April 22, 2025 • 30 mins
This week is part one 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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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 4 (02:05):
Thank you, you, you, you, you, thank you.
This week and the next twoweeks we are going to share with
you a support meeting that werecorded.
The group allowed us to recordthe meeting to share with you
all so you can hear those in themeeting share openly about
their symptoms and ways theycope with the ups and downs of
this disease.
(02:25):
But you will also hear lots oflaughter and support and you can
feel hopefully you'll be ableto feel, through their words by
hearing them, the love there isfrom the people in this group
for one another, from the peoplein this group for one another.
(02:45):
You will find you have.
You will if you decide to join.
You will find you have a newfamily with the group of people
in these meetings.
We hope, after listening tothis three-part series, you will
feel more comfortable to tryand join in one of the meetings
we hold each week.
And remember you can join andjust listen if needed at first,
(03:09):
if that helps.
So this week Kari shares withus how he is feeling on his
downward part of the rollercoaster while others jump in and
share their symptoms as well.
We talk about rock-steadyboxing and sundowning.
I recorded this using my laptopmic, so please bear with the
sound, any echoing in someplaces.
(03:30):
A quick thanks to all those whoallowed us to record the
meeting and shared Curry, ray,dory and Tom, effie and Dan.
Sharon and Liz.
So let's get this meetingstarted.
Sharon and Liz, so let's getthis meeting started.
All right, I know you'restruggling right now.
Speaker 5 (03:53):
What is going on?
Oh Louie sucks.
Right now it's mega.
I've been down several weeksnow.
It seems like I just can't getback up.
I've got tremor in both handsnow and that really pisses me
(04:24):
off.
But, like I said, I got atremor in both hands.
I stay, my head stays foggy allthe time and I just I was going
to tell you that I don't thinkI can do zoom by myself anymore,
just can't do it but, it's justbeen real bad for me.
(04:49):
I can't I start losing track ofwords again, all kinds of stuff
like that.
It's just not been a good fewweeks.
Speaker 4 (04:59):
Yeah, and you've been through this before.
Yeah, it's kind of down withLouie.
Speaker 5 (05:04):
Yeah, this summer.
I don't think I'm coming backup like I was.
Speaker 4 (05:10):
You know that we always read and hear that you go
down and you come back.
You just don't come back whereyou were, you just come back
below where you were.
Yeah.
Speaker 5 (05:25):
But your hallucinations.
Speaker 4 (05:31):
I still have hallucinations and confusion.
Speaker 5 (05:32):
Oh, yeah, yeah, like.
And uh, linda, uh, we can bedoing something and I just lose,
lose, we're doing.
You know, right in the middleof it, and I can see sometimes
it upsets her that I do that.
(05:53):
She's been good at it.
Speaker 4 (05:58):
You know she's not upset with you when you do that
Right.
She's upset with the disease.
Speaker 5 (06:04):
Yeah.
Speaker 4 (06:06):
When it's happening, it may feel like she's upset
with you, but you know she's notoh, yeah, yeah, yeah, she's
been.
Speaker 5 (06:20):
Like I said, my head stays foggy just about all the
time now well, you are stuffyright now.
Speaker 4 (06:26):
Yeah, I mean, I can hear it and you know I text your
wife, right?
Speaker 5 (06:32):
Oh yeah.
Speaker 4 (06:34):
To ask how you're doing oh okay.
She said that you're fighting acough too.
Speaker 5 (06:39):
Yeah, oh yeah, I got a bad cough.
Speaker 4 (06:42):
Yeah, how long have you had that A couple?
Speaker 5 (06:44):
weeks.
Yeah.
How long have you had that?
A couple weeks yeah.
Speaker 4 (06:47):
What does hospice say about it?
Speaker 5 (06:51):
I don't think I mentioned it to her.
Of course you didn't.
Speaker 4 (06:56):
That's what you do.
Well, I'm going to text yourwife and ask her to just tell
them everything, even if youdon't want her to, because there
may be something they can do tohelp you.
Speaker 5 (07:08):
I don't know if I knew much for this cough.
I don't know.
Speaker 4 (07:15):
To me you sound like you have your head and chest
congested.
Speaker 5 (07:19):
I am yeah.
And I don't know if I had toput my oxygen on for about three
hours yesterday, and it'sanother thing.
I've been losing my breath realgood, real quick, I mean.
Speaker 4 (07:37):
It's been a minute before.
You've had to use that before,right.
Speaker 5 (07:40):
Yeah, I use it every night.
I put it on at night just tohave it there with me, but I
always take it off during theday.
But like yesterday, I had to.
She had dragged the machineover and, uh, I used it for
about three hours yesterday,three, maybe four hours
(08:02):
yesterday now, how long have youbeen using the oxygen at night?
Speaker 4 (08:05):
since you had hospice or before that?
Speaker 5 (08:08):
Since they brought it to me okay yeah, I remember
them bringing you.
Speaker 4 (08:16):
You remember what went on that last week of Jim's
life, where they brought me atruckload of stuff that I didn't
even know what it was for andapparently it was part of an
oxygen thing.
They just didn't bring the restof it.
Speaker 5 (08:26):
Yeah.
Speaker 4 (08:27):
But does it help you though.
