June 25, 2024 • 33 mins
Welcome back to part 2 with our friend Ray .
In this episode, we tackle the complexities of managing Lewy body dementia, from handling tremors and balance issues to dealing with unique symptoms like a persistent runny nose. Ray shares how activities like Rocksteady Boxing have been transformative for him. We also explore various remedies for those pesky muscle cramps, including some unconventional and amusing methods. You'll leave with practical advice, heartfelt stories, and maybe even a new trick or two to try out. Join us for an episode filled with wisdom, community spirit, and a touch of humor.
Thank you all for your continued support and patience with us as we try really hard to get a new podcast done- hoping we get one a week but as you all know, Lewy and life sometimes get in the way. We know you all understand and support us anyway and for that we thank you!!! xoxo
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:05):
Welcome back to part two with our friend Ray.
Let me jump to the next thingwe wanted to talk about, and
you've said how you startedattending some of the Zoom
meetings, and I, for one, wantto thank you for always being
positive and making others laugh.
(00:27):
While we all support each other, we do have some characters in
the group and characters in agood way, saying that in a
really good way.
So how do you find the supportmeetings online?
Well, you said that your wifefound the meetings for you, but,
um, because you you mentionedthere's like 3 000 people that
(00:48):
are belong to the groups.
How come there's not?
Speaker 3 (00:50):
well, I guess that would be a pretty big zoom of 3
000 people yeah, yeah, Iwouldn't want to see the size of
the squares when you put it onthe world tool for that.
Speaker 1 (01:00):
But you're all welcome.
But I guess what I want to askyou, because we know, we've
heard you know people arenervous because they've never
done zoom.
Were you nervous at first?
Um, because I, I asked peopleand they well again my, my shy
disposition.
Speaker 3 (01:15):
When I first came to your group, I didn't know
anybody and, if you remember, Iprobably said two words other
than when you addressed me.
You would, you know, be kindenough to say ray, you're the
new person, you have anything tosay?
But other than that, eventhough I may have had comments
on what other people were saying, uh, I was not of the nature to
(01:35):
voice myself.
Now that I know everybody, uh,and they know me, uh, they're
the first ones to tell me Ray,shut up, I mean, it's that kind
of thing.
But no, I found very quicklythat the kind of people that
were there, number one, uh, theywere not afraid to talk about
(02:01):
their most innermost issues withtheir lives.
Like you always say, we talkabout everything from A to Z and
uh, uh, we're very open aboutit and, believe it or not,
everybody else in the group hasgone through it or some version
of it.
And, uh, denial is not part ofthe, the, the charter of the
group.
So, uh, we try to addresswhatever issues we have, share
(02:21):
information.
I mean, every time I come awayfrom a meeting and Linda and
Curry and Megan know this quitewell I have a little notebook
that my wife gave me and everymeeting I write down everybody's
name and if there's anythingnew that I learn about that
person or associations and so onand so forth, or any new
(02:43):
medicines that they bring upthat they read in an article, I
write them down and then afterthe meeting I pretty much do a
recap for my wife and, if it'sinteresting again, my wife's the
first one to hop on theInternet and research it.
Speaker 1 (02:59):
Yeah, I told you that Jim used a little purple book
he had and every day he wouldstart over and write everybody's
names down in the same thingsomething little, but I like
that you go upstairs and youshare with Rose.
Oh yeah, it keeps your mindgoing.
Speaker 3 (03:16):
I'm sure we're going to cover this, but I think it's
important that this is notsomething anyone needs to be
ashamed about.
We have a disease no differentthan somebody has cancer,
somebody has psoriasis, somebodyhas MS, somebody has, you know,
lost a limb and has adisability.
(03:39):
We just happen to encounterthis as a part of our lives.
So the first thing I wouldalways say is throw away this
thing about denial, because it'snot going to help you, it's
going to hinder you, yourrecovery and moving forward.
Always try to talk about it asopposed to not Remember.
(04:05):
I first had cancer before I hadthese conditions.
Back then it was like are wegoing to tell anybody?
We're not going to tell anybody.
Well, I found two things.
One, I would only talk about itto the people that I felt could
handle it, the people that Ifelt could handle it, meaning
(04:26):
you have to somewhat beselective, in that not everyone
either understands it or wantsto know about it.
Some people are skittish orcares to know about it.
But those who do I had noproblem whatsoever telling my in
those days, my eight-year-oldgrandchildren that I'm sick Of
course they do say well, are yougoing to die?
(04:48):
I mean, that's theirrelationship and I say, well, I
don't plan to.
I mean I don't want to lie tothem but at the same point I
don't want to give them negativefeelings that they're going to
be sad all the time Because, inall fairness, with prostate
cancer they consider it asuccess if you live five years.
(05:10):
So after I had prostate cancer,a lot of my mental attitude
changed because in my mind I wasliving on borrowed time.
So every year that went by andI had a good checkup with my
doctor, I had yearly visits.
I just said, well, that'sanother year under my belt.
And then when we got aroundyear eight, I started feeling
(05:33):
real good because then theystarted telling me well, based
on statistics, you've got lessthan a 5%, 3%, 2%, 1% chance of
recurring.
And now it's 2024, so I've beencancer-free for 14 years.
But all during that time I'vetried to keep a mental attitude
(05:56):
saying hey, you're already onborrowed time.
Meaning, if I were to dietomorrow, I still outbeat the
odds by 14 years.
The same thing with thisdisease.
Meaning, if I were to dietomorrow, I still out beat the
odds by 14 years.
All right, the same thing withthis disease.
You know, if I were to dietomorrow.
All I say is well, I had agreat life.
I had a great family.
You know I had people I caredabout and loved in my life, but
(06:19):
I'm still on borrowed time from2010.
That's a good way to look at itborrowed time from 2010.
Speaker 1 (06:23):
That's a good way to look at it.
Well, it's just like we say,you know, when new people come
in and they're all distraughtbecause the doctors give them
that five to seven year number,that's just the number.
Yeah, I mean Kari's still here.
Our friend Robin is like inyear eight or nine.
So it's just yeah, that's agood way, the good outlook you
(06:46):
had with your cancer.
Speaker 2 (06:48):
But now and it's like Mike Matherly is like in his
15th year.
Speaker 3 (06:53):
Yeah, Well, I look at it this way If I live another
20 years, I'll be 100 andsomething, so it's okay.
If I die, then Sorry.
Speaker 1 (07:06):
So I just wanted to ask you that about the Zoom.
Speaker 3 (07:09):
Oh, I think it's the greatest.
I tell everybody about it.
Like I say, I also belong toand I mentioned this many times
in our Zoom groups a thingcalled Rock Steady Boxing, which
I would recommend to some ofyour people the Lewy Body people
as well, even though they don'thave Parkinson's Plus.
It really helps in all the sameareas of physical balance,
(07:34):
agility, memory, all those kindsof things, and it also gives
you another group to interactwith.
It's true.
It also gives you another groupto interact with, it's true,
and unlike our group, which isscattered through Zoom, I
actually go to a gym and Iparticipate with a dozen people
every three times a week.
(07:54):
So you know it's also adifferent type of community.
