April 29, 2025 • 27 mins
This week is part two of a three part series. We decided to ask participants form one of our weekly zoom support meting if we could record the meeting and share with you all so you can hear how a meeting goes, what people share and how they share suggestions with one another for certain symptoms. We hope you can hear the love the people in this group have for one another. We all need to lean on one another on this Lewy journey but also keep laughter in your life.
Listen in as Curry, Tom and Dorie, Ray, Dan and Effie, Liz and Sharon share their LBD experiences..A shout out to all of our supporters! We couldn't do this without all of ya'll. xo
ZoomA shout out to all of our supporters! We couldn't do this without all of ya'll. xo
Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
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We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 3 (00:11):
welcome back podcast family yes, welcome back y'all
just another quick shout out toeveryone for your continued
support and patience yeah, wewant to thank y'all for being so
patient and supportive of us aswe try to get these things out
every week um, we just want toremind all of our listeners
that's important for us.
Speaker 2 (00:31):
Uh, the medical community can hear from those
affected directly, so they hearfrom more than one person,
because the more we share, themore people are going to know,
and the less times people getthe nobody.
What question exactly?
Speaker 3 (00:45):
the Louis body?
What Question Exactly?
The more we share, the morewe're getting out there.
Yep, but, folks, I also want toremind y'all that if you'd like
to be a guest and share yourstory and hopefully helping
others, do contact Linda Zappulaor myself through Facebook
Messenger or through our ouremail, which is
louisbodyrollercoaster atgmailcom.
Speaker 2 (01:08):
We'd love to have you on the show yep, and if you
want to be a supporter, thereare links in the under the
announcements show you how youcan help us keep the podcast
going.
Car and I do not use any of thefunds for ourselves.
They're used to defray thecosts of editing, recording the
Zoom meetings and to help othersbehind the scenes as well.
(01:31):
So thank you all who havecontinued to support us.
Speaker 3 (01:34):
Yeah, and as a reminder, I just want to tell
you we're not giving medicaladvice, but we're just rather
sharing our open and honestfeelings and thoughts as we live
with Lewy body, dementia andfolks right now.
I always say now for a shoutout to some of our supporters.
Well, this week I decided justto thank everyone.
(02:04):
I thank everyone who's donatedto Patreon and all the ones who
have donated to GoFundMe.
Speaker 2 (02:07):
Without you all, we couldn't do this thing.
Welcome back as we continue toshare one of our monday support
meetings that we that we wereable to record.
We hope, after listening tothis three-part series, that you
might feel more comfortable tojump into one of the support
meetings via zoom.
And just a reminder we use thesame Zoom link for every meeting
(02:27):
and it can be found under thefeatured portion, under the
Louis Body RollercoasterFacebook page and the Our
Journey with Louis Body PlusMegan posts reminders with the
links as well.
Some have said they've even hadtheir spouse save it on their
desktop so it's easilyaccessible.
So let's continue with ourfriend Tammy as she shares how
(02:50):
she's feeling, and then Curryjumps in a little more with his
continuing symptoms.
Tammy, you want to weigh?
Speaker 4 (03:00):
in.
Okay, tom and Dory, I, I just Ilove you.
I think you are a couple thatseem to have found just where
you need to be with each other.
Um, I just I just hold you as a, as an example of where the
person with louis body should beand where the support should be
(03:23):
, and the fact that she'sheading up the support group too
but you're able to tolerateeach other and know when, most
of the time, know when you'vetolerated enough.
I just think you're a very goodexample of what we're talking
about.
Speaker 2 (03:42):
That's it no, yeah, I agree, like you two are and I,
doria and I had a long talk onthe phone last week, I think and
I'm like you two are so madefor each other like just you're
just perfect together and andbeing as I've seen you both and
we rented that house togetherit's the sweetest thing to watch
(04:03):
the two of you she has to wearsomething.
Speaker 5 (04:06):
Oh, she put something on, I don't know what it was,
and I said, oh, what are those?
And she goes don't you rememberyou?
You gave me, you gave them tome for christmas.
And I went oh god, I don'tremember that and I hadn't given
it, and she borrowed it fromthe person we were with and she
did that just to you know, Iknow.
And then, and I love that, Ilove that because it's like the
(04:29):
sense of humor.
Speaker 6 (04:29):
I love that I know he does and I wouldn't do it if I
didn't.
I would never do that tosomeone who would be upset
somebody would think that wasyeah I shit, but my friend asked
us to take our shoes off and Ididn't have socks, so she let me
borrow these big fluffy socks.
Speaker 1 (04:43):
Oh, that's what it was, and he looked at that and I
had just.
Speaker 6 (04:46):
I saw you and yeah, our friend, one of the friends,
was said that's really mean andit's not not dumb, it's not no I
love that it's funny.
Speaker 2 (04:58):
Yeah, humor is great yes, and I assume we were
talking about that.
Humor is you know what gets youthrough it.
Speaker 5 (05:09):
Yeah.
Speaker 6 (05:10):
You know it helps to joke about Louie, I think I mean
anything like that.
It helps to be able to to laughat it sometimes.
Speaker 5 (05:18):
Well, it was one of that all the time, but sometimes
one more thing I wanted to sayto Dan was what about a recovery
day?
When you're doing things likethat, plan ahead, not do too
much the day before and not toomuch the day after, and so you
can kind of like that's kind ofmy schedule.
Speaker 1 (05:38):
Well, we're definitely coming around to that
kind of approach.
I wouldn't say we've done it ona regular basis, but it's more
likely that after something likethe Celtics game, Effie and I
would look at each other andthink about what else we still
had to do that night and whatwas coming up in the next
(06:00):
morning and we were like, yeah,that was great, but I'm just not
sure if it's worth what we'regoing to pay.
