a little bit about thismonth.
September is traditionallymuscular dystrophy awareness
month.
How is MDA involved and whatare some of the things that
you're doing to bring attention?
Speaker 3 (17:50):
Thank you for that.
Yeah, mda, we have such a crazymonth planned and they really
hit it hard during the month ofSeptember for Muscular Dystrophy
Awareness Month, and they are,you know, it's really all hands
on deck to do fundraising, tocreate awareness, to do outreach
(18:17):
.
We've got programs running allthe time for people.
We just finished up with oursummer camp series, which is a
huge piece of the MBA ecosystem,so to speak.
It's where I went for eightyears every summer that taught
me about the possibilities formy life, and they're doing
(18:41):
education constantly.
We have a great education team.
I know I'm forgetting a thousanddifferent things, but we've got
campaigns running and things,and we have a lot happening with
Quest Media.
We've really sort oftransformed the Quest Media
(19:02):
platform into an adaptivelifestyle platform, and so my
hope is that we still cover alot of the science and research
of neuromuscular disease, but wealso have started branching out
into things like accessibletravel and adaptive fashion,
(19:23):
employment, education so manydifferent areas that span far
beyond the boundaries of theneuromuscular community.
I hope that there are a lot ofpeople listening who could also
potentially benefit from thecontent that we put out there.
So there's a lot happening andI would encourage anyone to go
(19:47):
check out the MDA website orMDAQuestorg.
Speaker 2 (19:51):
Now you wrote a book right called Good Bad Things.
Speaker 3 (19:55):
No.
Speaker 2 (19:57):
So actually you've done your research.
Speaker 3 (19:59):
Though Good Bad Things is.
I'm so glad you brought this up.
This is one of my favoritethings right now.
I feel like Oprah.
Right now I feel like Oprah.
Good Bad Things is a film thatwas co-written by a gentleman
with neuromuscular disease.
It was executive produced by agentleman named Steve Way, with
(20:22):
neuromuscular disease, starringDanny Kurtzman, who has
neuromuscular disease, and soit's really kind of the first of
its kind to be seen on the bigscreen and it's getting so much
traction you can go to Veepactually and watch.
There's going to be a virtualstreaming event with Q&As, and I
(20:46):
think I heard there's going tobe a stand-up comedy routine and
all kinds of fun stuff theweekend of September 20th
through the 22nd, and 25% of theproceeds of that will go to MDA
.
So that's.
I got to go to the premiere ofit in LA a couple of weeks ago.
(21:07):
It's such an exciting projectand so I'm really glad to have a
minute to talk about it.
You know, and there's so little, in a lot of ways, hollywood
has really opened its doors totelling a lot of.
You know a much broader varietyof stories and people and all
(21:31):
of that, but I think thatdisability is still the most
underrepresented andmisunderstood minority in this
country and that's reflected onthe screen.
And so this film I thinkeverybody sees it as kind of a
pioneering project that willhopefully change the landscape
(21:55):
in Hollywood.
Speaker 2 (21:56):
So forgive me for that confusion.
I know you wrote a book and thetitle is similar, isn't it?
Speaker 3 (22:01):
I did write a book.
The book is called the TruthAbout Things that Suck.
Speaker 2 (22:05):
Okay, well, I got the bad things and the suck there.
Speaker 3 (22:08):
That's a great title, yeah no, you were very close
and the book is.
You know, you can probably tellby the title that I took.
I tried anyway to take a bit ofa humorous slant on, you know
the sucky things that happen inour lives and and you know there
are days when I don't mind mydisability, there are days when
(22:31):
I embrace my disability, butthere are certainly days that it
has sucked.
And each chapter in the book issomething that I feel like so
many of us go through Inaddition to disability.
There's a chapter onunemployment and there's a
chapter on unemployment andthere's a chapter on loneliness
(22:51):
and you know so many shame andso many different things in life
and these are all things thathave shown up in my life in one
way or another and it's reallysort of looking at them and the
lens and the perspective thatI've learned to look at them
through.
Speaker 2 (23:09):
Now you're headed to Washington DC next week for a
special thing that's happeningand I can relate a bit.