Speaker 5 (08:30):
I can't tell if it does.
Yesterday it helped me.
Yesterday it helped me when Ilost my breath for so long.
Speaker 4 (08:42):
Now, did you lose it after trying to walk somewhere?
Yeah, how far did you walk?
Speaker 5 (08:47):
A couple of steps.
I can lose it just in a coupleof steps.
Bad.
Speaker 4 (08:54):
Is it worse than like when you were still driving and
that was happening?
Speaker 5 (09:00):
Is it worse than that ?
Speaker 4 (09:02):
Yeah, remember you were walking around the truck.
You couldn't walk around yourtruck, it's yeah it's probably
worse than that.
Speaker 5 (09:08):
Yeah, remember you were walking around the truck.
You couldn't walk around yourtruck.
Yeah, it's probably worse thanthat.
Speaker 4 (09:13):
And did you tell hospice that today?
Speaker 5 (09:15):
Yeah.
Speaker 4 (09:17):
You know what I'd be doing right now if I was sitting
next to you.
Speaker 5 (09:21):
Right Slapping me.
Speaker 4 (09:22):
Smacking you upside your head.
There's nothing they can do forit well, they need to know that
you know to record it.
And have you taken likedecongestion medicine, like oh?
Speaker 5 (09:34):
yeah, I mean I'm cough syrup for.
Yeah, but it's, you got thatcough syrup and it breaks it up
yeah, like it starts.
Speaker 4 (09:41):
I think it starts with an amucinex or something I
use uh, uh, robitussin.
Yeah, you should try.
Just lost to name it.
But what did I just say,mucinex?
Because that really will breakup.
Your Don't write it down.
I'm sending your wife a messageas we speak.
(10:03):
So I'm just going to say we'rein the middle of a Zoom meeting
and I asked everybody on Zoom ifit's okay if I record it on our
Zoom today, because Carrie'sbeen struggling.
So I'm going to let everybodyelse share about what you're
going through, carrie, and ifthey have any advice for you.
(10:26):
Besides, let yourself rest.
You know that's the hardestthing with you, I think, is you
don't want to give your body.
Speaker 5 (10:35):
I haven't been trying to do it all.
Yeah, I know we can't, theyknow I can't do it and I know I
can't do it.
Speaker 4 (10:44):
I think this all started when you were trying to
fix the washing machine and,yeah, all that.
Maybe you overdid it mentallyand physically.
Speaker 5 (10:55):
Yeah.
Speaker 4 (10:56):
So this is your body saying all right, buddy, it's
time to take a rest.
Speaker 5 (11:00):
Yeah.
Speaker 4 (11:02):
You know, you do look better now than you did before.
Speaker 5 (11:06):
Do I look what?
Speaker 4 (11:07):
You do look a little better than you did last week,
but I can hear that you'restuffed up.
Speaker 5 (11:12):
Yeah well, they got the washing machine and dryer
fixed, Got them hooked up.
They got two leaks in theserial line.
They got to come back and fix.
Everything is just about done.
Speaker 4 (11:26):
Well, that's good.
Your electric blow will go downnow because you're in a good
condition.
Speaker 5 (11:31):
Yeah.
Speaker 4 (11:33):
It's coming in.
So, hey, if there's coming in,we're recording today.
It's because we're going to useit as one of the podcasts,
because I kind of had Curry justtell us how he's been doing and
struggling with hishallucinations.
Still, how about delusions?
Speaker 5 (11:56):
Yeah, no, basically hallucinations and losing my
breath are the two bad thingsright now.
Speaker 4 (12:03):
And what are you hallucinating?
Speaker 5 (12:07):
It's not stupid stuff .
I wake up and I'll be talkingto, like this morning, and I was
talking to Doug.
Well, doug, I haven't seen Dougsince high school, but I
remember I was dreaming abouthim and then all of a sudden I
(12:31):
woke up and hollered hey, doug,come here.
And Linda said she always saidhoney, you're not, that's not
happening, stuff like that.
Speaker 4 (12:44):
Well, they're not scary, so that's good.
Speaker 5 (12:46):
Yeah.
Speaker 4 (12:47):
Right, I mean because before you would see.
Speaker 5 (12:53):
Oh yeah, I used to have some real spooky words.
Speaker 4 (12:56):
Yeah, yeah, so that's a positive to your
hallucinations.
Yeah, so.
Has anybody else have dealtwith that?
I'm just going to be a teachernow and if you want to share,
raise your hand and I willunmute you and stop playing your
(13:16):
video games.
I can tell who's playing.
That's usually um right, how,how about you?
Right?
Have you had dealt withanything like curry's talking
about?
Speaker 1 (13:28):
uh, no, I have not.
Fortunately I'm.
I don't have hallucinations.
I have other problems, butelusive.
You know, my problem usually isbeing up four or five times a
night due to incontinence, aswell as cramps from uh the
disease.
So so I I get my sleep one hourat a time.
Speaker 4 (13:51):
I remember Jim jumping out of bed because of
his leg cramps and now, lookingback, like I literally have a
video of him, he would go andput alcohol on his legs and now
I realize it was because he feltlike he had creepy crullies in
his legs and he was trying tokill it with alcohol.
Speaker 5 (14:10):
That's what we're saying real quick.
