March 4, 2025 • 49 mins
What happens when you learn that your DNA carries the same mutation that led to a loved one’s battle with ALS? In this episode, I sit down with Mindy Uhrlaub, who discovered she is a carrier of the C9orf72 gene—the most common genetic cause of ALS and Frontotemporal Dementia. Mindy shares her emotional journey of genetic testing, the weight of living in the unknown and the unique challenges that come with being pre-symptomatic.
We dive into the mental and emotional impact of her hereditary disease, the stigma surrounding genetic conditions, and how humor, advocacy and community can help navigate these uncertainties. Mindy also talks about her work with End the Legacy, a patient led organization dedicated to the needs and interests of the Genetic ALS & FTD community.
This powerful conversation is a reminder that while genetics may shape our path, they don’t define who we are. Tune in for an honest, hopeful discussion about fear, resilience and finding purpose in the face of the unknown. Listen in and share with a friend. Hugs, Lorri
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Yeah, so you've had a busy day today.
Thanks for fitting me in.
Speaker 2 (00:05):
It has been crazy.
Today I just got off of a Zoomwith ALS TDI and they're asking
me if they can host a book tourevent for me.
So I'm very excited about that.
Speaker 1 (00:18):
Nice, nice, oh my gosh that's great, well, I want
to talk all about the book.
Oh my gosh, that's great.
I want to talk all about thebook.
I've been wanting to talk toyou for some time, so finally
I've got the opportunity.
Speaker 2 (00:32):
I know it seems like we've known each other for like
almost two years now and we justhaven't done this and I'm so
grateful to you.
So thank you for having me on.
Speaker 1 (00:43):
Finally, I'm getting to people I've just had on my
list and I've reached out to awhile ago and I'm just kind of
catching up.
So it's good to be busy.
Yeah, it's good to be busy.
It's good to have so manypeople that I meet that inspire
me, that I want to share them.
(01:04):
You know you're one of them andyou know it's good and it's bad
, it's like, because a lot ofpeople obviously are in our
community, in our space, and areaffected by ALS or FTD, and so
that's that part sucks.
But the good part is that somany people are brave and
(01:25):
committed to helping otherpeople and helping to educate
other people about the reality.
So, off the bat, I appreciateyou so so much.
I'm happy that you're here.
Oh, thank you.
You know, not everyone that'slistening is a part of the ALS
(01:46):
community, so why don't youexplain where you're at in the
ALS journey?
You know, because you're unique, you're special.
Speaker 2 (01:59):
Okay.
So ALS, as you know, is aneurologic disease.
It's neurodegenerative, andmost cases of ALS are sporadic,
(02:19):
meaning it could affect anybody.
But there is a percentage of uswho's a gene mutation that
sometimes carries other diseaseslike frontotemporal dementia or
other things on it.
So, for example, in my familymy grandfather died of ALS and
my mother died of ALS, and Ihave another family member
(02:41):
related on my mom's side who isanother genetic carrier.
I'm a carrier and the name ofour mutation is C9ORF72.
It is what's called a repeatexpansion and, without getting
too far into the woods, it'sbasically that it's a gene
mutation that just repeatsitself, and so we are looking
(03:02):
for a cure for our kind ofmutation.
But the catch is that there aremore than 40 genes implicated
in ALS and FTD, so there aresome people who believe that all
ALS has a genetic component toit.
So we are important to the ALScommunity because we're sort of
the low-hanging fruit because weknow what causes our ALS
(03:24):
community, because we're sort ofthe low-hanging fruit because
we know what causes our ALS, andso that's kind of where I am in
.
My journey is sort of its ownstory, but we can get to that.
Speaker 1 (03:33):
Yeah Well, tell me about when you found out that
you actually were a gene carrier.
Speaker 2 (03:39):
Okay.
So the best way to describe itis to give you the backstory,
which is that my mom startedshowing signs in 2016.
She had what's called drop footand she kept spraining her
ankle and she was like, wouldn'tit just be a total kick in the
pants if I had ALS?
And she sort of laughed it offand I was like, well, it's not
(04:01):
genetic, is it?
And she said no, it's notgenetic, it's, you know, it's
just one of those diseases thatyou know.
Mother nature couldn't be thatcruel that I would end up with
ALS.
Well, back then, the C9 or F72gene had just been discovered,
like three years before that.
So she didn't even know thatthere was a gene that caused ALS
and she started to developthese symptoms.
(04:23):
As you know, with ALS there's alot of misdiagnoses.
So first they thought she hadlupus, and then they thought she
had carpal tunnel syndrome andthey thought she had.
You know, when her voicestarted to change, they thought
she had a thyroglossal duct cystand they recommended surgery.
And so she went through allthis treatment for two years,
(04:45):
obviously progressing in herdisease, and nobody wanted to
diagnose her with ALS becausethey considered it to be a rare
disease, which actually itreally isn't, but that's a whole
nother story, yeah, so finally,around 2018, I could see the
writing on the wall.
I could see that she had sheclearly had ALS.
I had done enough researchabout it and I was like I'm
(05:06):
going to get a genetic test.
And she's like, well, I'll geta genetic test.
You know before you, and I knewthat she wasn't one to delve
into her medical stuff so much,but you know, she had kind of a
shaky ALS diagnosis and I waslike, forget it, I'm going to go
do this.
So we ended up getting our testresults on the same day
actually, and we both found outthat we were carriers of the C9
(05:28):
or F72 gene mutation that causesALS and FTD.
And so when I found that out, ithappened against the backdrop
of a very dynamic situation atmy house.
I'm married, I have twochildren and my husband was
going through chemotherapy forstage four lymphoma, and so he
(05:50):
was in a life-threateningsituation.
My mom had ALS.
She was sort of in her middlestages of ALS around 2018.
You know, she was in alife-threatening situation and
then my son had to be sent to aresidential treatment facility,
which meant that he was removedfrom the home and went to a
residential treatment facility,which meant that he was removed
from the home and went to atherapeutic boarding school, for
reasons we don't have to gointo, but many of them
(06:12):
developmental, many of themneurodiverse and many of them
behavioral.
And so, with three first orderrelatives in life-threatening
situations, I found out that Icarried the gene for a fatal
neurodegenerative disease, andat the time it didn't really
affect me that much because Iwas in the trenches with my kid
(06:34):
and with my husband and my mom.
I was flying back and forth toFlorida to be with my mom and I
was my husband's primarycaregiver and my son's primary
caregiver, and so I couldn'treally care for myself very well
, but I knew enough to enroll inas much longitudinal research
as I could, because I knew thatsometime when things calmed down
(06:57):
in my life, that I would becalled on to do research, and so
that's what I did, and Istarted writing this memoir
about what it was like being inthis situation where everyone
around me was about to die andhow that affected me.
And so that's where I wasbetween like 2018 and 2020.
You know, those years were very, very hard, and my mom passed
(07:20):
away on January 10th 2020, afterlike a five-year battle with
ALS, and it was devastating, asI'm sure you can imagine, but it
made me redouble my efforts tofind a cure, because it wasn't I
mean, I knew that my kids wereat risk, but it really hit me
(07:42):
hard because I was like, well, Ithink age of onset for a C9 ALS
is something like 55, you know,and I was like 50 at the time,
you know, or 51 when she died.
So I joined a bunch of groups atIAM ALS and they had a familial
group and it was run by acouple of, you know, heavy
(08:04):
hitting activists here in theBay area and, um, over the years
, it became really clear that weneeded a space for ourselves,
because IAM ALS is wonderful,but they didn't put a lot of
focus on the familial group andwe wanted something more that
would also speak to FTD, and sowe started our own organization
(08:26):
called End the Legacy, and I'mone of the founding members of
that.
It started maybe two and a halfor three years ago, and so
during the last few years, Ijust have been throwing
everything that I have at thisdisease and, incidentally, I
should tell you, my husband isfine, by the way he?
(08:47):
He's fine.
He actually built himself acabin up in the mountains so he
could enjoy himself fishing,which is, you know, wonderful
and life affirming.
My son, ethan, is actuallydoing really well.
He has a job, he's livingindependently and you know he's
doing very well, and my youngerson, Alex, who, should, you know
(09:07):
, not be ignored, he and I weresort of the two-legged stool
through all of this and you knowhe's doing amazing things.