My daughter has type 1 diabetesand when she was younger she
and I went to Capitol Hill andspoke to Congress, Because a lot
of people don't understand thatthere is funding that comes
(23:30):
from the federal government forthings like muscular dystrophy,
type one diabetes.
But that doesn't just happen.
You have to write, you have tolobby for that, and I'm not
going to get political here.
I just want to say one thingthere's a lot of money that our
government spends things on andthere's a lot of money that I
feel like they probably shouldspend things on, things right.
(23:52):
So it takes people like yougoing and telling your story.
Tell us a little bit about whatMDA on the Hill is.
Speaker 3 (23:59):
Yeah, well, thank you for that again and thank you
for you and your daughterspending your time that way.
Mda on the Hill is we are.
I think we have about 75advocates I'm one of them who
are headed to Capitol Hill onTuesday and there are three
(24:20):
different bills that we're goingto be there to talk to
lawmakers about.
We're all sort of fanning outand talking to people from the
states that we hail from, soI'll be talking to senators and
representatives from the stateof Texas and really just telling
our own personal stories aboutwhy these bills matter and how
(24:45):
you know what kind of impactthey could have on this
community and, to your point,why the money should be spent to
put behind them.
And also, while I'm there, I'msuper excited to be getting to
go to the White House for theADA's 34th anniversary.
(25:05):
They're doing a reception and Ithink, if I play my cards right
, the president's going to bethere making some remarks.
So I'm very, very excited aboutthat and you know it's an honor
to be going and doing thesethings, but it's my second time
going to the Hill to speak tolawmakers and it is an
(25:29):
overwhelming feeling I'm sureyou felt it just to be there in
that building and to feel likeyou're part of the solution.
Speaker 2 (25:38):
It's a sense of empowerment, realizing that you
know, as Americans, that that'sour, those are our people.
They work for us.
Speaker 3 (25:45):
Right.
Speaker 2 (25:45):
And we have the absolute right to go visit them
in their offices and talk tothem about what it is that's
important to us and concerningto us.
Right, and we have the absoluteright to go visit them in their
offices and talk to them aboutwhat it is that's important to
us and concerning to us.
And anybody that may belistening that may have some
kind of a you know relation tosomeone with muscular dystrophy
or someone who just believes inthe cause.
You don't have to go to CapitolHill to lobby your congressman
(26:09):
or congresswoman.
You can send them an email andsay, hey, you need to support
these bills that supportmuscular dystrophy, right?
Speaker 3 (26:16):
Yeah, and I'm so glad that you said that, because our
voices matter so much more thanwe think that they do.
And, to your point, email them,call their offices and you know
in a lot of cases you may windup on the phone with someone on
their staff who has their ear.
You know you may not get tospeak to a senator, but they
(26:40):
listen to the people on theirstaff and you know.
The other thing that I'll sayis please vote.
We've got important electionscoming up in a couple months and
, regardless of what yourbeliefs are, it's important to
go and vote and make your wishesknown about what kind of
country you want to live in.
Speaker 2 (27:00):
Yeah, absolutely, you are doing a phenomenal job.
I also didn't mention you havea podcast.
What's the name of your podcast?
Speaker 3 (27:07):
Ah yes, quest Podcast is the podcast that I host for
MDA, so I would love for anyoneto listen and and subscribe and
leave a review there.
Speaker 2 (27:18):
So if anybody wants to participate in any of the
things that are happeningthroughout September for
Muscular Dystrophy AwarenessMonth, obviously visit the MDA
website.
There's ways that you candonate your time and money, I'm
sure.
What are some of the other wayspeople can participate?
Speaker 3 (27:36):
Honestly, I think one of the most fun ways that
people can participate is bygrabbing a couple of virtual
tickets to good, bad things.
Like I said, 25%.
The tickets are $19.95, I think, but you're going to get so
much more than the movie.
You're going to get interviewswith the cast that are live Q&As
(28:00):
, entertainment so much and it's.
You know.
There's not a much easier wayto raise money for, for a cause
or to show your support.
Speaker 2 (28:12):
Mindy, anything else we need to talk about before we
wrap things up.
Your story is really, reallyinspirational and it's amazing
how you know when you reach out,when we try to plan these
webinars, these podcasts, younever know what you're going to
get, and I've been so fortunateand so blessed to really get
(28:35):
people who like live what it isthat they preach, and you are
absolutely one of them, and Ifeel so fortunate to have the
opportunity to meet you and Ihope we can talk again.