It's going on.
My incontinence had pretty muchstopped there for a couple
weeks and I thought, oh good,cool, you know that's going to
stay away now.
Well, no, it come back.
Speaker 3 (14:27):
And it was like, you know, that was a joyous thing.
And then afterwards there waslike a little, you know, in the
room they had refreshments andthings like that.
I'm still watching the baby andtalking.
And then there was a meetingafter church, meeting after the.
After that that took an hour.
And then there was anothermeeting that was going to be
(14:49):
with the attorney general ofrhode island, that that people
were encouraged to attend and Iwent home and I just like
collapsed and I mean I sleptlike just I just slept like
death.
I mean I was just like totallyout of it.
You know, it's like when thesame thing and the same thing,
(15:10):
it's like all.
It's like all that was all thatwas wonderful but it's great.
And then when I go to RocksteadyBoxing, sometimes when I, when
I go, I go wild with you know,get on that heavy bag and I
start, you know, beating,beating the heck out of it, and
I get to the point where it'slike I'm taking out all my
(15:33):
frustration.
You know it's it's a the name,you know, the name of the bag is
louis.
Beat it up, yeah, uh, you know.
And and then I do the you know,and I do another bag this other
bag and I do the speed bag andI I go, I'll go three straight
minutes punching a speed bag andthen on to the next station and
(15:59):
I come out of there exhausted.
And sometimes, if they controlthe program I don't want to make
this long-winded, but when theycontrol the program and they
make it more varied and they andthey incorporate a lot more
stretching and a lot more mentalchallenges and it and it's and
it's uh and it's like a um.
(16:20):
You know, it's like asmorgasbord of things that they
have you do a little bit of yoga, a little bit of tai chi, a lot
, lot of stretching maybe not somuch physical boxing and things
.
And challenge me on walking.
My biggest problem is walking astraight line and they do
(16:40):
things to help me with that.
And if it's a morecomprehensive approach to what's
wrong with people, I don't havethe same type of reaction
afterwards.
So it's, it's like.
It seems like everything issuch a you know, a fine line
balance.
You know, we went out the other, we went out and with a couple
(17:02):
the other day and I was a raginguh.
Whatever you call it beginswith a and ends with e, you know
, yeah we got.
Speaker 6 (17:13):
It really wasn't he thought he was thinking that way
.
Speaker 3 (17:16):
It wasn't so much expressing it well, the way as
aware as he was but I wasn'taware of it and it's just that
you know it's like those thingsare and and then you know,
sometimes I get, if I getoverdone, I get the shadow
people you know.
And I thought, get, if I getoverdone, I get the shadow
people you know.
And I thought I was done withthose shadow people.
(17:37):
I thought I was done with theshadow animals and the
hallucinations and stuff likethat.
But those can come back.
Speaker 4 (17:44):
Yeah, now when you're doing a rock steady boxing, is
it not them leading it?
Because I can imagine if I wasdoing it and they just let me
rip on one of those bags, Iwould keep punching it until my
arms I couldn't lift my armsanymore, which is in my head
Right, even when I walk, whichI'm like I used to walk a 10 K
five days a week and I'm likeI'm out here for the first time
(18:07):
while I'm out here, I'm going todo three and then I pay for it.
So is that kind of the samething with?
Speaker 3 (18:15):
the rocksteadyboxing.
Yeah, they control it, but uh,you know, I mean people just
take a break, they don't, theydon't go at it for three full
minutes like I do, like a maniac, you know, yeah.
Speaker 4 (18:32):
Yeah, but that's the fine line you're talking about
Like with you, dan.
Maybe is there a point when youexercise that you know I
probably should stop, but I'mgoing to keep going, and then
that makes you overstimulated.
Speaker 6 (18:47):
Well, it's interesting that I, back in,
like January and February, I didsome walks for the first time
since last summer and I wasappalled by how much I had lost
(19:09):
in that time and how overallweaker and dysfunctional my body
had become.
So I got the message and thecouple of people who do walking
with me you know fairly often,Fairly often they really got on
(19:43):
me and said you know, you've gotto set very low targets for
your, you know, for your walking, and so that was improving bit
(20:04):
frustrated because I was goingfrom, just by way of example,
maybe 30 seconds around anoutdoor to push myself more and
more and the next thing I knew Iwas lying at home on the couch
(20:26):
feeling like I didn't know whenI would be able to walk again.
And it's only come back veryslowly.
And so that's similar to whatother people are saying small
(20:51):
group of people who once everyweek or two get together for a
Zoom of that night's Celticsgame, and it's something we
really enjoy because invariablyit ends up not only being about
(21:15):
my symptoms but also just greatconversations about what's going
on in the world.
And we did that last night.
So that was last night and bythe time we got you know, back
to our starting point.
(21:35):
Um, and the celtics game wasabout to end, I I felt like I
couldn't go another inch yeah, Ithink we talked about this.
Speaker 2 (21:48):
We happened to have an appointment with Dan's
neurologist, dr Goodheart, likea week and a half ago, and we
were talking about thischallenge of how do you figure
out when you should stop.
And maybe, like you, tom Danwants to push through it, and
(22:10):
any other time in his life withexercise he would push through
it like no pain, no gain, rightkind of thing.
