December 18, 2024 • 25 mins
What if we told you the wheelchair has a history as rich and intricate as any invention? Join us as we uncover its evolution, from King Philip II's custom chair in 1595 to the birth of the first generic wheelchair. Discover the challenges we've faced firsthand while finding the perfect mobility solutions for ourselves and our loved ones, like custom designs for Pommy’s father. Through personal stories and a deep dive into the innovative spirit that continues to drive accessibility tools, we aim to inspire and inform those living with disabilities, their families, and allies.
Traveling with a wheelchair can feel like an adventure in itself. In this episode, we share practical tips and relatable anecdotes about navigating the trials of accessible travel. From securing a reliable vehicle to dealing with airline policies, we cover essential preparations to make journeys smoother. Hear about our experiences with wheelchair-accessible vehicles and how they impact family life. And don’t miss out on contributing to our community by sharing your stories and suggestions—visit us at www.whenlifegivesyoulemons.net and explore our YouTube channel, Making the Lemonade, to connect and collaborate further.
1.https://abilitytools.org/blog/history-of-the-wheelchair/#:~:text=The%20first%20known%20wheelchair%20purposefully,legs%20and%20an%20adjustable%20backrest.
2.https://www.wheelchairjunkie.com/history/
3. https://en.wikipedia.org/wiki/Paralytic_illness_of_Franklin_D._Roosevelt#:~:text=He%20was%20diagnosed%20with%20poliomyelitis,efforts%20to%20conceal%20in%20public.
4.https://www.quantumrehab.com/resources/consumer-article-motorized-wheelchairs-then-and-now.asp
5.https://www.fastcompany.com/90906945/airplanes-accessible-delta-products
I am also starting on a Facebook Group to interact with listeners, Come along for the ride.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Soundstripe.
Speaker 2 (00:06):
Welcome to our podcast with Life Kishilums.
I'm Kevin Henry and my partnerin crime, and life is Pommy
Henry.
I have a rare disease known asspinal cell viral ataxia, which
is a neuromuscular disease.
(00:26):
This has left me with mobilitychallenges, with a speech
impediment and noise-inducedanxiety.
Speaker 1 (00:39):
Living with these disabilities for over 20 years,
we have developed helpful hintsand life lessons that we would
like to share with you.
That has made our life easierand possible in some cases.
We consider ourselvesdisability advocates and intend
to educate ourselves and youabout other disabilities and
(01:01):
issues, and also talk aboutthings we find interesting and
frequently encounter when we'reout and about.
Speaker 2 (01:14):
Hello folks, this is Kevin.
I'd like to welcome you to ourpodcast.
When Life Gives you Lemons.
This time we're bringing youanother classic episode.
It's the very first episode werecorded and it's about
(01:35):
wheelchairs.
Enjoy.
Speaker 1 (01:49):
Well, hello there, you have reached the when Life
Gives you Lemons podcast.
My name is Palmy.
Speaker 2 (01:56):
My name is Kevin.
Speaker 1 (01:59):
He was diagnosed with ataxia spack about 22 years ago
.
We went through quite a bit ofdifficulties actually being
diagnosed.
It took us over three years.
In the meantime he was treatedat multiple sclerosis, but
eventually we did come upon adoctor who that's all he did was
(02:19):
do diagnoses, and he diagnosedKevin with an ataxia, a specific
ataxia disease.
At the time he was given fiveyears to live.
As you can see in here, he isstill with us kicking.
I'm still alive and kicking.
Yes, there you go, and what wewanted to do with this ataxia,
(02:43):
with this podcast, is broadeneveryone's knowledge on ataxia,
also on handicapped issues thatpeople who do not have handicaps
may not be acquainted with with.
Yeah, uh, so we're going toshare and discuss issues um with
(03:07):
, as with having a handicap andmanaging everyday issues, with a
few life hacks that we'velearned in the in with through
our life.
Kevin, we are going to focus on, uh, travel for this episode
okay why don't we start with alittle history?
Speaker 2 (03:25):
Okay, we're talking about the history of wheelchairs
this time.
Not because wheelchairs arelike a modern marvel or anything
, but the various medicalconditions.
Various medical conditions.
(03:54):
That's probably the one thingmost of them have in common.
So yeah, let's talk about that.
Speaker 1 (04:01):
The first one in history was the King Philip one.
Speaker 2 (04:04):
Invented in 1595.
For King Philip.
Ii correct yeah of Spain Onthat.
You have to bear in mind thatthen as now, you pretty much
need to have wealth andinfluence on your side to get
(04:24):
something custom built for you.