Speaker 2 (06:10):
So maybe for half half of the game or do the
second half.
Speaker 1 (06:16):
Or in any case, knowing enough to think about it
in advance, and maybe you canreduce the number of stimulating
events that are coming up yeah,that's a good idea, but that's
amazing.
Speaker 5 (06:34):
That's a such a great idea to do that with friends,
you know facetime important tomaintain the social stuff, but I
mean anything throws us all sobadly.
I got food poisoning and itknocked me for a loop for a long
.
You know, it should have beenone day.
Speaker 6 (06:50):
Well, that came on the heels of losing our cat and
that threw you off.
Speaker 5 (06:54):
But it's just food poisoning, it just beats you up,
you know yeah.
Speaker 6 (07:01):
Yeah.
I try to pace it.
I try to pace things like we'regoing away, we're going to go
to um, visit my sister for her70th birthday, and normally I
would pack the day of if we wereleaving late enough or the day
before.
I want to pack at least twodays before so that there's not
commotion.
You know, I don't want thepacking commotion to come right
(07:23):
before leaving on the trip andI've gotten into the habit of
trying to do that.
Think ahead, like you know,space things out a lot more than
I would have before, and whenwe're there, if there's two
things in a day, we might onlydo one of them and we try to you
know, and I used to be likewhen we go to boston for um a
(07:46):
doctor's appointment, I wouldalways have tried to tack
something onto that, and I don'teven think about that anymore.
Speaker 5 (07:52):
It was one thing well , that's, that's good idea, well
kari says you can, you can livea good life, but it's it's
differently.
It's going to be a differentkind of life.
You know it's going to bedifferent.
It's going to be different, butit's still good, it's still
great, yep, but it's just goingto be different and it's going
to be uh, limitations right,which brings me to you car.
Speaker 2 (08:18):
Do you think, because you know you were telling us
all this stuff you were doingand what's going on in the house
.
And then you just do, you thinkmaybe all that was you were
doing and what's going on in thehouse.
And then you just do, you thinkmaybe all of that was just too
much and that threw you whereyou are now.
You just overstimulatedyourself for many days in a row.
Speaker 3 (08:34):
I don't know.
I was going to butt in while wego in and didn't.
Uh, y'all was talking about uhtrying to try and do things not,
not, not.
You don't do it, you're notdoing them right and your spouse
(08:56):
has to step in.
That's what's been going onwith me a lot.
There's a lot of stuff I can't,I haven't said right or haven't
done right, and then Linda hasto come in behind me, you know,
and either help me or help meget the hell out of the way.
She'll do it, but I don't knowif that's what's causing this
(09:16):
with Linda or not.
I really don't.
Speaker 2 (09:19):
Well, if that's the case, then you've just got to
give yourself some time downtime.
Speaker 3 (09:26):
Yeah.
Speaker 2 (09:27):
Like you said, ride it out, ride it out this time.
I'm tired of riding time.
Yeah, like you said, ride itout, ride it out this time.
Speaker 3 (09:31):
I'm tired of riding it yeah.
Speaker 2 (09:36):
What's the most troublesome to you or annoying
to you, is it the fatigue?
Speaker 3 (09:42):
Yeah, the fatigue and forgetting steps when I'm doing
something.
Speaker 2 (09:51):
Now did hospice come today already.
Speaker 3 (09:54):
Yeah.
Speaker 2 (09:55):
Did that tire you out more when they come?
Speaker 3 (09:58):
Yeah, it does, but I was able to get a nap in after
she left.
I got a 20-minute nap in.
Speaker 2 (10:05):
Okay, that's good.
Speaker 3 (10:08):
Yeah.
Speaker 2 (10:09):
Just try not.
I know it's hard when andyou're probably tired of people
saying just let your body restbecause it needs it.
Speaker 3 (10:17):
Yeah.
Speaker 2 (10:19):
You know, and hydrate .
Speaker 6 (10:25):
I'm looking at that.
Speaker 2 (10:27):
Hydrate?
That was the question I wasgonna.
That's good.
Did they test you for UTI?
Speaker 3 (10:35):
we check me uh Friday for UTI.
Speaker 2 (10:39):
Yeah, now, well, you know, you, you, you have UTIs,
like I know yeah.
Speaker 3 (10:47):
I really thought that's what was going on, but
test was negative.
Speaker 2 (10:52):
Well, test again today.
Speaker 3 (10:54):
Like my incontinence.
It's strange because usually Idon't know if I piss myself or
not.
It just happens, you know, andI'll find it later, when Linda
looks down at me and says youwet your britches.
You know, and I'll find itlater, linda looks down at me
and says wet your britches, youknow.
But this time I felt theurgency and the need to go and
(11:23):
it was really strange becauseit's hard to say you're
incontinent when you feel theneed and feel the urge to.
But I noticed that myincontinence had stopped pretty
much.
But now, here it is, back again.
Speaker 2 (11:46):
Yeah Well, pee on a strip again today and see.
You never know, maybe it, youknow, takes a bit for it to go
up by the time.
I'm gonna unmute you.
Nope, you gotta unmute yourself.
Sorry, I don't know.
Speaker 4 (11:58):
You're the only one I can't unmute um, I was just
interested because of what yousaid about pee on a strip.
I've been really confusedlately.
Just, I mean, I'm alwaysconfused, but more confused than
in a different way, like I was.
I don't know if I was dreamingor just sitting in the chair,
and I was.
I thought I was in this group,with a room with a group of
(12:22):
people, and they were the peopleI went to high school with.
And then you guys, so 50 yearsapart, and I was like why are we
all together?
And I thought that I mean thatcould never happen.