Speaker 1 (07:58):
Yeah, so I'm going to jump to that because we were
going to ask you about that.
Okay ask you about that.
Okay, um, so can you tell uslike, how you found who, who
suggested rocksteadyboxing, andthen just how often you go and
well, I think, I think her nameis rosie rosina, my wife.
Speaker 3 (08:15):
It all goes back to my wife.
My wife is is a great caregiver, uh, having a background as a
teacher, which all the teachersI know that listen to this group
know.
They're all doers.
They follow up, they do theresearch, they evaluate and then
they recommend.
So she is kind enough to do allthat for me, and then she
(08:38):
proposes it to me and I'lleither agree or disagree, and
then, when she's done with me,I'll agree.
Speaker 1 (08:48):
You're a good husband .
She has taught you well.
Speaker 2 (08:53):
I'm glad you brought up that rock steady boxing
because I was going to.
I didn't realize it was alreadyin the script, but I was going
to ask about it too.
Speaker 3 (09:01):
Oh, you can ask any questions you want.
Speaker 2 (09:02):
I'm an open book.
So what do you do there?
I mean, do you actually box andhit?
Speaker 3 (09:07):
okay, I go three times a week monday, wednesday
and fridays in the afternoon,and the reason it's the
afternoon is purely a functionof the scheduling in the
gymnasium.
All right, it's actually not agymnasium, it's a martial arts
center and that's the availabletime they had when they wanted
to start this program.
And actually the way theystarted the program was there
(09:29):
was a woman who was takingmartial arts and then she was
diagnosed with Parkinson's andshe wanted to find out what kind
of exercises and stuff shecould do.
And then she found out throughthe Parkinson's association that
they have this formal coursecalled rock steady boxing.
So she proposed it to theperson who runs the martial arts
(09:51):
and he says, sure, let's justfind a day that's available.
You know that doesn't interferewith all the other martial arts
training and those are the days.
So I go uh 2, 30 to 3.30 onMonday, wednesdays or Fridays,
and what it consists of is theyactually have two levels of
group those that are more mobileand physical and those that are
(10:14):
less mobile and physical, andI'm in the lower group.
But what you start off with isyou sit around in a circle and
you basically just, you know,have some chit chat and say hi
and we have a word of the dayand she makes up some questions
and we go around and each answer.
But then after that they do andit varies, which is great.
(10:36):
It's not the same every timeswing your arms around, roll
your wrists around, get behindyour chair, stand on one foot.
Let's walk around the gym threetimes, let's do modified
jumping jacks, because most ofus can't jump in the air anymore
.
So the modified jumping jack,all right.
(10:59):
And then, after we call thatthe warmup, they'll have
actually exercises that arecalled workstations.
One workstation might beshooting a basketball into a
hoop, another one might behitting a speed bag with a boxer
, another one might be walking afoam balance beam and another
one might be standing and tryingto stand on this curved dome
(11:23):
rubber ball type thing withoutfalling off, and all those kinds
of things.
Then, so that's half of the hour.
Then you switch and youactually do put on boxing gloves
, and this is the part where,again, they're trying to do not
only the physical part, but thekind of strokes they give.
You always alternate betweenleft hand and right hand, so
(11:46):
that's where you make all thoseconnections in your brain.
They'll say we're going to dopattern number five, which
happens to be uh, jab, cross,uppercut, cross, hook.
So not only do you have toremember it and physically do it
, but you have to, your brainhas to do all those functions.
All right, so you know, andagain they vary the pattern.
(12:09):
So the most important thing, Ithink, is that whatever they do
each day, both in the the firsthalf hour, the second half hour,
is neither the same, otherwiseit becomes boring and dull yeah,
and right, as a test your brainand in between, just as we do
or we try to do in the zoomgroup.
We clown around a lot.
(12:29):
I mean, you know we all makejokes we're not afraid to talk
about we have this or we havethat, or what's your medication,
or how come you're on this andhow come I'm on that and you use
a patch and I use a pill andyou don't use it at all.
So between the two I think theycomplement each other.
You know one does not replacethe other and vice versa.
(12:51):
But I think at least I'm veryhappy with the regiment.
You know, four and a half hourswith Lewy Body Zoom a week and
I've got three hours a week withRock Steady Boxing.
Speaker 1 (13:06):
Yeah, I think that's.
I knew we wanted to ask youabout that.
And just while Ray was talking,I just Googled Rock Steady
Boxing near me and theirofficial site that asks you to
put in your zip code and howmany miles you're willing to
travel.
So I've been trying to getsomebody from the corporation to
(13:27):
come on, I'll try again.
Speaker 3 (13:30):
Yeah well, you just mentioned something very
important.
This is not an ad hoc type ofgroup where everybody does it
different.
I actually had to send somebodyfrom the martial arts center to
I think it was Illinois for aweek of training and that became
I forget they gave her a title,yeah, but then she was
(13:52):
certified to represent theprogram within that particular
athletic activity and then shewas also authorized to be able
to train the other coaches to dothe same thing.
You have to have at least onecertified people by the
organization which again is partunder the umbrella of
(14:15):
Parkinson's Right, or else youcan't do it.
So it's not like I think I'llopen a gym and we'll get
Parkinson's patients.
You have to be trained andcertified.
Speaker 1 (14:24):
Yeah Well that be trained and certified.
Yeah Well, that's good to know.
So hold on a second.
I just lost my train of thought.
Speaker 3 (14:34):
Remember, Linda, it's Curry and I that have the
disease.
Speaker 1 (14:38):
We've had this discussion many times recording.
I'll say what was that person'sname and Curry will be like oh,
that was Joanne and she's fromblah blah, blah, blah blah.
And I'm like who, which one?
What?
Speaker 3 (14:49):
Yeah, I do that all the time with my wife.
If I forget something, I blameit on Louie.
When she forgets something, Isay which one of us has the
Louie?
So of course her answer is well, I have Louisa the sister.
Speaker 1 (15:05):
Yeah, yeah, many spouses are called Louisa for
sure.
But before we jump into yournext question, carrie, to jump
back with the meetings, that youcan come like the Monday any of
the meetings if you want tocome in and just listen.
(15:27):
You know people are nervous atfirst and once they get to hear
everybody talking I think ninetimes out of ten their camera
eventually goes on.
Speaker 3 (15:37):
Yeah, you don't have to have the screen on.
Yeah, you're shy, mm-hmm.
Speaker 1 (15:42):
Or you just say we have people that are having a
bad Louis day, but they justwanted to hear.
Speaker 3 (15:46):
That's right, you don't feel well, but you still
want to participate.
Speaker 1 (15:50):
Right, so you attend the Monday Friday meetings which
are for people with Louis body,their caregivers, or you're
seeking a diagnosis?
And then Thursday afternoonwith just the Louis buddies,
those with Louisie Buddy.
I wanted to know if you canshare with our listeners what
you see the differences are inthose meetings.
(16:11):
Name a thing or two that youfind most powerful about each
group.
Speaker 3 (16:19):
Okay, well, the one with the caregivers is great
because you can get two sides ofthe story, meaning sometimes
people tell what they wantpeople to hear but it may not
actually was truly happening,and usually the caregiver will
correct them and say he's notquite accurate or he's full
(16:41):
baloney.