Um, and the thing that I thinkbecame apparent with the last
week and a half is that,unfortunately, it's not like
your body's going to say okay,that's it, you reach the limit,
(22:31):
stop.
You sometimes overdo it,unfortunately, and then you have
to pay, and so it is reallyfrustrating because, like,
you're wanting to push as muchas possible so as to get the
benefit of that, but then if youpush too much, then you're on
the couch the next day and intwo days and then, but there's
(22:55):
like nothing that exactly tellsyou, like there's no clear
answer necessarily but for me,one of the results of it is that
I get much more anxiety and I'masking myself when will I feel
(23:18):
better or when will I feel atleast improved, if you accept
that I may never feel better.
Speaker 6 (23:26):
So it becomes a psychological challenge as well
as a medical or physicalchallenge.
Speaker 2 (23:35):
Yeah, and we were a little bit.
You know Dan was mentioningthey're trying to get back both
between the weather and then themedication change in February,
just like there was a whole allthe exercise ground to a halt,
like stop.
So that in March we're tryingto help him gradually get back
to that.
And the first time he went fora walk it was literally for six
(23:56):
minutes and that was it short,short of breath, couldn't do
more than that.
And then it went up to 20minutes and then 27 minutes and
once even 32 minutes.
But then last week one day hedid 25 minutes and then he was
like on the couch flat out fortwo days.
So it's frustrating because,like you know, our minds want to
(24:20):
be like OK, now he did six, nowhe did 25.
Now he did 27.
We can keep going, but it's notnecessarily the case.
So that's the part.
I don't know if other peoplehave any advice about that.
Speaker 4 (24:34):
Go ahead, Tom.
Speaker 3 (24:35):
Well, I don't know about you, dan, but that sounds
like a great thing to gettogether for something like that
, you know, for the Celtics orwhatever, whatever team you like
, it could be anybody.
But that type of thing, it'ssocial and it's like there's a
you know automatically.
There's a sense of camaraderie,a sense of belonging.
(24:57):
It gives you all thesewonderful feelings and it's like
I've learned that, like I can'tthink of the word Stimulation.
Any sort of stimulation Doesn'tmatter if it's good or bad.
You know, if I go to the, I needto prepare for things.
(25:22):
I need to.
If I'm going out to play cardson a night, I need to make sure
that I don't do a lot of otherthings.
I need to make sure I get a'tdo a lot of other things.
I need to make sure I get a lotof rest that day and overload
myself, because if I do, I'mgoing to sundown.
Now you have to take intoaccount sundowning is really
going to play a role in that,and I don't know if you sundown
(25:46):
or sundown and just don'trealize.
It know, just like a, just likea toddler, my personality and
everything starts to deteriorateand then I'll become like a
toddler and I'll be.
You know, tantrum me a littlebit.
That's called out of make.
I'll coin my own phrase.
Speaker 4 (26:06):
But do you know you're?
Do you feel that you'rebecoming a?
Speaker 3 (26:13):
No, unfortunately, what's what's happened for me
lately is that I it's like Idon't know if it's a
hallucination I've had theseinner things going on, but it's
like I've been telling Dory,finally confided in her.
It's like I said, you know, Idon't think I's like.
I said, you know, I don't thinkI have Lewy body anymore, you
(26:36):
know, with all the overwhelmingevidence to the contrary.
You know, and it's like that'swhat we're dealing with, dan,
we're dealing with a mind thatdoesn't have a good executive
function and isn't able to setlimits.
People ask, ask well, don't youknow you're going too far and
it's like I haven't gone farenough on that heavy bag.
(26:59):
You know if that would be myanswer, you know, because I
don't have that.
You know it's time to stop.
They have to come over andthey'll stop me because I'm
going, I'm going at that thingand, uh, and, and, and, uh, uh,
it's, it's hard to do that.
It's like I need to.
You know, in some ways I'm likea child.
(27:21):
I need to be, I need to be, uh,taught, you know, you know what
this is too much and I need tobe able to listen to my, to my
wonderful wife here, when shesays you know, maybe maybe you
shouldn't be doing that, maybeyou need to be able to listen to
my wonderful wife here when shesays you know, maybe you
shouldn't be doing that, maybeyou need to rest, or remind me
we're going to be going out andyou need to stop and rest.
And because all of the thingsthat will aggravate so many
(27:44):
things, you know, aggravatethings and you know, a little
Parkinsonism comes on a littlebit, I get a little tremor in
the right hand and I getdisoriented and I don't know
what's going on and I ask herthe same question numerous times
and annoy her and seriously,that has a snowball effect too,
(28:12):
because if I'm doing that now,I'm creating tension with her
and I'm creating tension, that's.
You know you can cut with aknife sometimes, because you can
only be asked the same questionso many times before you get
frustrated.
I'm doing that to people andit's not intentional, it's just
the way it is.
Speaker 4 (28:33):
And, yeah, I, I need to, I need to rest more, I need
to my limits you know my limitslike right now I need, I need to
shut up I just I think that'sthe hardest thing is you, you,
you, like jeffy was just saying,you don't realize where your
limit is and you keep going andyou're going to push yourself
(28:54):
because that's what we have donewith ourselves all the time and
you just don't know it.