He's in music school right now.
So, yeah, so life is likereally large right now, but it
wasn't large for a long time asI'm sure you can imagine.
Speaker 1 (09:26):
Yeah, and.
I wanted.
I want to talk about how youwere able to think about
yourself during those years whenyou and your mother found out
that you were ALS gene carriers.
Your mother was sick, you hadeverything going on within your
family I mean like for yourselfindividually at that time, where
(09:49):
you just forced to focus onother people and not yourself.
And then after time it was like, okay, now I can kind of focus
on me and my future and how I amprocessing my own future.
Speaker 2 (10:10):
Yeah, it's a good question.
I mean, actually, you know,being a mother, you probably
know, you know everything thatyou do, you're always worried
about how it's going to impactyour children.
So my children were always atthe front of my mind, as was my
husband, as was my mom.
My children were always at thefront of my mind, as was my
husband, as was my mom.
And you know, I've always beena caregiver in most situations,
even among my friends, and Iplayed in a band and I was
(10:33):
always kind of taking the motherrole.
So really I always put otherpeople first.
And the only time when I everworried about my own genetic
status during those years when Iwas in the trenches with my kid
and my husband and my mom, waswhen I would look at my husband
and he was doing really badlyand you know he was like at his
(10:55):
nadir period during his cancertreatment and I thought, oh my
God, what if he dies?
Yes, and what if I developsymptoms?
What is going to happen with mychildren?
And you know they were youngthen, they were like 12 and 14.
So it wasn't like, oh, they'llmake it through, they can just
(11:15):
fend for themselves.
I mean, you know I was lookingat an ALS diagnosis and my
husband was very sick and my momwas dying.
So who was going to take careof my kids if we all died?
So that's really the only timeI ever worried about myself.
In fact, I very rarely worryabout myself still.
Speaker 1 (11:36):
Yeah, well, I get it.
My guys were 11 and 13 when Iwas diagnosed, so you know,
really close in age with yours.
And for the first few months,while we were going from doctor
to doctor and not knowing whatwe were dealing with, they
didn't know anything.
And as soon as I got thediagnosis, it was like a light
(12:01):
turned on.
Everything changed from me tothem.
How are they going to react?
What are they going to react?
What are they going to say?
Are they going to act out?
You know what does this mean tothem.
On and on and on, and it justis.
I think, as a mother, as aparent, instinctively, that the
focus just shifts and you're notworrying about the diagnosis
(12:26):
part as much as you are thefallout, you know, in the
aftermath.
Speaker 2 (12:32):
So right, yeah and I think we just we're like that
moms are, we're socialized to belike that and I think we're
innately like that also yeah,for those that don't know what,
getting tested positive for thegene, can you explain like does
that mean you're going to get itfor sure?
Speaker 1 (12:55):
What's the percentage and talk a little bit about
what does it mean exactly?
Speaker 2 (13:01):
It's a developing science, actually science.
Actually.
You know, different genes havedifferent penetrance, meaning
that, like, you could have thegene and not develop symptoms,
or you could have the gene anddevelop symptoms.
What's interesting about thingslike, say, SOD1, which is a
different gene that theydiscovered way before they
(13:22):
discovered my gene, is that someof the forms are highly
penetrant and it's somethinglike 90% chance that you're
going to develop the disease.
So it's pretty gnarly right.
But with C9, there's newresearch.
I thought I had a 95% chance ofdeveloping ALS by the time I
was 58 or 59, but new researchis now showing that, depending
(13:45):
on your family history and thepenetrance with your family,
that actually has a lot to dowith how, what your chances are
of getting it.
And like, say that you have thegeneration above you and there
are four siblings and all fourhave ALS or FTD, then your
chances of getting it areprobably pretty high, Right, but
if there's only one or two,then I mean, I think it actually
(14:07):
does play into.
You know, they used to say yourfamily's ALS is not your ALS,
but actually it is in the caseof C9.
And so we're going to find out.
I do have, like I said otherfamily members who are gene
carriers, and one is symptomaticand so, but to be fair, she's
75.
So that is, it's a.
(14:29):
You know, age of onset has todo with it.
Also, my mom's age of onset wasabout 70.
And so that bodes pretty wellfor me, I guess.
Or not well, but better or lesshorrible, I don't know how you
even say it.
Right, right, right horrible.
Speaker 1 (14:49):
I don't know how you even say it.
Right, right, right.
So you know we were talkingabout our children and how the
diagnosis and the worry and youknow stress, the focus shifts
from ourselves to our children.
I remember reading you know,one of the things that you did
with the information that youreceived about being a gene
carrier is that you waited, thatyou held on to that because you
(15:13):
obviously were afraid of how itwas going to affect the
children.
So tell me a little bit aboutthat time period of having to
carry that burden of having andcarrying that burden.
Speaker 2 (15:31):
So you know I mentioned that my husband had
cancer at the time and both kidshad their own mental health
issues around that because, youknow, he went through chemo, he
got really sick, he lost hishair and little kids see that
right and so they start to worrythat their dad's going to die
and they were watching theirnanny, my mom, die of ALS.
And you know, both kids arevery sensitive One's
(15:53):
neurodiverse and I just didn'tknow how they were going to
handle it.
And we talked to a childpsychiatrist and basically his
deal was like don't tell themanything until your disease
becomes something where medicalintervention is a thing.
And I said, well, what wouldthat mean?
Because they don't havemedicine for somebody like me,
(16:15):
you know, like someone who's agene carrier just falls through
the cracks.
And he said if you ever have totravel or be away for more than
a day for your genetic mutation, that's when you tell your kids
.
You know, fortunately orunfortunately, my mom passed
away in 2020, in the height ofthe pandemic, and nobody was
(16:37):
really recruiting for any sortof testing.
It was like I couldn't get onan airplane and go anywhere
until I had a vaccine and thenit was, you know, safe to fly
and all the stuff.
Because the last thing I wantedto do was bring like COVID home
to my husband who was justrecovering from cancer, right.
And so when I was accepted intolongitudinal research at Mass
(17:01):
General that's the dials program, dominant inherited ALS program
I knew I had to fly out toBoston.
And only then did I tell themand I told them not the full
truth but most of the truth.
I said you know, there arepeople in families where there's
ALS and they want to researchthose families, they want to
(17:22):
enroll us in research to helpunderstand the way that ALS
works in our family.
And the kids were kind of likeoh, okay, and at that point they
were like maybe 17 and 15,right, so they were a little bit
older, they weren't, they werekind of post-pubescent, you know
, like not very moody and stillsensitive.
(17:43):
But they were like in a betterspace to receive the news.
And I said I'm going toMassachusetts to go and donate
blood and some tissue samplesand I'm going to do some tests
just to make sure you know thatlike I'm okay.
And I said you guys understandthat like in our family, you
know, als does run in the familyand you know, nani had it, my
(18:07):
grandfather had it, and sothere's a chance that I'm a
carrier of this gene.
And they said, well, are yougoing to die?
And I said, well, you knoweverybody dies, but no, I'm not
going to die of ALS and I'm likeALS and I'm like.
(18:32):
I still maintain that I'm notgoing to die of ALS.
Of course, that's a greatquestion for later and we can
talk about that too.
But you know, I said I'm goingto fly to Boston, I'm going to
do all this stuff and research,and you know we're going to try
and find a cure for this diseasethat killed your Nani.
And they had both learned aboutgenetics because they had been
in middle school and part ofhigh school.
And you know, ethan, my olderson, was like so there's a gene
(18:54):
in the family that causes ALS.
And I said yeah, and he saidand you're a carrier?
I said, well, you know,reluctantly, said yes, I am a
carrier, but it does not meanI'm going to develop the disease
and it doesn't mean anythingLike it doesn't mean that.
And so and that's the truth,and he and he said, well, I mean
, could you get it?
And I said yeah, I could.
And then the younger one, alex,said well, if it's genetic,
(19:21):
like could we get it?
Speaker 1 (19:23):
And.
Speaker 2 (19:23):
I said well, not yet, because you're kids and ALS
only affects adults like 40 andup.
So you know there's lots ofreasons why you won't get it and
I'll tell you what they are.
