May 6, 2025 • 22 mins
This week is part three 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
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https://patreon.com/lewybodyrollercoasterpodcast
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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.
(01:58):
I thank everyone who's donatedto Patreon and all the ones who
have donated to GoFundMe.
Without you all, we couldn't dothis thing.
Speaker 2 (02:04):
Let's continue with the last part of this three-part
recording, as Curry continuesto share how Louie is wreaking
havoc on him right now.
How are you, joni and Gary?
How are you guys doing?
Speaker 4 (02:15):
The only thing I had recently was the.
Speaker 2 (02:18):
I had a burning pain you mean on a what?
Speaker 1 (02:24):
It felt like burning painful.
It felt so painful.
It felt like you.
Painful, so painful.
It felt like doing an Amazonfire.
Speaker 2 (02:30):
Yeah, like the nerve pain, burning nerve pain.
Speaker 1 (02:37):
It hurt.
Believe it or not, it was acrazy icy heart.
I see her Went away.
The next two days it up Lessand less and less.
Friday it was, uh, a little bitleft over, just standing In the
(03:01):
end by the elbow.
Speaker 4 (03:06):
You do one squat and it just turns so bad I just
couldn't do it.
Speaker 2 (03:13):
Yeah, well it's good that you got it away with, just
the icy hot.
You didn't have to takemedicine for it.
I think most people takegabapentin for that right Curry,
Is that what you're takinggabapentin for?
Speaker 3 (03:27):
Yeah, I used to take it.
They took me off gabapentinReally.
Speaker 2 (03:33):
Because you were on morphine.
Speaker 3 (03:35):
Yeah.
Speaker 2 (03:37):
Okay, so it's only been two days.
Do you feel the nerve paincoming back?
Speaker 3 (03:42):
Oh yeah, I mean, I still have the pain.
Speaker 2 (03:47):
Even on those other meds you still had the pain.
You just maybe wasn't strong,yeah, but now that you've been
off of them, yeah, see, I'vebeen off gabapentin for probably
four months.
Hmm, I didn't realize that.
Speaker 3 (04:05):
Yeah.
Speaker 2 (04:06):
How long have you been on morphine?
Four months.
Speaker 3 (04:09):
I've been on morphine since April.
No.
Speaker 2 (04:14):
No.
Speaker 5 (04:14):
I haven't no.
Speaker 3 (04:17):
I've been on morphine ?
Probably no.
I've been on morphine a longtime About a year, probably no.
I think I'm working a long timeabout a year is that how long
you've had hospice already?
Speaker 2 (04:31):
yeah, in April it'll be a year crazy anybody else
just like time is just.
Yeah.
I'm like what my alarm goes offat 11 15.
I'm like it's Monday again.
It was just Monday, yeah.
Yeah, I'm like what my alarmgoes off at 11.15.
I'm like it's Monday again.
It was just Monday, yeah.
Huh.
Well, I hope them taking youoff all that, it's just taking
(04:55):
it.
And you were in the hospitalfor a bit and it took you a bit
the last time that youaccidentally self-medicated
yourself too much.
Yeah, took you a minute or twoto get through.
Like maybe almost a week rightto recover from that.
Yeah, it was yeah, so rememberthat.
And when you're gettingfrustrated right now, that
(05:16):
that's what it is.
Your body just needs a longtime to get it out of your
system, you know yeah yeah, Itry to remember all that stuff.
Speaker 3 (05:28):
It's just hard to hard to stay positive.
Speaker 2 (05:35):
Yeah, waiting for the it to pass yeah but remember
that you've been through thismany time oh yeah, it bought
them and we're like oh, is hegonna come back?
And here he's coming back up.
But remember that you've beenthrough this many times oh yeah,
it bought him and we're like oh, is he going to come back?
And here he's coming back up.
So yeah.
Take more than this to keep youdown.
You just have to be patient.
(05:57):
I hope so you all hear me sayit.
So when he doesn't follow ourrules, yeah, I think you do look
better than you did Friday, nooffense.
Speaker 3 (06:10):
No, no, none taken.
Yeah, you looked pretty wipedout on Friday, for sure, friday,
I was pretty wiped out.
Speaker 2 (06:20):
Yeah, you didn't remember going to the meeting
Thursday or Friday.