But yet it didn't seem thatbizarre, but it confused me.
Certain things are confusing meeasier than others.
(12:45):
And when we woke up I told Jay,I said the Zoom group was
talking about these strips thatyou can get at cbs and you take
your own um tests and every timeI go to the doctor she does a
um test on me.
It always says negative, butshe always has a hunch and she
(13:07):
sends it away and the next dayshe calls me and says, yeah, you
definitely have a UTI.
So I did that today and it waslike test again tomorrow, you
know kind of over, and I said,well, maybe that's like the same
thing that goes on with theother one, but there was
something else.
Somebody said that um that theyhad in the beginning, and then
(13:31):
it went away for a long time andit came back.
I can't think of what it was,but that just happened to me.
I'm finding a lot of my earlysymptoms are coming back.
Oh, this shadow man, tom'sshadow man.
Yes, everywhere Shadow woman,shadow man, but somebody is
(13:52):
always there.
I look up at the TV and she'sstanding there.
I look over there and he'sstanding there and occasionally
they move and when somethinggoes by on the floor I assume
it's a shadow dog or cat.
You know, it's like just likeit was in the very beginning,
before my hallucinations gotreally bad and I'm thinking I
hope that maybe that part won'tcome.
(14:14):
You know, maybe they won't getreally bad, but yeah, that's and
that was, you know, six yearsago since that happened.
So I'm like, why is this comingback?
I know this, it does come back,circles around, but it's really
kind of odd when it's a symptomthat was one of your first and
(14:34):
it comes back when you're thisfar in your disease has anybody
had the same thing where you hadit in the beginning, didn't
have it, and it came back, butthen it went away.
Speaker 2 (14:46):
That's what happened to you, corey.
Right, it has gone away.
And then, yeah, yeah, make sure.
It's so perplexing, thisdisease, like, yeah, you know,
come and go, and come and go,and you just don't know what's
making it do it well we're.
Speaker 4 (15:05):
We were late because we were out self-diagnosing.
I've had so much pain.
The pain has been awful and Ithink it's been the Parkinson's,
because just my hip joints andI mean it sounds like severe
arthritis.
It's in every joint, but thenit's also in the muscles, so
it's like walking in the morningis almost unbearable.
(15:28):
It's like walking in themorning is almost unbearable.
And so the palliative caredoctor did one prescription and
that didn't touch it and um, andshe did another one and that
was like so then she raised itin on that and that one works
pretty well.
So so I said to him when itwent wrong, when I stopped
(15:52):
because I was really intoexercising and I have been for
years.
So when it went wrong I stoppedexercising because it hurt just
to walk.
And are you all waving to me?
Yeah, Okay.
Speaker 2 (16:16):
He had to jump off.
Speaker 4 (16:18):
Yeah, okay, I had.
I thought maybe it's not.
Maybe the sudden stopping andworking out is what's wrong with
me, is why my body's hurting sobad.
So today we, um, before gettingon here, we went over the mall
(16:39):
and we just did one circle, butI did feel a little.
My legs were a little weak andlike they would have been if I
had stopped exercising for aweek.
Um, I don't think it was that,because this pain has been a
little more harsh.
So I think it was just painfrom Parkinson's or something.
(16:59):
I don't think it was.
I don't think jumping rightback into a full exercise
schedule would have helped atall.
I don't know if I'm making anysense, but anyway,
self-diagnosing.
So, but I think we came up withan answer.
Speaker 3 (17:18):
Sometimes that's what you got to do.
Speaker 2 (17:20):
Yeah, it is like I said.
It's so perplexing this disease, and you're just why what might
work Now, sorry, you have a lotof the I'm sorry.
Neuropathy pain, right?
Yes, yeah, is that what youthink?
Speaker 4 (17:39):
yours is like nerve kind of pain, tammy, or but then
when it feels like it's in yourbones, it's like I can feel my
hip bones and I can when I walk,I feel like I can feel like you
see the pictures of theskeletons and I feel like I can
(18:00):
see that flat part and thatcurved part and how much each
part of that hurts.
So I mean, it's all in my heador it actually is, but
neuropathy is definitely bad.
But we're using the oils nowand putting on my feet and that
helps a lot.
And I'm using the TENS unitmore than I was.
(18:25):
I got away from that and Ishould have still been using
that.
So that helps and I'm on Lyrica.
I don't think there's anythingelse I can do for my neuropathy.
I think I've gotten as far withthat as possible, but it
bothers me a lot, but it bothersme least not as much as
(18:47):
hallucinations and shadow peopleand all of that stuff.
So I don't know I was goingsomewhere with that, but I
forget.
Okay.
Speaker 2 (18:58):
All right, that's what.
Like you, your pain goes deeper.
It's not just neuropathy, right, right?
Yeah, do you have similarexperiences that Tammy's gone
through, like that pain, thebone pain?
Yeah, do you have similarexperiences that?
Speaker 3 (19:13):
Tammy's gone through Like that pain, the bone pain.
Speaker 2 (19:14):
Yeah, yeah.
Speaker 3 (19:15):
That's what I.
Speaker 2 (19:16):
Now is that?
Have you always had that typeof pain, or is that now new,
with what's going on with younow?
Speaker 3 (19:27):
You talking to Tammy?
No, I'm talking to you.
Oh no, I've always had it yeah,see, I haven't.
Speaker 4 (19:34):
I started out with.
The first thing I was diagnosedwith was a neuropathy and it
was in my feet and my hands andit's just progressively gotten
worse, but it's never been towhere I felt it in the bones.
It's like it's taking over mybody and that's what's really
kind of scary with it, and it'sin my hands and going up my arms
(19:55):
and I'm thinking, oh my gosh,pretty soon everything's going
to hurt when I move it.