And I went on to enumerate thatjust because I have the gene
doesn't mean I'm going to getthe disease.
No-transcript get it.
(20:08):
And by participating inresearch I'm going to make sure
that you guys aren't going toget it.
And they both were kind ofquiet for a second.
And then my younger son got upand he put his arms around me
this was at the dinner table,you know.
He put his arms around me andhe said thank you so much for
keeping us safe.
So it was like really clearthat they both got it.
Speaker 1 (20:31):
You know they both got it so yeah, wow, that's
tough, that's tough.
They're like we trust you, weknow you love us, we know you
will protect us, but yet what isit saying?
What are the odds?
Is there a chance?
Oh, that's a lot it's a lot.
Speaker 2 (20:53):
Well, it's kind of interesting because, like my
younger son has actuallyparticipated in the same
research I have.
Like he, they took childrenthrough some of the ftd research
and so he enrolled in researchand he's concerned about me,
that he wants to see a cure forme and I want to see a cure for
him, and so you know he gets it,and I think that activism comes
(21:18):
in a lot of different forms,right.
Speaker 1 (21:19):
Yeah, yeah.
So what is all of this toughconversation, Jen?
Speaker 2 (21:24):
for your relationship with your sons this tough
conversation, Jen, for yourrelationship with your sons.
I think it's made it a muchmore precious relationship Like
we're.
We're closer as a result.
I think that sometimes they getstressed out about it and I'm
there to talk them through thatand sometimes all of my activism
actually stresses them out alittle bit because I'm always
(21:44):
talking about it and I'm sort oflike stresses them out a little
bit because I'm always talkingabout it and I'm sort of like,
um, I'm kind of a honey badgerabout it.
Speaker 1 (21:53):
So, yeah, uh-huh, yeah, that's exactly what I was
thinking too.
Yeah, I mean same.
I was telling someone earliertoday, you know, thursday, I
mean 21 years since I've had ALS.
My guys have been with me withALS, you know, more than without
.
Most of their life has beenwith me having ALS, so it's kind
(22:15):
of in their life.
Although I am very lucky in thefact that I'm a slow progressor
for kids, they have still hadthat on their mind every day,
you know.
So I get it.
You know we're talking a littlebit about relationships and
(22:35):
what the knowledge of having ALSor being a gene carrier can do,
and I've read some of thethings that you have said about
your observations with your ownrelationships and I really,
really appreciate that becauseI've seen a lot over 21 years.
(22:58):
Can you share some exampleswhere people have reacted in a
way that you didn't expect?
Speaker 2 (23:10):
Yeah, I mean, you know like my brother and I are
very close and when I told him Iwas a carrier, his response was
well, how can I help you?
You know, and I think that youcan, you can respond to that
information a lot of differentways.
Like he could have gone andlike hidden under the bed or
something if he wanted to.
(23:31):
but yeah that was amazing and Iwasn't surprised because he's
that kind of guy.
Um, you know, my husband is acowboy, uh, actually born and
raised on the Western slope ofColorado, and he was just like,
well, no reason to worry untilthe doctor tells you to worry,
you know, so sort of like.
He was just very much like.
(23:52):
He's just like, yeah, it'snothing, it's no big deal, and
um, and of course you know hewas going through cancer at the
time.
So, yeah, he had other fish tofry but um, but, but you know, I
had a friend who, um, I raninto, like maybe the day after I
(24:12):
had the genetic test resultsback, and this was a friend who
knew that my husband was sickand who knew that my mom was
sick and who knew that my childwas sick.
And I ran into him, like at thegrocery store or something, and
he's like, hey, how's it going?
I'm like, well, um, you know, Ijust found out that I'm a
(24:33):
carrier of ALS and, um, so, yeah, there's that.
And he said, well, what thehell am I supposed to do with
that information?
And I was just like I just said, well, um, I guess nothing.
Really.
Do you know where the yogurt is?
You know, like?
it was like it was just likethis horrible conversation that
(24:56):
wasn't even really conversation.
And yeah, I mean, I've haddefinitely people say, like you
know, I'm so, so sorry that youhave to live with that.
Like, sometimes I get a littlebit mad about that, like I get I
get sort of defensive, likeactually having my knowing my
(25:17):
genetic status has been like thebest thing to ever happen to me
and I I would rather be askedhow do you feel about that, or
what are you going to do aboutthat, rather than what am I, the
receiver of the news, going todo about that?
Speaker 1 (25:32):
You know, yeah, right , right, right.
Well, I mean I know that yousaid that some people have
fallen away, you know, and theydon't know what to say.
I mean you would see that whensomeone has ALS and they're in
the trenches of ALS or even inthe beginning stages, that
(25:53):
people just stop coming around.
They don't know what to say,they don't know what to do,
they're afraid to say the wrongthing, so they do nothing at all
.
So it's kind of like maybe evena little more dicey when you
are a gene carrier and you havethis burden that perhaps you can
(26:19):
get it.
You don't know.
It's like, oh, now we reallydon't know what to say.
You know that makes it hard forpeople.
You know that makes it hard forpeople.
So I guess, what does supportreally look like for someone
that's a gene carrier, thatdoesn't have symptoms, that
doesn't know for sure what theirfuture is going to hold?
What do you say?
Speaker 2 (26:41):
Well, okay, there's one thing that I failed to
mention, which is just because Idon't have symptoms.
If I pass it on to my children,they could have symptoms.
So even an asymptomatic genecarrier can pass on symptomatic
ALS genes to their offspring.
So this is never going to be adone deal for us until there's a
(27:03):
cure.
And so what does support looklike?
You know, for me I would ratherhave people ask questions than
tell me how they feel, you know,but at the same time I like for
it to be a dialogue.
Support for me right now lookslike if I'm donating to a cause
(27:24):
or I'm doing a fundraiser.
You know, obviously it's easyto write a check, even if it's a
tiny check.
So throwing money at ALSResearch actually really does
help.
You know we started anorganization called End the
Legacy and you know to be toshow up to one of those meetings
or be put on the mailing list,like that's a really important
(27:44):
thing for me, because my familydoesn't really even know what
I'm going through.
So you know for them to um toshow up on a peer support
meeting or whatever it's it'sreally cool, like, um other ways
to support somebody like me.
Obviously you could buy my book, which would be really cool, um
(28:15):
, but you know, I feel verysupported by my friends.
Like, like I, I play Mahjongand like my Mahjong group
friends always ask, like how'sit going, how's the good fight
going?
You know, and I'm going to beum honored at an event at in
Chicago in april and I've gotfriends who are flying out there
with me and like that's reallyabove and beyond uh the call of
duty.
(28:36):
So yeah, I mean that that kindof thing yeah, just a
recognition and congratulationson that honor.
Speaker 1 (28:43):
Uh, well, well deserved.
But yeah just taking interest, Ithink, showing support in any
way, but showing active interest.
Like you said, ask me thequestions, show that you're
you're interested, like you'rereally sincerely interested in
(29:06):
how you are dealing with notonly your own uncertainty but a
whole other level.
Like you said, when the kidsare involved, how will this
affect them in the future?
Will it affect them?
Will they have ALS?
Will they have the gene?
Will it develop into ALS?
That's just a whole other leveland I always say that you know
(29:33):
you don't know what you don'tknow.
Okay, so I don't expect anyoneto understand what I'm going
through, what's in my mind,because you're literally not in
my head.
But to your point, it sure isnice when someone tries to
(29:54):
understand what's going on in myhead or my heart, you know,
especially during hard times.
So I think that's kind of likeno matter what, just a basic
rule of a relationship, anyrelationship.
Speaker 2 (30:12):
Well, yeah, and what's kind of interesting is
that people with ALS and peoplewho carry genetic mutations for
ALS and FTD, we have livesoutside of ALS, but we don't
really ever get a break from thedisease.
Um, we don't really ever get abreak from the disease, you know
, and if, when you carry a gene,you don't get a break because
your mom or dad didn't get abreak, because your grandparent
(30:35):
didn't get a break, because yourkids won't get a break, because
you know, and so we, as youprobably know, people like you,
people like me, we don't everget a vacation from it.
You know, this is like ourlives for the rest of our lives,
and I think that it's just likewhen you ask somebody how's
your work, like, this is my work, this is what I do full time
(30:57):
right now.