Speaker 3 (06:23):
No, I don't.
Speaker 2 (06:25):
No, I wish we knew you wouldn't remember, because
then we could get some goodjuicy stuff out of you Secrets
or something.
Right, you need to have yourwife call about that cough.
Don't let it linger, becausethat could turn into pneumonia
If you don't take that out ofyour chest the hospice is pretty
(06:47):
much staying on top of it.
Yeah, well, they should havegiven you mucinex or something,
though.
Speaker 1 (06:52):
Yeah.
Speaker 2 (06:53):
You know they'll come in tomorrow.
Yeah, I'll be texting your wifelater and telling on you.
That's what we do.
Any updates with you, Sharon?
Speaker 5 (07:08):
Well, Jack has been exposed to COVID quite a bit.
His whole memory care unit istaking their turns.
His suite mate started it withpneumonia about three weeks ago
and then he came down.
The guy came down with COVIDlast week and I got a call I
(07:34):
think it was Friday saying thatJack now had it and he actually
has been staying in his room,which is very unusual because
he's usually peddling aroundeverywhere.
But he must have felt badenough to stay.
They're keeping the ones thatthey can in their rooms and
feeding them in their rooms andeverything.
But between me having mycataract surgery and all of that
(07:57):
, I haven't actually physicallybeen there to see them for
probably three to four weeks andit's killing me.
I don't want to get started.
Speaker 2 (08:06):
I'll start crying, but they isolating them.
Now they did, when they'retrying to, but it's.
Speaker 5 (08:13):
you know how do you do that?
The memory care yeah, it's hardto keep some of them in their
rooms and they're all just kindof out there giving it to each
other, but I mean lettingoutsiders in.
Oh, not necessarily, but wechoose as a family to do that
because, well, like I said, mysurgeries, my grandson with his
(08:34):
heart issue, he's got a very lowimmune system, so we just I see
him like a couple of timesCaregivers have called me and
done a facetime just gonna saymaybe they can do that yeah, but
he doesn't realize half thetime who he's even talking to.
But yeah, he'll go aroundcalling.
(08:55):
He'll go around calling my nameall day.
Speaker 2 (08:57):
But then no, but for you it's because you said you
haven't got to see him like younormally do because of your
surgeries and things.
Speaker 5 (09:04):
Right, and I'm having the next one April 21st, so
that means I won't get to gothere for a while yet.
Speaker 2 (09:12):
But you FaceTiming him and you know in your heart,
you know you're seeing him, youhear your voice.
So I would ask them to do thatevery other day, if they would.
Speaker 5 (09:21):
You hear your voice, so I would ask them to do that
every other day.
If they would, and as long as Ihear him and know he's doing
okay, then that's helpful.
Speaker 2 (09:28):
And you never know.
Like you say, sometimes hedoesn't know who you are, but
just hearing your voice makeshim calm down, I think.
Thank you, linda.
Yeah, that's what I think.
That's what I would do if I wasin your case, I think they
already did that.
That's what I think.
That's what I would do if I wasin your case.
They already did that, offeredthat.
Speaker 5 (09:46):
FaceTiming.
Speaker 2 (09:47):
Right With you.
Thank you, yep, because thatdidn't happen a lot during COVID
.
Yeah, for sure, it was sooverwhelmed then, yeah.
They suggest that if you'regoing there to wear face masks,
but they don't really enforce it, and so people do what they
(10:07):
feel most comfortable with,which is good really yeah, and I
think now it's no big deal,like if I choose to wear a mask
on a plane or a double mask on aplane or in an airport, like
people don't even right, nobodythinks twice yeah, right, which
I think is a positive thing.
Again, out of COVID, you know,I just wish the people that knew
(10:29):
they were sick would wear it.
They don't always, they don'talways do that, but right, and
if I'm in a place that's verycrowded, you know, because last
summer I had mono, then caughtCOVID because I went to a
stadium, high school stadium,yeah, so it's.
And I have a dear friend who'sbattling cancer and I will wear
(10:51):
a mask around her too, and she'slike you don't have to, but I
will.
Speaker 5 (10:55):
Well, yeah.
Speaker 2 (10:56):
I would want to too.