Speaker 3 (28:46):
I hope so too.
It's been an absolute pleasureto meet you, and I am thankful
to you for having me on.
Speaker 2 (28:52):
Yeah, absolutely, mindy.
Thank you, we're going to putthe link to that website in
order to get tickets for themovie, and also to the MDA
website if folks want to makedonations or donate their time.
So it's Muscular DystrophyAwareness Month.
Be aware and do what you can.
Thanks, mindy.
Speaker 1 (29:09):
Thank you.
According to Mayo Clinic,muscular dystrophy treatment can
help prevent or reduce problemsin the joints and spine.
Certain medications can boostmuscle strength.
Special exercises may improve ajoint's range of motion and
flexibility.
Some people may need braces,canes, walkers or wheelchairs to
get around.
As lung muscles weaken, you mayneed a machine that helps push
(29:32):
oxygen into the lungs,especially while you sleep.
Speaker 2 (29:35):
I'm going to do this and I invite you to do it as
well Next time you see someonein a wheelchair.
Don't just see them.
Try to empathize with them.
What is their day-to-day like?
And try to transfer thatempathy to an injured worker you
communicate with or arecurrently responsible for.
Remember there's a human beingbehind the number on that
(29:56):
spreadsheet.
Thanks for listening to REAAudio.
Please make sure to follow uson Spotify or Apple Podcasts or
Stitcher or wherever you getyour podcasts.
We appreciate you.
Have a great rest of your week.
Perspective.
Perspective is spelledP-E-R-S-P-E-C-T-I-V-E.
Perspective the 30,000 footview.
Perspective put on someoneelse's shoes.
Perspective can also refer tothe state of existing in space
(00:20):
or one's view of the world.
Perspective R-E-A audioReemployability.
Speaker 2 (00:28):
Have you ever imagined what it would be like
to live in a wheelchair yourwhole life?
How would you feel to not beable to walk upstairs or even
out to the mailbox?
Imagine if you never had theability to walk or use your legs
and as you got older, themuscle weakness spread to your
arms, then eventually to yourlungs, making it difficult to
(00:49):
breathe.
Those are conditions that manypeople with muscular dystrophy
live with, some as babies andothers beginning as teens or
adults.
September is Muscular DystrophyAwareness Month, and I've had
the immense pleasure of speakingwith Mindy Henderson, Vice
President of Disability Outreachand Empowerment for the
Muscular Dystrophy Association.
Mindy not only does incrediblework for MDA, but is a personal
(01:13):
inspiration as well.
Speaker 1 (01:14):
According to Mayo Clinic, muscular dystrophy is a
condition that causes muscleweakness that gradually gets
worse.
It's caused by problems in thegenes that help protect muscle
fibers from damage.
Symptoms of the most commontype of muscular dystrophy begin
in childhood, mostly in boys.
Some types of musculardystrophy don't surface until
adulthood.
Treatments focus on managingsymptoms and slowing the course
(01:37):
of the disease.
Speaker 2 (01:38):
Muscular dystrophy.
Tell us a little bit about whatmuscular dystrophy is and how
it affects people.
Speaker 3 (01:45):
So muscular dystrophy , it's an interesting question
because you would think it's avery simple question.
But there is an actualcondition called muscular
dystrophy.
But muscular dystrophy is alsomore broadly used to talk about
the family of neuromuscularconditions and if you
(02:09):
extrapolate out all of thedifferent types and subtypes and
variations and things, thereare several hundred types of
neuromuscular disease andmuscular dystrophy is really
sort of that umbrella group thatholds them all together and
that people will refer to a lot.
(02:30):
And the Muscular DystrophyAssociation is actually the only
organization of its kind thatsupports the entire community of
neuromuscular conditions theentire community of
neuromuscular conditions.
Speaker 2 (02:50):
So, mindy, when we were talking yesterday, we got
through three quarters of ourconversation before you revealed
to me that you have a form ofmuscular dystrophy, right, and
you've had it since you were achild, is that right?
Speaker 3 (03:01):
That's true.
I have a form called spinalmuscular atrophy and there are
several types.