And basically that's what hedid, is he had people build it
for him.
He commissioned their work.
Speaker 1 (04:37):
It was kind of basic.
It was just a chair that hadsmall wheels attached to the end
of the chair legs small wheelsattached to the end of the chair
legs and it included a platformfor Phillips' legs and
adjustable backrest.
So pretty basic.
Speaker 2 (04:52):
Yeah, it's kind of hard to imagine what you have to
think of.
Unfortunately, a lot ofwheelchairs or handicapped
accessories in general are madeby non-handicapped people and
(05:12):
they don't think about needs perse.
Speaker 1 (05:16):
They think about the functionality and how it looks
and stuff like that how it looksand you know stuff like that
when in your mind you're lookingat how it works with your
specific handicapped, correct?
Speaker 2 (05:32):
Yeah, palmy's dad was having, or was staying with us
after he had the stroke, and hepretty much had to remain in a
very reclined position, and sohe had to have a tailor-made
custom wheelchair to allow himto recline enough for him to be
(05:58):
comfortably taken to and fromappointments.
Speaker 1 (06:02):
He had some back issues that he had had previous
to the stroke.
That was the reason why he wasin a wheelchair, so but we never
did find anything that reallyfit him well, because the other
consideration we had to lookinto was something it had to be
foldable.
It had to be able to be foldedup and put into a back, because
(06:24):
we did not have our conversionvan at that time.
Speaker 2 (06:27):
Yeah, so next on our list we get into the 18th
century.
They developed a wheelchair.
They could actually begenerically sold for just
(06:52):
general handicap use.
Uh, the one thing I don'treally understand the
illustrations don't reallyexplain this how it worked.
But you could theoreticallyhook up a horse or mule to, I
guess, speed down the road.
(07:13):
But I'm not it wasn't powered.
I did not want to speed downthe road.
Speaker 1 (07:21):
Yeah, it was man-powered or beast-powered,
not motor-powered at that time.
Speaker 2 (07:28):
Yeah, I think it was still in the style of a chair
with wheels.
Speaker 1 (07:36):
What it says is that the developer was an Englishman
from Bath, john Dawson, fromBath, john Dawson, and it says
he defined the wheelchair as auniversal product complete with
adjustable leg rest andreclining back seat backrest.
Dawson's interpretation of thewheelchair as a device of
(07:57):
practical mobility set the pacefor the modern day wheelchair,
and that was in 1783.
So obviously there was noadvancements for about two,
three hundred years.
Speaker 2 (08:12):
Yeah, wheelchairs.
Once they got them to wherethey are now, they really have
not changed that much, but youcan still have your wheelchair
custom made or better made, tosuit your needs.
An example would be forathletic events, if you're into
(08:36):
them, like the wheelchairs theyuse for basketball which is kind
of ironic because everybodykeeps telling me that's a
non-contact sport and they'rebasically ramming each other and
knocking their wheelchairs, youknow, like a trade in paint in
(09:00):
a NASCAR race.
So okay, then let's spend aminute and talk about power
chairs.
This goes back.
The first one was actually madeby a guy who became handicapped
himself, but he was a tradesmanlearned in the ways of
(09:25):
watchmaking.
So it was basically amechanized wheelchair that you
had to wind up and would run offthe kinetic energy store by
springs and then transferred togears and sprockets to move
whatever.
(09:45):
And again, it was made for him,so it wasn't like made for
handicapped people in general orsold.
Made for handicapped people ingeneral or sold.
It wasn't until this century, Ibelieve.
They were actually genericallymade and sold and we're still in
(10:16):
the phase where batteries aregetting better, they're getting
standardized.
A good example is the batteriesthat power wheelchairs are
sealed and certified so they canuse public transportation or
commercial transportationAirlines, buses and sort of like
(10:41):
that.
Speaker 1 (10:42):
But that leads us into what we were talking about
in association with travel forthis episode.
A lot of the wheelchairs werebasically people didn't go
anywhere, they were pretty muchbedridden or went around the
(11:02):
house.
And most recently, in the lastprobably 50 years, people
started venturing out of theirhome and so it became necessary
for the transportation of thismodern wheelchair.
And when Kevin was firstdiagnosed, we decided for our
(11:25):
family.
One of the important things waswe have a child and she was
only four at the time, so wechose.
We always both thought toourselves what to get as many
memories in for her and ourfamily as possible.
So we looked into lots oftravel while she was of younger
(11:46):
age.
