December 17, 2024 • 39 mins
Ever wondered about the connection between sleep disorders and neurodegenerative diseases? Roe shares her experience with obstructive sleep apnea and REM Sleep Behavior Disorder, discovered during an overnight sleep study at the University of Cincinnati. Despite initial reluctance to use a CPAP machine, she faced the alarming reality that a significant percentage of RBD patients may develop neurodegenerative diseases within a decade. Through personal anecdotes and extensive testing, Roe's journey to a Lewy Body Dementia diagnosis unfolds, emphasizing the critical nature of early diagnosis and treatment.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 2 (00:11):
okay, welcome back to part two with ro right, as we
were ending last week's episode,hurried s road to share with us
, yeah ro, you mentioned to usthat you're very early in your
diagnosis, but you want to beproactive While this may be hard
(00:35):
for some to hear and do rightnow, share with our listeners,
if you would, what you sharedwith us regarding getting your
affairs in orders end of lifeterms.
What did or are you planning todo?
Speaker 3 (00:40):
Stuff like that.
Yeah, so early on, when I wastold to get my affairs in order,
I immediately contacted ourfamily lawyer and he got us in
touch with an elder careattorney, which was awesome time
to do this.
And what I found was, the moreI dove into what I need to
accomplish right, the more peaceof mind I had.
(01:17):
And so it was a real hardbalance between I feel like I
want to get this done and myhusband saying we got time, wait
, don't rush through it, You'redriving yourself crazy trying to
get it done.
And, quite frankly, we had tocome up with a compromise.
We said let's agree to get itdone by the end of the year.
Okay, and that was ourcompromise.
And guess what?
Two weeks ago, we signed allthe papers, the living will, the
(01:39):
trust, the advanced directivesthat I needed to change all of
that stuff, boom, all done.
So there's actually two thingsthat I'm working.
Does that answer your question?
Speaker 1 (01:51):
Linda, yeah, and it's rare, for Carrie, you can weigh
in on this.
We don't hear a lot of peoplethat say, yes, they say get your
affairs in order, but how manyreally do it?
Because, again, yes, they sayget your affairs in order, but
how many really do it?
Because, again, you're early init and it is an uncomfortable
(02:14):
topic, you know, like gettingyour affairs in order, what you
want done when you pass, and Ialways try to say just do it for
the both of you, so it's notlike we're planning your death,
you're.
You know you're planning eachother's death, so it won't be be
, as I don't know what the wordI'm looking for.
Speaker 3 (02:30):
You know we're planning rose death and not her
husband's situation, so it'sgood to plan both it could be
such a burden on the people weleave behind and I want to avoid
that at all costs.
And there's a sense of I hopeI'm using the right word there's
a sense of empowerment to beable to have a say in what I
(02:56):
want to happen towards the endof my life.
And I'm not even talking aboutas I really get to the end.
I'm talking when I can nolonger recognize loved ones,
when I can't communicateeffectively, when I can't dress
and take care of myself.
Those are serious things that Ineeded to consider.
(03:17):
I needed to be able to holdthem up to the light and really
look at how do I want to handlethat?
I don't want to be in denialabout those things.
I know for a fact.
I don't want to burden my adultchildren.
I know that taking care of mymom for eight years, I loved her
dearly, but I wouldn't wantanyone to have to care for me.
(03:38):
So that's really one of mypriorities in trying to get that
done.
Gus and I have had theconversation about when things
really get hard.
Would we relocate so we'recloser to family on the East
Coast, to be around my siblingsor around my daughter?
So that's something we've beentalking about Hopefully that's a
(04:02):
ways off.
Been talking about Hopefullythat's a ways off, I wanted to
look at being able to contributeto research for Lewy body,
being able to donate my brain.
Can I possibly contribute asmall little piece so that maybe
someday they will find a cure,they will find a medication that
(04:24):
can get things you know inorder for those of us dealing
with it.
Speaker 1 (04:29):
I believe they will.
It's just, you know, not in ourlifetime.
But you know, jim wanted hisbrain donated too, and because
really that's the definitivetest, all these other tests like
the lumbar puncture and theskin the SYN1 skin biopsy.
(04:50):
It's all like pieces of thepuzzle.
To try to piece of the puzzlewith symptoms to say, okay, we
think this is Lewy body and Iknow as a caregiver it was very
hard for me to bring this up andI just think it should be now,
(05:11):
like when you're married or evenif you're not married, come 30,
you should have all that done.
You know when you're earlyenough and you know you're going
to be living for a while.
But just get it done then andyou don't have to worry,
especially if you have kids andthings.
But I just thought of that wish, that we would have done that.
But I know it was hard for meand Jim to discuss it,
(05:34):
especially the end of lifewishes when he was just
diagnosed, because he's tryingto comprehend that and he was
still working and functioningmentally.
So for me it was like, yeah, Iget, we have to do that, but he
needed to process.
Especially he was inaccuratelydiagnosed for a little bit and
(05:55):
Kari knows I've been trying towork on creating this end of
life packet, coming up with sometitle like so you've been
diagnosed with LBD.
Now what you know what I mean.
So, like you sharing and Curryand all of our guests and our
Facebook members really helpthose on the journey behind us,
and especially the recentlydiagnosed.
(06:16):
Because you had said you didn'tnot sure if you should come on
because you're recentlydiagnosed, we're like, no,
that's, you're the perfect timeto come on because you're going
through.
I don't think we've had anybodyearly, early diagnosed like
this one before.
Speaker 3 (06:31):
But so I think it opens up the conversation and
I'll tell you something Ilearned in the last month or so.
I was planning on donating mybody, filled out all the
paperwork for UC.
They won't take the body andthe brain, so the brain's going
somewhere else.
And I had this heart-to-heartconversation with my husband and
(06:52):
with my older sister and thefeedback I got was if UC holds
onto the body and after twoyears or three years they
cremate and then they return theashes to the family, where's
the closure?
Are you going to make your kidsand grandkids wait two or three
(07:12):
years to have some kind ofclosure when you're gone?
It's going to be heavy enoughto lose you.
Do you want to have that addedburden?
So, even though my heart was inthe right place, it made me
rethink and not be so set in.
Yeah, that's what I want to do,you know.
So we're tossing around theidea of a green burial.
(07:35):
Are you familiar with the greenburial?
It's an idea that reallyappeals to me, you know to have,
you know, ashes spread in abeautiful meadow the other side
of Cincinnati, and I don't evenneed a stone, I just know.
You know my kids want to comeand meditate somewhere.
(07:56):
They know, they know, you know,but I feel like I'm.
Yeah, I'll skip that, but wealso had a long-term care policy
that we purchased a coupleyears ago, just as a precaution
before the diagnosis, and Ineeded to know, if I consider
end-of-life assistance, will thepolicy still be in effect If I
(08:23):
end my life because of aterminal illness, is that policy
going to be in effect?
And so we had to turn overevery stone and look at what
that would mean, and so there'sbeen a lot to take care of in
that area.
Speaker 1 (08:38):
Yeah, and doing it so soon after you get this
diagnosis.
It's not easy, that's for sure.
And if you're able to share, Iknow you mentioned a little bit
of how your husband's beenhandling your diagnosis, so do
(09:01):
you want to share a little bitby how he is handling it all?
It's okay if you can't and youdon't want to, that's that's
fine too.
Speaker 3 (09:09):
I'm I'm happy to share and I have to respect
where he's at right.
We have to respect where ourspouses are at.
Um, we uh, gus and I wereoffered an opportunity to attend
a support group.
We were told it was going to bea Lewy Body support group at UC
for people recently diagnosedand it was an eight-week group
(09:33):
and Gus was very open to going.
I want to learn about this.
I want to support you.