So you don't think you wouldlike double mask up and just go
into Sam, or you want to holdoff to the next surgery?
Speaker 5 (11:04):
I think I need to hold off, because what if
something gets in my eye even?
Yeah, I just don't want to takechances and I can't wait to
have the next one and get somenormal glasses.
These are readers cheaters andit's like off and on all day now
until I get the prescription.
(11:24):
Yeah, but at least I can seelong distance.
That's good, yeah.
And I'll be able to drive again.
That's good.
Speaker 2 (11:33):
What happens when you get cataracts fixed.
You can see long distance.
Speaker 5 (11:37):
Well, yeah, it depends how they fix it.
Like the right eye, I woreglasses mostly for reading, but,
um, I still need something forreading, but yet I can see
further clearly with both eyes.
Now, I mean, you know, withusing the right eye.
Speaker 2 (11:57):
Yeah, there is.
How many else to explain it now?
I totally understood that.
How many people with a levybody have cataract issues?
I haven't heard anybody havecataract surgery did you have
the surgery right?
Speaker 1 (12:09):
yeah, my, oh, I'm sorry, hold on say it again, my
left eye about I don't know two,three years ago.
It was getting to the pointwhere I the way I gauged it is I
could see the TV because the TVis big but we used to have like
a TomCast control boxunderneath.
(12:31):
That had the time.
It was getting to the point.
I couldn't read the timeanymore you know, my normal
sitting position so I went andthey determined that my left eye
was the worst of the two.
So we did the left eye and itworked.
It worked well.
Unfortunately, a month later Ihad complications, so that's why
(12:51):
I've been reluctant to go backfor the right eye.
But as Sharon said the dayafter surgery you know because
you go back immediately and hetook the bandage off I hadn't
seen that well since.
I was like 12 years old.
Speaker 5 (13:09):
That's neat.
Speaker 1 (13:11):
For the long distance .
So today the upper part of thislens is pure glass, bottom part
is for reading.
Wow, and this one is thecombination of both, because I
haven't had it done yet Allright, all right.
Speaker 2 (13:28):
Did you have cataract surgery?
Speaker 3 (13:29):
No, I was going to say Sam had his.
Okay, bruce, please yeah, youknow, him and Tracy, both did oh
, recently you're saying uh, Ithink, sandy, quite a while ago
oh, I thought you said recentlyhas anybody else had cataract
(13:54):
surgery?
Speaker 2 (13:54):
that has Louie, that's here.
Speaker 1 (13:56):
No, I'm in trouble with my dog no, but it's easier
for teachers to tell whenthey're having that problem,
because when they go to classand start teaching, they lose
control of their pupils.
Speaker 5 (14:14):
Oh my gosh, Tom, oh my gosh.
Now, that was a good one.
That was excellent.
Yeah, where did you pull goodone?
That was excellent.
Yeah, where did you pull thatfrom?
That was good.
He stays up nights thinking ofthese.
Speaker 2 (14:29):
I'm telling you you could be a stand-up comedian,
mister.
Yes, he could.
Yep, I'm sure everybody.
So what?
You have dementia and justeverybody laughs.
Yep, wow, that was a z zinger.
That was a really good one.
How about?
Speaker 4 (14:47):
you, liz, how you been feeling.
Um, well, I over the weekend II worried and worried and
worried about, uh, what's goingto happen with my doctor
important tomorrow and startingtesting, imaging blood work, all
that for heart, uh, low heartrate.
And I've talked to a couplepeople who knows and one was a
(15:13):
retired neurologist and somebodyelse they said go get a
pacemaker.
I don't want a pacemaker,mostly because to have one I
can't get any imaging done therest of my life and I want to be
able to get imaging, see howI'm doing at some point.
Speaker 2 (15:39):
Don't they make pacemakers?
I have a stimulator in my backand I said I don't want it in if
I can't get an MRI.
And there's one that I, whenthey put it in me, I can have an
MRI as long as it's turned off.
Speaker 4 (15:55):
I can't imagine they don't have the same thing
nowadays for pacemakers well,the neurologist was telling me
that that's how it is, that, um,she said what, what she wanted
to be able to do, and they saidit or made it or whatever, um,
so that that could happen, and Ithought she didn't know what
(16:17):
she was talking about.