Yeah, like ALS advocacy is whatI do, and it doesn't mean I
draw a big paycheck from it, butit pays dividends way better
than any paycheck ever could.
So I'd like to be asked aboutit oh, that's perfect.
Speaker 1 (31:14):
I love that, love, love, love that.
Um, you mentioned your book andI am super excited that you
have taken the time and theenergy to write a book, and I
know it's coming out this yearand it's called Last Nerve, last
(31:34):
Nerve.
Speaker 2 (31:35):
When is it coming out .
It's coming out on May 27th,just in time for Lou Gehrig Day,
and I will be going on tour atthe beginning of June and will
probably be on book tourthroughout the summer.
Speaker 1 (31:50):
Awesome.
Okay, where can we go to followyour tour?
Speaker 2 (31:56):
The best place to follow me right now is on
Instagram.
I'm at Mindy Writes W-R-I-T-E-Sone number one, and so all of
my ALS stuff is on there.
Yeah, so the book will be onAmazon and your local bookseller
can also order it.
Speaker 1 (32:17):
Okay, perfect, and I'll put a link in the show
notes with your Instagram handle.
Speaker 2 (32:25):
Thank you.
Speaker 1 (32:26):
The show notes are available on Facebook and the
website, both at.
I'm dying to tell you podcast,so tell me about the book.
How did you get inspired to say, okay, this is what I want to
do, okay, so?
Speaker 2 (32:44):
I've always been a writer.
I played in a band for a longtime and wrote music, I wrote a
screenplay, I've written essaysand I had a novel come out five
years ago called UnnaturalResources so I've always been a
writer.
You know, I started keeping ajournal and then I was like wait
a minute, this journal isactually kind of interesting, so
(33:06):
I started rewriting it as abook back in 2018 about what
it's like to receive a diagnosis.
You know that you're anasymptomatic person with ALS,
basically, and the stories areorganized somewhat
chronologically about, you know,like what it's like to be the
(33:27):
caregiver of someone with cancer, what it's like to be the
caregiver of somebody who'shaving behavioral issues, what,
what's it like being thedaughter of somebody with ALS
and like all these things goingforward, and it basically it
just tracks those years between2018 and 2023, where I was just
(33:48):
sort of becoming who I am now,like I I was an ALS warrior and
now I'm an ALS warrior andthat's kind of like that's a big
difference for me, because fora really long time I was worried
about everybody in my life andit never occurred to me to worry
about myself or to care formyself, and so I think that this
(34:16):
is.
It's a story that speaks to alot of people in the sort of
sandwich generation, wherethey're taking care of parents
who are passing away andbringing up children.
And you know, I think that itspeaks to a lot of people,
because a lot of people who arein their 50sies or forties are
in the same situation.
Um, it might not be as dramaticas mine was, but, um, you know,
(34:37):
there there is a certain amountof grace and love of yourself
that is required to not worryabout the next 10 years, you
know, to sort of like surrenderto the fact that the truth is
the truth and science is scienceand it's not ready for us.
So that kind of activism, ithas to come from somewhere and
(35:03):
it comes from the patientpopulation.
And so, you know, it took me awhile to realize that I'm a
patient.
You know, I have been inconversation with the FDA and
the NIH and they didn't evenconsider pre-symptomatic gene
carriers to be patients, whichis ridiculous, because we go
through the same testing as allthe patients do and we go
(35:27):
through the same stresses, butwe don't have the physical
manifestations of the diseaseyet.
And so, yeah, it's been a realjourney for me, this learning
experience of you know what doeslife mean and what does a good
life mean, and you know how do Ilive with ALS and FTD,
(35:48):
potentially in my future, and itends up really being a story of
resilience and about hope, andit's not at all like the trauma
memoir that you would think itwould be yeah, yeah, I wouldn't
imagine anyone illustratingpeople no matter what they're
going through.
Speaker 1 (36:08):
I mean, simply, how to focus on what you can control
and to get the most out of thesituation that you are in at
that moment.
Is that right?
Speaker 2 (36:24):
it's that, but it's also like to really love
yourself.
You have to love theimperfections of yourself too.
So, like for you, lori, to bean activist like you're a better
activist as somebody with ALSthan you would be if you did not
have ALS and that part of yourworld and your body and your
(36:46):
soul you have to love that inorder to put yourself out there.
All the time on this podcastit's the same way for me, like I
love myself, but I also lovethe als ftd part of myself,
because I know that that's whatmakes me human, because we all
have an expiration date.
We're like a dozen eggs, right?
(37:08):
Everyone?
Speaker 1 (37:08):
has an expiration date yeah it's just that and
everyone has something you know,whether it's als or ftd, I mean
, everyone has something thatyou think is less than and
shouldn't hold you back.
Yeah, otherwise we would all be.
We would all be in the samestalling position.
(37:31):
Um right, yeah, oh, how are youdoing right now?
How are you balancing livingevery day in the present while
you have so much uncertainty inthe future?
Speaker 2 (37:46):
well, I think that's the idea is like, because the
future is uncertain, you have tobe in the present, you know,
and like.
For me it means just doingthings all the way, like don't
have to do things.
You know, if I have theopportunity to speak at an event
, I'm going to do it because Ican, you know, and if somebody
(38:10):
offers me the opportunity towrite a piece a snarky piece
about agents or whatever, likeI'm, I'm a better writer because
I can throw myself a hundredpercent into writing, because
(38:53):
every time I snuggle my pets,I'm there with them like 100%,
and people get my attention in away that they didn't used to
get.
I mean, I'm a better friend asa result of this, I'm a better
lover as a result of this, I'm abetter parent as a result of
this and I'm a better child as aresult of this.
And so I think that it is.
It isn't just making do withwhat I have, it's being a better
person for having thissituation, and I feel like it's
a gift.
I really do, and being able tocome to that realization this
early in the game makes it thatmuch sweeter for me.
Speaker 1 (39:11):
Yeah, that's true.
That's true.
Yeah, You've mentioned in thelegacy.
So how can listeners supportthat organization?
You know who's invited tolisten in and be a part of that?
Speaker 2 (39:32):
Well, generally speaking, we are sort of geared
toward people with genetic formsof ALS and FTD, that said, also
caregivers of people withgenetic forms of ALS and FTD,
friends of genetic forms of ALSand FTD, friends of fill in the
(39:55):
blank.
You know, I think that I can'treally count the number of times
that my dad has shown up onthis on these calls.
And so, like he comes to visitfrom Chicago I'm from Chicago
Originally he comes toCalifornia to visit and I'll
have like an end the legacymeeting and he'll just sit here
next to me and just listen in.
And you know, he doesn't havegenetic FTD in his family or
genetic ALS in his family at all, because my mom was the carrier
(40:18):
Right, but so, yeah, we have.
And then we have doctors andresearchers on our calls all the
time and we have motivationalspeakers and we do webinars, and
so it's.
If you're interested, it'swwwendthelegacyorg.
It's pretty easy to find us.
Speaker 1 (40:39):
Yeah, and I'm on the website right now, so and it
looks like you can click onabout and get the backstory and
find the leadership team, andthen there's a tab to click on
to get newsletters, and I assumeI'm not finding it right away,
(41:00):
but assume somewhere to sign upto get the newsletter.
Speaker 2 (41:04):
Yes, you can do that too on the website.
You can also make a donation.
Speaker 1 (41:40):
Yes, you can do that too on the website.
You can also make a donation.
So you know you can clickaround and have at it, and you
know it's very exciting.
We're about to have our secondsummit, so we're kind of brand
new, but it, oh my gosh.
Yeah, you have a lot on here,and if you scroll to the bottom
of any page, click on whateversocial media outlet that you
follow to get connected with youthere as well.
So, okay, great, thank you forthat.
So, mindy, this has been great.
Before I let you go, I justwant to ask you what are you
(42:05):
dying to tell us?
Speaker 2 (42:06):
What are you dying to tell us?
I am dying to tell you thatwhen the chips are down and it
looks like there's no hope atall, that is the time to love
the world harder.
Speaker 1 (42:20):
Yeah, thank you so much for being here, and thank
you.
Speaker 2 (42:26):
Thank you so much for having me.