I'll go every Friday for eightweeks and we showed up and,
quite frankly, we were the onlypeople dealing with Lewy body.
Everybody in the room wasAlzheimer's.
But I have to say that justattending those two hour
meetings once a week it openedup opportunities for us to talk
(09:54):
about the safety in our home ormy driving or cognitive decline,
or do we tell relatives andfriends or how do we handle this
.
So it did provide anopportunity and I was so
thankful.
I never missed an opportunityto tell him how thankful I was
that he was willing to go along.
(10:14):
I'm guessing there might besome spouses that are really
reluctant to go.
Speaker 1 (10:21):
It's just a guess I don't know.
You know you're, you're tryingto.
He is too trying to comprehendand digest this diagnosis.
So it's yeah, so everybody'sgrieving in their own way, but
for different reasons.
Speaker 3 (10:40):
As you go through this, yep and l Linda, I'm
trying to think what was just onmy mind there as far as him
dealing.
Oh yes, we also started seeinga therapist, so we've only had
two sessions, but she's reallyamazing.
We've never gone to therapy.
We've never gone to therapy.
(11:01):
So to find someone that wasgoing to help us specifically
begin to adjust and acclimate tothis new way of living, right,
this new lifestyle, this newdiagnosis, it's been really
beneficial to both of us.
And one of the things I'velearned from this therapist was
(11:23):
I, the patient, I need to learnhow to support my husband so
that he can support me.
And it's an interesting little.
I've heard this beautifulanalogy.
It's like you hear couples wantto be like 50-50.
Everything should be 50-50.
You give, he gives, right.
No, that's bullshit, excuse mylanguage, that's bullshit.
(11:45):
Sometimes I'm at 20 and he's at80.
Sometimes he's at 10 and I'm at90, right?
So we got to weigh in and seewhere each other, where each of
us, are at.
I'll be quite frank with you.
The two of us sat down andwatched Facing the Wind, that
beautiful movie, just lastFriday night, and it was heavy,
(12:10):
especially from the carepartner's perspective, right?
And so that was Friday nightand we had this awesome weekend
planned.
We were going out of townovernight, big dinner and just
the two of us.
And I said to him after themovie he couldn't even talk
about it.
And I said to him let's do this, we know it's there, we know we
(12:35):
watched it together and we'reboth processing it.
Let's take that and put it upon the shelf and we'll know it's
there and we're ready toaddress it.
We'll have that conversation,but right now let's put it on
the shelf, let's go up toColumbus and see John Stewart.
We're going to have a reallynice time tomorrow night.
(12:56):
And that's how we dealt with it.
Speaker 1 (12:58):
Sometimes it's okay to know that it's there and that
you, you know you're going toGet to it when you can Cross
that bridge and for those whodon't know, curry and I were a
part of making a documentaryabout Lewy body dementia from
the patient's perspective andcaregivers, called Facing the
(13:19):
Wind.
I know it was available for alittle bit of time after the New
York film festival.
By the time this episode airs,that'll be passed, but we will
continue to update everyone onhow they can watch it.
I'm not really sure whathappens now that it's been
through the film festival in NewYork, so her and I are just
(13:44):
along for the ride right now.
I haven't.
I haven't been able to watch it.
I had two of my best friendswatch it twice and give me the
like cliff notes, because I wasin New York for the premiere and
there was like a questionsession afterwards and I know
(14:06):
that the film people wanted meto.
They're like you really need towatch it, you really need to
watch it, and I'm like if youwant me to answer questions
afterwards, I can't watch it.
So, cause that's just where Iam with it and I lived.
I said I lived it.
There's nothing they're goingto be able to.
They're going to ask me thatI'm not going to be able to
answer.
So some answer.
(14:28):
So we did post that.
It was available the week.
I guess it was right beforeThanksgiving week up to December
1st, right, kerry, I think?
Speaker 3 (14:33):
It's still streaming today, up until today.
Speaker 1 (14:36):
We're trying to work behind the scenes and figure out
how especially our listeners,or podcast listeners, and our
Facebook group people can haveaccess to it.
Okay, so anyway, kyrie, youasked the next question.
Speaker 2 (14:56):
Before I ask my next question Rose, you talked about
a green burial and that youwouldn't even need a stone.
Let me tell you you would needa stone.
My dad, his mama, died when hewas just a baby.
That was 1934.
And back then all they did wasput rocks for headstones and my
dad showed me where she wasburied at, but I've yet been
(15:22):
able to find her since he passedaway.
You know, there's so many outthere I can't figure out which
rock it is anymore.
If she's under a tree and undera rock, please put your
headstone there, even if it justsays here lie Roe, that way
your family members can find her.
Speaker 3 (15:43):
So, curry, I have a slightly different take.
I have a slightly differenttake on that.
My dad passed away 50 years agoand there's a beautiful stone
in New Jersey, a beautifulcemetery, and I've lived in
Cincinnati most of my life andso I don't feel like I need to
be there, like to see the stone,to be there, to feel his
(16:05):
presence, to feel that my dad'sclose by.
So I get what you're saying, Irespect that, but I think each
of us has to decide what'simportant, right?
If I knew that, my kids couldgo to this garden on the other
side of Cincinnati and roamthese beautiful gardens and know
(16:29):
, hey, moms, to me it's like thespirit continues and that's too
esoteric for this podcast rightnow.
I get what you're saying.
I think it's important.
Speaker 2 (16:42):
I'm the only one that he showed where she was buried
at.
So my sister, my aunt, my unclenone of them know where she's
buried at.
It was just rough you know yeah.
Speaker 3 (16:55):
I just wanted to get a heads up on that.
And there is somethingconsoling.
Even when I visit family injersey and I go to the you know
the grave, you know the gravesite, there is something
consoling being that you knowbeing there, being in the
present, you know in there.
So, yes, I get what you'resaying okay, you bet you now.
Speaker 2 (17:17):
Thank you, man.
Advocacy for those with thedisease.
I'm sorry, skip the page.
Uh, you mentioned to us thatyour new symptoms include
falling balance issues, cottonmouth, rem incontinence issues
you haven't had before, which Iknow are concerning when they
happen.
You said you can only discussthese kinds of symptoms with
(17:39):
certain people.
Can you share a little bit onthat?
Speaker 3 (17:44):
Sure, I'm happy to.
So, uh, I find that when I needto discuss something heavy like
the body donation or somethinglike that, um, end of life
assistance, uh, I have to.
I am lucky in the sense that Ihave several people that I can
(18:07):
go to, but I feel like I need togive them a heads up.
Hey, at some point can we putaside some time to talk about?
I do it with my husband, I dowith my sisters, I do it with my
closest girlfriends, and thisway I'm not just hitting them
with this heavy topic.
So I think that's a really big.
(18:31):
It's been a very big help forme to plan it, to plan to have
that conversation.
I do have two girlfriends thatare much older than me.
They're in their late 70s,girlfriends that are much older
than me.
They're in their late 70s, andwe've been meeting once a month
for three months to talk aboutwhat happens after death, what
(18:51):
are your beliefs, what are yourfeelings, and that's been such a
gift to me to have thatopportunity to talk about any
fears that might come up or um,it's actually given me a lot of
peace of mind.
So I've made we've kind ofcreated that for ourselves Good
deal.
Is that what you were asking,curry?
(19:12):
Yes, ma'am.
Speaker 1 (19:15):
Talk about you now if you can share with our
listeners how you're coping,like how you're coping mentally
and emotionally, because I knowyou shared with us something
you've been doing that hashelped and I was like, okay, I
got to get her to share aboutthat because, as a caregiver
losing someone, I've been toldto also do this.
(19:35):
So what is it that you've beendoing that try to help you with
everything mentally andemotionally?
Speaker 3 (19:42):
yeah, so I have.