We did a lot of cruising, wedid a lot of road trips, that
kind of thing, that kind ofthing.
And we have come across quite afew issues while we've been
doing this.
First, when we first started,we didn't have a vehicle that
(12:07):
would transport the wheelchair,so we had to.
Kevin, well, we should talkabout the first wheelchair you
were assigned.
Speaker 2 (12:13):
Well, the very first wheelchair we had problems with
because we're trying to fit itwas appeared in the progression
of a taxi, where you're goingfrom a walker to a wheelchair
and we were finding out just howdifficult life in a wheelchair
(12:33):
it can't be.
So we'd still bring the walker,Just in case we ran across that
one place that said they werehandicapped accessible, but then
you got stairs to contend withor something like that.
Speaker 1 (12:48):
Or even just a small little bump that the wheelchair
was not able to get over.
He had a over-engineeredwheelchair what much more?
Because the diagnosis was fiveyears, of course, and so they
thought he'd be much worse offthan he ended up being.
So it was way over engineered.
It was the sip and puff motion.
(13:11):
It basically would adjust himfrom sitting to laying down at
any time.
So it was really really heavy.
And we found, while travelingspecifically on airplanes, a lot
of the airplanes that we wereassigned to were not able to
carry the weight of thewheelchair, and so we got
(13:34):
waitlisted for a lot of uhplanes, uh, waiting to get home
or to get to our destination.
Um, and that is veryfrustrating.
I it's one time I think it wasup to 12 hours, so it was not a
convenient and we had a, a veryyoung child, with us at the time
, which does that does not makeit comfortable at all.
So a, what would it be called?
(14:03):
Uh, a?
lift yeah, it lifted it to, tookthe chair up by the side panels
and lifted it up into our backof our van.
It was cumbersome, didn'talways fit correctly and, um,
there was usually damage ofsomething during the
(14:23):
transportation or the, yeah, thetransportation of that so when
uh pommy talks about damage, itwas usually on the cars or the
van, so it's a vice versa.
Speaker 2 (14:35):
Yeah, it was a trade office resale value.
Speaker 1 (14:41):
It definitely impacted that well, our daughter
took care of that, because shewrecked it.
Well, yeah, but it did last usa long time, though she was 16
by the time she wrecked it, andI think we got it when she was
five or six, so it was quite awhile.
But she had an accident andtotaled our van, but it worked
(15:07):
out because during that time,kevin was able to get back out
of the wheelchair.
He started to attend someadaptive martial arts that kept
him really strong and fit forquite as long as his body would
allow him to be, and sotime-wise, it was fine.
We worked out, it worked wasfine.
We worked up, it worked outfine.
But then we ended up buying avery small vehicle um that we
(15:30):
strapped the um at that time itwas just either a manual
wheelchair or a walker and westrapped that onto the back.
We look like the BeverlyHillbillies at some point, so,
but it did.
It did work.
We that would not be one of thethings we would suggest, though
.
Yeah, the term handicap appliesto everybody.
Speaker 2 (15:54):
That you know, basically is got broken limbs or
damage or recoverings fromsurgery, major recoverings from
surgery.
There's a lot of differentthings that people might have
going on.
There's no way to sit down andgo and talk about all of them.
(16:15):
So we thought a wheelchairwould be safer because, well, if
you've been hospitalized.
Speaker 1 (16:27):
They tend to wheel you out in a wheelchair and at
this point you started havingtrouble transferring and stuff
and so it was safer for you twonot to be in a walker or using a
cane.
So it was a big change andKevin had to get his mind around
it before we were actually ableto start going to the next
level, which was the wheelchair.
(16:48):
That's a huge just like givingup driving originally was a huge
mindset that getting and havingto use the wheelchair more
often or consistently wassomething he had to get around
his mind first and then workthrough those issues himself.
(17:09):
So let's give some tips onnavigating some common issues
While traveling on thoseairplanes.
We mentioned about the weight ofthe chair.
So what we did was we kept amanual in the back of the chair
at all times, so at any pointthey could check to see what the
back of our uh, the chair atall times.
So at any point they couldcheck to see what the weight of
the the chair was.
(17:29):
Um.
Take off any extra umaccessories, um, when you're
transporting it either in thecar or in the airplane, because
they tend to get broken ordamaged.
So we learned that right awayis to get all those extras off
or lost.
A lot of times it came back andit wasn't even there.
(17:50):
They had taken it off.
Verify all legs of your journeyfor your trip are able to
handle the chair weight.
Plan extra time to get throughTSA.