I have type two and I wasdiagnosed when I was only about
15 months old, and so you knowit's.
There are different ways tolook at disability.
I am a wheelchair user and havealways been.
(03:24):
I've never really stood orwalked, and so it's really what
I've always known, it's whatI've built my life around, and
so you know, in a lot of ways Ithink that that can be almost a
blessing.
I know so many people and thereare a lot of other
(03:45):
neuromuscular conditions thathave an adult onset and you know
I've, you know I've played thatout in my mind so many times
just that experience and howmuch harder it might be, not
that this doesn't have its hardmoments, but how much harder it
might be once you are.
(04:06):
You know, live a certainlifestyle for your entire life,
and then to lose that functionis quite devastating in a lot of
cases.
Speaker 2 (04:16):
So is there primarily ?
Does it begin with children?
You know, again, you mentionedthere's hundreds, right, so it's
really hard to nail downspecifics as to you know what
types of symptoms there are, butI imagine they're all related
in several ways if they're allkind of grouped together by MDA,
correct?
Speaker 3 (04:37):
Right that is true, and you know, it really does run
the gamut there.
Just within spinal muscularatrophy alone, I mentioned the
different types, and thedifferent types are really um,
one of the things that they'reindicative of is the age of
onset, and so type one is, youknow, oftentimes, at birth, um,
(05:00):
it can be um, observable, um, mytype is sort of um toddlerhood
I think I just made that word upand then there are also adult
onset forms of spinal muscularatrophy.
So you know, and that's justwithin that one disease class,
(05:26):
disease class.
So you know, there are a lot ofother conditions that are, you
know, run the gamut in terms ofmild and severe and age of onset
and just everything you couldpossibly imagine.
And one thing that's reallycool is that you know, I work
for the Muscular DystrophyAssociation and they have been
my family my whole life.
I was an ambassador for them,starting when I was about four
(05:48):
years old, and so I grew upalongside of them.
They were incredibly supportiveof my family and me as I grew
up, and one of the things that Ithink a lot of people don't
know about the MuscularDystrophy Association is that it
was the individuals working forthis organization and working
(06:13):
with the scientific communitythat defined the field of
medicine, of neuromuscularmedicine, that there was not
such a thing 75 years ago.
So I find that an interestinglittle factoid.
Speaker 2 (06:30):
Yeah, if it weren't for MDA, probably some of the
treatments that you've undergonewouldn't have been possible,
right, which is why they're sucha close family, right.
Speaker 3 (06:38):
Yes.
Speaker 2 (06:39):
Can you tell us a little bit about spinal muscular
atrophy?
Is there pain involved?
What happens?
How are you personally affected?
Speaker 3 (06:57):
Yeah, it's not.
In my particular case there,fortunately, is not a lot of
pain involved.
You know, I think any timeyou're sitting all day long,
every day, you know you developsome issues with your hips and
your joints and your spine andthings like that and that can
ebb and flow a little bit.
Some of those sort of ancillaryissues that creep up can be,
(07:22):
you know, cause a little bit ofdiscomfort or pain from time to
time.
But spinal muscular atrophy isa progressive condition so it
has gotten worse over the courseof my lifetime and you know,
really there's not a superreliable way to predict how much
(07:44):
it's going to progress.
It does vary a lot from personto person.
I could get into a little bitof the science of it, but I
think I would probably even boremyself.
But you know there are a lot ofthings under the hood, so to
speak, that affect the severityand how quickly it progresses or
doesn't progress and what sortof issues you're going to go on
(08:06):
to have.
In most cases with spinalmuscular atrophy, because of the
weakening of the trunk musclesand things, you develop
scoliosis.
That in a lot of cases has tobe corrected.
It did in my case and that wasa really tough surgery when I
was about 14 years old.
(08:27):
You know other hip and boneissues because of the lack of
weight bearing and things ofthat nature, and so really just
about every muscle in my body,um, is affected, and so I have
(08:48):
limited use of my arms.
Like I said, I don't stand orwalk, and yet I am a fiercely
independent person.
I always say that whoevercreated me had the best sense of
humor, because I was createdwith these limitations that make
me dependent on people.