So I have rediscovered the giftof journaling, like really and
truly writing down what's goingon inside me, what's the
interior looking like.
I use journaling in a number ofways.
I even signed up for aneight-week class to write.
(20:05):
But I have an ongoing documenton my laptop just changes I've
observed in my body, in my brain, and so every couple of days
I'm adding to it the cottonmouth, the incontinence,
whatever.
That's one part of myjournaling and it helps me keep
track of what's happeningphysically, what's happening
(20:28):
mentally, where I'm at with someof my conversations.
I wanted to talk to so-and-soabout the green burial right,
that's a really good place forme to.
It's like a little file for mybrain.
Does that make sense?
Yeah, yeah, yeah, it's like alittle file for my brain.
Does that make sense?
Yeah, yeah, yeah.
But then there's also the partof journaling which is such a
(20:48):
gift, and I was always ajournaler Years ago.
I've got a stack full ofjournals.
I probably need to toss them,but it's so wonderful to kind of
(21:09):
dip back to that part of mylife and rediscover that
sometimes that's the only way toget in touch with, I think, for
myself, I tend to get involvedin activity and I miss the
opportunity to see how I'mfeeling or what things are
important to me, what are mypriorities, and journaling helps
me to get in touch with thatwhen you shared that, I'm like
(21:29):
that's powerful, because thenwhen for anybody, and then when
you're gone, people can go backand hear about your thoughts and
what you were feeling andthings like that.
Speaker 1 (21:44):
So I think that's great, especially with keeping
track of things, because Curryknows that Jim used to have a
little purple book it's the kindwe gave out at the Caney event
and every week I'd put the dateof when he went to the support
meetings and he would writeeverybody's names and my little
thing about them.
Yeah, so journaling, it know itcan really help.
(22:06):
And you also share with us howyou want to write your memoir
and we've heard of others withLewy Lewy Body Dementia also
doing similar things for theirkids and their grandkids, like
our friend Carl from upstate isdoing that for his grandson who
I think he's three or four.
What do you want tospecifically be in your memoir
(22:29):
that would help others seeking adiagnosis?
Speaker 3 (22:34):
So you mentioned writing for the sake of your
kids, your grandkids.
It's going to sound a littleselfish, linda, but I'm writing
this for myself.
I need to do this for myself.
I truly do.
And when I'm gone, if the kidswant to pick it up, that's great
, it's there right.
But quite frankly, I've had anamazing life I want to write
(22:56):
about when I became a priestess,when I officiated my friend's
wedding, when I did volunteerwork for Women, helping Women,
when I volunteered with hospice.
These are amazing experiencesthat I had that changed my life
for the good and I need todocument that for me.
(23:19):
In the process, like I said,when I signed up for the writing
class, I discovered that it'svery powerful to write down our
memories and then share themwith family members.
So I've had a blast the lasteight to 10 weeks writing about
(23:39):
memories growing up in New YorkCity and sharing them with my
siblings.
I had the opportunity to readone of them to my grandson last
week.
He's like you did all that,grammy, he would have just lived
his life never knowing some ofthis stuff.
Now, some stuff I don't want totell them.
Speaker 1 (23:59):
I was just thinking that about Curry.
I'm like I don't know if heshould be writing down
everything.
Those are the chapters that youedit, but I'm thinking like, as
those with louis body getfurther on, where you start not
remembering that someone couldread them to you, if you, if you
, you know, can't comprehendthat's such a great idea hurry.
(24:19):
You need to start because Iwant to know what happened.
You were 14, 15.
Speaker 3 (24:26):
The other thing I do.
I've made use of the recordingapp on my phone, so if I'm too
tired to sit in front of thelaptop, I'm going to sit there
for 20 minutes to a half hourthinking about what was it like
when I was a broker with thestock exchange.
That was exciting times.
For eight years I sold stocksand mutual funds.
(24:46):
I want to remember those thingsright.
Speaker 1 (24:48):
I thought you were going to say you stole stocks.
Speaker 3 (24:52):
Stole no, no, no, somebody else has that job no.
Speaker 1 (24:57):
But I think that's great.
That's why, when you mentionedit when we were talking the
other day, I'm like you knowshe's got to share about these
journal writings because I'veactually just ordered a whole
bunch of things to startjournaling because other widows
that I'm in groups with do itand they're like it's, you know
it's very helpful get it all out, and so I appreciate you know
(25:21):
you you sharing about all that.
That's something we haven'theard anybody share until this
this time.
Speaker 3 (25:28):
It's life giving as you can tell you.
Speaker 1 (25:30):
You you're doing it you're doing it as well.
So, carrie, now you can askadvocacy.
You're doing it as well.
So, carrie, now you can askadvocacy.
Speaker 2 (25:36):
All right, ro.
Advocacy for those with thedisease needs to start with
those of us who have Lewy bodydementia and our caregivers.
This is why podcast Linda and Iconnected to start a second
Facebook page from the one Ifirst started for my family
called Our Journey with LewyBody Dementia, and me giving the
(25:57):
crazy lady I mean podcast Lindamy telephone number.
Almost four years ago put us onone of the most challenging yet
rewarding advocacy paths thatneither of us could have ever
have imagined.
Ro, how will you continue toadvocate for yourself and for
others?
First question.
And then you mentioned journyourself and for others First
question, and then you mentionedjournaling and starting to
(26:19):
write your memoir.
Share with us your ideas on howothers and yourself can
continue being advocates forthose with Lewy body dementia
and their families.
I know that's a long question.
Speaker 3 (26:31):
That's a long question.
You might have to remind me ofthat part too, he could have
took out the part where hecalled me crazy.
Speaker 2 (26:37):
I'm just saying that was halfway there.
Speaker 3 (26:42):
So, curry, to answer your question, I'm working on a
couple things right now.
I just started putting someideas together.
This is just a vision that Ihave for the future, but I am
working on it.
I would love to see a book thatfeatures not only a little bit
about my story, but I want tosee if we could feature maybe
(27:06):
two dozen, three dozen people'sstory about their Lewy body
journey.
I don't know if that existsright now.
I'm working with two of myfriends that are authors and
they're helping me develop atemplate with questions and
things like that, almost like aninterview thing.
But I also want the recipient,the person sharing their story,
(27:29):
to feel comfortable.
You know the level of sharingthat they want to do.
So that's number one.
I see that as like a morelong-term project that I want to
dedicate some time to.
I also and sometimes I feel alittle resentful, but I notice
Alzheimer's gets an awful lot ofattention and I want to be up
(27:51):
there.
I want to be a brain advocate.
I want to be like the posterchild for Lewy Body.
This is what Lewy Body lookslike, right, and so I'm working
on getting pamphlets andinformation for the
neurologist's office.
I'm educating the socialworkers that are in his office
(28:13):
and that's kind of ongoing.
I did share with them thispodcast and the Facebook pages.
I know they're private, but Iwanted them to know these exist
for your patients, because theyhad no idea.
Speaker 1 (28:27):
We would let doctors into the group for sure if they
said they were neurologists andfamily physicians wanting to
hear from maybe as a guestsometime?
Speaker 3 (28:37):
have you done that?
Speaker 1 (28:37):
already on the podcast?
Yes, but I mean in the supportgroups, you know.
Oh for sure.
Speaker 3 (28:43):
Oh, that would be awesome.
Yeah, that would be awesome.
I love that idea.
Any way that we can look at toeducate more people, to raise
that awareness right, it's allgot to be helpful.
Another thing I noticed that Iwould I don't know how I can
benefit or change it, but I'venoticed that some of the
resources feel like they'resiloed to me, Like you've got
(29:07):
the Lewy Body DementiaAssociation, then you've got the
Lewy Body Resource Center andyou've got the Roller Coaster
Project and there's a lot ofresources and some of them
overlap but it's almostoverwhelming.