All right, which is importantthat we, we be truthful to each
other.
Uh, and the thursday group,it's just us that have the
disease, and sometimes whathappens is we may talk about
things that are a little morepersonal or may actually be
involved in our relationshipwith our caregiver, and, uh, we
(17:04):
would be hesitant to do that inthe other group.
And then sometimes we actuallytalk about the health and
well-being of the caregiverthemselves, because they go
through quite a strain puttingup with us.
Now, my wife tends to be alittle even-keeled and jovial to
start off with, but I mean, Icould see I could be a real
(17:26):
irritant if I had a spouse thatwasn't the same nature as she is
, because, uh, it would justdrive that person crazy.
So so you know the the thursdaygroup, I think we get a little
more intimate as to our realinner feelings or difficulties
and how we feel good or bad, onhow it's affecting our spouses
(17:50):
or our extended family you know,relatives, kids, etc.
The future of our lives andtheir lives, which you know you
may want, want to jump right inwith your spouse about.
So so yeah, there's things wetalk about and we've all agreed
on this that we, as people who ayear ago didn't know each other
(18:12):
, know more about each otherthan a lot of our family members
, and I think it's a testamentto how welcoming and warm and
supportive your group is.
Speaker 1 (18:24):
Yeah, yeah, we say, once you come in, you're stuck
with us.
But you really do become like afamily, and when somebody
doesn't show up for a meeting ortwo, somebody's always reaching
out to that person.
Speaker 3 (18:39):
It's usually the first thing the people say is
where's so-and-so today?
Oh, you can get the meetinggoing If you're not there in the
first five minutes.
If I want to know why you'renot there yeah, we don't hound
people.
Speaker 1 (18:50):
We just like okay, somebody's gonna check in just
to make sure everything's good,and you know, usually it's.
I just think it's funny.
Nemi from from ireland will sayI'm going on holiday for two
weeks, so don't stress, becausewe've always checked in.
All right, kerr, you go.
Next question.
Speaker 2 (19:07):
Hey Ray, you're basically in the beginning of
your Lewy body dementiadiagnosis.
Can you share with others howyou've stayed positive, even
after getting your diagnosis orwhile you were seeking your
diagnosis?
You know, as you all know, Ialways say you have a lot of
good life left, that there's alot of good life left after
diagnosis.
You know, as y'all know, Ialways say you have a lot of
good life left, that there's alot of good life left after
(19:29):
diagnosis.
We just learn to live itdifferently now.
So can you respond to thatfirst question?
Speaker 3 (19:35):
Sure, I'll be happy to.
Well, I think the first thing,uh, and being successful moving
forward is I mentioned itearlier is this thing with
denial.
Yeah, if there's one thing I'velearned in my life's
experiences is that number onelife is not fair, so don't use
(20:00):
the.
It's not fair.
I got this.
I'm not fair.
I got that.
How come this person didn't getit and I got it?
You know I'm going to use asomewhat crude term, but get
over it.
All right, it is what it is, uh.
The second one is uh, bad thingsdo happen to good people.
(20:22):
Meaning, I think we all knowpeople that are angels
personality-wise andunfortunately they're angels in
reality.
Now, all right.
And at the same point, we knowpeople that are real stinkers
and unfortunately they're stillon the earth every day.
And you know, that goes withthe first one life isn't always
fair.
(20:47):
The first one life isn't alwaysfair.
But if you come to grips withthose two, then the third one I
try to go by is if I have tomove forward on a daily basis,
do I want to hang around peopleand activities and things that
have negative energy or thingsthat have positive energy?
Because negative energy there'splenty of it out there.
I mean, just listen to the newsevery night, all right, or
listen to stories from you knowrelatives that have sick other
(21:11):
people, but I always try to lookat whatever, whatever little.
I'm the half full glass personversus the half empty glass
person, all right, and it mayonly be a small amount of
difference between the two, butI think it means a heck of a lot
to how you go through each andevery day.
Speaker 1 (21:33):
Well said, my friend, Well said.
So the last thing I want totalk about is last weekend I got
to go give Ray a hug in person,him and his wife You're a great
hugger, by the way.
He's like, sorry, I'm a hugger.
I'm like, oh, our family's ahugger too.
So I went right in and I justwanted to share something that
(21:55):
both of us were a littleperplexed about.
But now that you've told theRocksteady boxing story what
happens there, I think what I'mabout to say it explains why
this happened.
So Ray has a ping pong table inthe basement and he was telling
me about things and he wantedto show me where he sits for
(22:17):
Zoom, because he's got a reallycool Abbey Road backdrop like
the Beatles, Right, yeah, theBeatles walking across the Abbey
Road, Is that?
Speaker 3 (22:25):
Abbey Road Abbey Road backdrop.
Like the Beatles, right, yeah,beatles walking across the Abbey
Road.
Speaker 1 (22:29):
Yeah, except he has animals on him, but that's
another story, right?
Speaker 3 (22:33):
You didn't expect anything normal, did you?
No, no.
Speaker 1 (22:37):
So I can tell you a little bit about the nail polish
inside joke, because I sat downat the desk where he sits at
and I was like why do you havenail polish at your desk?
So that's so.
Speaker 3 (22:49):
It just became a joke well, that's because my wife
shares the same workstation oh,is that the story you're telling
, okay?
Speaker 1 (22:55):
that's what I'm using this week but anyway, he was
telling me you he had mentionedhe plays ping pong.
And what did I say to you?
What did I say to you First?
Speaker 3 (23:07):
thing out of her mouth is I'll play you and I'm
going to make you cry like ababy.
Speaker 1 (23:13):
I think it was.
I thought it was scream like agirl.
Was that what it was?
It was something.
Speaker 3 (23:20):
My Louis body.
I forgot it already, butneedless to say, for the next
many hours that we played, shepersistently tried to accomplish
that fact.
Speaker 1 (23:30):
And I was a girl between two older boys and
brothers and two youngerbrothers, so I learned how to
play ping pong.
Speaker 3 (23:38):
We had a great time.
Speaker 1 (23:39):
We really did have a great time, and what we realized
is when both of us stoppedtalking and we tried to play.
We played terribly and the morewe talked while we were playing
, we were very.
Speaker 3 (23:52):
We had long rallies and we were like what is going
on?
I didn't notice it at first,but when it broke up and you
know, my wife was sitting on theside she doesn't play pong, so
she was just talking to us.
So we'd have like a three-waytalk and as long as we were
talking we were doing fine.
As soon as we stopped talkingand concentrated on the game,
(24:15):
our quality of play went down.
Speaker 1 (24:17):
Yeah, yeah, it was very interesting.
But now that you told theRocksteady Boxing you know
that's probably helping yourmind with all that.
It was just very strange.
It was very noticeable to methat when we both stopped
talking for a minute we werelike what the heck?
Speaker 3 (24:35):
Well, the next time we play we'll become like one of
those lab rat experiments.
Speaker 1 (24:40):
You know, we'll get somebody to take notes and
analyze it and in Ray's defensehe only screamed like a girl,
like three times.
I'm just saying.
Speaker 3 (24:50):
I was trying to think of a way to describe the way
you play, and the best word Icould come up with was tenacious
.