The big thing is have apacemaker because you can live
again, you can lose that fatigueand serious weariness and get
(16:42):
around, do things you want to do, that kind of thing, and I'm
all for that listen.
Speaker 2 (16:48):
I just looked it up.
Nowadays it says fortunately,most pacemakers and icds are now
mri compatible.
You need to find somebody thatwill put that, because I can't
imagine, because I've had thisin my back for four or five
years.
I've had MRIs with it.
You just I just have to makesure it's off and I have to give
(17:08):
them some code off of it beforeI can go on an MRI Now and then
another one.
Yes, there are pacemakersdesigned to be compatible with
MRI scans, so I would just makesure you find somebody that can
do on it.
Speaker 5 (17:21):
So look up Inspire for me, because they told me no
MRIs.
Are there different kinds ofMRIs?
Speaker 2 (17:30):
I think different is if they inject you with
something versus not injectingyou.
Speaker 5 (17:35):
But it's a magnet right, magnetic thing.
But it's a magnet right themagnetic thing.
Speaker 2 (17:39):
Yeah, I had one done when my back was first blown out
and I had my.
I left my shoe, my teacherdressy shoes on and I didn't
know the heels were now on andthat machine was on and my body
went.
Oh my gosh, oh my God, and Iwas like inside of it.
I'm like not the best thing forsomebody who's got a blown disc
(18:03):
and now just make sure you takeoff your shoes.
Yeah, wow, yeah.
Speaker 5 (18:08):
But I can't imagine with Inspire too, like nowadays
they just said no MRIs, but theysaid there are some that you
can have.
But I don't understand.
I thought an MRI was an MRI.
If you have model 3028 implantyou can undergo a full MRI.
(18:29):
What is that model?
Did they say?
This has been three.
It'll be three years in August.
Speaker 2 (18:34):
I don't know.
It doesn't say but Well, if youhave a model 3024, it's not
eligible.
24?
3024, you can't, but if youhave a 3028, you can.
Speaker 5 (18:48):
I will be looking up my model number.
Speaker 2 (18:50):
That's a model number right, I just wrote inspire,
can you get an MRI?
And it came up.
Yeah, okay, I'll look at it,Thanks, yeah, I just can't
imagine nowadays that they don'thave stuff that's compatible
(19:10):
with imaging.
Yeah, that's good news, lizfind one.
Speaker 4 (19:13):
That's good it is, and you'll get that put in and
then you'll have energy and notworry about you know, I'll get
out and, uh, get some gardeningdone.
Speaker 2 (19:17):
Yeah, there you go it's gonna be life we hope,
after listening to thethree-part recording of one of
our support meetings, that youconsider joining in.
Joining us in one of themeetings mondays and fridays at
11 30 eastern is for those withlouis body dementia or and or
(19:38):
caregivers, so it's a mixedgroup.
Thursdays at 4.30 Eastern, themeeting is for those with Lewy
body dementia diagnosis or thoseseeking a diagnosis.
And Saturdays at 3 pm Easternis for spouses, but some weeks
on Saturday there's a mix ofcaregivers and not just spouse
caregivers.
(19:59):
Dory, who runs those meetings,always posts a reminder on the
day of the meeting forcaregivers as well.
A special shout out to Megan,who also posts reminders about
all the meetings.
Curry and I couldn't do thisalone and we are so grateful to
all of you who volunteer to help, from posting info about
(20:19):
meetings posting positivemessages every day.
Thanks, julie.
And to Ray and Megan for makingsuggestions for Zoom meeting
attire for special days, just tomake it a little more fun and
just remember we're all in thistogether and need to lean on one
another.
Speaker 3 (20:44):
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 be asupporter of the podcast, check
out the links in the episodenotes below for the two ways you
(21:07):
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.
And also we are continuing towork on the advocacy 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 (21:30):
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 atlouisbodyrollercoaster at
gmailcom.
The more people we reach out to, the more people we can help.
(21:55):
And just remember we are doingthis podcast for all of us and
we appreciate that you tune ineach week.
Speaker 3 (21:58):
Yes, Susan, we want to thank you for coming back and
joining us this week also.
So thanks for joining us, folks.
Speaker 2 (22:04):
Until next week.