There was not one time thatKevin went through TSA that he
was not padded down from head totoe.
You know I understand why, butit's very hard when you can't
(18:18):
maneuver very well to begin with, to have to stand up and, you
know, assume the position.
Speaker 2 (18:25):
Basically, yeah, that was in the days before
pre-certification at TSA.
Speaker 1 (18:33):
Checkpoint yeah, we would definitely recommend pre
yeah if you're, you know, doingtraveling a lot.
Speaker 2 (18:43):
I would recommend that because it wasn't fun.
It was never quick, it wasnever easy.
Speaker 1 (18:51):
And I had a five-year-old that was running
around that I had to keep trackof while I was helping him stand
up.
Of course, they don't want youanywhere near the subject while
they're doing that, but it'salmost impossible for that to
happen.
Also, removable shoes veryeasily.
Removable shoes or even socksat some point, if you're not
having to transfer, would makeit a lot easier during getting
(19:14):
through that.
Speaker 2 (19:16):
I read an article about a company in Germany that
makes basically cockpitaccessories for airliners and
they developed a wheelchairwhere it's no longer considered
by an airline as luggage.
You wheel it to position andbasically they strap you down
(19:43):
Like they do on buses.
Speaker 1 (19:46):
That would be great.
Speaker 2 (19:48):
It would be.
I don't know how widely spreadthat concept will go.
For all I know, because it's inthe future, I don't know it may
not get off the ground.
I think you said there wereairlines already that did
(20:10):
something like that.
Speaker 1 (20:11):
I think I heard somewhere that there was one
airline that had it on there.
I was on an accessibilitywebsite that I was looking at.
We can also talk about vehicles, also talk about uh.
We can also talk about umvehicles.
We just recently got a newvehicle, pacifica.
(20:31):
That is a conversion van, um.
It's absolutely amazing.
Um kevin can wheel up either inthe passenger seat or there's
two spots in the back where hecan tie down back there.
During when my dad was livingwith us, we were looking at
(20:52):
vehicles that could handle twowheelchairs, and this was one of
them that we found, and we justfell in love with it.
We took a test drive thecompany here allows you to rent
the vehicle in which we took along road trip up to Michigan
and back, and after that trip,we just found out that it was
(21:14):
just exactly what we had neededat the right time, so we really
do love the vehicle.
However, it does not get greatgas mileage and it was super
expensive.
So those are some of the thingsyou have to look at when you're
looking for handicappedaccessories, I guess.
Speaker 2 (21:38):
Yeah, it definitely helps to be very wealthy if
you're handicapped, becauseeverything is very, very
expensive.
Yeah, and insurance companiesare always looking for ways not
to pay for things yep, theydon't make money if they have to
pay rental cars.
Speaker 1 (21:56):
Make sure that they can handle the chair.
There's lots of extra chargesbecause you do have the
wheelchair.
So just educate yourself beforeyou go.
Try just to scope out.
This is we do this all the timeand this is typically my job.
(22:18):
We try to scope out publicareas that they aren't too
difficult for Kevin to get inand to manage and to wheel
around in.
We had a couple of incidenceswhere we were in a restaurant
and a tourist area a DisneyWorld where Kevin at one point
had a scooter, a three-wheelscooter, instead of a wheelchair
(22:40):
.
He thought he could handle thatbetter the handlebars versus
the manual small controls atthat point and we were refused
access.
He was refused access with thescooter.
They said their insurance didnot cover that.
So again, we were very smart.
(23:00):
We always carried a walker withus and we walked him into the
restaurant to the closest tablewe could possibly get.
So be aware of that and I'msure that it won't happen that
was the rare occasion that thathappened and also verify, and
double verify, that handicapaccessibility is at wherever
(23:22):
you're going.
We were once at a motel.
We asked for a handicap room.
We were given it.
No, no problem.
But when we got there, therewas a small step that had to be
maneuvered in order to get tothe room.
So that is a no-go unless youhave a ramp is a no-go unless
(23:43):
you have a ramp.
So that was a lot of hassle fornot a lot of happiness.
I think we're going to end upending today.
Kevin, we have a website.
Speaker 2 (23:58):
What is that website?
Wwwwhenlifegivesyoulemlemonsnet, and what we'll do is
post the links to the items weresearched on a page on that
website.
Speaker 1 (24:15):
And what we'd like from you guys is to like and
share.
If you like the podcast, youfeel that there was education
here and you'd like someone elseto share with you, and also
examples or requests of futureepisode topics.