But I am fiercely, fiercelyindependent and have a great
(09:11):
support system and have workedreally hard to create a life
where I can work and drive andhave a family and all of those
things.
Speaker 2 (09:20):
On REA Audio we talked to a lot of people that
have overcome tremendouscircumstances and you know
whether it's something that is adisease, a progressive disease
that they that was of no faultof their own, or if it was of an
accident, you know, whatever itis.
When we talk to these peoplethen I think the number one
(09:41):
thing that always stands out inmy mind is those people that
have overcome those tremendousodds always have a tremendously
positive attitude and obviouslyyou know it comes from you as
well.
I mean, you just emanate thatand I know that this is all
audio, but if folks could seeyour background, it's incredibly
(10:01):
uplifting and positive and justcomfortable.
And you talk about your supportsystem and I know that that's
always important in the processof somebody and I'm sure it
wasn't always like this for you.
You know ups and downs and Ican imagine going through life
as a child and into your teenyears has got to be tremendously
difficult.
But I'm curious, mindy, is itsomething that you think you
(10:26):
were just blessed with insidethat attitude?
It something that you think youwere just blessed with inside
that attitude, or is thatsomething that you realized that
you had to work on and is avery conscious effort that you
have to look at every day.
Speaker 3 (10:38):
You know, I think some of both and you know, first
of all, thank you for that.
You know I certainly have mydays where I don't feel as happy
and smiley.
I think that I really genuinelydid get lucky with the family
that I was born into, becauseyou know, they made the decision
(11:03):
.
You know my parents when I wasdiagnosed and I mentioned that I
was just a baby.
You know I was 15 months when Iwas diagnosed and they were
told at the time because so muchless was known about this
condition, that I probablywouldn't live to be three.
And the doctors told them, youknow, there were no treatments,
no therapies, no cures and,honest to goodness, they said
(11:27):
this to my parents to take mehome and let me be happy with
the time that I had and myparents, being who they are in
their infinite wisdom, decidedthat they were going to fight
for me and, despite what thedoctors said, they did physical
therapy with me and you knowthey didn't.
(11:47):
Let me ever make excuses forthings I didn't want to do just
because they were hard.
You know we lived in a and Iswear my parents were fantastic,
still are fantastic people, butyou know we lived in a
two-story house and my mom wouldhelp me, you know, kind of
(12:09):
crawl, shuffle myself up thestairs, and I'm sure that that
gutted her and was probably anincredibly difficult thing for
her to sort of make me do.
But I think it instilled amindset in me at a very young
age that nothing was going to bedifferent for me.
And you know, I may have to dothings differently, but the
(12:31):
outcomes could be the same.
And so I grew up just sort ofalmost taking for granted that I
could have and do anything thatI wanted in life.
I knew I was going to have towork for it and I certainly did.
But you know I really credit myparents with that kind of
outlook on things.
(12:52):
But you know, like I said, I'vehad times in my life where I've
had to make conscious decisionsabout who I wanted to be in
this world, and did I want to beangry and bitter or did I want
to be happy and make the best ofthings?
Speaker 2 (13:09):
Well, you've obviously made that second
choice, and in a very consciouseffort to do so More often than
not.
Speaker 3 (13:16):
Thank you.
Speaker 2 (13:17):
For sure.
So talk to us a little bitabout some of those treatments
that you had to undergo that arebecause of the Muscular
Dystrophy Association.
Speaker 3 (13:25):
Yeah, so I did grow up having to do all kinds of
physical and occupationaltherapy and let me tell you,
when I was a kid, I was a pillabout it.
I did not enjoy it and I feelso bad.
If any of my former physicaltherapists are listening, I
apologize, but I was yourtypical eight-year-old that
(13:46):
wanted to be outside playing andnot doing physical therapy.
But I was your typicaleight-year-old that wanted to be
outside playing and not doingphysical therapy.
But yeah, you know you spendall of this time sitting and so
you have to do things to keepyour body limber and to avoid
developing contractions and youknow all of those sorts of
things and maintain as muchstrength as possible, and so
(14:11):
that was one thing.
I had a number of surgeries.
I had some hip dislocationsbecause of the muscles' ability
to support the ball in thesocket and things like that my
spinal surgery, it and thingslike that my spinal surgery.