We're going to stop here forthis 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.
You, you, you, you.
Thank you, you, you, you, you, thank you.
This week and the next twoweeks we are going to share with
you a support meeting that werecorded.
The group allowed us to recordthe meeting to share with you
all so you can hear those in themeeting share openly about
their symptoms and ways theycope with the ups and downs of
this disease.
(02:25):
But you will also hear lots oflaughter and support and you can
feel hopefully you'll be ableto feel, through their words by
hearing them, the love there isfrom the people in this group
for one another, from the peoplein this group for one another.
(02:45):
You will find you have.
You will if you decide to join.
You will find you have a newfamily with the group of people
in these meetings.
We hope, after listening tothis three-part series, you will
feel more comfortable to tryand join in one of the meetings
we hold each week.
And remember you can join andjust listen if needed at first,
(03:09):
if that helps.
So this week Kari shares withus how he is feeling on his
downward part of the rollercoaster while others jump in and
share their symptoms as well.
We talk about rock-steadyboxing and sundowning.
I recorded this using my laptopmic, so please bear with the
sound, any echoing in someplaces.
(03:30):
A quick thanks to all those whoallowed us to record the
meeting and shared Curry, ray,dory and Tom, effie and Dan.
Sharon and Liz.
So let's get this meetingstarted.
Sharon and Liz, so let's getthis meeting started.
All right, I know you'restruggling right now.
Speaker 5 (03:53):
What is going on?
Oh Louie sucks.
Right now it's mega.
I've been down several weeksnow.
It seems like I just can't getback up.
I've got tremor in both handsnow and that really pisses me
(04:24):
off.
But, like I said, I got atremor in both hands.
I stay, my head stays foggy allthe time and I just I was going
to tell you that I don't thinkI can do zoom by myself anymore,
just can't do it but, it's justbeen real bad for me.
(04:49):
I can't I start losing track ofwords again, all kinds of stuff
like that.
It's just not been a good fewweeks.
Speaker 4 (04:59):
Yeah, and you've been through this before.
Yeah, it's kind of down withLouie.
Speaker 5 (05:04):
Yeah, this summer.
I don't think I'm coming backup like I was.
Speaker 4 (05:10):
You know that we always read and hear that you go
down and you come back.
You just don't come back whereyou were, you just come back
below where you were.
Yeah.
Speaker 5 (05:25):
But your hallucinations.
Speaker 4 (05:31):
I still have hallucinations and confusion.
Speaker 5 (05:32):
Oh, yeah, yeah, like.
And uh, linda, uh, we can bedoing something and I just lose,
lose, we're doing.
You know, right in the middleof it, and I can see sometimes
it upsets her that I do that.
(05:53):
She's been good at it.
Speaker 4 (05:58):
You know she's not upset with you when you do that
Right.
She's upset with the disease.
Speaker 5 (06:04):
Yeah.
Speaker 4 (06:06):
When it's happening, it may feel like she's upset
with you, but you know she's notoh, yeah, yeah, yeah, she's
been.
Speaker 5 (06:20):
Like I said, my head stays foggy just about all the
time now well, you are stuffyright now.
Speaker 4 (06:26):
Yeah, I mean, I can hear it and you know I text your
wife, right?
Speaker 5 (06:32):
Oh yeah.
Speaker 4 (06:34):
To ask how you're doing oh okay.
She said that you're fighting acough too.
Speaker 5 (06:39):
Yeah, oh yeah, I got a bad cough.
Speaker 4 (06:42):
Yeah, how long have you had that A couple?
Speaker 5 (06:44):
weeks.
Yeah.
How long have you had that?
A couple weeks yeah.
Speaker 4 (06:47):
What does hospice say about it?
Speaker 5 (06:51):
I don't think I mentioned it to her.
Of course you didn't.
Speaker 4 (06:56):
That's what you do.
Well, I'm going to text yourwife and ask her to just tell
them everything, even if youdon't want her to, because there
may be something they can do tohelp you.
Speaker 5 (07:08):
I don't know if I knew much for this cough.
I don't know.
Speaker 4 (07:15):
To me you sound like you have your head and chest
congested.
Speaker 5 (07:19):
I am yeah.
And I don't know if I had toput my oxygen on for about three
hours yesterday, and it'sanother thing.
I've been losing my breath realgood, real quick, I mean.
Speaker 4 (07:37):
It's been a minute before.
You've had to use that before,right.
Speaker 5 (07:40):
Yeah, I use it every night.
I put it on at night just tohave it there with me, but I
always take it off during theday.
But like yesterday, I had to.
She had dragged the machineover and, uh, I used it for
about three hours yesterday,three, maybe four hours
(08:02):
yesterday now, how long have youbeen using the oxygen at night?
Speaker 4 (08:05):
since you had hospice or before that?
Speaker 5 (08:08):
Since they brought it to me okay yeah, I remember
them bringing you.
Speaker 4 (08:16):
You remember what went on that last week of Jim's
life, where they brought me atruckload of stuff that I didn't
even know what it was for andapparently it was part of an
oxygen thing.
They just didn't bring the restof it.
Speaker 5 (08:26):
Yeah.
Speaker 4 (08:27):
But does it help you though.
Speaker 5 (08:30):
I can't tell if it does.