How's that?
Is that a good word?
Speaker 1 (25:00):
It was called survival growing up, yeah, you
know, between all the brothersit was called survival.
Speaker 3 (25:05):
growing up, you know, between all the brothers She'll
play nice until you feelcomfortable and then she'll slam
you and say, gotcha.
Or I'd be like, oh, sorry, yeahright, she'll slam it and then
she'll give you that humble bitlike oh, I really didn't mean to
do it that hard.
Speaker 1 (25:26):
Meanwhile, in the back of her mind, she's saying
next time harder, next timeharder.
And not only that.
Speaker 3 (25:30):
I mean, we did more than just play ping pong.
We took some silly picturestogether and we had hours in
between of conversations, thethree of us, about everything
under the sun.
I think it's great.
I mean, I don't know about fromLinda's standpoint, but we just
(25:50):
immediately opened up to eachother and any topic that popped
into our minds was fair game.
Speaker 1 (25:58):
Yeah, it was a pretty amazing day.
I'll be back, so keeppracticing, I'm telling you.
Speaker 3 (26:04):
Well, the problem is I got nobody to practice with,
so when we meet it's acombination of practice and
competition, okay.
Speaker 1 (26:13):
All right, it's a promise, I'll be back.
Okay, promise or a warning, Idon't know which.
Yes, all right, kerry, you wantto ask them this last question.
Yeah, ray, do you have anyfinal words?
You'd to ask him this lastquestion.
Speaker 2 (26:26):
Yeah, Ray.
Do you have any final wordsyou'd like to share with our
listeners?
Speaker 3 (26:33):
Try to stay positive.
If you don't, you're your ownworst enemy.
I mean, let's be honest in lifeno one's going to look out more
for you than yourself.
I mean, as much as we love ourloved ones and stuff, they have
their own lives to live and theyhave their own issues that
they're going to encounter, etc.
So you know it used to be anold proverb I don't know if it's
(26:58):
true or not, but you know godhelps those that help themselves
.
So you know, if you do nothing,don't expect anything to change
.
If you try something and youdon't like it, you can always
stop it.
You try something and you likeit, you can always continue it.
And again, if you want to bepart of the pity party and sit
around and just mope and cry andfeel sorry for yourself, you're
(27:20):
welcome to.
But I chose a different path.
Yeah, and now?
Speaker 1 (27:26):
we're stuck.
Speaker 3 (27:27):
I like laughter, I like silliness.
Uh, if you're ever around ourhouse and linda has been my wife
and I constantly have stupidbanter, you know like she'll say
a word and I'll say it back,but it's a totally different
word with.
You know it's a synonym typeword but it's totally, totally
different word.
It's a synonym type word butit's totally different meaning
(27:47):
and so on and so forth, and Ithink that helps both her and I
get through the issue.
Don't be afraid to talk aboutyour condition when I go out.
If I'm having difficulty goingthrough a doorway, I just say oh
, excuse me, I'm a little slow,I have Parkinson's.
I don't even hide it, I justtell people slam it, because if
(28:09):
you tell them, there's a chancethey could be understanding and
compassionate.
If you don't tell them, theyjust think you're a stumbling
old geezer.
There's two sides, but you'vegot to get over the fact that
you have it.
There's no stigma associatedwith it.
Speaker 1 (28:27):
Yeah, we've come a long way in society about all
those kind of things, which I'mthankful for.
And before Curry starts signingoff thank you again, Ray, for
coming on, and I will be back.
Speaker 3 (28:43):
Oh, I do want to make one more statement, if I could,
to all those listening.
Linda and Curry have all mypersonal information as far as
phone number and Facebook.
I do a lot of messaging onFacebook.
If there's something you wantto know more about or you just
want to contact me in general,please contact either of them
(29:05):
and I've given them, you know,complete permission to give it.
Um, and also I want to mentionsomething, uh, before I was
diagnosed and again I justthought I was getting old and
slower I used to do a lot of tvand maybe some puzzles for the
brain.
(29:25):
Obviously, tv is not veryexercising and puzzles, as fun
as they are, they're kind ofmonotonous after you've done 12
in a row and there's 750 to1,000 pieces.
So recently my wife has gottenme on Facebook.
(29:46):
I've never been on Facebook inmy whole life.
When I say recently, maybe ninemonths ago well, I have also
have a facebook group, of whicha lot of people, including those
from our zoom group I knowcurry belongs to it, a few
others in the group, uh, thatbelong to it.
Well, I also use Facebook notonly for the enjoyment of
(30:08):
putting things out there that Ithink other people might enjoy
reading about, because all thecontent is generated via me.
Either I borrow it fromsomebody else or the original.
But when I find people thatrespond to something I post, in
many cases I contact them and ina few cases I've actually
(30:31):
developed what I'll call maybewe used to have long-distance
pen pals.
People used to write.
Well, I'll call themlong-distance friendships.
I have a gentleman in Spainthat I've never met, but we send
the equivalent of Christmascards to each other.
You know what I'm saying.
I have two people in EnglandOne's an artist and one's the
(30:54):
mother of a son who's a musicianPeople in Australia.
So my wife kind of marvels atme because most people, I guess,
just look at Facebook and clickon it and send something back,
but it's like you're sending itinto dead space.
You never get any feedback.
But I will go out of my way inmany cases to respond to anybody
(31:16):
who participates and those whowant to engage further.
I've met a lot of great people.
So again, that helps in thepositiveness, meaning you're not
just killing time.
Instead of doing TV or doingFacebook, I'm actually trying to
interact and learn and be partof these people's lives as well
(31:37):
as they want to be part of mine.
Yeah, that's great.
Speaker 2 (31:42):
You know, ray when I look at you, uh, they always say
that the sooner you'rediagnosed after your symptoms
start, the better your journeywill be.
Yep, and I think you're.
I think you're living thatright now.
Speaker 3 (31:57):
I really do well, when I wake up in the morning
and this is the absolute truththere's two things I say to
myself mentally.
I don't say it outside verbally, but mentally.
First thing I say is thank you,god, for another beautiful day,
because I'm here, right and so.
And then after I get up and I'mstanding, I say well, I'm still
(32:18):
vertical today and that's theway I start my day.
So if I got two things goingfor me right off the bat, the
rest of the day is going to beeasy, yeah.
Speaker 2 (32:29):
That's right, that's good.
Well, folks, that's all we havetime for this week.
Ray, I want to thank you againfor coming on and sharing your
experiences and giving words ofencouragement to our listeners.
We want all of you to be a partof our podcast series and share
your thoughts on topics youwant to hear about.
Speaker 1 (32:46):
we'd love to hear your feedback on these things
yep, and thanks again, ray uhfor coming on um.
And my pleasure I had a lot offun.
Yeah, and we'll be back.
Yeah, we'll practice our pingpong together and, as always, if
you want to send suggestions orcomments to either our email at
louis body rollercoaster, atgmailcom or on one of our
(33:10):
facebook pages or throughmessenger, you know you can
always send messages that wayand we really can't thank you
all enough for supporting us tokeeping this podcast going as we
continue to share and learnfrom one another and meet some
pretty amazing people.