But to answer your morespecific question, there were no
(14:34):
treatments for this conditionuntil about eight years ago.
I want to say and I rememberthis like it was yesterday, I
will never forget it, becauseobviously you grow up hoping for
something, you know, somemiracle to come along and it was
December 23rd.
(14:55):
And you know, eight years ago,whatever, I guess, what was that
16.
?
Speaker 2 (15:01):
Yeah 2016.
Speaker 3 (15:11):
And yeah, and we had just had some friends over for
sort of a pre-holiday dinner andthey had left I got into bed
and pulled my laptop in with meand was going through email and
there was an email and thesubject line said first
treatment for SMA approved bythe FDA.
And this was before I wasworking for MBA.
I had heard through thegrapevine that there were some
promising things in the pipeline, but that was the first moment
(15:33):
that I knew that there wassomething and I just started to
cry and it was.
It was the miracle that I hadhoped for for so long, you know,
to go for, you know, 42 yearswith absolutely nothing that
anyone can do about this.
It was quite something.
And now there are actuallythree therapies on the market
(15:55):
now for SMA.
I've switched and I'm taking asecond therapy, but there's also
a gene therapy that's available, for I think it's children
under the age of two who arediagnosed and, you know, in a
lot of cases it can help prolongor even avoid a lot of the
(16:21):
symptoms of SMA for a very longtime.
Speaker 2 (16:25):
Wow, and that's all because of funding made by MDA.
Speaker 3 (16:41):
Yes, mda has been such a champion of.
You know, one of their, theirbig pillars is is science and
research and trying to get tothe bottom of these diseases,
and all of them are consideredrare diseases and so it's it's
an area that is so expensive todevelop therapies in, and you
know that funding is criticaland they are absolutely
brilliant and the network ofscientists and researchers that
(17:06):
they know and work closely withand the work that they're
funding is so exciting.
Speaker 2 (17:12):
So as the so you're the vice president of disability
outreach and empowerment.
You're also the editor in chiefof MDA Quest Media, which
includes a whole bunch of stuff,so you are super, super busy in
helping to get the word outabout muscular dystrophy and the
muscular dystrophy association.
So you have an integral part inmaking people aware of, you
(17:35):
know, muscular dystrophy as wellas their ability to be able to
help that.
So talk a little bit about thismonth.
September is traditionallymuscular dystrophy awareness
month.
How is MDA involved and whatare some of the things that
you're doing to bring attention?
Speaker 3 (17:50):
Thank you for that.
Yeah, mda, we have such a crazymonth planned and they really
hit it hard during the month ofSeptember for Muscular Dystrophy
Awareness Month, and they are,you know, it's really all hands
on deck to do fundraising, tocreate awareness, to do outreach
(18:17):
.
We've got programs running allthe time for people.
We just finished up with oursummer camp series, which is a
huge piece of the MBA ecosystem,so to speak.
It's where I went for eightyears every summer that taught
me about the possibilities formy life, and they're doing
(18:41):
education constantly.
We have a great education team.
I know I'm forgetting a thousanddifferent things, but we've got
campaigns running and things,and we have a lot happening with
Quest Media.
We've really sort oftransformed the Quest Media
(19:02):
platform into an adaptivelifestyle platform, and so my
hope is that we still cover alot of the science and research
of neuromuscular disease, but wealso have started branching out
into things like accessibletravel and adaptive fashion,
(19:23):
employment, education so manydifferent areas that span far
beyond the boundaries of theneuromuscular community.
I hope that there are a lot ofpeople listening who could also
potentially benefit from thecontent that we put out there.
So there's a lot happening andI would encourage anyone to go
(19:47):
check out the MDA website orMDAQuestorg.
Speaker 2 (19:51):
Now you wrote a book right called Good Bad Things.
Speaker 3 (19:55):
No.
Speaker 2 (19:57):
So actually you've done your research.
Speaker 3 (19:59):
Though Good Bad Things is.
I'm so glad you brought this up.
This is one of my favoritethings right now.
I feel like Oprah.
Right now I feel like Oprah.
Good Bad Things is a film thatwas co-written by a gentleman
with neuromuscular disease.