But and then you don't know.
You don't know if that's theway you're going to spend the
next year, or I don't know.
At least I found a painmedication that works.
Um, when dr spock lets me haveit, he'll.
(20:16):
You know I have to have acertain amount of pain before he
thinks I deserve one.
He's just he doesn't want me toget addicted to it.
Speaker 2 (20:24):
I guess I'm not gonna even know.
It's not really dr spock, is itno?
Speaker 4 (20:32):
anybody else like what, dr jehu?
Speaker 3 (20:36):
and that's one thing with me.
They took me off, uh, uh, tookme off morphine just the other
day.
Why?
Why, trying to see if that'swhat's See?
I overdosed again or whatever,and they don't know if it was
the morphine that done it.
But they said my body is notgetting rid of the.
Speaker 2 (21:04):
What you take yeah.
Speaker 3 (21:07):
It's not getting rid of it.
My body's not touching the MMetabolism.
Speaker 4 (21:16):
Metabolizing.
Speaker 3 (21:17):
Yeah, it's not metabolizing my meds.
So they took me off themorphine, tried to see if maybe
it's the morphine that wascausing it or something else.
Speaker 2 (21:30):
So that's yeah, days ago, but so how?
Couple like you didn't,intentionally, you didn't like
you did last time you took med.
It's just they're thinkingbecause it's not your body's not
metabolizing it, yeah, it.
Speaker 3 (21:50):
Which is what they thought last time too.
The first time I blame that onme, yeah.
The second time, and this time,no.
Speaker 2 (22:02):
So two days you've been off of it, how is your body
feeling?
Just copy.
Speaker 1 (22:07):
That same.
Speaker 4 (22:08):
Oh, did they lower it Becauseine's so so high?
I wouldn't think you could justjump off no, I just jumped
right off, wow oh you.
Speaker 2 (22:19):
your wife said this morning when I texted her that
you, you are doing better thanyou were, yes, this weekend.
So maybe, maybe it was themorphine that, yeah, how often
do you take that a day?
I've only taken morphine atnight and then for breakthrough
(22:42):
pain during the day.
Okay, well, fingers crossed.
That's what it was.
Speaker 3 (22:45):
Yeah.
Speaker 4 (22:48):
But again I have to tell you guys something.
This is a little off character,but then I'll shut up and get
off.
I mean I'll mute myself.
You know how.
I have my jelly beans to keepme awake and it's like a joke
between Jehu and Linda and somepeople.
I was doing that seminar on LBDthe other day that I had
(23:17):
brought up Megan and I hadposted something about it anyway
, and webinar that's what it'scalled, and I'm thinking I hope
these people can't see me.
And Jay was looking at me.
He said they can't see you,they can't see you, they can't
see anybody.
Speaker 6 (23:39):
I said I hope so, and oh and, oh, my gosh, did I
really hope so when I fellasleep and I had two jelly beans
on my chest.
Speaker 2 (23:45):
They had fallen out of my mouth, my mouth.
So the webinar didn't keep yourattention, so I'm gonna have to
sugar it up a little bit.
But if anybody doesn't know,when she first told us about the
jelly beans and then how sheeats them, and then she was like
, oh, I'm out of jelly beans.
So I texted her husband I'mlike, tell me the jelly beans,
get her some more.
So he came in the room withsome more.
Speaker 4 (24:07):
That's why she's always falling asleep.
I was, and it was just soembarrassing and then they
started keeping me awake.
But now, now they didn't and Ihope.
I hope those people couldn'tsee me, that nobody could see me
.
Speaker 2 (24:19):
Yeah on webinars.
They really can't see thepeople unless you know.
Okay, they can't see yourself.
Anyway, that's, that's funny,but it's not funny.
But you have to laugh, like wesaid, you just gotta laugh, you
know yeah you're going throughthat.
Speaker 4 (24:37):
I don't even know what woke me up, because I'm
like I wake up with my mouthwide open and I look down and
there's jelly beans did he takea picture of the wet jelly beans
on your shirt?
No, he wasn't upstairs.
He didn't even know about it.
Dang it.
I've woken up with them in myhair before with you guys, but
(25:00):
I'm hoping I'm past that.
I don't know, I guess itdepends on what I get for Easter
, but the sugar switch waskeeping me awake but it didn't
work on this webinar.
But hopefully, who knows?
Speaker 2 (25:18):
Yeah, who knows, we're going to stop here for
this week.
We hope you're enjoying hearinghow a support meeting can bring
a bunch of people fromdifferent parts of the country
together to form this new Louisfamily.
Speaker 3 (25:36):
Okay, folks, you know that's all we have time for
this week.
Remember, you can email us withsuggestions on what you would
like us to discuss on a futureepisode, or you can ask any
questions you have and we willsure do our best to help and get
the answers you want.
And also, if you want, to anyquestions you have and we will
sure do our best to help and getthe answers you want.
And also, if you want to be asupporter of the podcast, check
out the links in the episodenotes below for the two ways you
(25:59):
can support this podcast.
And remember, linda and I donot use any of your support
funds for ourselves.
It all goes towards the podcastexpenses and also we are
continuing to work on theadvocacy part of our mission.
So thanks to those who arealready our supporters and
thanks to any of you listening,should you decide to become a
supporter.
Speaker 2 (26:19):
And remember that we post the links to the podcasts
in both the Lewy Body RollerCoaster podcast Facebook page
and our journey with Lewy Bodypage.
And if you're interested inhelping as an advocate or can
lend lead sorry, lead a supportgroup for those caring for a
parent please email us atlewybodyrollercoaster at
gmailcom.
(26:39):
The more people we reach out to, the more people we can help.