So I got to figure out in myhead which ones are beneficial
(29:31):
to me.
I don't know if you're familiarwith something called Dementia
Action Alliance.
They do weekly and monthlygroups and I've kind of dipped
into that.
Speaker 1 (29:42):
We've had someone from there on the podcast in the
very beginning.
Speaker 3 (29:48):
And then Brian's Buddies.
Have you heard of Brian'sBuddies?
It was Brian's Buddy, I think.
Brian was a Lewy body patientand as he progressed in the
disease the wife noticed hisfriends kind of fell off.
They just fell off right.
So she set up Brian's buddiesto make sure that he always had
(30:11):
someone to communicate with,whether it be once every other
week or something like that.
So I attended one meeting.
Again, I don't know if it's forme or not, but I feel like it's
my role to turn over thesestones and look at them and say,
hey, is this you know?
Because if I don't try it out,how will I know?
Speaker 1 (30:33):
See what fits and this perfectly walks you.
It's like we set it up intowhat I want to ask you next,
because, especially the ThursdayZoom meetings that we have,
it's called Louie Buddies.
You know and belong, becauseyou mentioned talking about the
support groups before andbelonging to the groups, because
I can tell you, if you're outthere listening and you haven't
(30:56):
jumped on, we have people fromother countries that attend.
Monday and Fridays is foranybody seeking a diagnosis,
someone who has Louie or theircaregiver.
Thursday afternoons is just forpeople with Louie or their
diagnosis and your spouse orsomeone in your family could
come with you the first time tohelp you.
(31:17):
You know, get acclimated andget it started, and I would.
I would get it going for gymand then I would leave the room.
But it's, I can tell you, andwe've mentioned this before, if
somebody doesn't come to acouple meetings, somebody in the
group is going to reach out tothem.
So there's like so many Louie,we call them Louie buddies
(31:38):
because that's kind of on theline what you were saying.
But my last question before wewrap this up, ro, is you want to
share with our listeners whatit's meant to you to find our
Zoom support groups and Currywill say it's our new Louie
family.
And what advice would you giveothers thinking they wouldn't
(32:00):
belong?
But find out you really dobelong, no matter where you are
in your diagnosis or progression.
Sure.
Speaker 3 (32:09):
So I have to tell you , linda, I first discovered
Louie Body Roller Coasterpodcast before I started
attending the support groups,and the reason was it worked out
for me to listen to the podcastwhen I was walking the 20
minutes to work and the timesthat the meetings were kind of
(32:30):
conflicted with my part-time job.
So I didn't.
I loved the podcast and Ilearned a lot.
I learned a heck of a lot earlyon, but then when I stopped
working in September, I was ableto attend my first meeting and
(32:51):
the first meeting or two washard because there were some
people really struggling.
The first meeting or two washard because there were some
people really struggling, butthe feeling I was left with was
these people get me.
They understand where I'm at.
Speaker 1 (33:07):
They really do.
Can I ask did you attend theThursday groups first the one
just I did?
Speaker 3 (33:15):
So that was the easiest for me because we were
going to the other support group.
It just conflicted.
But I feel like everyonethere's not one person I would
exclude.
Everyone on that support groupmeeting gives 100%.
(33:35):
There's so much respect for oneanother on each person, where
they're at on their journey,right, there's a check-in.
If somebody's not been therefor a week or two, I hear Curry
say hey friend, how you doing?
It's been a while.
There's a feeling of genuinecare and concern.
(33:57):
That's what I get from theweekly meetings and, quite
frankly, that's what'ssustaining me right now.
I kind of live for thosemeetings and I'll tell you a
quick little story.
A couple of weeks ago we weregetting ready to wrap up.
It was like 15 minutes till themeeting ended and my husband
(34:17):
was starting dinner in thebackground and I said to the
group excuse me, I'm going tojump off because I'll help them
get dinner.
I know you got 10 or 15 minutes.
I'm like, okay, love you Ro,I'm like you love me.
And it just melted my heartlike these.
And then, even behind thescenes, to hear that someone in
(34:40):
the group maybe was extradepressed.
And then we exchanged emailsand I sent her an email.
She was so thrilled to get thatemail.
Like there's relationshipsbeing formed beyond the group.
The group is where it starts.
But like I'm involved in awomen's study what do they call
(35:02):
the study group withbiophentamine or something like
that and I found out because Iwas in the group, like I would
have never known to take this Bvitamin.
Speaker 2 (35:13):
I'm taking that also.
I just started it.
Speaker 3 (35:16):
You are, they let you in.
Are you part of the women'sstudy Curry?
Speaker 2 (35:20):
Kind of.
Speaker 1 (35:21):
I'm not even going to go there with that, but I will
say it's.
Speaker 2 (35:26):
Dr Sarah asked me if I'd try it.
Speaker 1 (35:28):
Oh, that's great.
Love it, but it really doesbecome your second family of
people who get get you and likecaregiver to caregiver, we speak
the same language.
Person with the disease.
You know the Thursday groupsare very powerful.
Um, yeah, and Nami, our friendthat attends from Ireland,
(35:50):
always says that she calls itLouis.
Love the days that you thinkyou don't, you don't have it in
you to attend, or the days youreally need to attend because
somebody is going to like liftyou up and I always say we come
in laughing, we get the.
You know, sometimes we'reserious, sometimes we don't even
.
You know there's days maybeLouis mentioned a little bit,
but we all get invested in eachother's lives.
(36:11):
So I kind of always want toplug the support meetings just
because they've meant so much tome also.
So I appreciate you sharingthat.
So, before we go, because Iknow we're getting long for our
part two, I know this episode isgoing to resonate with many and
help many as well.
(36:32):
So do you have any final wordsof wisdom or encouraging words
for the listeners, ro?
Speaker 3 (36:38):
I do.
This is something that came outin my journaling about a week
or so ago, linda.
I wrote the words accept changegracefully and it's really
become a mantra for me.
And it's about the changes inmy cognition.
(36:59):
It's about the physical changes, it's about changes in
relationships, because thosethings are kind of morphing
right.
We all know that that's goingto happen down the road, but
accept change gracefully hasbecome my mantra.
I'm thinking about getting atattoo.
It's actually between that andmy other.
Favorite is that gratitudesustains optimism, and to find
(37:24):
anything, something small everysingle day, to be grateful for
it really and truly keeps megoing from day to day.
Speaker 1 (37:37):
That's perfect, perfect, I love that.
Accept change gracefully.
Speaker 2 (37:42):
Well, folks, that's all we have time for this week.
Ro, we want to thank you againfor coming on and sharing your
experiences and giving words ofencouragement to all of our
listeners.
We want all of you to be a partof our podcast series and share
your thoughts on topics youwant to hear about.
We'd love to hear your feedback.
Speaker 1 (38:01):
Yeah, and thanks again, Ro, because I know we
could have a part three and apart four probably, which not
off the table, but for now we'regoing to say thank you so much
for sharing what you've sharedtoday, and now you all know our
names, so you can bombard herFacebook Messenger.
Speaker 3 (38:21):
Thank you for having me, no problem.
Speaker 1 (38:23):
Please send your suggestions and comments to
either our email,louiebodyrollercoaster at
gmailcom, or on either Facebookpage, the Art Journey with Louie
Body Dementia or the Louie BodyRoller Coaster Podcast group,
and we really can't thank youall for your supporting us, even
though we don't get an episodeoff every week as we would
(38:43):
really like to, and thank youfor past and present supporters,
because it's you all what keepus going, even though life is
kicking us every now and then,we're doing our best to just
keep plugging away.