Speaker 3 (22:06):
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.
(01:58):
I thank everyone who's donatedto Patreon and all the ones who
have donated to GoFundMe.
Without you all, we couldn't dothis thing.
Speaker 2 (02:04):
Let's continue with the last part of this three-part
recording, as Curry continuesto share how Louie is wreaking
havoc on him right now.
How are you, joni and Gary?
How are you guys doing?
Speaker 4 (02:15):
The only thing I had recently was the.
Speaker 2 (02:18):
I had a burning pain you mean on a what?
Speaker 1 (02:24):
It felt like burning painful.
It felt so painful.
It felt like you.
Painful, so painful.
It felt like doing an Amazonfire.
Speaker 2 (02:30):
Yeah, like the nerve pain, burning nerve pain.
Speaker 1 (02:37):
It hurt.
Believe it or not, it was acrazy icy heart.
I see her Went away.
The next two days it up Lessand less and less.
Friday it was, uh, a little bitleft over, just standing In the
(03:01):
end by the elbow.
Speaker 4 (03:06):
You do one squat and it just turns so bad I just
couldn't do it.
Speaker 2 (03:13):
Yeah, well it's good that you got it away with, just
the icy hot.
You didn't have to takemedicine for it.
I think most people takegabapentin for that right Curry,
Is that what you're takinggabapentin for?
Speaker 3 (03:27):
Yeah, I used to take it.
They took me off gabapentinReally.
Speaker 2 (03:33):
Because you were on morphine.
Speaker 3 (03:35):
Yeah.
Speaker 2 (03:37):
Okay, so it's only been two days.
Do you feel the nerve paincoming back?
Speaker 3 (03:42):
Oh yeah, I mean, I still have the pain.
Speaker 2 (03:47):
Even on those other meds you still had the pain.
You just maybe wasn't strong,yeah, but now that you've been
off of them, yeah, see, I'vebeen off gabapentin for probably
four months.
Hmm, I didn't realize that.
Speaker 3 (04:05):
Yeah.
Speaker 2 (04:06):
How long have you been on morphine?
Four months.
Speaker 3 (04:09):
I've been on morphine since April.
No.
Speaker 2 (04:14):
No.
Speaker 5 (04:14):
I haven't no.
Speaker 3 (04:17):
I've been on morphine ?
Probably no.
I've been on morphine a longtime About a year, probably no.
I think I'm working a long timeabout a year is that how long
you've had hospice already?
Speaker 2 (04:31):
yeah, in April it'll be a year crazy anybody else
just like time is just.
Yeah.
I'm like what my alarm goes offat 11 15.
I'm like it's Monday again.
It was just Monday, yeah.
Yeah, I'm like what my alarmgoes off at 11.15.
I'm like it's Monday again.
It was just Monday, yeah.
Huh.
Well, I hope them taking youoff all that, it's just taking
(04:55):
it.
And you were in the hospitalfor a bit and it took you a bit
the last time that youaccidentally self-medicated
yourself too much.
Yeah, took you a minute or twoto get through.
Like maybe almost a week rightto recover from that.
Yeah, it was yeah, so rememberthat.
And when you're gettingfrustrated right now, that
(05:16):
that's what it is.
Your body just needs a longtime to get it out of your
system, you know yeah yeah, Itry to remember all that stuff.
Speaker 3 (05:28):
It's just hard to hard to stay positive.
Speaker 2 (05:35):
Yeah, waiting for the it to pass yeah but remember
that you've been through thismany time oh yeah, it bought
them and we're like oh, is hegonna come back?
And here he's coming back up.
But remember that you've beenthrough this many times oh yeah,
it bought him and we're like oh, is he going to come back?
And here he's coming back up.
So yeah.
Take more than this to keep youdown.
You just have to be patient.
(05:57):
I hope so you all hear me sayit.
So when he doesn't follow ourrules, yeah, I think you do look
better than you did Friday, nooffense.
Speaker 3 (06:10):
No, no, none taken.
Yeah, you looked pretty wipedout on Friday, for sure, friday,
I was pretty wiped out.
Speaker 2 (06:20):
Yeah, you didn't remember going to the meeting
Thursday or Friday.
Speaker 3 (06:23):
No, I don't.