And just remember we are doingthis podcast for all of us and
we appreciate that you tune ineach week.
Speaker 3 (26:49):
Yes, susan, susan, we want to.
We want to thank you for comingback and joining us this week
also.
So thanks for joining us, folks.
Speaker 2 (26:56):
Until next week.
Speaker 3 (26:58):
This is Linda and Curry signing off.
welcome back podcast family yes, welcome back y'all
just another quick shout out toeveryone for your continued
support and patience yeah, wewant to thank y'all for being so
patient and supportive of us aswe try to get these things out
every week um, we just want toremind all of our listeners
that's important for us.
Speaker 2 (00:31):
Uh, the medical community can hear from those
affected directly, so they hearfrom more than one person,
because the more we share, themore people are going to know,
and the less times people getthe nobody.
What question exactly?
Speaker 3 (00:45):
the Louis body?
What Question Exactly?
The more we share, the morewe're getting out there.
Yep, but, folks, I also want toremind y'all that if you'd like
to be a guest and share yourstory and hopefully helping
others, do contact Linda Zappulaor myself through Facebook
Messenger or through our ouremail, which is
louisbodyrollercoaster atgmailcom.
Speaker 2 (01:08):
We'd love to have you on the show yep, and if you
want to be a supporter, thereare links in the under the
announcements show you how youcan help us keep the podcast
going.
Car and I do not use any of thefunds for ourselves.
They're used to defray thecosts of editing, recording the
Zoom meetings and to help othersbehind the scenes as well.
(01:31):
So thank you all who havecontinued to support us.
Speaker 3 (01:34):
Yeah, and as a reminder, I just want to tell
you we're not giving medicaladvice, but we're just rather
sharing our open and honestfeelings and thoughts as we live
with Lewy body, dementia andfolks right now.
I always say now for a shoutout to some of our supporters.
Well, this week I decided justto thank everyone.
(02:04):
I thank everyone who's donatedto Patreon and all the ones who
have donated to GoFundMe.
Speaker 2 (02:07):
Without you all, we couldn't do this thing.
Welcome back as we continue toshare one of our monday support
meetings that we that we wereable to record.
We hope, after listening tothis three-part series, that you
might feel more comfortable tojump into one of the support
meetings via zoom.
And just a reminder we use thesame Zoom link for every meeting
(02:27):
and it can be found under thefeatured portion, under the
Louis Body RollercoasterFacebook page and the Our
Journey with Louis Body PlusMegan posts reminders with the
links as well.
Some have said they've even hadtheir spouse save it on their
desktop so it's easilyaccessible.
So let's continue with ourfriend Tammy as she shares how
(02:50):
she's feeling, and then Curryjumps in a little more with his
continuing symptoms.
Tammy, you want to weigh?
Speaker 4 (03:00):
in.
Okay, tom and Dory, I, I just Ilove you.
I think you are a couple thatseem to have found just where
you need to be with each other.
Um, I just I just hold you as a, as an example of where the
person with louis body should beand where the support should be
(03:23):
, and the fact that she'sheading up the support group too
but you're able to tolerateeach other and know when, most
of the time, know when you'vetolerated enough.
I just think you're a very goodexample of what we're talking
about.
Speaker 2 (03:42):
That's it no, yeah, I agree, like you two are and I,
doria and I had a long talk onthe phone last week, I think and
I'm like you two are so madefor each other like just you're
just perfect together and andbeing as I've seen you both and
we rented that house togetherit's the sweetest thing to watch
(04:03):
the two of you she has to wearsomething.
Speaker 5 (04:06):
Oh, she put something on, I don't know what it was,
and I said, oh, what are those?
And she goes don't you rememberyou?
You gave me, you gave them tome for christmas.
And I went oh god, I don'tremember that and I hadn't given
it, and she borrowed it fromthe person we were with and she
did that just to you know, Iknow.
And then, and I love that, Ilove that because it's like the
(04:29):
sense of humor.
Speaker 6 (04:29):
I love that I know he does and I wouldn't do it if I
didn't.
I would never do that tosomeone who would be upset
somebody would think that wasyeah I shit, but my friend asked
us to take our shoes off and Ididn't have socks, so she let me
borrow these big fluffy socks.
Speaker 1 (04:43):
Oh, that's what it was, and he looked at that and I
had just.
Speaker 6 (04:46):
I saw you and yeah, our friend, one of the friends,
was said that's really mean andit's not not dumb, it's not no I
love that it's funny.
Speaker 2 (04:58):
Yeah, humor is great yes, and I assume we were
talking about that.
Humor is you know what gets youthrough it.
Speaker 5 (05:09):
Yeah.
Speaker 6 (05:10):
You know it helps to joke about Louie, I think I mean
anything like that.
It helps to be able to to laughat it sometimes.
Speaker 5 (05:18):
Well, it was one of that all the time, but sometimes
one more thing I wanted to sayto Dan was what about a recovery
day?
When you're doing things likethat, plan ahead, not do too
much the day before and not toomuch the day after, and so you
can kind of like that's kind ofmy schedule.
Speaker 1 (05:38):
Well, we're definitely coming around to that
kind of approach.
I wouldn't say we've done it ona regular basis, but it's more
likely that after something likethe Celtics game, Effie and I
would look at each other andthink about what else we still
had to do that night and whatwas coming up in the next
(06:00):
morning and we were like, yeah,that was great, but I'm just not
sure if it's worth what we'regoing to pay.
Speaker 2 (06:10):
So maybe for half half of the game or do the
second half.
Speaker 1 (06:16):
Or in any case, knowing enough to think about it
in advance, and maybe you canreduce the number of stimulating
events that are coming up yeah,that's a good idea, but that's
amazing.