Speaker 2 (39:01):
Yeah, as always, we will continue to post the link
for the podcast each week foryou in our Facebook group, which
is Our Journey with Lewy BodyDementia, and on our Lewy Body
Dementia Roller Coaster podcastgroup, as well as many other
groups.
So thanks for joining us thisweek, folks.
Speaker 1 (39:19):
Until next week.
This is Linda.
Speaker 2 (39:21):
And Curry signing off .
okay, welcome back to part two with ro right, as we
were ending last week's episode,hurried s road to share with us
, yeah ro, you mentioned to usthat you're very early in your
diagnosis, but you want to beproactive While this may be hard
(00:35):
for some to hear and do rightnow, share with our listeners,
if you would, what you sharedwith us regarding getting your
affairs in orders end of lifeterms.
What did or are you planning todo?
Speaker 3 (00:40):
Stuff like that.
Yeah, so early on, when I wastold to get my affairs in order,
I immediately contacted ourfamily lawyer and he got us in
touch with an elder careattorney, which was awesome time
to do this.
And what I found was, the moreI dove into what I need to
accomplish right, the more peaceof mind I had.
(01:17):
And so it was a real hardbalance between I feel like I
want to get this done and myhusband saying we got time, wait
, don't rush through it, You'redriving yourself crazy trying to
get it done.
And, quite frankly, we had tocome up with a compromise.
We said let's agree to get itdone by the end of the year.
Okay, and that was ourcompromise.
And guess what?
Two weeks ago, we signed allthe papers, the living will, the
(01:39):
trust, the advanced directivesthat I needed to change all of
that stuff, boom, all done.
So there's actually two thingsthat I'm working.
Does that answer your question?
Speaker 1 (01:51):
Linda, yeah, and it's rare, for Carrie, you can weigh
in on this.
We don't hear a lot of peoplethat say, yes, they say get your
affairs in order, but how manyreally do it?
Because, again, yes, they sayget your affairs in order, but
how many really do it?
Because, again, you're early init and it is an uncomfortable
(02:14):
topic, you know, like gettingyour affairs in order, what you
want done when you pass, and Ialways try to say just do it for
the both of you, so it's notlike we're planning your death,
you're.
You know you're planning eachother's death, so it won't be be
, as I don't know what the wordI'm looking for.
Speaker 3 (02:30):
You know we're planning rose death and not her
husband's situation, so it'sgood to plan both it could be
such a burden on the people weleave behind and I want to avoid
that at all costs.
And there's a sense of I hopeI'm using the right word there's
a sense of empowerment to beable to have a say in what I
(02:56):
want to happen towards the endof my life.
And I'm not even talking aboutas I really get to the end.
I'm talking when I can nolonger recognize loved ones,
when I can't communicateeffectively, when I can't dress
and take care of myself.
Those are serious things that Ineeded to consider.
(03:17):
I needed to be able to holdthem up to the light and really
look at how do I want to handlethat?
I don't want to be in denialabout those things.
I know for a fact.
I don't want to burden my adultchildren.
I know that taking care of mymom for eight years, I loved her
dearly, but I wouldn't wantanyone to have to care for me.
(03:38):
So that's really one of mypriorities in trying to get that
done.
Gus and I have had theconversation about when things
really get hard.
Would we relocate so we'recloser to family on the East
Coast, to be around my siblingsor around my daughter?
So that's something we've beentalking about Hopefully that's a
(04:02):
ways off.
Been talking about Hopefullythat's a ways off, I wanted to
look at being able to contributeto research for Lewy body,
being able to donate my brain.
Can I possibly contribute asmall little piece so that maybe
someday they will find a cure,they will find a medication that
(04:24):
can get things you know inorder for those of us dealing
with it.
Speaker 1 (04:29):
I believe they will.
It's just, you know, not in ourlifetime.
But you know, jim wanted hisbrain donated too, and because
really that's the definitivetest, all these other tests like
the lumbar puncture and theskin the SYN1 skin biopsy.
(04:50):
It's all like pieces of thepuzzle.
To try to piece of the puzzlewith symptoms to say, okay, we
think this is Lewy body and Iknow as a caregiver it was very
hard for me to bring this up andI just think it should be now,
(05:11):
like when you're married or evenif you're not married, come 30,
you should have all that done.
You know when you're earlyenough and you know you're going
to be living for a while.
But just get it done then andyou don't have to worry,
especially if you have kids andthings.
But I just thought of that wish, that we would have done that.
But I know it was hard for meand Jim to discuss it,
(05:34):
especially the end of lifewishes when he was just
diagnosed, because he's tryingto comprehend that and he was
still working and functioningmentally.
So for me it was like, yeah, Iget, we have to do that, but he
needed to process.
Especially he was inaccuratelydiagnosed for a little bit and
(05:55):
Kari knows I've been trying towork on creating this end of
life packet, coming up with sometitle like so you've been
diagnosed with LBD.
Now what you know what I mean.
So, like you sharing and Curryand all of our guests and our
Facebook members really helpthose on the journey behind us,
and especially the recentlydiagnosed.
(06:16):
Because you had said you didn'tnot sure if you should come on
because you're recentlydiagnosed, we're like, no,
that's, you're the perfect timeto come on because you're going
through.
I don't think we've had anybodyearly, early diagnosed like
this one before.
Speaker 3 (06:31):
But so I think it opens up the conversation and
I'll tell you something Ilearned in the last month or so.
I was planning on donating mybody, filled out all the
paperwork for UC.
They won't take the body andthe brain, so the brain's going
somewhere else.
And I had this heart-to-heartconversation with my husband and
(06:52):
with my older sister and thefeedback I got was if UC holds
onto the body and after twoyears or three years they
cremate and then they return theashes to the family, where's
the closure?
Are you going to make your kidsand grandkids wait two or three
(07:12):
years to have some kind ofclosure when you're gone?
It's going to be heavy enoughto lose you.
Do you want to have that addedburden?
So, even though my heart was inthe right place, it made me
rethink and not be so set in.
Yeah, that's what I want to do,you know.
So we're tossing around theidea of a green burial.
(07:35):
Are you familiar with the greenburial?
It's an idea that reallyappeals to me, you know to have,
you know, ashes spread in abeautiful meadow the other side
of Cincinnati, and I don't evenneed a stone, I just know.
You know my kids want to comeand meditate somewhere.
(07:56):
They know, they know, you know,but I feel like I'm.
Yeah, I'll skip that, but wealso had a long-term care policy
that we purchased a coupleyears ago, just as a precaution
before the diagnosis, and Ineeded to know, if I consider
end-of-life assistance, will thepolicy still be in effect If I
(08:23):
end my life because of aterminal illness, is that policy
going to be in effect?
And so we had to turn overevery stone and look at what
that would mean, and so there'sbeen a lot to take care of in
that area.
Speaker 1 (08:38):
Yeah, and doing it so soon after you get this
diagnosis.
It's not easy, that's for sure.
And if you're able to share, Iknow you mentioned a little bit
of how your husband's beenhandling your diagnosis, so do
(09:01):
you want to share a little bitby how he is handling it all?
It's okay if you can't and youdon't want to, that's that's
fine too.
Speaker 3 (09:09):
I'm I'm happy to share and I have to respect
where he's at right.
We have to respect where ourspouses are at.
Um, we uh, gus and I wereoffered an opportunity to attend
a support group.
We were told it was going to bea Lewy Body support group at UC
for people recently diagnosedand it was an eight-week group
(09:33):
and Gus was very open to going.
I want to learn about this.
I want to support you.
I'll go every Friday for eightweeks and we showed up and,
quite frankly, we were the onlypeople dealing with Lewy body.
Everybody in the room wasAlzheimer's.
But I have to say that justattending those two hour
meetings once a week it openedup opportunities for us to talk
(09:54):
about the safety in our home ormy driving or cognitive decline,
or do we tell relatives andfriends or how do we handle this
.