Yesterday it helped me.
Yesterday it helped me when Ilost my breath for so long.
Speaker 4 (08:42):
Now, did you lose it after trying to walk somewhere?
Yeah, how far did you walk?
Speaker 5 (08:47):
A couple of steps.
I can lose it just in a coupleof steps.
Bad.
Speaker 4 (08:54):
Is it worse than like when you were still driving and
that was happening?
Speaker 5 (09:00):
Is it worse than that ?
Speaker 4 (09:02):
Yeah, remember you were walking around the truck.
You couldn't walk around yourtruck, it's yeah it's probably
worse than that.
Speaker 5 (09:08):
Yeah, remember you were walking around the truck.
You couldn't walk around yourtruck.
Yeah, it's probably worse thanthat.
Speaker 4 (09:13):
And did you tell hospice that today?
Speaker 5 (09:15):
Yeah.
Speaker 4 (09:17):
You know what I'd be doing right now if I was sitting
next to you.
Speaker 5 (09:21):
Right Slapping me.
Speaker 4 (09:22):
Smacking you upside your head.
There's nothing they can do forit well, they need to know that
you know to record it.
And have you taken likedecongestion medicine, like oh?
Speaker 5 (09:34):
yeah, I mean I'm cough syrup for.
Yeah, but it's, you got thatcough syrup and it breaks it up
yeah, like it starts.
Speaker 4 (09:41):
I think it starts with an amucinex or something I
use uh, uh, robitussin.
Yeah, you should try.
Just lost to name it.
But what did I just say,mucinex?
Because that really will breakup.
Your Don't write it down.
I'm sending your wife a messageas we speak.
(10:03):
So I'm just going to say we'rein the middle of a Zoom meeting
and I asked everybody on Zoom ifit's okay if I record it on our
Zoom today, because Carrie'sbeen struggling.
So I'm going to let everybodyelse share about what you're
going through, carrie, and ifthey have any advice for you.
(10:26):
Besides, let yourself rest.
You know that's the hardestthing with you, I think, is you
don't want to give your body.
Speaker 5 (10:35):
I haven't been trying to do it all.
Yeah, I know we can't, theyknow I can't do it and I know I
can't do it.
Speaker 4 (10:44):
I think this all started when you were trying to
fix the washing machine and,yeah, all that.
Maybe you overdid it mentallyand physically.
Speaker 5 (10:55):
Yeah.
Speaker 4 (10:56):
So this is your body saying all right, buddy, it's
time to take a rest.
Speaker 5 (11:00):
Yeah.
Speaker 4 (11:02):
You know, you do look better now than you did before.
Speaker 5 (11:06):
Do I look what?
Speaker 4 (11:07):
You do look a little better than you did last week,
but I can hear that you'restuffed up.
Speaker 5 (11:12):
Yeah well, they got the washing machine and dryer
fixed, Got them hooked up.
They got two leaks in theserial line.
They got to come back and fix.
Everything is just about done.
Speaker 4 (11:26):
Well, that's good.
Your electric blow will go downnow because you're in a good
condition.
Speaker 5 (11:31):
Yeah.
Speaker 4 (11:33):
It's coming in.
So, hey, if there's coming in,we're recording today.
It's because we're going to useit as one of the podcasts,
because I kind of had Curry justtell us how he's been doing and
struggling with hishallucinations.
Still, how about delusions?
Speaker 5 (11:56):
Yeah, no, basically hallucinations and losing my
breath are the two bad thingsright now.
Speaker 4 (12:03):
And what are you hallucinating?
Speaker 5 (12:07):
It's not stupid stuff .
I wake up and I'll be talkingto, like this morning, and I was
talking to Doug.
Well, doug, I haven't seen Dougsince high school, but I
remember I was dreaming abouthim and then all of a sudden I
(12:31):
woke up and hollered hey, doug,come here.
And Linda said she always saidhoney, you're not, that's not
happening, stuff like that.
Speaker 4 (12:44):
Well, they're not scary, so that's good.
Speaker 5 (12:46):
Yeah.
Speaker 4 (12:47):
Right, I mean because before you would see.
Speaker 5 (12:53):
Oh yeah, I used to have some real spooky words.
Speaker 4 (12:56):
Yeah, yeah, so that's a positive to your
hallucinations.
Yeah, so.
Has anybody else have dealtwith that?
I'm just going to be a teachernow and if you want to share,
raise your hand and I willunmute you and stop playing your
(13:16):
video games.
I can tell who's playing.
That's usually um right, how,how about you?
Right?
Have you had dealt withanything like curry's talking
about?
Speaker 1 (13:28):
uh, no, I have not.
Fortunately I'm.
I don't have hallucinations.
I have other problems, butelusive.
You know, my problem usually isbeing up four or five times a
night due to incontinence, aswell as cramps from uh the
disease.
So so I I get my sleep one hourat a time.
Speaker 4 (13:51):
I remember Jim jumping out of bed because of
his leg cramps and now, lookingback, like I literally have a
video of him, he would go andput alcohol on his legs and now
I realize it was because he feltlike he had creepy crullies in
his legs and he was trying tokill it with alcohol.
Speaker 5 (14:10):
That's what we're saying real quick.
It's going on.