Speaker 5 (06:34):
That's a such a great idea to do that with friends,
you know facetime important tomaintain the social stuff, but I
mean anything throws us all sobadly.
I got food poisoning and itknocked me for a loop for a long
.
You know, it should have beenone day.
Speaker 6 (06:50):
Well, that came on the heels of losing our cat and
that threw you off.
Speaker 5 (06:54):
But it's just food poisoning, it just beats you up,
you know yeah.
Speaker 6 (07:01):
Yeah.
I try to pace it.
I try to pace things like we'regoing away, we're going to go
to um, visit my sister for her70th birthday, and normally I
would pack the day of if we wereleaving late enough or the day
before.
I want to pack at least twodays before so that there's not
commotion.
You know, I don't want thepacking commotion to come right
(07:23):
before leaving on the trip andI've gotten into the habit of
trying to do that.
Think ahead, like you know,space things out a lot more than
I would have before, and whenwe're there, if there's two
things in a day, we might onlydo one of them and we try to you
know, and I used to be likewhen we go to boston for um a
(07:46):
doctor's appointment, I wouldalways have tried to tack
something onto that, and I don'teven think about that anymore.
Speaker 5 (07:52):
It was one thing well , that's, that's good idea, well
kari says you can, you can livea good life, but it's it's
differently.
It's going to be a differentkind of life.
You know it's going to bedifferent.
It's going to be different, butit's still good, it's still
great, yep, but it's just goingto be different and it's going
to be uh, limitations right,which brings me to you car.
Speaker 2 (08:18):
Do you think, because you know you were telling us
all this stuff you were doingand what's going on in the house
.
And then you just do, you thinkmaybe all that was you were
doing and what's going on in thehouse.
And then you just do, you thinkmaybe all of that was just too
much and that threw you whereyou are now.
You just overstimulatedyourself for many days in a row.
Speaker 3 (08:34):
I don't know.
I was going to butt in while wego in and didn't.
Uh, y'all was talking about uhtrying to try and do things not,
not, not.
You don't do it, you're notdoing them right and your spouse
(08:56):
has to step in.
That's what's been going onwith me a lot.
There's a lot of stuff I can't,I haven't said right or haven't
done right, and then Linda hasto come in behind me, you know,
and either help me or help meget the hell out of the way.
She'll do it, but I don't knowif that's what's causing this
(09:16):
with Linda or not.
I really don't.
Speaker 2 (09:19):
Well, if that's the case, then you've just got to
give yourself some time downtime.
Speaker 3 (09:26):
Yeah.
Speaker 2 (09:27):
Like you said, ride it out, ride it out this time.
I'm tired of riding time.
Yeah, like you said, ride itout, ride it out this time.
Speaker 3 (09:31):
I'm tired of riding it yeah.
Speaker 2 (09:36):
What's the most troublesome to you or annoying
to you, is it the fatigue?
Speaker 3 (09:42):
Yeah, the fatigue and forgetting steps when I'm doing
something.
Speaker 2 (09:51):
Now did hospice come today already.
Speaker 3 (09:54):
Yeah.
Speaker 2 (09:55):
Did that tire you out more when they come?
Speaker 3 (09:58):
Yeah, it does, but I was able to get a nap in after
she left.
I got a 20-minute nap in.
Speaker 2 (10:05):
Okay, that's good.
Speaker 3 (10:08):
Yeah.
Speaker 2 (10:09):
Just try not.
I know it's hard when andyou're probably tired of people
saying just let your body restbecause it needs it.
Speaker 3 (10:17):
Yeah.
Speaker 2 (10:19):
You know, and hydrate .
Speaker 6 (10:25):
I'm looking at that.
Speaker 2 (10:27):
Hydrate?
That was the question I wasgonna.
That's good.
Did they test you for UTI?
Speaker 3 (10:35):
we check me uh Friday for UTI.
Speaker 2 (10:39):
Yeah, now, well, you know, you, you, you have UTIs,
like I know yeah.
Speaker 3 (10:47):
I really thought that's what was going on, but
test was negative.
Speaker 2 (10:52):
Well, test again today.
Speaker 3 (10:54):
Like my incontinence.
It's strange because usually Idon't know if I piss myself or
not.
It just happens, you know, andI'll find it later, when Linda
looks down at me and says youwet your britches.
You know, and I'll find itlater, linda looks down at me
and says wet your britches, youknow.
But this time I felt theurgency and the need to go and
(11:23):
it was really strange becauseit's hard to say you're
incontinent when you feel theneed and feel the urge to.
But I noticed that myincontinence had stopped pretty
much.
But now, here it is, back again.
Speaker 2 (11:46):
Yeah Well, pee on a strip again today and see.
You never know, maybe it, youknow, takes a bit for it to go
up by the time.
I'm gonna unmute you.
Nope, you gotta unmute yourself.
Sorry, I don't know.
Speaker 4 (11:58):
You're the only one I can't unmute um, I was just
interested because of what yousaid about pee on a strip.
I've been really confusedlately.
Just, I mean, I'm alwaysconfused, but more confused than
in a different way, like I was.
I don't know if I was dreamingor just sitting in the chair,
and I was.
I thought I was in this group,with a room with a group of
(12:22):
people, and they were the peopleI went to high school with.
And then you guys, so 50 yearsapart, and I was like why are we
all together?
And I thought that I mean thatcould never happen.
But yet it didn't seem thatbizarre, but it confused me.
Certain things are confusing meeasier than others.
(12:45):
And when we woke up I told Jay,I said the Zoom group was
talking about these strips thatyou can get at cbs and you take
your own um tests and every timeI go to the doctor she does a
um test on me.