Speaker 2 (06:25):
No, I wish we knew you wouldn't remember, because
then we could get some goodjuicy stuff out of you Secrets
or something.
Right, you need to have yourwife call about that cough.
Don't let it linger, becausethat could turn into pneumonia
If you don't take that out ofyour chest the hospice is pretty
(06:47):
much staying on top of it.
Yeah, well, they should havegiven you mucinex or something,
though.
Speaker 1 (06:52):
Yeah.
Speaker 2 (06:53):
You know they'll come in tomorrow.
Yeah, I'll be texting your wifelater and telling on you.
That's what we do.
Any updates with you, Sharon?
Speaker 5 (07:08):
Well, Jack has been exposed to COVID quite a bit.
His whole memory care unit istaking their turns.
His suite mate started it withpneumonia about three weeks ago
and then he came down.
The guy came down with COVIDlast week and I got a call I
(07:34):
think it was Friday saying thatJack now had it and he actually
has been staying in his room,which is very unusual because
he's usually peddling aroundeverywhere.
But he must have felt badenough to stay.
They're keeping the ones thatthey can in their rooms and
feeding them in their rooms andeverything.
But between me having mycataract surgery and all of that
(07:57):
, I haven't actually physicallybeen there to see them for
probably three to four weeks andit's killing me.
I don't want to get started.
Speaker 2 (08:06):
I'll start crying, but they isolating them.
Now they did, when they'retrying to, but it's.
Speaker 5 (08:13):
you know how do you do that?
The memory care yeah, it's hardto keep some of them in their
rooms and they're all just kindof out there giving it to each
other, but I mean lettingoutsiders in.
Oh, not necessarily, but wechoose as a family to do that
because, well, like I said, mysurgeries, my grandson with his
(08:34):
heart issue, he's got a very lowimmune system, so we just I see
him like a couple of timesCaregivers have called me and
done a facetime just gonna saymaybe they can do that yeah, but
he doesn't realize half thetime who he's even talking to.
But yeah, he'll go aroundcalling.
(08:55):
He'll go around calling my nameall day.
Speaker 2 (08:57):
But then no, but for you it's because you said you
haven't got to see him like younormally do because of your
surgeries and things.
Speaker 5 (09:04):
Right, and I'm having the next one April 21st, so
that means I won't get to gothere for a while yet.
Speaker 2 (09:12):
But you FaceTiming him and you know in your heart,
you know you're seeing him, youhear your voice.
So I would ask them to do thatevery other day, if they would.
Speaker 5 (09:21):
You hear your voice, so I would ask them to do that
every other day.
If they would, and as long as Ihear him and know he's doing
okay, then that's helpful.
Speaker 2 (09:28):
And you never know.
Like you say, sometimes hedoesn't know who you are, but
just hearing your voice makeshim calm down, I think.
Thank you, linda.
Yeah, that's what I think.
That's what I would do if I wasin your case, I think they
already did that.
That's what I think.
That's what I would do if I wasin your case.
They already did that, offeredthat.
Speaker 5 (09:46):
FaceTiming.
Speaker 2 (09:47):
Right With you.
Thank you, yep, because thatdidn't happen a lot during COVID
.
Yeah, for sure, it was sooverwhelmed then, yeah.
They suggest that if you'regoing there to wear face masks,
but they don't really enforce it, and so people do what they
(10:07):
feel most comfortable with,which is good really yeah, and I
think now it's no big deal,like if I choose to wear a mask
on a plane or a double mask on aplane or in an airport, like
people don't even right, nobodythinks twice yeah, right, which
I think is a positive thing.
Again, out of COVID, you know,I just wish the people that knew
(10:29):
they were sick would wear it.
They don't always, they don'talways do that, but right, and
if I'm in a place that's verycrowded, you know, because last
summer I had mono, then caughtCOVID because I went to a
stadium, high school stadium,yeah, so it's.
And I have a dear friend who'sbattling cancer and I will wear
(10:51):
a mask around her too, and she'slike you don't have to, but I
will.
Speaker 5 (10:55):
Well, yeah.
Speaker 2 (10:56):
I would want to too.
So you don't think you wouldlike double mask up and just go
into Sam, or you want to holdoff to the next surgery?