Speaker 1 (42:28):
Yeah, okay, and thank you.
Thank you so much for having me.
Yeah, okay, and then let's stayconnected.
Um, you know, on your book,when it comes out on your book
tour, I'm super excited to readit and, you know, best of luck
to you always and thanks forputting your heart and soul into
this community and helpingother people who are in your
(42:48):
exact situation or, you know,just dealing with ALS already or
anything else.
So really appreciate you.
Speaker 2 (42:57):
Thank you so much for having me, Lori.
Yeah, so you've had a busy day today.
Thanks for fitting me in.
Speaker 2 (00:05):
It has been crazy.
Today I just got off of a Zoomwith ALS TDI and they're asking
me if they can host a book tourevent for me.
So I'm very excited about that.
Speaker 1 (00:18):
Nice, nice, oh my gosh that's great, well, I want
to talk all about the book.
Oh my gosh, that's great.
I want to talk all about thebook.
I've been wanting to talk toyou for some time, so finally
I've got the opportunity.
Speaker 2 (00:32):
I know it seems like we've known each other for like
almost two years now and we justhaven't done this and I'm so
grateful to you.
So thank you for having me on.
Speaker 1 (00:43):
Finally, I'm getting to people I've just had on my
list and I've reached out to awhile ago and I'm just kind of
catching up.
So it's good to be busy.
Yeah, it's good to be busy.
It's good to have so manypeople that I meet that inspire
me, that I want to share them.
(01:04):
You know you're one of them andyou know it's good and it's bad
, it's like, because a lot ofpeople obviously are in our
community, in our space, and areaffected by ALS or FTD, and so
that's that part sucks.
But the good part is that somany people are brave and
(01:25):
committed to helping otherpeople and helping to educate
other people about the reality.
So, off the bat, I appreciateyou so so much.
I'm happy that you're here.
Oh, thank you.
You know, not everyone that'slistening is a part of the ALS
(01:46):
community, so why don't youexplain where you're at in the
ALS journey?
You know, because you're unique, you're special.
Speaker 2 (01:59):
Okay.
So ALS, as you know, is aneurologic disease.
It's neurodegenerative, andmost cases of ALS are sporadic,
(02:19):
meaning it could affect anybody.
But there is a percentage of uswho's a gene mutation that
sometimes carries other diseaseslike frontotemporal dementia or
other things on it.
So, for example, in my familymy grandfather died of ALS and
my mother died of ALS, and Ihave another family member
(02:41):
related on my mom's side who isanother genetic carrier.
I'm a carrier and the name ofour mutation is C9ORF72.
It is what's called a repeatexpansion and, without getting
too far into the woods, it'sbasically that it's a gene
mutation that just repeatsitself, and so we are looking
(03:02):
for a cure for our kind ofmutation.
But the catch is that there aremore than 40 genes implicated
in ALS and FTD, so there aresome people who believe that all
ALS has a genetic component toit.
So we are important to the ALScommunity because we're sort of
the low-hanging fruit because weknow what causes our ALS
(03:24):
community, because we're sort ofthe low-hanging fruit because
we know what causes our ALS, andso that's kind of where I am in
.
My journey is sort of its ownstory, but we can get to that.
Speaker 1 (03:33):
Yeah Well, tell me about when you found out that
you actually were a gene carrier.
Speaker 2 (03:39):
Okay.
So the best way to describe itis to give you the backstory,
which is that my mom startedshowing signs in 2016.
She had what's called drop footand she kept spraining her
ankle and she was like, wouldn'tit just be a total kick in the
pants if I had ALS?
And she sort of laughed it offand I was like, well, it's not
(04:01):
genetic, is it?
And she said no, it's notgenetic, it's, you know, it's
just one of those diseases thatyou know.
Mother nature couldn't be thatcruel that I would end up with
ALS.
Well, back then, the C9 or F72gene had just been discovered,
like three years before that.
So she didn't even know thatthere was a gene that caused ALS
and she started to developthese symptoms.
(04:23):
As you know, with ALS there's alot of misdiagnoses.
So first they thought she hadlupus, and then they thought she
had carpal tunnel syndrome andthey thought she had.
You know, when her voicestarted to change, they thought
she had a thyroglossal duct cystand they recommended surgery.
And so she went through allthis treatment for two years,
(04:45):
obviously progressing in herdisease, and nobody wanted to
diagnose her with ALS becausethey considered it to be a rare
disease, which actually itreally isn't, but that's a whole
nother story, yeah, so finally,around 2018, I could see the
writing on the wall.
I could see that she had sheclearly had ALS.
I had done enough researchabout it and I was like I'm
(05:06):
going to get a genetic test.
And she's like, well, I'll geta genetic test.
You know before you, and I knewthat she wasn't one to delve
into her medical stuff so much,but you know, she had kind of a
shaky ALS diagnosis and I waslike, forget it, I'm going to go
do this.
So we ended up getting our testresults on the same day
actually, and we both found outthat we were carriers of the C9
(05:28):
or F72 gene mutation that causesALS and FTD.
And so when I found that out, ithappened against the backdrop
of a very dynamic situation atmy house.
I'm married, I have twochildren and my husband was
going through chemotherapy forstage four lymphoma, and so he
(05:50):
was in a life-threateningsituation.
My mom had ALS.
She was sort of in her middlestages of ALS around 2018.
You know, she was in alife-threatening situation and
then my son had to be sent to aresidential treatment facility,
which meant that he was removedfrom the home and went to a
residential treatment facility,which meant that he was removed
from the home and went to atherapeutic boarding school, for
reasons we don't have to gointo, but many of them
(06:12):
developmental, many of themneurodiverse and many of them
behavioral.
And so, with three first orderrelatives in life-threatening
situations, I found out that Icarried the gene for a fatal
neurodegenerative disease, andat the time it didn't really
affect me that much because Iwas in the trenches with my kid
(06:34):
and with my husband and my mom.
I was flying back and forth toFlorida to be with my mom and I
was my husband's primarycaregiver and my son's primary
caregiver, and so I couldn'treally care for myself very well
, but I knew enough to enroll inas much longitudinal research
as I could, because I knew thatsometime when things calmed down
(06:57):
in my life, that I would becalled on to do research, and so
that's what I did, and Istarted writing this memoir
about what it was like being inthis situation where everyone
around me was about to die andhow that affected me.
And so that's where I wasbetween like 2018 and 2020.
You know, those years were very, very hard, and my mom passed
(07:20):
away on January 10th 2020, afterlike a five-year battle with
ALS, and it was devastating, asI'm sure you can imagine, but it
made me redouble my efforts tofind a cure, because it wasn't I
mean, I knew that my kids wereat risk, but it really hit me
(07:42):
hard because I was like, well, Ithink age of onset for a C9 ALS
is something like 55, you know,and I was like 50 at the time,
you know, or 51 when she died.
So I joined a bunch of groups atIAM ALS and they had a familial
group and it was run by acouple of, you know, heavy
(08:04):
hitting activists here in theBay area and, um, over the years
, it became really clear that weneeded a space for ourselves,
because IAM ALS is wonderful,but they didn't put a lot of
focus on the familial group andwe wanted something more that
would also speak to FTD, and sowe started our own organization
(08:26):
called End the Legacy, and I'mone of the founding members of
that.
It started maybe two and a halfor three years ago, and so
during the last few years, Ijust have been throwing
everything that I have at thisdisease and, incidentally, I
should tell you, my husband isfine, by the way he?
(08:47):
He's fine.
He actually built himself acabin up in the mountains so he
could enjoy himself fishing,which is, you know, wonderful
and life affirming.
My son, ethan, is actuallydoing really well.
He has a job, he's livingindependently and you know he's
doing very well, and my youngerson, Alex, who, should, you know
(09:07):
, not be ignored, he and I weresort of the two-legged stool
through all of this and you knowhe's doing amazing things.
He's in music school right now.
So, yeah, so life is likereally large right now, but it
wasn't large for a long time asI'm sure you can imagine.
Speaker 1 (09:26):
Yeah, and.
I wanted.
I want to talk about how youwere able to think about
yourself during those years whenyou and your mother found out
that you were ALS gene carriers.
Your mother was sick, you hadeverything going on within your
family I mean like for yourselfindividually at that time, where
(09:49):
you just forced to focus onother people and not yourself.