My incontinence had pretty muchstopped there for a couple
weeks and I thought, oh good,cool, you know that's going to
stay away now.
Well, no, it come back.
Speaker 3 (14:27):
And it was like, you know, that was a joyous thing.
And then afterwards there waslike a little, you know, in the
room they had refreshments andthings like that.
I'm still watching the baby andtalking.
And then there was a meetingafter church, meeting after the.
After that that took an hour.
And then there was anothermeeting that was going to be
(14:49):
with the attorney general ofrhode island, that that people
were encouraged to attend and Iwent home and I just like
collapsed and I mean I sleptlike just I just slept like
death.
I mean I was just like totallyout of it.
You know, it's like when thesame thing and the same thing,
(15:10):
it's like all.
It's like all that was all thatwas wonderful but it's great.
And then when I go to RocksteadyBoxing, sometimes when I, when
I go, I go wild with you know,get on that heavy bag and I
start, you know, beating,beating the heck out of it, and
I get to the point where it'slike I'm taking out all my
(15:33):
frustration.
You know it's it's a the name,you know, the name of the bag is
louis.
Beat it up, yeah, uh, you know.
And and then I do the you know,and I do another bag this other
bag and I do the speed bag andI I go, I'll go three straight
minutes punching a speed bag andthen on to the next station and
(15:59):
I come out of there exhausted.
And sometimes, if they controlthe program I don't want to make
this long-winded, but when theycontrol the program and they
make it more varied and they andthey incorporate a lot more
stretching and a lot more mentalchallenges and it and it's and
it's uh and it's like a um.
(16:20):
You know, it's like asmorgasbord of things that they
have you do a little bit of yoga, a little bit of tai chi, a lot
, lot of stretching maybe not somuch physical boxing and things
.
And challenge me on walking.
My biggest problem is walking astraight line and they do
(16:40):
things to help me with that.
And if it's a morecomprehensive approach to what's
wrong with people, I don't havethe same type of reaction
afterwards.
So it's, it's like.
It seems like everything issuch a you know, a fine line
balance.
You know, we went out the other, we went out and with a couple
(17:02):
the other day and I was a raginguh.
Whatever you call it beginswith a and ends with e, you know
, yeah we got.
Speaker 6 (17:13):
It really wasn't he thought he was thinking that way
.
Speaker 3 (17:16):
It wasn't so much expressing it well, the way as
aware as he was but I wasn'taware of it and it's just that
you know it's like those thingsare and and then you know,
sometimes I get, if I getoverdone, I get the shadow
people you know.
And I thought, get, if I getoverdone, I get the shadow
people you know.
And I thought I was done withthose shadow people.
(17:37):
I thought I was done with theshadow animals and the
hallucinations and stuff likethat.
But those can come back.
Speaker 4 (17:44):
Yeah, now when you're doing a rock steady boxing, is
it not them leading it?
Because I can imagine if I wasdoing it and they just let me
rip on one of those bags, Iwould keep punching it until my
arms I couldn't lift my armsanymore, which is in my head
Right, even when I walk, whichI'm like I used to walk a 10 K
five days a week and I'm likeI'm out here for the first time
(18:07):
while I'm out here, I'm going todo three and then I pay for it.
So is that kind of the samething with?
Speaker 3 (18:15):
the rocksteadyboxing.
Yeah, they control it, but uh,you know, I mean people just
take a break, they don't, theydon't go at it for three full
minutes like I do, like a maniac, you know, yeah.
Speaker 4 (18:32):
Yeah, but that's the fine line you're talking about
Like with you, dan.
Maybe is there a point when youexercise that you know I
probably should stop, but I'mgoing to keep going, and then
that makes you overstimulated.
Speaker 6 (18:47):
Well, it's interesting that I, back in,
like January and February, I didsome walks for the first time
since last summer and I wasappalled by how much I had lost
(19:09):
in that time and how overallweaker and dysfunctional my body
had become.
So I got the message and thecouple of people who do walking
with me you know fairly often,Fairly often they really got on
(19:43):
me and said you know, you've gotto set very low targets for
your, you know, for your walking, and so that was improving bit
(20:04):
frustrated because I was goingfrom, just by way of example,
maybe 30 seconds around anoutdoor to push myself more and
more and the next thing I knew Iwas lying at home on the couch
(20:26):
feeling like I didn't know whenI would be able to walk again.
And it's only come back veryslowly.
And so that's similar to whatother people are saying small
(20:51):
group of people who once everyweek or two get together for a
Zoom of that night's Celticsgame, and it's something we
really enjoy because invariablyit ends up not only being about
(21:15):
my symptoms but also just greatconversations about what's going
on in the world.
And we did that last night.
So that was last night and bythe time we got you know, back
to our starting point.
(21:35):
Um, and the celtics game wasabout to end, I I felt like I
couldn't go another inch yeah, Ithink we talked about this.
Speaker 2 (21:48):
We happened to have an appointment with Dan's
neurologist, dr Goodheart, likea week and a half ago, and we
were talking about thischallenge of how do you figure
out when you should stop.
And maybe, like you, tom Danwants to push through it, and
(22:10):
any other time in his life withexercise he would push through
it like no pain, no gain, rightkind of thing.