So it did provide anopportunity and I was so
thankful.
I never missed an opportunityto tell him how thankful I was
that he was willing to go along.
(10:14):
I'm guessing there might besome spouses that are really
reluctant to go.
Speaker 1 (10:21):
It's just a guess I don't know.
You know you're, you're tryingto.
He is too trying to comprehendand digest this diagnosis.
So it's yeah, so everybody'sgrieving in their own way, but
for different reasons.
Speaker 3 (10:40):
As you go through this, yep and l Linda, I'm
trying to think what was just onmy mind there as far as him
dealing.
Oh yes, we also started seeinga therapist, so we've only had
two sessions, but she's reallyamazing.
We've never gone to therapy.
We've never gone to therapy.
(11:01):
So to find someone that wasgoing to help us specifically
begin to adjust and acclimate tothis new way of living, right,
this new lifestyle, this newdiagnosis, it's been really
beneficial to both of us.
And one of the things I'velearned from this therapist was
(11:23):
I, the patient, I need to learnhow to support my husband so
that he can support me.
And it's an interesting little.
I've heard this beautifulanalogy.
It's like you hear couples wantto be like 50-50.
Everything should be 50-50.
You give, he gives, right.
No, that's bullshit, excuse mylanguage, that's bullshit.
(11:45):
Sometimes I'm at 20 and he's at80.
Sometimes he's at 10 and I'm at90, right?
So we got to weigh in and seewhere each other, where each of
us, are at.
I'll be quite frank with you.
The two of us sat down andwatched Facing the Wind, that
beautiful movie, just lastFriday night, and it was heavy,
(12:10):
especially from the carepartner's perspective, right?
And so that was Friday nightand we had this awesome weekend
planned.
We were going out of townovernight, big dinner and just
the two of us.
And I said to him after themovie he couldn't even talk
about it.
And I said to him let's do this, we know it's there, we know we
(12:35):
watched it together and we'reboth processing it.
Let's take that and put it upon the shelf and we'll know it's
there and we're ready toaddress it.
We'll have that conversation,but right now let's put it on
the shelf, let's go up toColumbus and see John Stewart.
We're going to have a reallynice time tomorrow night.
(12:56):
And that's how we dealt with it.
Speaker 1 (12:58):
Sometimes it's okay to know that it's there and that
you, you know you're going toGet to it when you can Cross
that bridge and for those whodon't know, curry and I were a
part of making a documentaryabout Lewy body dementia from
the patient's perspective andcaregivers, called Facing the
(13:19):
Wind.
I know it was available for alittle bit of time after the New
York film festival.
By the time this episode airs,that'll be passed, but we will
continue to update everyone onhow they can watch it.
I'm not really sure whathappens now that it's been
through the film festival in NewYork, so her and I are just
(13:44):
along for the ride right now.
I haven't.
I haven't been able to watch it.
I had two of my best friendswatch it twice and give me the
like cliff notes, because I wasin New York for the premiere and
there was like a questionsession afterwards and I know
(14:06):
that the film people wanted meto.
They're like you really need towatch it, you really need to
watch it, and I'm like if youwant me to answer questions
afterwards, I can't watch it.
So, cause that's just where Iam with it and I lived.
I said I lived it.
There's nothing they're goingto be able to.
They're going to ask me thatI'm not going to be able to
answer.
So some answer.
(14:28):
So we did post that.
It was available the week.
I guess it was right beforeThanksgiving week up to December
1st, right, kerry, I think?
Speaker 3 (14:33):
It's still streaming today, up until today.
Speaker 1 (14:36):
We're trying to work behind the scenes and figure out
how especially our listeners,or podcast listeners, and our
Facebook group people can haveaccess to it.
Okay, so anyway, kyrie, youasked the next question.
Speaker 2 (14:56):
Before I ask my next question Rose, you talked about
a green burial and that youwouldn't even need a stone.
Let me tell you you would needa stone.
My dad, his mama, died when hewas just a baby.
That was 1934.
And back then all they did wasput rocks for headstones and my
dad showed me where she wasburied at, but I've yet been
(15:22):
able to find her since he passedaway.
You know, there's so many outthere I can't figure out which
rock it is anymore.
If she's under a tree and undera rock, please put your
headstone there, even if it justsays here lie Roe, that way
your family members can find her.
Speaker 3 (15:43):
So, curry, I have a slightly different take.
I have a slightly differenttake on that.
My dad passed away 50 years agoand there's a beautiful stone
in New Jersey, a beautifulcemetery, and I've lived in
Cincinnati most of my life andso I don't feel like I need to
be there, like to see the stone,to be there, to feel his
(16:05):
presence, to feel that my dad'sclose by.
So I get what you're saying, Irespect that, but I think each
of us has to decide what'simportant, right?
If I knew that, my kids couldgo to this garden on the other
side of Cincinnati and roamthese beautiful gardens and know
(16:29):
, hey, moms, to me it's like thespirit continues and that's too
esoteric for this podcast rightnow.
I get what you're saying.
I think it's important.
Speaker 2 (16:42):
I'm the only one that he showed where she was buried
at.
So my sister, my aunt, my unclenone of them know where she's
buried at.
It was just rough you know yeah.
Speaker 3 (16:55):
I just wanted to get a heads up on that.
And there is somethingconsoling.
Even when I visit family injersey and I go to the you know
the grave, you know the gravesite, there is something
consoling being that you knowbeing there, being in the
present, you know in there.
So, yes, I get what you'resaying okay, you bet you now.
Speaker 2 (17:17):
Thank you, man.
Advocacy for those with thedisease.
I'm sorry, skip the page.
Uh, you mentioned to us thatyour new symptoms include
falling balance issues, cottonmouth, rem incontinence issues
you haven't had before, which Iknow are concerning when they
happen.
You said you can only discussthese kinds of symptoms with
(17:39):
certain people.
Can you share a little bit onthat?
Speaker 3 (17:44):
Sure, I'm happy to.
So, uh, I find that when I needto discuss something heavy like
the body donation or somethinglike that, um, end of life
assistance, uh, I have to.
I am lucky in the sense that Ihave several people that I can
(18:07):
go to, but I feel like I need togive them a heads up.
Hey, at some point can we putaside some time to talk about?
I do it with my husband, I dowith my sisters, I do it with my
closest girlfriends, and thisway I'm not just hitting them
with this heavy topic.
So I think that's a really big.
(18:31):
It's been a very big help forme to plan it, to plan to have
that conversation.
I do have two girlfriends thatare much older than me.
They're in their late 70s,girlfriends that are much older
than me.
They're in their late 70s, andwe've been meeting once a month
for three months to talk aboutwhat happens after death, what
(18:51):
are your beliefs, what are yourfeelings, and that's been such a
gift to me to have thatopportunity to talk about any
fears that might come up or um,it's actually given me a lot of
peace of mind.
So I've made we've kind ofcreated that for ourselves Good
deal.
Is that what you were asking,curry?
(19:12):
Yes, ma'am.
Speaker 1 (19:15):
Talk about you now if you can share with our
listeners how you're coping,like how you're coping mentally
and emotionally, because I knowyou shared with us something
you've been doing that hashelped and I was like, okay, I
got to get her to share aboutthat because, as a caregiver
losing someone, I've been toldto also do this.
(19:35):
So what is it that you've beendoing that try to help you with
everything mentally andemotionally?
Speaker 3 (19:42):
yeah, so I have.
So I have rediscovered the giftof journaling, like really and
truly writing down what's goingon inside me, what's the
interior looking like.
I use journaling in a number ofways.
I even signed up for aneight-week class to write.
(20:05):
But I have an ongoing documenton my laptop just changes I've
observed in my body, in my brain, and so every couple of days
I'm adding to it the cottonmouth, the incontinence,
whatever.