We're open to investigate andresearch anything that you want
(24:37):
us to do and we welcome commentsand suggestions.
Speaker 2 (24:43):
Some of you may have ideas that work well for you,
and we'd love to hear about them.
Speaker 1 (24:53):
Yeah, we get a lot of information from other people
we talk about that have.
Kevin belongs to the Ataxiasupport group and he gets a lot
of information from that.
Well, thank you, and we'll endour episode here.
Goodbye, everybody.
We are always looking toimprove the podcast, so if you
(25:15):
want to hear a specific topic,have a differencing opinion, to
add something to theconversation, drop us an email.
Our contact information islisted on our website.
It'swwwwhenlifegivesyoulemonsnet.
We have recently added acompanion YouTube channel called
(25:37):
Making the Lemonade.
If you enjoy the podcast,continue your enjoyment by
joining us on YouTube.
Soundstripe.
Speaker 2 (00:06):
Welcome to our podcast with Life Kishilums.
I'm Kevin Henry and my partnerin crime, and life is Pommy
Henry.
I have a rare disease known asspinal cell viral ataxia, which
is a neuromuscular disease.
(00:26):
This has left me with mobilitychallenges, with a speech
impediment and noise-inducedanxiety.
Speaker 1 (00:39):
Living with these disabilities for over 20 years,
we have developed helpful hintsand life lessons that we would
like to share with you.
That has made our life easierand possible in some cases.
We consider ourselvesdisability advocates and intend
to educate ourselves and youabout other disabilities and
(01:01):
issues, and also talk aboutthings we find interesting and
frequently encounter when we'reout and about.
Speaker 2 (01:14):
Hello folks, this is Kevin.
I'd like to welcome you to ourpodcast.
When Life Gives you Lemons.
This time we're bringing youanother classic episode.
It's the very first episode werecorded and it's about
(01:35):
wheelchairs.
Enjoy.
Speaker 1 (01:49):
Well, hello there, you have reached the when Life
Gives you Lemons podcast.
My name is Palmy.
Speaker 2 (01:56):
My name is Kevin.
Speaker 1 (01:59):
He was diagnosed with ataxia spack about 22 years ago
.
We went through quite a bit ofdifficulties actually being
diagnosed.
It took us over three years.
In the meantime he was treatedat multiple sclerosis, but
eventually we did come upon adoctor who that's all he did was
(02:19):
do diagnoses, and he diagnosedKevin with an ataxia, a specific
ataxia disease.
At the time he was given fiveyears to live.
As you can see in here, he isstill with us kicking.
I'm still alive and kicking.
Yes, there you go, and what wewanted to do with this ataxia,
(02:43):
with this podcast, is broadeneveryone's knowledge on ataxia,
also on handicapped issues thatpeople who do not have handicaps
may not be acquainted with with.
Yeah, uh, so we're going toshare and discuss issues um with
(03:07):
, as with having a handicap andmanaging everyday issues, with a
few life hacks that we'velearned in the in with through
our life.
Kevin, we are going to focus on, uh, travel for this episode
okay why don't we start with alittle history?
Speaker 2 (03:25):
Okay, we're talking about the history of wheelchairs
this time.
Not because wheelchairs arelike a modern marvel or anything
, but the various medicalconditions.
Various medical conditions.
(03:54):
That's probably the one thingmost of them have in common.
So yeah, let's talk about that.
Speaker 1 (04:01):
The first one in history was the King Philip one.
Speaker 2 (04:04):
Invented in 1595.
For King Philip.
Ii correct yeah of Spain Onthat.
You have to bear in mind thatthen as now, you pretty much
need to have wealth andinfluence on your side to get
(04:24):
something custom built for you.
And basically that's what hedid, is he had people build it
for him.
He commissioned their work.
Speaker 1 (04:37):
It was kind of basic.
It was just a chair that hadsmall wheels attached to the end
of the chair legs small wheelsattached to the end of the chair
legs and it included a platformfor Phillips' legs and
adjustable backrest.
So pretty basic.
Speaker 2 (04:52):
Yeah, it's kind of hard to imagine what you have to
think of.
Unfortunately, a lot ofwheelchairs or handicapped
accessories in general are madeby non-handicapped people and
(05:12):
they don't think about needs perse.
Speaker 1 (05:16):
They think about the functionality and how it looks
and stuff like that how it looksand you know stuff like that
when in your mind you're lookingat how it works with your
specific handicapped, correct?