And then after time it was like, okay, now I can kind of focus
on me and my future and how I amprocessing my own future.
Speaker 2 (10:10):
Yeah, it's a good question.
I mean, actually, you know,being a mother, you probably
know, you know everything thatyou do, you're always worried
about how it's going to impactyour children.
So my children were always atthe front of my mind, as was my
husband, as was my mom.
My children were always at thefront of my mind, as was my
husband, as was my mom.
And you know, I've always beena caregiver in most situations,
even among my friends, and Iplayed in a band and I was
(10:33):
always kind of taking the motherrole.
So really I always put otherpeople first.
And the only time when I everworried about my own genetic
status during those years when Iwas in the trenches with my kid
and my husband and my mom, waswhen I would look at my husband
and he was doing really badlyand you know he was like at his
(10:55):
nadir period during his cancertreatment and I thought, oh my
God, what if he dies?
Yes, and what if I developsymptoms?
What is going to happen with mychildren?
And you know they were youngthen, they were like 12 and 14.
So it wasn't like, oh, they'llmake it through, they can just
(11:15):
fend for themselves.
I mean, you know I was lookingat an ALS diagnosis and my
husband was very sick and my momwas dying.
So who was going to take careof my kids if we all died?
So that's really the only timeI ever worried about myself.
In fact, I very rarely worryabout myself still.
Speaker 1 (11:36):
Yeah, well, I get it.
My guys were 11 and 13 when Iwas diagnosed, so you know,
really close in age with yours.
And for the first few months,while we were going from doctor
to doctor and not knowing whatwe were dealing with, they
didn't know anything.
And as soon as I got thediagnosis, it was like a light
(12:01):
turned on.
Everything changed from me tothem.
How are they going to react?
What are they going to react?
What are they going to say?
Are they going to act out?
You know what does this mean tothem.
On and on and on, and it justis.
I think, as a mother, as aparent, instinctively, that the
focus just shifts and you're notworrying about the diagnosis
(12:26):
part as much as you are thefallout, you know, in the
aftermath.
Speaker 2 (12:32):
So right, yeah and I think we just we're like that
moms are, we're socialized to belike that and I think we're
innately like that also yeah,for those that don't know what,
getting tested positive for thegene, can you explain like does
that mean you're going to get itfor sure?
Speaker 1 (12:55):
What's the percentage and talk a little bit about
what does it mean exactly?
Speaker 2 (13:01):
It's a developing science, actually science.
Actually.
You know, different genes havedifferent penetrance, meaning
that, like, you could have thegene and not develop symptoms,
or you could have the gene anddevelop symptoms.
What's interesting about thingslike, say, SOD1, which is a
different gene that theydiscovered way before they
(13:22):
discovered my gene, is that someof the forms are highly
penetrant and it's somethinglike 90% chance that you're
going to develop the disease.
So it's pretty gnarly right.
But with C9, there's newresearch.
I thought I had a 95% chance ofdeveloping ALS by the time I
was 58 or 59, but new researchis now showing that, depending
(13:45):
on your family history and thepenetrance with your family,
that actually has a lot to dowith how, what your chances are
of getting it.
And like, say that you have thegeneration above you and there
are four siblings and all fourhave ALS or FTD, then your
chances of getting it areprobably pretty high, Right, but
if there's only one or two,then I mean, I think it actually
(14:07):
does play into.
You know, they used to say yourfamily's ALS is not your ALS,
but actually it is in the caseof C9.
And so we're going to find out.
I do have, like I said otherfamily members who are gene
carriers, and one is symptomaticand so, but to be fair, she's
75.
So that is, it's a.
(14:29):
You know, age of onset has todo with it.
Also, my mom's age of onset wasabout 70.
And so that bodes pretty wellfor me, I guess.
Or not well, but better or lesshorrible, I don't know how you
even say it.
Right, right, right horrible.
Speaker 1 (14:49):
I don't know how you even say it.
Right, right, right.
So you know we were talkingabout our children and how the
diagnosis and the worry and youknow stress, the focus shifts
from ourselves to our children.
I remember reading you know,one of the things that you did
with the information that youreceived about being a gene
carrier is that you waited, thatyou held on to that because you
(15:13):
obviously were afraid of how itwas going to affect the
children.
So tell me a little bit aboutthat time period of having to
carry that burden of having andcarrying that burden.
Speaker 2 (15:31):
So you know I mentioned that my husband had
cancer at the time and both kidshad their own mental health
issues around that because, youknow, he went through chemo, he
got really sick, he lost hishair and little kids see that
right and so they start to worrythat their dad's going to die
and they were watching theirnanny, my mom, die of ALS.
And you know, both kids arevery sensitive One's
(15:53):
neurodiverse and I just didn'tknow how they were going to
handle it.
And we talked to a childpsychiatrist and basically his
deal was like don't tell themanything until your disease
becomes something where medicalintervention is a thing.
And I said, well, what wouldthat mean?
Because they don't havemedicine for somebody like me,
(16:15):
you know, like someone who's agene carrier just falls through
the cracks.
And he said if you ever have totravel or be away for more than
a day for your genetic mutation, that's when you tell your kids
.
You know, fortunately orunfortunately, my mom passed
away in 2020, in the height ofthe pandemic, and nobody was
(16:37):
really recruiting for any sortof testing.
It was like I couldn't get onan airplane and go anywhere
until I had a vaccine and thenit was, you know, safe to fly
and all the stuff.
Because the last thing I wantedto do was bring like COVID home
to my husband who was justrecovering from cancer, right.
And so when I was accepted intolongitudinal research at Mass
(17:01):
General that's the dials program, dominant inherited ALS program
I knew I had to fly out toBoston.
And only then did I tell themand I told them not the full
truth but most of the truth.
I said you know, there arepeople in families where there's
ALS and they want to researchthose families, they want to
(17:22):
enroll us in research to helpunderstand the way that ALS
works in our family.
And the kids were kind of likeoh, okay, and at that point they
were like maybe 17 and 15,right, so they were a little bit
older, they weren't, they werekind of post-pubescent, you know
, like not very moody and stillsensitive.
(17:43):
But they were like in a betterspace to receive the news.
And I said I'm going toMassachusetts to go and donate
blood and some tissue samplesand I'm going to do some tests
just to make sure you know thatlike I'm okay.
And I said you guys understandthat like in our family, you
know, als does run in the familyand you know, nani had it, my
(18:07):
grandfather had it, and sothere's a chance that I'm a
carrier of this gene.
And they said, well, are yougoing to die?
And I said, well, you knoweverybody dies, but no, I'm not
going to die of ALS and I'm likeALS and I'm like.
(18:32):
I still maintain that I'm notgoing to die of ALS.
Of course, that's a greatquestion for later and we can
talk about that too.
But you know, I said I'm goingto fly to Boston, I'm going to
do all this stuff and research,and you know we're going to try
and find a cure for this diseasethat killed your Nani.
And they had both learned aboutgenetics because they had been
in middle school and part ofhigh school.
And you know, ethan, my olderson, was like so there's a gene
(18:54):
in the family that causes ALS.
And I said yeah, and he saidand you're a carrier?
I said, well, you know,reluctantly, said yes, I am a
carrier, but it does not meanI'm going to develop the disease
and it doesn't mean anythingLike it doesn't mean that.
And so and that's the truth,and he and he said, well, I mean
, could you get it?
And I said yeah, I could.
And then the younger one, alex,said well, if it's genetic,
(19:21):
like could we get it?
Speaker 1 (19:23):
And.
Speaker 2 (19:23):
I said well, not yet, because you're kids and ALS
only affects adults like 40 andup.
So you know there's lots ofreasons why you won't get it and
I'll tell you what they are.
And I went on to enumerate thatjust because I have the gene
doesn't mean I'm going to getthe disease.
No-transcript get it.
(20:08):
And by participating inresearch I'm going to make sure
that you guys aren't going toget it.
And they both were kind ofquiet for a second.
And then my younger son got upand he put his arms around me
this was at the dinner table,you know.
He put his arms around me andhe said thank you so much for
keeping us safe.
So it was like really clearthat they both got it.
Speaker 1 (20:31):
You know they both got it so yeah, wow, that's
tough, that's tough.