It always says negative, butshe always has a hunch and she
(13:07):
sends it away and the next dayshe calls me and says, yeah, you
definitely have a UTI.
So I did that today and it waslike test again tomorrow, you
know kind of over, and I said,well, maybe that's like the same
thing that goes on with theother one, but there was
something else.
Somebody said that um that theyhad in the beginning, and then
(13:31):
it went away for a long time andit came back.
I can't think of what it was,but that just happened to me.
I'm finding a lot of my earlysymptoms are coming back.
Oh, this shadow man, tom'sshadow man.
Yes, everywhere Shadow woman,shadow man, but somebody is
(13:52):
always there.
I look up at the TV and she'sstanding there.
I look over there and he'sstanding there and occasionally
they move and when somethinggoes by on the floor I assume
it's a shadow dog or cat.
You know, it's like just likeit was in the very beginning,
before my hallucinations gotreally bad and I'm thinking I
hope that maybe that part won'tcome.
(14:14):
You know, maybe they won't getreally bad, but yeah, that's and
that was, you know, six yearsago since that happened.
So I'm like, why is this comingback?
I know this, it does come back,circles around, but it's really
kind of odd when it's a symptomthat was one of your first and
(14:34):
it comes back when you're thisfar in your disease has anybody
had the same thing where you hadit in the beginning, didn't
have it, and it came back, butthen it went away.
Speaker 2 (14:46):
That's what happened to you, corey.
Right, it has gone away.
And then, yeah, yeah, make sure.
It's so perplexing, thisdisease, like, yeah, you know,
come and go, and come and go,and you just don't know what's
making it do it well we're.
Speaker 4 (15:05):
We were late because we were out self-diagnosing.
I've had so much pain.
The pain has been awful and Ithink it's been the Parkinson's,
because just my hip joints andI mean it sounds like severe
arthritis.
It's in every joint, but thenit's also in the muscles, so
it's like walking in the morningis almost unbearable.
(15:28):
It's like walking in themorning is almost unbearable.
And so the palliative caredoctor did one prescription and
that didn't touch it and um, andshe did another one and that
was like so then she raised itin on that and that one works
pretty well.
So so I said to him when itwent wrong, when I stopped
(15:52):
because I was really intoexercising and I have been for
years.
So when it went wrong I stoppedexercising because it hurt just
to walk.
And are you all waving to me?
Yeah, Okay.
Speaker 2 (16:16):
He had to jump off.
Speaker 4 (16:18):
Yeah, okay, I had.
I thought maybe it's not.
Maybe the sudden stopping andworking out is what's wrong with
me, is why my body's hurting sobad.
So today we, um, before gettingon here, we went over the mall
(16:39):
and we just did one circle, butI did feel a little.
My legs were a little weak andlike they would have been if I
had stopped exercising for aweek.
Um, I don't think it was that,because this pain has been a
little more harsh.
So I think it was just painfrom Parkinson's or something.
(16:59):
I don't think it was.
I don't think jumping rightback into a full exercise
schedule would have helped atall.
I don't know if I'm making anysense, but anyway,
self-diagnosing.
So, but I think we came up withan answer.
Speaker 3 (17:18):
Sometimes that's what you got to do.
Speaker 2 (17:20):
Yeah, it is like I said.
It's so perplexing this disease, and you're just why what might
work Now, sorry, you have a lotof the I'm sorry.
Neuropathy pain, right?
Yes, yeah, is that what youthink?
Speaker 4 (17:39):
yours is like nerve kind of pain, tammy, or but then
when it feels like it's in yourbones, it's like I can feel my
hip bones and I can when I walk,I feel like I can feel like you
see the pictures of theskeletons and I feel like I can
(18:00):
see that flat part and thatcurved part and how much each
part of that hurts.
So I mean, it's all in my heador it actually is, but
neuropathy is definitely bad.
But we're using the oils nowand putting on my feet and that
helps a lot.
And I'm using the TENS unitmore than I was.
(18:25):
I got away from that and Ishould have still been using
that.
So that helps and I'm on Lyrica.
I don't think there's anythingelse I can do for my neuropathy.
I think I've gotten as far withthat as possible, but it
bothers me a lot, but it bothersme least not as much as
(18:47):
hallucinations and shadow peopleand all of that stuff.
So I don't know I was goingsomewhere with that, but I
forget.
Okay.
Speaker 2 (18:58):
All right, that's what.
Like you, your pain goes deeper.
It's not just neuropathy, right, right?
Yeah, do you have similarexperiences that Tammy's gone
through, like that pain, thebone pain?
Yeah, do you have similarexperiences that?
Speaker 3 (19:13):
Tammy's gone through Like that pain, the bone pain.
Speaker 2 (19:14):
Yeah, yeah.
Speaker 3 (19:15):
That's what I.
Speaker 2 (19:16):
Now is that?
Have you always had that typeof pain, or is that now new,
with what's going on with younow?
Speaker 3 (19:27):
You talking to Tammy?
No, I'm talking to you.
Oh no, I've always had it yeah,see, I haven't.
Speaker 4 (19:34):
I started out with.
The first thing I was diagnosedwith was a neuropathy and it
was in my feet and my hands andit's just progressively gotten
worse, but it's never been towhere I felt it in the bones.
It's like it's taking over mybody and that's what's really
kind of scary with it, and it'sin my hands and going up my arms
(19:55):
and I'm thinking, oh my gosh,pretty soon everything's going
to hurt when I move it.
But and then you don't know.
You don't know if that's theway you're going to spend the
next year, or I don't know.
At least I found a painmedication that works.
Um, when dr spock lets me haveit, he'll.
(20:16):
You know I have to have acertain amount of pain before he
thinks I deserve one.
He's just he doesn't want me toget addicted to it.