Um, and the thing that I thinkbecame apparent with the last
week and a half is that,unfortunately, it's not like
your body's going to say okay,that's it, you reach the limit,
(22:31):
stop.
You sometimes overdo it,unfortunately, and then you have
to pay, and so it is reallyfrustrating because, like,
you're wanting to push as muchas possible so as to get the
benefit of that, but then if youpush too much, then you're on
the couch the next day and intwo days and then, but there's
(22:55):
like nothing that exactly tellsyou, like there's no clear
answer necessarily but for me,one of the results of it is that
I get much more anxiety and I'masking myself when will I feel
(23:18):
better or when will I feel atleast improved, if you accept
that I may never feel better.
Speaker 6 (23:26):
So it becomes a psychological challenge as well
as a medical or physicalchallenge.
Speaker 2 (23:35):
Yeah, and we were a little bit.
You know Dan was mentioningthey're trying to get back both
between the weather and then themedication change in February,
just like there was a whole allthe exercise ground to a halt,
like stop.
So that in March we're tryingto help him gradually get back
to that.
And the first time he went fora walk it was literally for six
(23:56):
minutes and that was it short,short of breath, couldn't do
more than that.
And then it went up to 20minutes and then 27 minutes and
once even 32 minutes.
But then last week one day hedid 25 minutes and then he was
like on the couch flat out fortwo days.
So it's frustrating because,like you know, our minds want to
(24:20):
be like OK, now he did six, nowhe did 25.
Now he did 27.
We can keep going, but it's notnecessarily the case.
So that's the part.
I don't know if other peoplehave any advice about that.
Speaker 4 (24:34):
Go ahead, Tom.
Speaker 3 (24:35):
Well, I don't know about you, dan, but that sounds
like a great thing to gettogether for something like that
, you know, for the Celtics orwhatever, whatever team you like
, it could be anybody.
But that type of thing, it'ssocial and it's like there's a
you know automatically.
There's a sense of camaraderie,a sense of belonging.
(24:57):
It gives you all thesewonderful feelings and it's like
I've learned that, like I can'tthink of the word Stimulation.
Any sort of stimulation Doesn'tmatter if it's good or bad.
You know, if I go to the, I needto prepare for things.
(25:22):
I need to.
If I'm going out to play cardson a night, I need to make sure
that I don't do a lot of otherthings.
I need to make sure I get a'tdo a lot of other things.
I need to make sure I get a lotof rest that day and overload
myself, because if I do, I'mgoing to sundown.
Now you have to take intoaccount sundowning is really
going to play a role in that,and I don't know if you sundown
(25:46):
or sundown and just don'trealize.
It know, just like a, just likea toddler, my personality and
everything starts to deteriorateand then I'll become like a
toddler and I'll be.
You know, tantrum me a littlebit.
That's called out of make.
I'll coin my own phrase.
Speaker 4 (26:06):
But do you know you're?
Do you feel that you'rebecoming a?
Speaker 3 (26:13):
No, unfortunately, what's what's happened for me
lately is that I it's like Idon't know if it's a
hallucination I've had theseinner things going on, but it's
like I've been telling Dory,finally confided in her.
It's like I said, you know, Idon't think I's like.
I said, you know, I don't thinkI have Lewy body anymore, you
(26:36):
know, with all the overwhelmingevidence to the contrary.
You know, and it's like that'swhat we're dealing with, dan,
we're dealing with a mind thatdoesn't have a good executive
function and isn't able to setlimits.
People ask, ask well, don't youknow you're going too far and
it's like I haven't gone farenough on that heavy bag.
(26:59):
You know if that would be myanswer, you know, because I
don't have that.
You know it's time to stop.
They have to come over andthey'll stop me because I'm
going, I'm going at that thingand, uh, and, and, and, uh, uh,
it's, it's hard to do that.
It's like I need to.
You know, in some ways I'm likea child.
(27:21):
I need to be, I need to be, uh,taught, you know, you know what
this is too much and I need tobe able to listen to my, to my
wonderful wife here, when shesays you know, maybe maybe you
shouldn't be doing that, maybeyou need to be able to listen to
my wonderful wife here when shesays you know, maybe you
shouldn't be doing that, maybeyou need to rest, or remind me
we're going to be going out andyou need to stop and rest.
And because all of the thingsthat will aggravate so many
(27:44):
things, you know, aggravatethings and you know, a little
Parkinsonism comes on a littlebit, I get a little tremor in
the right hand and I getdisoriented and I don't know
what's going on and I ask herthe same question numerous times
and annoy her and seriously,that has a snowball effect too,
(28:12):
because if I'm doing that now,I'm creating tension with her
and I'm creating tension, that's.
You know you can cut with aknife sometimes, because you can
only be asked the same questionso many times before you get
frustrated.
I'm doing that to people andit's not intentional, it's just
the way it is.
Speaker 4 (28:33):
And, yeah, I, I need to, I need to rest more, I need
to my limits you know my limitslike right now I need, I need to
shut up I just I think that'sthe hardest thing is you, you,
you, like jeffy was just saying,you don't realize where your
limit is and you keep going andyou're going to push yourself
(28:54):
because that's what we have donewith ourselves all the time and
you just don't know it.
We're going to stop here forthis 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.
You, you, you, you.
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