Speaker 2 (33:27):
And folks.
As always, we will continue topost the link for the podcast
each week for you in my Facebookgroup, Our Journey with Lewy
Body Dimension, and then ourLewy Body Roller Coaster podcast
group, as well as many othergroups, so thanks for joining us
.
Speaker 1 (33:41):
Until next week.
Speaker 2 (33:42):
This is Linda and Curry signing off.
Welcome back to part two with our friend Ray.
Let me jump to the next thingwe wanted to talk about, and
you've said how you startedattending some of the Zoom
meetings, and I, for one, wantto thank you for always being
positive and making others laugh.
(00:27):
While we all support each other, we do have some characters in
the group and characters in agood way, saying that in a
really good way.
So how do you find the supportmeetings online?
Well, you said that your wifefound the meetings for you, but,
um, because you you mentionedthere's like 3 000 people that
(00:48):
are belong to the groups.
How come there's not?
Speaker 3 (00:50):
well, I guess that would be a pretty big zoom of 3
000 people yeah, yeah, Iwouldn't want to see the size of
the squares when you put it onthe world tool for that.
Speaker 1 (01:00):
But you're all welcome.
But I guess what I want to askyou, because we know, we've
heard you know people arenervous because they've never
done zoom.
Were you nervous at first?
Um, because I, I asked peopleand they well again my, my shy
disposition.
Speaker 3 (01:15):
When I first came to your group, I didn't know
anybody and, if you remember, Iprobably said two words other
than when you addressed me.
You would, you know, be kindenough to say ray, you're the
new person, you have anything tosay?
But other than that, eventhough I may have had comments
on what other people were saying, uh, I was not of the nature to
(01:35):
voice myself.
Now that I know everybody, uh,and they know me, uh, they're
the first ones to tell me Ray,shut up, I mean, it's that kind
of thing.
But no, I found very quicklythat the kind of people that
were there, number one, uh, theywere not afraid to talk about
(02:01):
their most innermost issues withtheir lives.
Like you always say, we talkabout everything from A to Z and
uh, uh, we're very open aboutit and, believe it or not,
everybody else in the group hasgone through it or some version
of it.
And, uh, denial is not part ofthe, the, the charter of the
group.
So, uh, we try to addresswhatever issues we have, share
(02:21):
information.
I mean, every time I come awayfrom a meeting and Linda and
Curry and Megan know this quitewell I have a little notebook
that my wife gave me and everymeeting I write down everybody's
name and if there's anythingnew that I learn about that
person or associations and so onand so forth, or any new
(02:43):
medicines that they bring upthat they read in an article, I
write them down and then afterthe meeting I pretty much do a
recap for my wife and, if it'sinteresting again, my wife's the
first one to hop on theInternet and research it.
Speaker 1 (02:59):
Yeah, I told you that Jim used a little purple book
he had and every day he wouldstart over and write everybody's
names down in the same thingsomething little, but I like
that you go upstairs and youshare with Rose.
Oh yeah, it keeps your mindgoing.
Speaker 3 (03:16):
I'm sure we're going to cover this, but I think it's
important that this is notsomething anyone needs to be
ashamed about.
We have a disease no differentthan somebody has cancer,
somebody has psoriasis, somebodyhas MS, somebody has, you know,
lost a limb and has adisability.
(03:39):
We just happen to encounterthis as a part of our lives.
So the first thing I wouldalways say is throw away this
thing about denial, because it'snot going to help you, it's
going to hinder you, yourrecovery and moving forward.
Always try to talk about it asopposed to not Remember.
(04:05):
I first had cancer before I hadthese conditions.
Back then it was like are wegoing to tell anybody?
We're not going to tell anybody.
Well, I found two things.
One, I would only talk about itto the people that I felt could
handle it, the people that Ifelt could handle it, meaning
(04:26):
you have to somewhat beselective, in that not everyone
either understands it or wantsto know about it.
Some people are skittish orcares to know about it.
But those who do I had noproblem whatsoever telling my in
those days, my eight-year-oldgrandchildren that I'm sick Of
course they do say well, are yougoing to die?
(04:48):
I mean, that's theirrelationship and I say, well, I
don't plan to.
I mean I don't want to lie tothem but at the same point I
don't want to give them negativefeelings that they're going to
be sad all the time Because, inall fairness, with prostate
cancer they consider it asuccess if you live five years.
(05:10):
So after I had prostate cancer,a lot of my mental attitude
changed because in my mind I wasliving on borrowed time.
So every year that went by andI had a good checkup with my
doctor, I had yearly visits.
I just said, well, that'sanother year under my belt.
And then when we got aroundyear eight, I started feeling
(05:33):
real good because then theystarted telling me well, based
on statistics, you've got lessthan a 5%, 3%, 2%, 1% chance of
recurring.
And now it's 2024, so I've beencancer-free for 14 years.
But all during that time I'vetried to keep a mental attitude
(05:56):
saying hey, you're already onborrowed time.
Meaning, if I were to dietomorrow, I still outbeat the
odds by 14 years.
The same thing with thisdisease.
Meaning, if I were to dietomorrow, I still out beat the
odds by 14 years.
All right, the same thing withthis disease.
You know, if I were to dietomorrow.
All I say is well, I had agreat life.
I had a great family.
You know I had people I caredabout and loved in my life, but
(06:19):
I'm still on borrowed time from2010.
That's a good way to look at itborrowed time from 2010.
Speaker 1 (06:23):
That's a good way to look at it.
Well, it's just like we say,you know, when new people come
in and they're all distraughtbecause the doctors give them
that five to seven year number,that's just the number.
Yeah, I mean Kari's still here.
Our friend Robin is like inyear eight or nine.
So it's just yeah, that's agood way, the good outlook you
(06:46):
had with your cancer.
Speaker 2 (06:48):
But now and it's like Mike Matherly is like in his
15th year.
Speaker 3 (06:53):
Yeah, Well, I look at it this way If I live another
20 years, I'll be 100 andsomething, so it's okay.
If I die, then Sorry.
Speaker 1 (07:06):
So I just wanted to ask you that about the Zoom.
Speaker 3 (07:09):
Oh, I think it's the greatest.
I tell everybody about it.
Like I say, I also belong toand I mentioned this many times
in our Zoom groups a thingcalled Rock Steady Boxing, which
I would recommend to some ofyour people the Lewy Body people
as well, even though they don'thave Parkinson's Plus.
It really helps in all the sameareas of physical balance,
(07:34):
agility, memory, all those kindsof things, and it also gives
you another group to interactwith.
It's true.
It also gives you another groupto interact with, it's true,
and unlike our group, which isscattered through Zoom, I
actually go to a gym and Iparticipate with a dozen people
every three times a week.
(07:54):
So you know it's also adifferent type of community.
Speaker 1 (07:58):
Yeah, so I'm going to jump to that because we were
going to ask you about that.
Okay ask you about that.
Okay, um, so can you tell uslike, how you found who, who
suggested rocksteadyboxing, andthen just how often you go and
well, I think, I think her nameis rosie rosina, my wife.
Speaker 3 (08:15):
It all goes back to my wife.
My wife is is a great caregiver, uh, having a background as a
teacher, which all the teachersI know that listen to this group
know.