Speaker 5 (11:04):
I think I need to hold off, because what if
something gets in my eye even?
Yeah, I just don't want to takechances and I can't wait to
have the next one and get somenormal glasses.
These are readers cheaters andit's like off and on all day now
until I get the prescription.
(11:24):
Yeah, but at least I can seelong distance.
That's good, yeah.
And I'll be able to drive again.
That's good.
Speaker 2 (11:33):
What happens when you get cataracts fixed.
You can see long distance.
Speaker 5 (11:37):
Well, yeah, it depends how they fix it.
Like the right eye, I woreglasses mostly for reading, but,
um, I still need something forreading, but yet I can see
further clearly with both eyes.
Now, I mean, you know, withusing the right eye.
Speaker 2 (11:57):
Yeah, there is.
How many else to explain it now?
I totally understood that.
How many people with a levybody have cataract issues?
I haven't heard anybody havecataract surgery did you have
the surgery right?
Speaker 1 (12:09):
yeah, my, oh, I'm sorry, hold on say it again, my
left eye about I don't know two,three years ago.
It was getting to the pointwhere I the way I gauged it is I
could see the TV because the TVis big but we used to have like
a TomCast control boxunderneath.
(12:31):
That had the time.
It was getting to the point.
I couldn't read the timeanymore you know, my normal
sitting position so I went andthey determined that my left eye
was the worst of the two.
So we did the left eye and itworked.
It worked well.
Unfortunately, a month later Ihad complications, so that's why
(12:51):
I've been reluctant to go backfor the right eye.
But as Sharon said the dayafter surgery you know because
you go back immediately and hetook the bandage off I hadn't
seen that well since.
I was like 12 years old.
Speaker 5 (13:09):
That's neat.
Speaker 1 (13:11):
For the long distance .
So today the upper part of thislens is pure glass, bottom part
is for reading.
Wow, and this one is thecombination of both, because I
haven't had it done yet Allright, all right.
Speaker 2 (13:28):
Did you have cataract surgery?
Speaker 3 (13:29):
No, I was going to say Sam had his.
Okay, bruce, please yeah, youknow, him and Tracy, both did oh
, recently you're saying uh, Ithink, sandy, quite a while ago
oh, I thought you said recentlyhas anybody else had cataract
(13:54):
surgery?
Speaker 2 (13:54):
that has Louie, that's here.
Speaker 1 (13:56):
No, I'm in trouble with my dog no, but it's easier
for teachers to tell whenthey're having that problem,
because when they go to classand start teaching, they lose
control of their pupils.
Speaker 5 (14:14):
Oh my gosh, Tom, oh my gosh.
Now, that was a good one.
That was excellent.
Yeah, where did you pull goodone?
That was excellent.
Yeah, where did you pull thatfrom?
That was good.
He stays up nights thinking ofthese.
Speaker 2 (14:29):
I'm telling you you could be a stand-up comedian,
mister.
Yes, he could.
Yep, I'm sure everybody.
So what?
You have dementia and justeverybody laughs.
Yep, wow, that was a z zinger.
That was a really good one.
How about?
Speaker 4 (14:47):
you, liz, how you been feeling.
Um, well, I over the weekend II worried and worried and
worried about, uh, what's goingto happen with my doctor
important tomorrow and startingtesting, imaging blood work, all
that for heart, uh, low heartrate.
And I've talked to a couplepeople who knows and one was a
(15:13):
retired neurologist and somebodyelse they said go get a
pacemaker.
I don't want a pacemaker,mostly because to have one I
can't get any imaging done therest of my life and I want to be
able to get imaging, see howI'm doing at some point.
Speaker 2 (15:39):
Don't they make pacemakers?
I have a stimulator in my backand I said I don't want it in if
I can't get an MRI.
And there's one that I, whenthey put it in me, I can have an
MRI as long as it's turned off.
Speaker 4 (15:55):
I can't imagine they don't have the same thing
nowadays for pacemakers well,the neurologist was telling me
that that's how it is, that, um,she said what, what she wanted
to be able to do, and they saidit or made it or whatever, um,
so that that could happen, and Ithought she didn't know what
(16:17):
she was talking about.