They're like we trust you, weknow you love us, we know you
will protect us, but yet what isit saying?
What are the odds?
Is there a chance?
Oh, that's a lot it's a lot.
Speaker 2 (20:53):
Well, it's kind of interesting because, like my
younger son has actuallyparticipated in the same
research I have.
Like he, they took childrenthrough some of the ftd research
and so he enrolled in researchand he's concerned about me,
that he wants to see a cure forme and I want to see a cure for
him, and so you know he gets it,and I think that activism comes
(21:18):
in a lot of different forms,right.
Speaker 1 (21:19):
Yeah, yeah.
So what is all of this toughconversation, Jen?
Speaker 2 (21:24):
for your relationship with your sons this tough
conversation, Jen, for yourrelationship with your sons.
I think it's made it a muchmore precious relationship Like
we're.
We're closer as a result.
I think that sometimes they getstressed out about it and I'm
there to talk them through thatand sometimes all of my activism
actually stresses them out alittle bit because I'm always
(21:44):
talking about it and I'm sort oflike stresses them out a little
bit because I'm always talkingabout it and I'm sort of like,
um, I'm kind of a honey badgerabout it.
Speaker 1 (21:53):
So, yeah, uh-huh, yeah, that's exactly what I was
thinking too.
Yeah, I mean same.
I was telling someone earliertoday, you know, thursday, I
mean 21 years since I've had ALS.
My guys have been with me withALS, you know, more than without
.
Most of their life has beenwith me having ALS, so it's kind
(22:15):
of in their life.
Although I am very lucky in thefact that I'm a slow progressor
for kids, they have still hadthat on their mind every day,
you know.
So I get it.
You know we're talking a littlebit about relationships and
(22:35):
what the knowledge of having ALSor being a gene carrier can do,
and I've read some of thethings that you have said about
your observations with your ownrelationships and I really,
really appreciate that becauseI've seen a lot over 21 years.
(22:58):
Can you share some exampleswhere people have reacted in a
way that you didn't expect?
Speaker 2 (23:10):
Yeah, I mean, you know like my brother and I are
very close and when I told him Iwas a carrier, his response was
well, how can I help you?
You know, and I think that youcan, you can respond to that
information a lot of differentways.
Like he could have gone andlike hidden under the bed or
something if he wanted to.
(23:31):
but yeah that was amazing and Iwasn't surprised because he's
that kind of guy.
Um, you know, my husband is acowboy, uh, actually born and
raised on the Western slope ofColorado, and he was just like,
well, no reason to worry untilthe doctor tells you to worry,
you know, so sort of like.
He was just very much like.
(23:52):
He's just like, yeah, it'snothing, it's no big deal, and
um, and of course you know hewas going through cancer at the
time.
So, yeah, he had other fish tofry but um, but, but you know, I
had a friend who, um, I raninto, like maybe the day after I
(24:12):
had the genetic test resultsback, and this was a friend who
knew that my husband was sickand who knew that my mom was
sick and who knew that my childwas sick.
And I ran into him, like at thegrocery store or something, and
he's like, hey, how's it going?
I'm like, well, um, you know, Ijust found out that I'm a
(24:33):
carrier of ALS and, um, so, yeah, there's that.
And he said, well, what thehell am I supposed to do with
that information?
And I was just like I just said, well, um, I guess nothing.
Really.
Do you know where the yogurt is?
You know, like?
it was like it was just likethis horrible conversation that
(24:56):
wasn't even really conversation.
And yeah, I mean, I've haddefinitely people say, like you
know, I'm so, so sorry that youhave to live with that.
Like, sometimes I get a littlebit mad about that, like I get I
get sort of defensive, likeactually having my knowing my
(25:17):
genetic status has been like thebest thing to ever happen to me
and I I would rather be askedhow do you feel about that, or
what are you going to do aboutthat, rather than what am I, the
receiver of the news, going todo about that?
Speaker 1 (25:32):
You know, yeah, right , right, right.
Well, I mean I know that yousaid that some people have
fallen away, you know, and theydon't know what to say.
I mean you would see that whensomeone has ALS and they're in
the trenches of ALS or even inthe beginning stages, that
(25:53):
people just stop coming around.
They don't know what to say,they don't know what to do,
they're afraid to say the wrongthing, so they do nothing at all
.
So it's kind of like maybe evena little more dicey when you
are a gene carrier and you havethis burden that perhaps you can
(26:19):
get it.
You don't know.
It's like, oh, now we reallydon't know what to say.
You know that makes it hard forpeople.
You know that makes it hard forpeople.
So I guess, what does supportreally look like for someone
that's a gene carrier, thatdoesn't have symptoms, that
doesn't know for sure what theirfuture is going to hold?
What do you say?
Speaker 2 (26:41):
Well, okay, there's one thing that I failed to
mention, which is just because Idon't have symptoms.
If I pass it on to my children,they could have symptoms.
So even an asymptomatic genecarrier can pass on symptomatic
ALS genes to their offspring.
So this is never going to be adone deal for us until there's a
(27:03):
cure.
And so what does support looklike?
You know, for me I would ratherhave people ask questions than
tell me how they feel, you know,but at the same time I like for
it to be a dialogue.
Support for me right now lookslike if I'm donating to a cause
(27:24):
or I'm doing a fundraiser.
You know, obviously it's easyto write a check, even if it's a
tiny check.
So throwing money at ALSResearch actually really does
help.
You know we started anorganization called End the
Legacy and you know to be toshow up to one of those meetings
or be put on the mailing list,like that's a really important
(27:44):
thing for me, because my familydoesn't really even know what
I'm going through.
So you know for them to um toshow up on a peer support
meeting or whatever it's it'sreally cool, like, um other ways
to support somebody like me.
Obviously you could buy my book, which would be really cool, um
(28:15):
, but you know, I feel verysupported by my friends.
Like, like I, I play Mahjongand like my Mahjong group
friends always ask, like how'sit going, how's the good fight
going?
You know, and I'm going to beum honored at an event at in
Chicago in april and I've gotfriends who are flying out there
with me and like that's reallyabove and beyond uh the call of
duty.
(28:36):
So yeah, I mean that that kindof thing yeah, just a
recognition and congratulationson that honor.
Speaker 1 (28:43):
Uh, well, well deserved.
But yeah just taking interest, Ithink, showing support in any
way, but showing active interest.
Like you said, ask me thequestions, show that you're
you're interested, like you'rereally sincerely interested in
(29:06):
how you are dealing with notonly your own uncertainty but a
whole other level.
Like you said, when the kidsare involved, how will this
affect them in the future?
Will it affect them?
Will they have ALS?
Will they have the gene?
Will it develop into ALS?
That's just a whole other leveland I always say that you know
(29:33):
you don't know what you don'tknow.
Okay, so I don't expect anyoneto understand what I'm going
through, what's in my mind,because you're literally not in
my head.
But to your point, it sure isnice when someone tries to
(29:54):
understand what's going on in myhead or my heart, you know,
especially during hard times.
So I think that's kind of likeno matter what, just a basic
rule of a relationship, anyrelationship.
Speaker 2 (30:12):
Well, yeah, and what's kind of interesting is
that people with ALS and peoplewho carry genetic mutations for
ALS and FTD, we have livesoutside of ALS, but we don't
really ever get a break from thedisease.
Um, we don't really ever get abreak from the disease, you know
, and if, when you carry a gene,you don't get a break because
your mom or dad didn't get abreak, because your grandparent
(30:35):
didn't get a break, because yourkids won't get a break, because
you know, and so we, as youprobably know, people like you,
people like me, we don't everget a vacation from it.
You know, this is like ourlives for the rest of our lives,
and I think that it's just likewhen you ask somebody how's
your work, like, this is my work, this is what I do full time
(30:57):
right now.
Yeah, like ALS advocacy is whatI do, and it doesn't mean I
draw a big paycheck from it, butit pays dividends way better
than any paycheck ever could.
So I'd like to be asked aboutit oh, that's perfect.
Speaker 1 (31:14):
I love that, love, love, love that.
Um, you mentioned your book andI am super excited that you
have taken the time and theenergy to write a book, and I
know it's coming out this yearand it's called Last Nerve, last
(31:34):
Nerve.