They're all doers.
They follow up, they do theresearch, they evaluate and then
they recommend.
So she is kind enough to do allthat for me, and then she
(08:38):
proposes it to me and I'lleither agree or disagree, and
then, when she's done with me,I'll agree.
Speaker 1 (08:48):
You're a good husband .
She has taught you well.
Speaker 2 (08:53):
I'm glad you brought up that rock steady boxing
because I was going to.
I didn't realize it was alreadyin the script, but I was going
to ask about it too.
Speaker 3 (09:01):
Oh, you can ask any questions you want.
Speaker 2 (09:02):
I'm an open book.
So what do you do there?
I mean, do you actually box andhit?
Speaker 3 (09:07):
okay, I go three times a week monday, wednesday
and fridays in the afternoon,and the reason it's the
afternoon is purely a functionof the scheduling in the
gymnasium.
All right, it's actually not agymnasium, it's a martial arts
center and that's the availabletime they had when they wanted
to start this program.
And actually the way theystarted the program was there
(09:29):
was a woman who was takingmartial arts and then she was
diagnosed with Parkinson's andshe wanted to find out what kind
of exercises and stuff shecould do.
And then she found out throughthe Parkinson's association that
they have this formal coursecalled rock steady boxing.
So she proposed it to theperson who runs the martial arts
(09:51):
and he says, sure, let's justfind a day that's available.
You know that doesn't interferewith all the other martial arts
training and those are the days.
So I go uh 2, 30 to 3.30 onMonday, wednesdays or Fridays,
and what it consists of is theyactually have two levels of
group those that are more mobileand physical and those that are
(10:14):
less mobile and physical, andI'm in the lower group.
But what you start off with isyou sit around in a circle and
you basically just, you know,have some chit chat and say hi
and we have a word of the dayand she makes up some questions
and we go around and each answer.
But then after that they do andit varies, which is great.
(10:36):
It's not the same every timeswing your arms around, roll
your wrists around, get behindyour chair, stand on one foot.
Let's walk around the gym threetimes, let's do modified
jumping jacks, because most ofus can't jump in the air anymore
.
So the modified jumping jack,all right.
(10:59):
And then, after we call thatthe warmup, they'll have
actually exercises that arecalled workstations.
One workstation might beshooting a basketball into a
hoop, another one might behitting a speed bag with a boxer
, another one might be walking afoam balance beam and another
one might be standing and tryingto stand on this curved dome
(11:23):
rubber ball type thing withoutfalling off, and all those kinds
of things.
Then, so that's half of the hour.
Then you switch and youactually do put on boxing gloves
, and this is the part where,again, they're trying to do not
only the physical part, but thekind of strokes they give.
You always alternate betweenleft hand and right hand, so
(11:46):
that's where you make all thoseconnections in your brain.
They'll say we're going to dopattern number five, which
happens to be uh, jab, cross,uppercut, cross, hook.
So not only do you have toremember it and physically do it
, but you have to, your brainhas to do all those functions.
All right, so you know, andagain they vary the pattern.
(12:09):
So the most important thing, Ithink, is that whatever they do
each day, both in the the firsthalf hour, the second half hour,
is neither the same, otherwiseit becomes boring and dull yeah,
and right, as a test your brainand in between, just as we do
or we try to do in the zoomgroup.
We clown around a lot.
(12:29):
I mean, you know we all makejokes we're not afraid to talk
about we have this or we havethat, or what's your medication,
or how come you're on this andhow come I'm on that and you use
a patch and I use a pill andyou don't use it at all.
So between the two I think theycomplement each other.
You know one does not replacethe other and vice versa.
(12:51):
But I think at least I'm veryhappy with the regiment.
You know, four and a half hourswith Lewy Body Zoom a week and
I've got three hours a week withRock Steady Boxing.
Speaker 1 (13:06):
Yeah, I think that's.
I knew we wanted to ask youabout that.
And just while Ray was talking,I just Googled Rock Steady
Boxing near me and theirofficial site that asks you to
put in your zip code and howmany miles you're willing to
travel.
So I've been trying to getsomebody from the corporation to
(13:27):
come on, I'll try again.
Speaker 3 (13:30):
Yeah well, you just mentioned something very
important.
This is not an ad hoc type ofgroup where everybody does it
different.
I actually had to send somebodyfrom the martial arts center to
I think it was Illinois for aweek of training and that became
I forget they gave her a title,yeah, but then she was
(13:52):
certified to represent theprogram within that particular
athletic activity and then shewas also authorized to be able
to train the other coaches to dothe same thing.
You have to have at least onecertified people by the
organization which again is partunder the umbrella of
(14:15):
Parkinson's Right, or else youcan't do it.
So it's not like I think I'llopen a gym and we'll get
Parkinson's patients.
You have to be trained andcertified.
Speaker 1 (14:24):
Yeah Well that be trained and certified.
Yeah Well, that's good to know.
So hold on a second.
I just lost my train of thought.
Speaker 3 (14:34):
Remember, Linda, it's Curry and I that have the
disease.
Speaker 1 (14:38):
We've had this discussion many times recording.
I'll say what was that person'sname and Curry will be like oh,
that was Joanne and she's fromblah blah, blah, blah blah.
And I'm like who, which one?
What?
Speaker 3 (14:49):
Yeah, I do that all the time with my wife.
If I forget something, I blameit on Louie.
When she forgets something, Isay which one of us has the
Louie?
So of course her answer is well, I have Louisa the sister.
Speaker 1 (15:05):
Yeah, yeah, many spouses are called Louisa for
sure.
But before we jump into yournext question, carrie, to jump
back with the meetings, that youcan come like the Monday any of
the meetings if you want tocome in and just listen.
(15:27):
You know people are nervous atfirst and once they get to hear
everybody talking I think ninetimes out of ten their camera
eventually goes on.
Speaker 3 (15:37):
Yeah, you don't have to have the screen on.
Yeah, you're shy, mm-hmm.
Speaker 1 (15:42):
Or you just say we have people that are having a
bad Louis day, but they justwanted to hear.
Speaker 3 (15:46):
That's right, you don't feel well, but you still
want to participate.
Speaker 1 (15:50):
Right, so you attend the Monday Friday meetings which
are for people with Louis body,their caregivers, or you're
seeking a diagnosis?
And then Thursday afternoonwith just the Louis buddies,
those with Louisie Buddy.
I wanted to know if you canshare with our listeners what
you see the differences are inthose meetings.
(16:11):
Name a thing or two that youfind most powerful about each
group.
Speaker 3 (16:19):
Okay, well, the one with the caregivers is great
because you can get two sides ofthe story, meaning sometimes
people tell what they wantpeople to hear but it may not
actually was truly happening,and usually the caregiver will
correct them and say he's notquite accurate or he's full
(16:41):
baloney.
All right, which is importantthat we, we be truthful to each
other.
Uh, and the thursday group,it's just us that have the
disease, and sometimes whathappens is we may talk about
things that are a little morepersonal or may actually be
involved in our relationshipwith our caregiver, and, uh, we
(17:04):
would be hesitant to do that inthe other group.