That's one part of myjournaling and it helps me keep
track of what's happeningphysically, what's happening
(20:28):
mentally, where I'm at with someof my conversations.
I wanted to talk to so-and-soabout the green burial right,
that's a really good place forme to.
It's like a little file for mybrain.
Does that make sense?
Yeah, yeah, yeah, it's like alittle file for my brain.
Does that make sense?
Yeah, yeah, yeah.
But then there's also the partof journaling which is such a
(20:48):
gift, and I was always ajournaler Years ago.
I've got a stack full ofjournals.
I probably need to toss them,but it's so wonderful to kind of
(21:09):
dip back to that part of mylife and rediscover that
sometimes that's the only way toget in touch with, I think, for
myself, I tend to get involvedin activity and I miss the
opportunity to see how I'mfeeling or what things are
important to me, what are mypriorities, and journaling helps
me to get in touch with thatwhen you shared that, I'm like
(21:29):
that's powerful, because thenwhen for anybody, and then when
you're gone, people can go backand hear about your thoughts and
what you were feeling andthings like that.
Speaker 1 (21:44):
So I think that's great, especially with keeping
track of things, because Curryknows that Jim used to have a
little purple book it's the kindwe gave out at the Caney event
and every week I'd put the dateof when he went to the support
meetings and he would writeeverybody's names and my little
thing about them.
Yeah, so journaling, it know itcan really help.
(22:06):
And you also share with us howyou want to write your memoir
and we've heard of others withLewy Lewy Body Dementia also
doing similar things for theirkids and their grandkids, like
our friend Carl from upstate isdoing that for his grandson who
I think he's three or four.
What do you want tospecifically be in your memoir
(22:29):
that would help others seeking adiagnosis?
Speaker 3 (22:34):
So you mentioned writing for the sake of your
kids, your grandkids.
It's going to sound a littleselfish, linda, but I'm writing
this for myself.
I need to do this for myself.
I truly do.
And when I'm gone, if the kidswant to pick it up, that's great
, it's there right.
But quite frankly, I've had anamazing life I want to write
(22:56):
about when I became a priestess,when I officiated my friend's
wedding, when I did volunteerwork for Women, helping Women,
when I volunteered with hospice.
These are amazing experiencesthat I had that changed my life
for the good and I need todocument that for me.
(23:19):
In the process, like I said,when I signed up for the writing
class, I discovered that it'svery powerful to write down our
memories and then share themwith family members.
So I've had a blast the lasteight to 10 weeks writing about
(23:39):
memories growing up in New YorkCity and sharing them with my
siblings.
I had the opportunity to readone of them to my grandson last
week.
He's like you did all that,grammy, he would have just lived
his life never knowing some ofthis stuff.
Now, some stuff I don't want totell them.
Speaker 1 (23:59):
I was just thinking that about Curry.
I'm like I don't know if heshould be writing down
everything.
Those are the chapters that youedit, but I'm thinking like, as
those with louis body getfurther on, where you start not
remembering that someone couldread them to you, if you, if you
, you know, can't comprehendthat's such a great idea hurry.
(24:19):
You need to start because Iwant to know what happened.
You were 14, 15.
Speaker 3 (24:26):
The other thing I do.
I've made use of the recordingapp on my phone, so if I'm too
tired to sit in front of thelaptop, I'm going to sit there
for 20 minutes to a half hourthinking about what was it like
when I was a broker with thestock exchange.
That was exciting times.
For eight years I sold stocksand mutual funds.
(24:46):
I want to remember those thingsright.
Speaker 1 (24:48):
I thought you were going to say you stole stocks.
Speaker 3 (24:52):
Stole no, no, no, somebody else has that job no.
Speaker 1 (24:57):
But I think that's great.
That's why, when you mentionedit when we were talking the
other day, I'm like you knowshe's got to share about these
journal writings because I'veactually just ordered a whole
bunch of things to startjournaling because other widows
that I'm in groups with do itand they're like it's, you know
it's very helpful get it all out, and so I appreciate you know
(25:21):
you you sharing about all that.
That's something we haven'theard anybody share until this
this time.
Speaker 3 (25:28):
It's life giving as you can tell you.
Speaker 1 (25:30):
You you're doing it you're doing it as well.
So, carrie, now you can askadvocacy.
You're doing it as well.
So, carrie, now you can askadvocacy.
Speaker 2 (25:36):
All right, ro.
Advocacy for those with thedisease needs to start with
those of us who have Lewy bodydementia and our caregivers.
This is why podcast Linda and Iconnected to start a second
Facebook page from the one Ifirst started for my family
called Our Journey with LewyBody Dementia, and me giving the
(25:57):
crazy lady I mean podcast Lindamy telephone number.
Almost four years ago put us onone of the most challenging yet
rewarding advocacy paths thatneither of us could have ever
have imagined.
Ro, how will you continue toadvocate for yourself and for
others?
First question.
And then you mentioned journyourself and for others First
question, and then you mentionedjournaling and starting to
(26:19):
write your memoir.
Share with us your ideas on howothers and yourself can
continue being advocates forthose with Lewy body dementia
and their families.
I know that's a long question.
Speaker 3 (26:31):
That's a long question.
You might have to remind me ofthat part too, he could have
took out the part where hecalled me crazy.
Speaker 2 (26:37):
I'm just saying that was halfway there.
Speaker 3 (26:42):
So, curry, to answer your question, I'm working on a
couple things right now.
I just started putting someideas together.
This is just a vision that Ihave for the future, but I am
working on it.
I would love to see a book thatfeatures not only a little bit
about my story, but I want tosee if we could feature maybe
(27:06):
two dozen, three dozen people'sstory about their Lewy body
journey.
I don't know if that existsright now.
I'm working with two of myfriends that are authors and
they're helping me develop atemplate with questions and
things like that, almost like aninterview thing.
But I also want the recipient,the person sharing their story,
(27:29):
to feel comfortable.
You know the level of sharingthat they want to do.
So that's number one.
I see that as like a morelong-term project that I want to
dedicate some time to.
I also and sometimes I feel alittle resentful, but I notice
Alzheimer's gets an awful lot ofattention and I want to be up
(27:51):
there.
I want to be a brain advocate.
I want to be like the posterchild for Lewy Body.
This is what Lewy Body lookslike, right, and so I'm working
on getting pamphlets andinformation for the
neurologist's office.
I'm educating the socialworkers that are in his office
(28:13):
and that's kind of ongoing.
I did share with them thispodcast and the Facebook pages.
I know they're private, but Iwanted them to know these exist
for your patients, because theyhad no idea.
Speaker 1 (28:27):
We would let doctors into the group for sure if they
said they were neurologists andfamily physicians wanting to
hear from maybe as a guestsometime?
Speaker 3 (28:37):
have you done that?
Speaker 1 (28:37):
already on the podcast?
Yes, but I mean in the supportgroups, you know.
Oh for sure.
Speaker 3 (28:43):
Oh, that would be awesome.
Yeah, that would be awesome.
I love that idea.
Any way that we can look at toeducate more people, to raise
that awareness right, it's allgot to be helpful.
Another thing I noticed that Iwould I don't know how I can
benefit or change it, but I'venoticed that some of the
resources feel like they'resiloed to me, Like you've got
(29:07):
the Lewy Body DementiaAssociation, then you've got the
Lewy Body Resource Center andyou've got the Roller Coaster
Project and there's a lot ofresources and some of them
overlap but it's almostoverwhelming.
So I got to figure out in myhead which ones are beneficial
(29:31):
to me.
I don't know if you're familiarwith something called Dementia
Action Alliance.
They do weekly and monthlygroups and I've kind of dipped
into that.