Speaker 2 (31:35):
When is it coming out .
It's coming out on May 27th,just in time for Lou Gehrig Day,
and I will be going on tour atthe beginning of June and will
probably be on book tourthroughout the summer.
Speaker 1 (31:50):
Awesome.
Okay, where can we go to followyour tour?
Speaker 2 (31:56):
The best place to follow me right now is on
Instagram.
I'm at Mindy Writes W-R-I-T-E-Sone number one, and so all of
my ALS stuff is on there.
Yeah, so the book will be onAmazon and your local bookseller
can also order it.
Speaker 1 (32:17):
Okay, perfect, and I'll put a link in the show
notes with your Instagram handle.
Speaker 2 (32:25):
Thank you.
Speaker 1 (32:26):
The show notes are available on Facebook and the
website, both at.
I'm dying to tell you podcast,so tell me about the book.
How did you get inspired to say, okay, this is what I want to
do, okay, so?
Speaker 2 (32:44):
I've always been a writer.
I played in a band for a longtime and wrote music, I wrote a
screenplay, I've written essaysand I had a novel come out five
years ago called UnnaturalResources so I've always been a
writer.
You know, I started keeping ajournal and then I was like wait
a minute, this journal isactually kind of interesting, so
(33:06):
I started rewriting it as abook back in 2018 about what
it's like to receive a diagnosis.
You know that you're anasymptomatic person with ALS,
basically, and the stories areorganized somewhat
chronologically about, you know,like what it's like to be the
(33:27):
caregiver of someone with cancer, what it's like to be the
caregiver of somebody who'shaving behavioral issues, what,
what's it like being thedaughter of somebody with ALS
and like all these things goingforward, and it basically it
just tracks those years between2018 and 2023, where I was just
(33:48):
sort of becoming who I am now,like I I was an ALS warrior and
now I'm an ALS warrior andthat's kind of like that's a big
difference for me, because fora really long time I was worried
about everybody in my life andit never occurred to me to worry
about myself or to care formyself, and so I think that this
(34:16):
is.
It's a story that speaks to alot of people in the sort of
sandwich generation, wherethey're taking care of parents
who are passing away andbringing up children.
And you know, I think that itspeaks to a lot of people,
because a lot of people who arein their 50sies or forties are
in the same situation.
Um, it might not be as dramaticas mine was, but, um, you know,
(34:37):
there there is a certain amountof grace and love of yourself
that is required to not worryabout the next 10 years, you
know, to sort of like surrenderto the fact that the truth is
the truth and science is scienceand it's not ready for us.
So that kind of activism, ithas to come from somewhere and
(35:03):
it comes from the patientpopulation.
And so, you know, it took me awhile to realize that I'm a
patient.
You know, I have been inconversation with the FDA and
the NIH and they didn't evenconsider pre-symptomatic gene
carriers to be patients, whichis ridiculous, because we go
through the same testing as allthe patients do and we go
(35:27):
through the same stresses, butwe don't have the physical
manifestations of the diseaseyet.
And so, yeah, it's been a realjourney for me, this learning
experience of you know what doeslife mean and what does a good
life mean, and you know how do Ilive with ALS and FTD,
(35:48):
potentially in my future, and itends up really being a story of
resilience and about hope, andit's not at all like the trauma
memoir that you would think itwould be yeah, yeah, I wouldn't
imagine anyone illustratingpeople no matter what they're
going through.
Speaker 1 (36:08):
I mean, simply, how to focus on what you can control
and to get the most out of thesituation that you are in at
that moment.
Is that right?
Speaker 2 (36:24):
it's that, but it's also like to really love
yourself.
You have to love theimperfections of yourself too.
So, like for you, lori, to bean activist like you're a better
activist as somebody with ALSthan you would be if you did not
have ALS and that part of yourworld and your body and your
(36:46):
soul you have to love that inorder to put yourself out there.
All the time on this podcastit's the same way for me, like I
love myself, but I also lovethe als ftd part of myself,
because I know that that's whatmakes me human, because we all
have an expiration date.
We're like a dozen eggs, right?
(37:08):
Everyone?
Speaker 1 (37:08):
has an expiration date yeah it's just that and
everyone has something you know,whether it's als or ftd, I mean
, everyone has something thatyou think is less than and
shouldn't hold you back.
Yeah, otherwise we would all be.
We would all be in the samestalling position.
(37:31):
Um right, yeah, oh, how are youdoing right now?
How are you balancing livingevery day in the present while
you have so much uncertainty inthe future?
Speaker 2 (37:46):
well, I think that's the idea is like, because the
future is uncertain, you have tobe in the present, you know,
and like.
For me it means just doingthings all the way, like don't
have to do things.
You know, if I have theopportunity to speak at an event
, I'm going to do it because Ican, you know, and if somebody
(38:10):
offers me the opportunity towrite a piece a snarky piece
about agents or whatever, likeI'm, I'm a better writer because
I can throw myself a hundredpercent into writing, because
(38:53):
every time I snuggle my pets,I'm there with them like 100%,
and people get my attention in away that they didn't used to
get.
I mean, I'm a better friend asa result of this, I'm a better
lover as a result of this, I'm abetter parent as a result of
this and I'm a better child as aresult of this.
And so I think that it is.
It isn't just making do withwhat I have, it's being a better
person for having thissituation, and I feel like it's
a gift.
I really do, and being able tocome to that realization this
early in the game makes it thatmuch sweeter for me.
Speaker 1 (39:11):
Yeah, that's true.
That's true.
Yeah, You've mentioned in thelegacy.
So how can listeners supportthat organization?
You know who's invited tolisten in and be a part of that?
Speaker 2 (39:32):
Well, generally speaking, we are sort of geared
toward people with genetic formsof ALS and FTD, that said, also
caregivers of people withgenetic forms of ALS and FTD,
friends of genetic forms of ALSand FTD, friends of fill in the
(39:55):
blank.
You know, I think that I can'treally count the number of times
that my dad has shown up onthis on these calls.
And so, like he comes to visitfrom Chicago I'm from Chicago
Originally he comes toCalifornia to visit and I'll
have like an end the legacymeeting and he'll just sit here
next to me and just listen in.
And you know, he doesn't havegenetic FTD in his family or
genetic ALS in his family at all, because my mom was the carrier
(40:18):
Right, but so, yeah, we have.
And then we have doctors andresearchers on our calls all the
time and we have motivationalspeakers and we do webinars, and
so it's.
If you're interested, it'swwwendthelegacyorg.
It's pretty easy to find us.
Speaker 1 (40:39):
Yeah, and I'm on the website right now, so and it
looks like you can click onabout and get the backstory and
find the leadership team, andthen there's a tab to click on
to get newsletters, and I assumeI'm not finding it right away,
(41:00):
but assume somewhere to sign upto get the newsletter.
Speaker 2 (41:04):
Yes, you can do that too on the website.
You can also make a donation.
Speaker 1 (41:40):
Yes, you can do that too on the website.
You can also make a donation.
So you know you can clickaround and have at it, and you
know it's very exciting.
We're about to have our secondsummit, so we're kind of brand
new, but it, oh my gosh.
Yeah, you have a lot on here,and if you scroll to the bottom
of any page, click on whateversocial media outlet that you
follow to get connected with youthere as well.
So, okay, great, thank you forthat.
So, mindy, this has been great.
Before I let you go, I justwant to ask you what are you
(42:05):
dying to tell us?
Speaker 2 (42:06):
What are you dying to tell us?
I am dying to tell you thatwhen the chips are down and it
looks like there's no hope atall, that is the time to love
the world harder.
Speaker 1 (42:20):
Yeah, thank you so much for being here, and thank
you.
Speaker 2 (42:26):
Thank you so much for having me.
Speaker 1 (42:28):
Yeah, okay, and thank you.
Thank you so much for having me.
Yeah, okay, and then let's stayconnected.
Um, you know, on your book,when it comes out on your book
tour, I'm super excited to readit and, you know, best of luck
to you always and thanks forputting your heart and soul into
this community and helpingother people who are in your
(42:48):
exact situation or, you know,just dealing with ALS already or
anything else.
So really appreciate you.
Speaker 2 (42:57):
Thank you so much for having me, Lori.
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