Speaker 2 (05:32):
Yeah, palmy's dad was having, or was staying with us
after he had the stroke, and hepretty much had to remain in a
very reclined position, and sohe had to have a tailor-made
custom wheelchair to allow himto recline enough for him to be
(05:58):
comfortably taken to and fromappointments.
Speaker 1 (06:02):
He had some back issues that he had had previous
to the stroke.
That was the reason why he wasin a wheelchair, so but we never
did find anything that reallyfit him well, because the other
consideration we had to lookinto was something it had to be
foldable.
It had to be able to be foldedup and put into a back, because
(06:24):
we did not have our conversionvan at that time.
Speaker 2 (06:27):
Yeah, so next on our list we get into the 18th
century.
They developed a wheelchair.
They could actually begenerically sold for just
(06:52):
general handicap use.
Uh, the one thing I don'treally understand the
illustrations don't reallyexplain this how it worked.
But you could theoreticallyhook up a horse or mule to, I
guess, speed down the road.
(07:13):
But I'm not it wasn't powered.
I did not want to speed downthe road.
Speaker 1 (07:21):
Yeah, it was man-powered or beast-powered,
not motor-powered at that time.
Speaker 2 (07:28):
Yeah, I think it was still in the style of a chair
with wheels.
Speaker 1 (07:36):
What it says is that the developer was an Englishman
from Bath, john Dawson, fromBath, john Dawson, and it says
he defined the wheelchair as auniversal product complete with
adjustable leg rest andreclining back seat backrest.
Dawson's interpretation of thewheelchair as a device of
(07:57):
practical mobility set the pacefor the modern day wheelchair,
and that was in 1783.
So obviously there was noadvancements for about two,
three hundred years.
Speaker 2 (08:12):
Yeah, wheelchairs.
Once they got them to wherethey are now, they really have
not changed that much, but youcan still have your wheelchair
custom made or better made, tosuit your needs.
An example would be forathletic events, if you're into
(08:36):
them, like the wheelchairs theyuse for basketball which is kind
of ironic because everybodykeeps telling me that's a
non-contact sport and they'rebasically ramming each other and
knocking their wheelchairs, youknow, like a trade in paint in
(09:00):
a NASCAR race.
So okay, then let's spend aminute and talk about power
chairs.
This goes back.
The first one was actually madeby a guy who became handicapped
himself, but he was a tradesmanlearned in the ways of
(09:25):
watchmaking.
So it was basically amechanized wheelchair that you
had to wind up and would run offthe kinetic energy store by
springs and then transferred togears and sprockets to move
whatever.
(09:45):
And again, it was made for him,so it wasn't like made for
handicapped people in general orsold.
Made for handicapped people ingeneral or sold.
It wasn't until this century, Ibelieve.
They were actually genericallymade and sold and we're still in
(10:16):
the phase where batteries aregetting better, they're getting
standardized.
A good example is the batteriesthat power wheelchairs are
sealed and certified so they canuse public transportation or
commercial transportationAirlines, buses and sort of like
(10:41):
that.
Speaker 1 (10:42):
But that leads us into what we were talking about
in association with travel forthis episode.
A lot of the wheelchairs werebasically people didn't go
anywhere, they were pretty muchbedridden or went around the
(11:02):
house.
And most recently, in the lastprobably 50 years, people
started venturing out of theirhome and so it became necessary
for the transportation of thismodern wheelchair.
And when Kevin was firstdiagnosed, we decided for our
(11:25):
family.
One of the important things waswe have a child and she was
only four at the time, so wechose.
We always both thought toourselves what to get as many
memories in for her and ourfamily as possible.
So we looked into lots oftravel while she was of younger
(11:46):
age.
We did a lot of cruising, wedid a lot of road trips, that
kind of thing, that kind ofthing.
And we have come across quite afew issues while we've been
doing this.
First, when we first started,we didn't have a vehicle that
(12:07):
would transport the wheelchair,so we had to.
Kevin, well, we should talkabout the first wheelchair you
were assigned.
Speaker 2 (12:13):
Well, the very first wheelchair we had problems with
because we're trying to fit itwas appeared in the progression
of a taxi, where you're goingfrom a walker to a wheelchair
and we were finding out just howdifficult life in a wheelchair
(12:33):
it can't be.
So we'd still bring the walker,Just in case we ran across that
one place that said they werehandicapped accessible, but then
you got stairs to contend withor something like that.
Speaker 1 (12:48):
Or even just a small little bump that the wheelchair
was not able to get over.
He had a over-engineeredwheelchair what much more?