Speaker 2 (20:24):
I guess I'm not gonna even know.
It's not really dr spock, is itno?
Speaker 4 (20:32):
anybody else like what, dr jehu?
Speaker 3 (20:36):
and that's one thing with me.
They took me off, uh, uh, tookme off morphine just the other
day.
Why?
Why, trying to see if that'swhat's See?
I overdosed again or whatever,and they don't know if it was
the morphine that done it.
But they said my body is notgetting rid of the.
Speaker 2 (21:04):
What you take yeah.
Speaker 3 (21:07):
It's not getting rid of it.
My body's not touching the MMetabolism.
Speaker 4 (21:16):
Metabolizing.
Speaker 3 (21:17):
Yeah, it's not metabolizing my meds.
So they took me off themorphine, tried to see if maybe
it's the morphine that wascausing it or something else.
Speaker 2 (21:30):
So that's yeah, days ago, but so how?
Couple like you didn't,intentionally, you didn't like
you did last time you took med.
It's just they're thinkingbecause it's not your body's not
metabolizing it, yeah, it.
Speaker 3 (21:50):
Which is what they thought last time too.
The first time I blame that onme, yeah.
The second time, and this time,no.
Speaker 2 (22:02):
So two days you've been off of it, how is your body
feeling?
Just copy.
Speaker 1 (22:07):
That same.
Speaker 4 (22:08):
Oh, did they lower it Becauseine's so so high?
I wouldn't think you could justjump off no, I just jumped
right off, wow oh you.
Speaker 2 (22:19):
your wife said this morning when I texted her that
you, you are doing better thanyou were, yes, this weekend.
So maybe, maybe it was themorphine that, yeah, how often
do you take that a day?
I've only taken morphine atnight and then for breakthrough
(22:42):
pain during the day.
Okay, well, fingers crossed.
That's what it was.
Speaker 3 (22:45):
Yeah.
Speaker 4 (22:48):
But again I have to tell you guys something.
This is a little off character,but then I'll shut up and get
off.
I mean I'll mute myself.
You know how.
I have my jelly beans to keepme awake and it's like a joke
between Jehu and Linda and somepeople.
I was doing that seminar on LBDthe other day that I had
(23:17):
brought up Megan and I hadposted something about it anyway
, and webinar that's what it'scalled, and I'm thinking I hope
these people can't see me.
And Jay was looking at me.
He said they can't see you,they can't see you, they can't
see anybody.
Speaker 6 (23:39):
I said I hope so, and oh and, oh, my gosh, did I
really hope so when I fellasleep and I had two jelly beans
on my chest.
Speaker 2 (23:45):
They had fallen out of my mouth, my mouth.
So the webinar didn't keep yourattention, so I'm gonna have to
sugar it up a little bit.
But if anybody doesn't know,when she first told us about the
jelly beans and then how sheeats them, and then she was like
, oh, I'm out of jelly beans.
So I texted her husband I'mlike, tell me the jelly beans,
get her some more.
So he came in the room withsome more.
Speaker 4 (24:07):
That's why she's always falling asleep.
I was, and it was just soembarrassing and then they
started keeping me awake.
But now, now they didn't and Ihope.
I hope those people couldn'tsee me, that nobody could see me
.
Speaker 2 (24:19):
Yeah on webinars.
They really can't see thepeople unless you know.
Okay, they can't see yourself.
Anyway, that's, that's funny,but it's not funny.
But you have to laugh, like wesaid, you just gotta laugh, you
know yeah you're going throughthat.
Speaker 4 (24:37):
I don't even know what woke me up, because I'm
like I wake up with my mouthwide open and I look down and
there's jelly beans did he takea picture of the wet jelly beans
on your shirt?
No, he wasn't upstairs.
He didn't even know about it.
Dang it.
I've woken up with them in myhair before with you guys, but
(25:00):
I'm hoping I'm past that.
I don't know, I guess itdepends on what I get for Easter
, but the sugar switch waskeeping me awake but it didn't
work on this webinar.
But hopefully, who knows?
Speaker 2 (25:18):
Yeah, who knows, we're going to stop here for
this week.
We hope you're enjoying hearinghow a support meeting can bring
a bunch of people fromdifferent parts of the country
together to form this new Louisfamily.
Speaker 3 (25:36):
Okay, folks, you know that's all we have time for
this week.
Remember, you can email us withsuggestions on what you would
like us to discuss on a futureepisode, or you can ask any
questions you have and we willsure do our best to help and get
the answers you want.
And also, if you want, to anyquestions you have and we will
sure do our best to help and getthe answers you want.
And also, if you want to be asupporter of the podcast, check
out the links in the episodenotes below for the two ways you
(25:59):
can support this podcast.
And remember, linda and I donot use any of your support
funds for ourselves.
It all goes towards the podcastexpenses and also we are
continuing to work on theadvocacy part of our mission.
So thanks to those who arealready our supporters and
thanks to any of you listening,should you decide to become a
supporter.
Speaker 2 (26:19):
And remember that we post the links to the podcasts
in both the Lewy Body RollerCoaster podcast Facebook page
and our journey with Lewy Bodypage.
And if you're interested inhelping as an advocate or can
lend lead sorry, lead a supportgroup for those caring for a
parent please email us atlewybodyrollercoaster at
gmailcom.
(26:39):
The more people we reach out to, the more people we can help.
And just remember we are doingthis podcast for all of us and
we appreciate that you tune ineach week.
Speaker 3 (26:49):
Yes, susan, susan, we want to.
We want to thank you for comingback and joining us this week
also.
So thanks for joining us, folks.
Speaker 2 (26:56):
Until next week.
Speaker 3 (26:58):
This is Linda and Curry signing off.
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