It was executive produced by agentleman named Steve Way, with
(20:22):
neuromuscular disease, starringDanny Kurtzman, who has
neuromuscular disease, and soit's really kind of the first of
its kind to be seen on the bigscreen and it's getting so much
traction you can go to Veepactually and watch.
There's going to be a virtualstreaming event with Q&As, and I
(20:46):
think I heard there's going tobe a stand-up comedy routine and
all kinds of fun stuff theweekend of September 20th
through the 22nd, and 25% of theproceeds of that will go to MDA
.
So that's.
I got to go to the premiere ofit in LA a couple of weeks ago.
(21:07):
It's such an exciting projectand so I'm really glad to have a
minute to talk about it.
You know, and there's so little, in a lot of ways, hollywood
has really opened its doors totelling a lot of.
You know a much broader varietyof stories and people and all
(21:31):
of that, but I think thatdisability is still the most
underrepresented andmisunderstood minority in this
country and that's reflected onthe screen.
And so this film I thinkeverybody sees it as kind of a
pioneering project that willhopefully change the landscape
(21:55):
in Hollywood.
Speaker 2 (21:56):
So forgive me for that confusion.
I know you wrote a book and thetitle is similar, isn't it?
Speaker 3 (22:01):
I did write a book.
The book is called the TruthAbout Things that Suck.
Speaker 2 (22:05):
Okay, well, I got the bad things and the suck there.
Speaker 3 (22:08):
That's a great title, yeah no, you were very close
and the book is.
You know, you can probably tellby the title that I took.
I tried anyway to take a bit ofa humorous slant on, you know
the sucky things that happen inour lives and and you know there
are days when I don't mind mydisability, there are days when
(22:31):
I embrace my disability, butthere are certainly days that it
has sucked.
And each chapter in the book issomething that I feel like so
many of us go through Inaddition to disability.
There's a chapter onunemployment and there's a
chapter on unemployment andthere's a chapter on loneliness
(22:51):
and you know so many shame andso many different things in life
and these are all things thathave shown up in my life in one
way or another and it's reallysort of looking at them and the
lens and the perspective thatI've learned to look at them
through.
Speaker 2 (23:09):
Now you're headed to Washington DC next week for a
special thing that's happeningand I can relate a bit.
My daughter has type 1 diabetesand when she was younger she
and I went to Capitol Hill andspoke to Congress, Because a lot
of people don't understand thatthere is funding that comes
(23:30):
from the federal government forthings like muscular dystrophy,
type one diabetes.
But that doesn't just happen.
You have to write, you have tolobby for that, and I'm not
going to get political here.
I just want to say one thingthere's a lot of money that our
government spends things on andthere's a lot of money that I
feel like they probably shouldspend things on, things right.
(23:52):
So it takes people like yougoing and telling your story.
Tell us a little bit about whatMDA on the Hill is.
Speaker 3 (23:59):
Yeah, well, thank you for that again and thank you
for you and your daughterspending your time that way.
Mda on the Hill is we are.
I think we have about 75advocates I'm one of them who
are headed to Capitol Hill onTuesday and there are three
(24:20):
different bills that we're goingto be there to talk to
lawmakers about.
We're all sort of fanning outand talking to people from the
states that we hail from, soI'll be talking to senators and
representatives from the stateof Texas and really just telling
our own personal stories aboutwhy these bills matter and how
(24:45):
you know what kind of impactthey could have on this
community and, to your point,why the money should be spent to
put behind them.
And also, while I'm there, I'msuper excited to be getting to
go to the White House for theADA's 34th anniversary.
(25:05):
They're doing a reception and Ithink, if I play my cards right
, the president's going to bethere making some remarks.
So I'm very, very excited aboutthat and you know it's an honor
to be going and doing thesethings, but it's my second time
going to the Hill to speak tolawmakers and it is an
(25:29):
overwhelming feeling I'm sureyou felt it just to be there in
that building and to feel likeyou're part of the solution.
Speaker 2 (25:38):
It's a sense of empowerment, realizing that you
know, as Americans, that that'sour, those are our people.
They work for us.
Speaker 3 (25:45):
Right.
Speaker 2 (25:45):
And we have the absolute right to go visit them
in their offices and talk tothem about what it is that's
important to us and concerningto us.