Because the diagnosis was fiveyears, of course, and so they
thought he'd be much worse offthan he ended up being.
So it was way over engineered.
It was the sip and puff motion.
(13:11):
It basically would adjust himfrom sitting to laying down at
any time.
So it was really really heavy.
And we found, while travelingspecifically on airplanes, a lot
of the airplanes that we wereassigned to were not able to
carry the weight of thewheelchair, and so we got
(13:34):
waitlisted for a lot of uhplanes, uh, waiting to get home
or to get to our destination.
Um, and that is veryfrustrating.
I it's one time I think it wasup to 12 hours, so it was not a
convenient and we had a, a veryyoung child, with us at the time
, which does that does not makeit comfortable at all.
So a, what would it be called?
(14:03):
Uh, a?
lift yeah, it lifted it to, tookthe chair up by the side panels
and lifted it up into our backof our van.
It was cumbersome, didn'talways fit correctly and, um,
there was usually damage ofsomething during the
(14:23):
transportation or the, yeah, thetransportation of that so when
uh pommy talks about damage, itwas usually on the cars or the
van, so it's a vice versa.
Speaker 2 (14:35):
Yeah, it was a trade office resale value.
Speaker 1 (14:41):
It definitely impacted that well, our daughter
took care of that, because shewrecked it.
Well, yeah, but it did last usa long time, though she was 16
by the time she wrecked it, andI think we got it when she was
five or six, so it was quite awhile.
But she had an accident andtotaled our van, but it worked
(15:07):
out because during that time,kevin was able to get back out
of the wheelchair.
He started to attend someadaptive martial arts that kept
him really strong and fit forquite as long as his body would
allow him to be, and sotime-wise, it was fine.
We worked out, it worked wasfine.
We worked up, it worked outfine.
But then we ended up buying avery small vehicle um that we
(15:30):
strapped the um at that time itwas just either a manual
wheelchair or a walker and westrapped that onto the back.
We look like the BeverlyHillbillies at some point, so,
but it did.
It did work.
We that would not be one of thethings we would suggest, though
.
Yeah, the term handicap appliesto everybody.
Speaker 2 (15:54):
That you know, basically is got broken limbs or
damage or recoverings fromsurgery, major recoverings from
surgery.
There's a lot of differentthings that people might have
going on.
There's no way to sit down andgo and talk about all of them.
(16:15):
So we thought a wheelchairwould be safer because, well, if
you've been hospitalized.
Speaker 1 (16:27):
They tend to wheel you out in a wheelchair and at
this point you started havingtrouble transferring and stuff
and so it was safer for you twonot to be in a walker or using a
cane.
So it was a big change andKevin had to get his mind around
it before we were actually ableto start going to the next
level, which was the wheelchair.
(16:48):
That's a huge just like givingup driving originally was a huge
mindset that getting and havingto use the wheelchair more
often or consistently wassomething he had to get around
his mind first and then workthrough those issues himself.
(17:09):
So let's give some tips onnavigating some common issues
While traveling on thoseairplanes.
We mentioned about the weight ofthe chair.
So what we did was we kept amanual in the back of the chair
at all times, so at any pointthey could check to see what the
back of our uh, the chair atall times.
So at any point they couldcheck to see what the weight of
the the chair was.
(17:29):
Um.
Take off any extra umaccessories, um, when you're
transporting it either in thecar or in the airplane, because
they tend to get broken ordamaged.
So we learned that right awayis to get all those extras off
or lost.
A lot of times it came back andit wasn't even there.
(17:50):
They had taken it off.
Verify all legs of your journeyfor your trip are able to
handle the chair weight.
Plan extra time to get throughTSA.
There was not one time thatKevin went through TSA that he
was not padded down from head totoe.
You know I understand why, butit's very hard when you can't
(18:18):
maneuver very well to begin with, to have to stand up and, you
know, assume the position.
Speaker 2 (18:25):
Basically, yeah, that was in the days before
pre-certification at TSA.
Speaker 1 (18:33):
Checkpoint yeah, we would definitely recommend pre
yeah if you're, you know, doingtraveling a lot.
Speaker 2 (18:43):
I would recommend that because it wasn't fun.
It was never quick, it wasnever easy.
Speaker 1 (18:51):
And I had a five-year-old that was running
around that I had to keep trackof while I was helping him stand
up.
Of course, they don't want youanywhere near the subject while
they're doing that, but it'salmost impossible for that to
happen.
Also, removable shoes veryeasily.
Removable shoes or even socksat some point, if you're not
having to transfer, would makeit a lot easier during getting
(19:14):
through that.