And then sometimes we actuallytalk about the health and
well-being of the caregiverthemselves, because they go
through quite a strain puttingup with us.
Now, my wife tends to be alittle even-keeled and jovial to
start off with, but I mean, Icould see I could be a real
(17:26):
irritant if I had a spouse thatwasn't the same nature as she is
, because, uh, it would justdrive that person crazy.
So so you know the the thursdaygroup, I think we get a little
more intimate as to our realinner feelings or difficulties
and how we feel good or bad, onhow it's affecting our spouses
(17:50):
or our extended family you know,relatives, kids, etc.
The future of our lives andtheir lives, which you know you
may want, want to jump right inwith your spouse about.
So so yeah, there's things wetalk about and we've all agreed
on this that we, as people who ayear ago didn't know each other
(18:12):
, know more about each otherthan a lot of our family members
, and I think it's a testamentto how welcoming and warm and
supportive your group is.
Speaker 1 (18:24):
Yeah, yeah, we say, once you come in, you're stuck
with us.
But you really do become like afamily, and when somebody
doesn't show up for a meeting ortwo, somebody's always reaching
out to that person.
Speaker 3 (18:39):
It's usually the first thing the people say is
where's so-and-so today?
Oh, you can get the meetinggoing If you're not there in the
first five minutes.
If I want to know why you'renot there yeah, we don't hound
people.
Speaker 1 (18:50):
We just like okay, somebody's gonna check in just
to make sure everything's good,and you know, usually it's.
I just think it's funny.
Nemi from from ireland will sayI'm going on holiday for two
weeks, so don't stress, becausewe've always checked in.
All right, kerr, you go.
Next question.
Speaker 2 (19:07):
Hey Ray, you're basically in the beginning of
your Lewy body dementiadiagnosis.
Can you share with others howyou've stayed positive, even
after getting your diagnosis orwhile you were seeking your
diagnosis?
You know, as you all know, Ialways say you have a lot of
good life left, that there's alot of good life left after
diagnosis.
You know, as y'all know, Ialways say you have a lot of
good life left, that there's alot of good life left after
(19:29):
diagnosis.
We just learn to live itdifferently now.
So can you respond to thatfirst question?
Speaker 3 (19:35):
Sure, I'll be happy to.
Well, I think the first thing,uh, and being successful moving
forward is I mentioned itearlier is this thing with
denial.
Yeah, if there's one thing I'velearned in my life's
experiences is that number onelife is not fair, so don't use
(20:00):
the.
It's not fair.
I got this.
I'm not fair.
I got that.
How come this person didn't getit and I got it?
You know I'm going to use asomewhat crude term, but get
over it.
All right, it is what it is, uh.
The second one is uh, bad thingsdo happen to good people.
(20:22):
Meaning, I think we all knowpeople that are angels
personality-wise andunfortunately they're angels in
reality.
Now, all right.
And at the same point, we knowpeople that are real stinkers
and unfortunately they're stillon the earth every day.
And you know, that goes withthe first one life isn't always
fair.
(20:47):
The first one life isn't alwaysfair.
But if you come to grips withthose two, then the third one I
try to go by is if I have tomove forward on a daily basis,
do I want to hang around peopleand activities and things that
have negative energy or thingsthat have positive energy?
Because negative energy there'splenty of it out there.
I mean, just listen to the newsevery night, all right, or
listen to stories from you knowrelatives that have sick other
(21:11):
people, but I always try to lookat whatever, whatever little.
I'm the half full glass personversus the half empty glass
person, all right, and it mayonly be a small amount of
difference between the two, butI think it means a heck of a lot
to how you go through each andevery day.
Speaker 1 (21:33):
Well said, my friend, Well said.
So the last thing I want totalk about is last weekend I got
to go give Ray a hug in person,him and his wife You're a great
hugger, by the way.
He's like, sorry, I'm a hugger.
I'm like, oh, our family's ahugger too.
So I went right in and I justwanted to share something that
(21:55):
both of us were a littleperplexed about.
But now that you've told theRocksteady boxing story what
happens there, I think what I'mabout to say it explains why
this happened.
So Ray has a ping pong table inthe basement and he was telling
me about things and he wantedto show me where he sits for
(22:17):
Zoom, because he's got a reallycool Abbey Road backdrop like
the Beatles, Right, yeah, theBeatles walking across the Abbey
Road, Is that?
Speaker 3 (22:25):
Abbey Road Abbey Road backdrop.
Like the Beatles, right, yeah,beatles walking across the Abbey
Road.
Speaker 1 (22:29):
Yeah, except he has animals on him, but that's
another story, right?
Speaker 3 (22:33):
You didn't expect anything normal, did you?
No, no.
Speaker 1 (22:37):
So I can tell you a little bit about the nail polish
inside joke, because I sat downat the desk where he sits at
and I was like why do you havenail polish at your desk?
So that's so.
Speaker 3 (22:49):
It just became a joke well, that's because my wife
shares the same workstation oh,is that the story you're telling
, okay?
Speaker 1 (22:55):
that's what I'm using this week but anyway, he was
telling me you he had mentionedhe plays ping pong.
And what did I say to you?
What did I say to you First?
Speaker 3 (23:07):
thing out of her mouth is I'll play you and I'm
going to make you cry like ababy.
Speaker 1 (23:13):
I think it was.
I thought it was scream like agirl.
Was that what it was?
It was something.
Speaker 3 (23:20):
My Louis body.
I forgot it already, butneedless to say, for the next
many hours that we played, shepersistently tried to accomplish
that fact.
Speaker 1 (23:30):
And I was a girl between two older boys and
brothers and two youngerbrothers, so I learned how to
play ping pong.
Speaker 3 (23:38):
We had a great time.
Speaker 1 (23:39):
We really did have a great time, and what we realized
is when both of us stoppedtalking and we tried to play.
We played terribly and the morewe talked while we were playing
, we were very.
Speaker 3 (23:52):
We had long rallies and we were like what is going
on?
I didn't notice it at first,but when it broke up and you
know, my wife was sitting on theside she doesn't play pong, so
she was just talking to us.
So we'd have like a three-waytalk and as long as we were
talking we were doing fine.
As soon as we stopped talkingand concentrated on the game,
(24:15):
our quality of play went down.
Speaker 1 (24:17):
Yeah, yeah, it was very interesting.
But now that you told theRocksteady Boxing you know
that's probably helping yourmind with all that.
It was just very strange.
It was very noticeable to methat when we both stopped
talking for a minute we werelike what the heck?
Speaker 3 (24:35):
Well, the next time we play we'll become like one of
those lab rat experiments.
Speaker 1 (24:40):
You know, we'll get somebody to take notes and
analyze it and in Ray's defensehe only screamed like a girl,
like three times.
I'm just saying.
Speaker 3 (24:50):
I was trying to think of a way to describe the way
you play, and the best word Icould come up with was tenacious
.
How's that?
Is that a good word?
Speaker 1 (25:00):
It was called survival growing up, yeah, you
know, between all the brothersit was called survival.
Speaker 3 (25:05):
growing up, you know, between all the brothers She'll
play nice until you feelcomfortable and then she'll slam
you and say, gotcha.