The big thing is have apacemaker because you can live
again, you can lose that fatigueand serious weariness and get
(16:42):
around, do things you want to do, that kind of thing, and I'm
all for that listen.
Speaker 2 (16:48):
I just looked it up.
Nowadays it says fortunately,most pacemakers and icds are now
mri compatible.
You need to find somebody thatwill put that, because I can't
imagine, because I've had thisin my back for four or five
years.
I've had MRIs with it.
You just I just have to makesure it's off and I have to give
(17:08):
them some code off of it beforeI can go on an MRI Now and then
another one.
Yes, there are pacemakersdesigned to be compatible with
MRI scans, so I would just makesure you find somebody that can
do on it.
Speaker 5 (17:21):
So look up Inspire for me, because they told me no
MRIs.
Are there different kinds ofMRIs?
Speaker 2 (17:30):
I think different is if they inject you with
something versus not injectingyou.
Speaker 5 (17:35):
But it's a magnet right, magnetic thing.
But it's a magnet right themagnetic thing.
Speaker 2 (17:39):
Yeah, I had one done when my back was first blown out
and I had my.
I left my shoe, my teacherdressy shoes on and I didn't
know the heels were now on andthat machine was on and my body
went.
Oh my gosh, oh my God, and Iwas like inside of it.
I'm like not the best thing forsomebody who's got a blown disc
(18:03):
and now just make sure you takeoff your shoes.
Yeah, wow, yeah.
Speaker 5 (18:08):
But I can't imagine with Inspire too, like nowadays
they just said no MRIs, but theysaid there are some that you
can have.
But I don't understand.
I thought an MRI was an MRI.
If you have model 3028 implantyou can undergo a full MRI.
(18:29):
What is that model?
Did they say?
This has been three.
It'll be three years in August.
Speaker 2 (18:34):
I don't know.
It doesn't say but Well, if youhave a model 3024, it's not
eligible.
24?
3024, you can't, but if youhave a 3028, you can.
Speaker 5 (18:48):
I will be looking up my model number.
Speaker 2 (18:50):
That's a model number right, I just wrote inspire,
can you get an MRI?
And it came up.
Yeah, okay, I'll look at it,Thanks, yeah, I just can't
imagine nowadays that they don'thave stuff that's compatible
(19:10):
with imaging.
Yeah, that's good news, lizfind one.
Speaker 4 (19:13):
That's good it is, and you'll get that put in and
then you'll have energy and notworry about you know, I'll get
out and, uh, get some gardeningdone.
Speaker 2 (19:17):
Yeah, there you go it's gonna be life we hope,
after listening to thethree-part recording of one of
our support meetings, that youconsider joining in.
Joining us in one of themeetings mondays and fridays at
11 30 eastern is for those withlouis body dementia or and or
(19:38):
caregivers, so it's a mixedgroup.
Thursdays at 4.30 Eastern, themeeting is for those with Lewy
body dementia diagnosis or thoseseeking a diagnosis.
And Saturdays at 3 pm Easternis for spouses, but some weeks
on Saturday there's a mix ofcaregivers and not just spouse
caregivers.
(19:59):
Dory, who runs those meetings,always posts a reminder on the
day of the meeting forcaregivers as well.
A special shout out to Megan,who also posts reminders about
all the meetings.
Curry and I couldn't do thisalone and we are so grateful to
all of you who volunteer to help, from posting info about
(20:19):
meetings posting positivemessages every day.
Thanks, julie.
And to Ray and Megan for makingsuggestions for Zoom meeting
attire for special days, just tomake it a little more fun and
just remember we're all in thistogether and need to lean on one
another.
Speaker 3 (20:44):
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 be asupporter of the podcast, check
out the links in the episodenotes below for the two ways you
(21:07):
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.
And also we are continuing towork on the advocacy 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 (21:30):
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 atlouisbodyrollercoaster at
gmailcom.
The more people we reach out to, the more people we can help.
(21:55):
And just remember we are doingthis podcast for all of us and
we appreciate that you tune ineach week.
Speaker 3 (21:58):
Yes, Susan, we want to thank you for coming back and
joining us this week also.
So thanks for joining us, folks.
Speaker 2 (22:04):
Until next week.
Speaker 3 (22:06):
This is Linda and Curry signing off.
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