Speaker 2 (19:16):
I read an article about a company in Germany that
makes basically cockpitaccessories for airliners and
they developed a wheelchairwhere it's no longer considered
by an airline as luggage.
You wheel it to position andbasically they strap you down
(19:43):
Like they do on buses.
Speaker 1 (19:46):
That would be great.
Speaker 2 (19:48):
It would be.
I don't know how widely spreadthat concept will go.
For all I know, because it's inthe future, I don't know it may
not get off the ground.
I think you said there wereairlines already that did
(20:10):
something like that.
Speaker 1 (20:11):
I think I heard somewhere that there was one
airline that had it on there.
I was on an accessibilitywebsite that I was looking at.
We can also talk about vehicles, also talk about uh.
We can also talk about umvehicles.
We just recently got a newvehicle, pacifica.
(20:31):
That is a conversion van, um.
It's absolutely amazing.
Um kevin can wheel up either inthe passenger seat or there's
two spots in the back where hecan tie down back there.
During when my dad was livingwith us, we were looking at
(20:52):
vehicles that could handle twowheelchairs, and this was one of
them that we found, and we justfell in love with it.
We took a test drive thecompany here allows you to rent
the vehicle in which we took along road trip up to Michigan
and back, and after that trip,we just found out that it was
(21:14):
just exactly what we had neededat the right time, so we really
do love the vehicle.
However, it does not get greatgas mileage and it was super
expensive.
So those are some of the thingsyou have to look at when you're
looking for handicappedaccessories, I guess.
Speaker 2 (21:38):
Yeah, it definitely helps to be very wealthy if
you're handicapped, becauseeverything is very, very
expensive.
Yeah, and insurance companiesare always looking for ways not
to pay for things yep, theydon't make money if they have to
pay rental cars.
Speaker 1 (21:56):
Make sure that they can handle the chair.
There's lots of extra chargesbecause you do have the
wheelchair.
So just educate yourself beforeyou go.
Try just to scope out.
This is we do this all the timeand this is typically my job.
(22:18):
We try to scope out publicareas that they aren't too
difficult for Kevin to get inand to manage and to wheel
around in.
We had a couple of incidenceswhere we were in a restaurant
and a tourist area a DisneyWorld where Kevin at one point
had a scooter, a three-wheelscooter, instead of a wheelchair
(22:40):
.
He thought he could handle thatbetter the handlebars versus
the manual small controls atthat point and we were refused
access.
He was refused access with thescooter.
They said their insurance didnot cover that.
So again, we were very smart.
(23:00):
We always carried a walker withus and we walked him into the
restaurant to the closest tablewe could possibly get.
So be aware of that and I'msure that it won't happen that
was the rare occasion that thathappened and also verify, and
double verify, that handicapaccessibility is at wherever
(23:22):
you're going.
We were once at a motel.
We asked for a handicap room.
We were given it.
No, no problem.
But when we got there, therewas a small step that had to be
maneuvered in order to get tothe room.
So that is a no-go unless youhave a ramp is a no-go unless
(23:43):
you have a ramp.
So that was a lot of hassle fornot a lot of happiness.
I think we're going to end upending today.
Kevin, we have a website.
Speaker 2 (23:58):
What is that website?
Wwwwhenlifegivesyoulemlemonsnet, and what we'll do is
post the links to the items weresearched on a page on that
website.
Speaker 1 (24:15):
And what we'd like from you guys is to like and
share.
If you like the podcast, youfeel that there was education
here and you'd like someone elseto share with you, and also
examples or requests of futureepisode topics.
We're open to investigate andresearch anything that you want
(24:37):
us to do and we welcome commentsand suggestions.
Speaker 2 (24:43):
Some of you may have ideas that work well for you,
and we'd love to hear about them.
Speaker 1 (24:53):
Yeah, we get a lot of information from other people
we talk about that have.
Kevin belongs to the Ataxiasupport group and he gets a lot
of information from that.
Well, thank you, and we'll endour episode here.
Goodbye, everybody.
We are always looking toimprove the podcast, so if you
(25:15):
want to hear a specific topic,have a differencing opinion, to
add something to theconversation, drop us an email.
Our contact information islisted on our website.
It'swwwwhenlifegivesyoulemonsnet.
We have recently added acompanion YouTube channel called
(25:37):
Making the Lemonade.
If you enjoy the podcast,continue your enjoyment by
joining us on YouTube.
Host
Jetheswaran Gunasekaran
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