Speaker 1 (29:42):
We've had someone from there on the podcast in the
very beginning.
Speaker 3 (29:48):
And then Brian's Buddies.
Have you heard of Brian'sBuddies?
It was Brian's Buddy, I think.
Brian was a Lewy body patientand as he progressed in the
disease the wife noticed hisfriends kind of fell off.
They just fell off right.
So she set up Brian's buddiesto make sure that he always had
(30:11):
someone to communicate with,whether it be once every other
week or something like that.
So I attended one meeting.
Again, I don't know if it's forme or not, but I feel like it's
my role to turn over thesestones and look at them and say,
hey, is this you know?
Because if I don't try it out,how will I know?
Speaker 1 (30:33):
See what fits and this perfectly walks you.
It's like we set it up intowhat I want to ask you next,
because, especially the ThursdayZoom meetings that we have,
it's called Louie Buddies.
You know and belong, becauseyou mentioned talking about the
support groups before andbelonging to the groups, because
I can tell you, if you're outthere listening and you haven't
(30:56):
jumped on, we have people fromother countries that attend.
Monday and Fridays is foranybody seeking a diagnosis,
someone who has Louie or theircaregiver.
Thursday afternoons is just forpeople with Louie or their
diagnosis and your spouse orsomeone in your family could
come with you the first time tohelp you.
(31:17):
You know, get acclimated andget it started, and I would.
I would get it going for gymand then I would leave the room.
But it's, I can tell you, andwe've mentioned this before, if
somebody doesn't come to acouple meetings, somebody in the
group is going to reach out tothem.
So there's like so many Louie,we call them Louie buddies
(31:38):
because that's kind of on theline what you were saying.
But my last question before wewrap this up, ro, is you want to
share with our listeners whatit's meant to you to find our
Zoom support groups and Currywill say it's our new Louie
family.
And what advice would you giveothers thinking they wouldn't
(32:00):
belong?
But find out you really dobelong, no matter where you are
in your diagnosis or progression.
Sure.
Speaker 3 (32:09):
So I have to tell you , linda, I first discovered
Louie Body Roller Coasterpodcast before I started
attending the support groups,and the reason was it worked out
for me to listen to the podcastwhen I was walking the 20
minutes to work and the timesthat the meetings were kind of
(32:30):
conflicted with my part-time job.
So I didn't.
I loved the podcast and Ilearned a lot.
I learned a heck of a lot earlyon, but then when I stopped
working in September, I was ableto attend my first meeting and
(32:51):
the first meeting or two washard because there were some
people really struggling.
The first meeting or two washard because there were some
people really struggling, butthe feeling I was left with was
these people get me.
They understand where I'm at.
Speaker 1 (33:07):
They really do.
Can I ask did you attend theThursday groups first the one
just I did?
Speaker 3 (33:15):
So that was the easiest for me because we were
going to the other support group.
It just conflicted.
But I feel like everyonethere's not one person I would
exclude.
Everyone on that support groupmeeting gives 100%.
(33:35):
There's so much respect for oneanother on each person, where
they're at on their journey,right, there's a check-in.
If somebody's not been therefor a week or two, I hear Curry
say hey friend, how you doing?
It's been a while.
There's a feeling of genuinecare and concern.
(33:57):
That's what I get from theweekly meetings and, quite
frankly, that's what'ssustaining me right now.
I kind of live for thosemeetings and I'll tell you a
quick little story.
A couple of weeks ago we weregetting ready to wrap up.
It was like 15 minutes till themeeting ended and my husband
(34:17):
was starting dinner in thebackground and I said to the
group excuse me, I'm going tojump off because I'll help them
get dinner.
I know you got 10 or 15 minutes.
I'm like, okay, love you Ro,I'm like you love me.
And it just melted my heartlike these.
And then, even behind thescenes, to hear that someone in
(34:40):
the group maybe was extradepressed.
And then we exchanged emailsand I sent her an email.
She was so thrilled to get thatemail.
Like there's relationshipsbeing formed beyond the group.
The group is where it starts.
But like I'm involved in awomen's study what do they call
(35:02):
the study group withbiophentamine or something like
that and I found out because Iwas in the group, like I would
have never known to take this Bvitamin.
Speaker 2 (35:13):
I'm taking that also.
I just started it.
Speaker 3 (35:16):
You are, they let you in.
Are you part of the women'sstudy Curry?
Speaker 2 (35:20):
Kind of.
Speaker 1 (35:21):
I'm not even going to go there with that, but I will
say it's.
Speaker 2 (35:26):
Dr Sarah asked me if I'd try it.
Speaker 1 (35:28):
Oh, that's great.
Love it, but it really doesbecome your second family of
people who get get you and likecaregiver to caregiver, we speak
the same language.
Person with the disease.
You know the Thursday groupsare very powerful.
Um, yeah, and Nami, our friendthat attends from Ireland,
(35:50):
always says that she calls itLouis.
Love the days that you thinkyou don't, you don't have it in
you to attend, or the days youreally need to attend because
somebody is going to like liftyou up and I always say we come
in laughing, we get the.
You know, sometimes we'reserious, sometimes we don't even
.
You know there's days maybeLouis mentioned a little bit,
but we all get invested in eachother's lives.
(36:11):
So I kind of always want toplug the support meetings just
because they've meant so much tome also.
So I appreciate you sharingthat.
So, before we go, because Iknow we're getting long for our
part two, I know this episode isgoing to resonate with many and
help many as well.
(36:32):
So do you have any final wordsof wisdom or encouraging words
for the listeners, ro?
Speaker 3 (36:38):
I do.
This is something that came outin my journaling about a week
or so ago, linda.
I wrote the words accept changegracefully and it's really
become a mantra for me.
And it's about the changes inmy cognition.
(36:59):
It's about the physical changes, it's about changes in
relationships, because thosethings are kind of morphing
right.
We all know that that's goingto happen down the road, but
accept change gracefully hasbecome my mantra.
I'm thinking about getting atattoo.
It's actually between that andmy other.
Favorite is that gratitudesustains optimism, and to find
(37:24):
anything, something small everysingle day, to be grateful for
it really and truly keeps megoing from day to day.
Speaker 1 (37:37):
That's perfect, perfect, I love that.
Accept change gracefully.
Speaker 2 (37:42):
Well, folks, that's all we have time for this week.
Ro, we want to thank you againfor coming on and sharing your
experiences and giving words ofencouragement to all of our
listeners.
We want all of you to be a partof our podcast series and share
your thoughts on topics youwant to hear about.
We'd love to hear your feedback.
Speaker 1 (38:01):
Yeah, and thanks again, Ro, because I know we
could have a part three and apart four probably, which not
off the table, but for now we'regoing to say thank you so much
for sharing what you've sharedtoday, and now you all know our
names, so you can bombard herFacebook Messenger.
Speaker 3 (38:21):
Thank you for having me, no problem.
Speaker 1 (38:23):
Please send your suggestions and comments to
either our email,louiebodyrollercoaster at
gmailcom, or on either Facebookpage, the Art Journey with Louie
Body Dementia or the Louie BodyRoller Coaster Podcast group,
and we really can't thank youall for your supporting us, even
though we don't get an episodeoff every week as we would
(38:43):
really like to, and thank youfor past and present supporters,
because it's you all what keepus going, even though life is
kicking us every now and then,we're doing our best to just
keep plugging away.
Speaker 2 (39:01):
Yeah, as always, we will continue to post the link
for the podcast each week foryou in our Facebook group, which
is Our Journey with Lewy BodyDementia, and on our Lewy Body
Dementia Roller Coaster podcastgroup, as well as many other
groups.
So thanks for joining us thisweek, folks.
Speaker 1 (39:19):
Until next week.
This is Linda.
Speaker 2 (39:21):
And Curry signing off .
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