Or I'd be like, oh, sorry, yeahright, she'll slam it and then
she'll give you that humble bitlike oh, I really didn't mean to
do it that hard.
Speaker 1 (25:26):
Meanwhile, in the back of her mind, she's saying
next time harder, next timeharder.
And not only that.
Speaker 3 (25:30):
I mean, we did more than just play ping pong.
We took some silly picturestogether and we had hours in
between of conversations, thethree of us, about everything
under the sun.
I think it's great.
I mean, I don't know about fromLinda's standpoint, but we just
(25:50):
immediately opened up to eachother and any topic that popped
into our minds was fair game.
Speaker 1 (25:58):
Yeah, it was a pretty amazing day.
I'll be back, so keeppracticing, I'm telling you.
Speaker 3 (26:04):
Well, the problem is I got nobody to practice with,
so when we meet it's acombination of practice and
competition, okay.
Speaker 1 (26:13):
All right, it's a promise, I'll be back.
Okay, promise or a warning, Idon't know which.
Yes, all right, kerry, you wantto ask them this last question.
Yeah, ray, do you have anyfinal words?
You'd to ask him this lastquestion.
Speaker 2 (26:26):
Yeah, Ray.
Do you have any final wordsyou'd like to share with our
listeners?
Speaker 3 (26:33):
Try to stay positive.
If you don't, you're your ownworst enemy.
I mean, let's be honest in lifeno one's going to look out more
for you than yourself.
I mean, as much as we love ourloved ones and stuff, they have
their own lives to live and theyhave their own issues that
they're going to encounter, etc.
So you know it used to be anold proverb I don't know if it's
(26:58):
true or not, but you know godhelps those that help themselves
.
So you know, if you do nothing,don't expect anything to change
.
If you try something and youdon't like it, you can always
stop it.
You try something and you likeit, you can always continue it.
And again, if you want to bepart of the pity party and sit
around and just mope and cry andfeel sorry for yourself, you're
(27:20):
welcome to.
But I chose a different path.
Yeah, and now?
Speaker 1 (27:26):
we're stuck.
Speaker 3 (27:27):
I like laughter, I like silliness.
Uh, if you're ever around ourhouse and linda has been my wife
and I constantly have stupidbanter, you know like she'll say
a word and I'll say it back,but it's a totally different
word with.
You know it's a synonym typeword but it's totally, totally
different word.
It's a synonym type word butit's totally different meaning
(27:47):
and so on and so forth, and Ithink that helps both her and I
get through the issue.
Don't be afraid to talk aboutyour condition when I go out.
If I'm having difficulty goingthrough a doorway, I just say oh
, excuse me, I'm a little slow,I have Parkinson's.
I don't even hide it, I justtell people slam it, because if
(28:09):
you tell them, there's a chancethey could be understanding and
compassionate.
If you don't tell them, theyjust think you're a stumbling
old geezer.
There's two sides, but you'vegot to get over the fact that
you have it.
There's no stigma associatedwith it.
Speaker 1 (28:27):
Yeah, we've come a long way in society about all
those kind of things, which I'mthankful for.
And before Curry starts signingoff thank you again, Ray, for
coming on, and I will be back.
Speaker 3 (28:43):
Oh, I do want to make one more statement, if I could,
to all those listening.
Linda and Curry have all mypersonal information as far as
phone number and Facebook.
I do a lot of messaging onFacebook.
If there's something you wantto know more about or you just
want to contact me in general,please contact either of them
(29:05):
and I've given them, you know,complete permission to give it.
Um, and also I want to mentionsomething, uh, before I was
diagnosed and again I justthought I was getting old and
slower I used to do a lot of tvand maybe some puzzles for the
brain.
(29:25):
Obviously, tv is not veryexercising and puzzles, as fun
as they are, they're kind ofmonotonous after you've done 12
in a row and there's 750 to1,000 pieces.
So recently my wife has gottenme on Facebook.
(29:46):
I've never been on Facebook inmy whole life.
When I say recently, maybe ninemonths ago well, I have also
have a facebook group, of whicha lot of people, including those
from our zoom group I knowcurry belongs to it, a few
others in the group, uh, thatbelong to it.
Well, I also use Facebook notonly for the enjoyment of
(30:08):
putting things out there that Ithink other people might enjoy
reading about, because all thecontent is generated via me.
Either I borrow it fromsomebody else or the original.
But when I find people thatrespond to something I post, in
many cases I contact them and ina few cases I've actually
(30:31):
developed what I'll call maybewe used to have long-distance
pen pals.
People used to write.
Well, I'll call themlong-distance friendships.
I have a gentleman in Spainthat I've never met, but we send
the equivalent of Christmascards to each other.
You know what I'm saying.
I have two people in EnglandOne's an artist and one's the
(30:54):
mother of a son who's a musicianPeople in Australia.
So my wife kind of marvels atme because most people, I guess,
just look at Facebook and clickon it and send something back,
but it's like you're sending itinto dead space.
You never get any feedback.
But I will go out of my way inmany cases to respond to anybody
(31:16):
who participates and those whowant to engage further.
I've met a lot of great people.
So again, that helps in thepositiveness, meaning you're not
just killing time.
Instead of doing TV or doingFacebook, I'm actually trying to
interact and learn and be partof these people's lives as well
(31:37):
as they want to be part of mine.
Yeah, that's great.
Speaker 2 (31:42):
You know, ray when I look at you, uh, they always say
that the sooner you'rediagnosed after your symptoms
start, the better your journeywill be.
Yep, and I think you're.
I think you're living thatright now.
Speaker 3 (31:57):
I really do well, when I wake up in the morning
and this is the absolute truththere's two things I say to
myself mentally.
I don't say it outside verbally, but mentally.
First thing I say is thank you,god, for another beautiful day,
because I'm here, right and so.
And then after I get up and I'mstanding, I say well, I'm still
(32:18):
vertical today and that's theway I start my day.
So if I got two things goingfor me right off the bat, the
rest of the day is going to beeasy, yeah.
Speaker 2 (32:29):
That's right, that's good.
Well, folks, that's all we havetime for this week.
Ray, I want to thank you againfor coming on and sharing your
experiences and giving words ofencouragement to our listeners.
We want all of you to be a partof our podcast series and share
your thoughts on topics youwant to hear about.
Speaker 1 (32:46):
we'd love to hear your feedback on these things
yep, and thanks again, ray uhfor coming on um.
And my pleasure I had a lot offun.
Yeah, and we'll be back.
Yeah, we'll practice our pingpong together and, as always, if
you want to send suggestions orcomments to either our email at
louis body rollercoaster, atgmailcom or on one of our
(33:10):
facebook pages or throughmessenger, you know you can
always send messages that wayand we really can't thank you
all enough for supporting us tokeeping this podcast going as we
continue to share and learnfrom one another and meet some
pretty amazing people.
Speaker 2 (33:27):
And folks.
As always, we will continue topost the link for the podcast
each week for you in my Facebookgroup, Our Journey with Lewy
Body Dimension, and then ourLewy Body Roller Coaster podcast
group, as well as many othergroups, so thanks for joining us
.
Speaker 1 (33:41):
Until next week.
Speaker 2 (33:42):
This is Linda and Curry signing off.
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