Right, and we have the absoluteright to go visit them in their
offices and talk to them aboutwhat it is that's important to
us and concerning to us.
And anybody that may belistening that may have some
kind of a you know relation tosomeone with muscular dystrophy
or someone who just believes inthe cause.
You don't have to go to CapitolHill to lobby your congressman
(26:09):
or congresswoman.
You can send them an email andsay, hey, you need to support
these bills that supportmuscular dystrophy, right?
Speaker 3 (26:16):
Yeah, and I'm so glad that you said that, because our
voices matter so much more thanwe think that they do.
And, to your point, email them,call their offices and you know
in a lot of cases you may windup on the phone with someone on
their staff who has their ear.
You know you may not get tospeak to a senator, but they
(26:40):
listen to the people on theirstaff and you know.
The other thing that I'll sayis please vote.
We've got important electionscoming up in a couple months and
, regardless of what yourbeliefs are, it's important to
go and vote and make your wishesknown about what kind of
country you want to live in.
Speaker 2 (27:00):
Yeah, absolutely, you are doing a phenomenal job.
I also didn't mention you havea podcast.
What's the name of your podcast?
Speaker 3 (27:07):
Ah yes, quest Podcast is the podcast that I host for
MDA, so I would love for anyoneto listen and and subscribe and
leave a review there.
Speaker 2 (27:18):
So if anybody wants to participate in any of the
things that are happeningthroughout September for
Muscular Dystrophy AwarenessMonth, obviously visit the MDA
website.
There's ways that you candonate your time and money, I'm
sure.
What are some of the other wayspeople can participate?
Speaker 3 (27:36):
Honestly, I think one of the most fun ways that
people can participate is bygrabbing a couple of virtual
tickets to good, bad things.
Like I said, 25%.
The tickets are $19.95, I think, but you're going to get so
much more than the movie.
You're going to get interviewswith the cast that are live Q&As
(28:00):
, entertainment so much and it's.
You know.
There's not a much easier wayto raise money for, for a cause
or to show your support.
Speaker 2 (28:12):
Mindy, anything else we need to talk about before we
wrap things up.
Your story is really, reallyinspirational and it's amazing
how you know when you reach out,when we try to plan these
webinars, these podcasts, younever know what you're going to
get, and I've been so fortunateand so blessed to really get
(28:35):
people who like live what it isthat they preach, and you are
absolutely one of them, and Ifeel so fortunate to have the
opportunity to meet you and Ihope we can talk again.
Speaker 3 (28:46):
I hope so too.
It's been an absolute pleasureto meet you, and I am thankful
to you for having me on.
Speaker 2 (28:52):
Yeah, absolutely, mindy.
Thank you, we're going to putthe link to that website in
order to get tickets for themovie, and also to the MDA
website if folks want to makedonations or donate their time.
So it's Muscular DystrophyAwareness Month.
Be aware and do what you can.
Thanks, mindy.
Speaker 1 (29:09):
Thank you.
According to Mayo Clinic,muscular dystrophy treatment can
help prevent or reduce problemsin the joints and spine.
Certain medications can boostmuscle strength.
Special exercises may improve ajoint's range of motion and
flexibility.
Some people may need braces,canes, walkers or wheelchairs to
get around.
As lung muscles weaken, you mayneed a machine that helps push
(29:32):
oxygen into the lungs,especially while you sleep.
Speaker 2 (29:35):
I'm going to do this and I invite you to do it as
well Next time you see someonein a wheelchair.
Don't just see them.
Try to empathize with them.
What is their day-to-day like?
And try to transfer thatempathy to an injured worker you
communicate with or arecurrently responsible for.
Remember there's a human beingbehind the number on that
(29:56):
spreadsheet.
Thanks for listening to REAAudio.
Please make sure to follow uson Spotify or Apple Podcasts or
Stitcher or wherever you getyour podcasts.
We appreciate you.
Have a great rest of your week.
Popular Podcasts
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Therapy Gecko
An unlicensed lizard psychologist travels the universe talking to strangers about absolutely nothing. TO CALL THE GECKO: follow me on https://www.twitch.tv/lyleforever to get a notification for when I am taking calls. I am usually live Mondays, Wednesdays, and Fridays but lately a lot of other times too. I am a gecko.