Tip:
Highlight text to annotate it
X
[ Silence ]
>> Good evening and welcome to the spinal cord injury forum.
My name is Jeanne Hoffman, I'm one of the psychologists here
at the University of Washington and the co-Director
of the Northwest Regional Spinal Cord Injury Model System.
The forums, the video recordings and all
of our online media content are made possible by grant
from the National Institute on Disability
and Rehabilitation Research.
Tonight we are very pleased
to have 3 panelists who'll be talking about traveling
with spinal cord injury.
We Joe Meyer, Chris Curtis [phonetics],
and we have a wonderful opportunity
to have Karen Van Cleef [phonetic] here, a travel agent
with tetraplegia, who actually is from Portland
who graciously offered to come up and be part
of our forum tonight, and so we're thrilled to have here,
and she specializes in disability travel.
So each panelist were--
how we're going to do tonight is I'm going to have Karen to start
and talk a little bit about the whole beginning
of travel experience.
So as if that we're all her client coming in to see her
to just give a background on kind of the things
that she thinks about and considers in terms of travel,
and then we're going to talk to all panelist, all 3 of them,
about other issues about travel.
>> Good evening.
If I can start with just telling you a little bit
of my background.
19 years ago, on April 6th will be, well, the anniversary
of my accident, and so that'll be 19 years.
I was in Michigan at the time of my accident, and I decided
to skip school for the day.
And I was with 2 friends, Mike and Jenny and we were
in a third party's vehicle.
And Jenny was just an inexperienced driver
and she lost control of the truck that we were
in because she was going around a pot hole,
and instead of the side of the truck going into a ditch,
it went up the small hole, and we had a tree
in the truck fall several times and my head
and my shoulders went through the side window
and I broke my neck, which left me a C5 quad.
But as the time went on and I had rehab,
I was then re-diagnosed as being a C5-6 incomplete quad.
And I did spend about 4 and a half months at the University
of Michigan because I did have a halo.
And that kept me there just because of how long the halo had
to stay on for the fusion in my neck to take place.
See, I did have a fusion
from 5th vertebrae 'cause it was shattered during the accident.
So, to fast forward, 2 years ago, actually it'll be 3 years,
in September, I started,
It's All About You Travel outside of Portland, Oregon.
It's actually in Beaverton.
And I had people come up to me and asked me different questions
about travel just because they saw me in a chair
and they would, it would be either be somebody that was
in a chair or somebody that knew somebody that was in a chair
and wanted to find out how I traveled
and how I would about it.
And I had such a desire to not only show my story
but to help others
that I thought why not start something that's I've been doing
since my accident, myself, and so therefore,
I started All About You Travel.
So basically, what I do when I get a telephone call
from somebody that's interested in traveling, these are some
of the basic questions I would ask is,
where are you interested in traveling?
Have you been there before?
What did you like about that destination?
What concerns did you have about that destination?
And if you didn't face any obstacles, that's great,
but if you did, what are they and how did you overcome them
or did you have to forego certain opportunities
that you really wanted to do
but didn't have the opportunity to do so?
Because in that way, I can then research what could be the next
step possible for somebody else that is going to go on that trip
or if that client wants to return, therefore,
I can have new information for them so they can then go.
I also ask about the accommodations
that they're interested, whether it's a hotel, motel,
condominium, rental home, and just different kind
of lodging information.
The main questions I ask about that is
if the clients are interested in a rolling shower, bathtub,
obviously, whether or not it has a hand held shower.
And I get really more specific with that is--
I don't know how many people realize or may be not realize
that when you go to a hotel room, for example,
there's always chairs for people to sit down.
Well, we already come with one, so, therefore,
we don't necessarily need one.
But our partners and our loved ones, we obviously want them
to be comfortable as well.
So, there's no problem whatsoever
to call the front desk and have extra, you know,
furniture removed from the room, and a lot of people are hesitant
to ask these kinds of questions.
I always encourage being your own self advocate and part
of that is always thinking outside the box.
You're going to want to plan ahead
and you are just really going to want
to focus on your main needs.
So back to the accommodations, also if the hotel
or wherever you're staying, if they provide a shower bench
or chair, what size of bed do you prefer?
And, like I said, the removal of extra furniture,
or if you need extra furniture for some other reason.
I might also inquire about the type of wheelchair
that a client will be taking on their vacation.
Depending if you're using a power chair and you're thinking
about going overseas-- I'm just going to use Italy for example,
that's going to be much more harder to get
around in a power chair.
Yes, that might take away your independence,
but it will also allow you a lot more possibility to get to areas
where you might not be able to.
Because if you guys realize, there are so many people
that are willing and wanting to help us as long
as we aren't proud and not willing to, you know, welcome
and humble ourselves to accepting that help
because people want us to enjoy ourselves just as much
as the other population.
I mean, whether we were born with an injury or had an injury
after walking, it's the same jest.
So, I also inquire about measurements.
I have a client that-- well that's one the one I do ask is,
do you have special work measurements--
excuse me, do you have special measurements
that work best for you?
You may find it difficult to transfer yourself
from your chair to a bed that is 26 inches high
or lowering yourself to say a commode that is a lot lower
than yours that is at home.
And so one thing that I have found is I have a client that--
several clients with, but one in particular
that I have their measurements that work best for me.
So when I-- also in regards to with--
and we'll just stick with hotel, 'cause 'it can be a condominium
or whatever, but with a hotel the main people that you want
to talk to and are your best advocates
of getting your room the way you want it is speaking
to the head of housekeeping.
They're going to know the rooms inside and out because they're
in it every single day.
And then the other person that you wanted to speak
with is somebody in the engineering department,
because they can become your very best friend.
And in regards to that, the measurements I want
to just throw out to you is there's a bed height that works
for a client of mine which is 18 or 19 inches high.
However, it [inaudible] are 19 inches to 21 inches.
The commode for this individual would be 17 to19 inches.
And then another thing that I also ask is for all
of these measurements before you go on your trip.
I'll have you measure the length of your chair from--
with you being in your chair, so obviously somebody would need
to assist you, is from literally the tip of your toes
to the back of your wheelchair.
So we would want the length, we'd want the width
at the widest part of your chair and we'd want the height
from the floor to your knee, for knee clearance
so you know whether or not you can fit it under the apron
of any kind of desk or sink or anything like that,
and also from the floor to the top of your head
for transportation issues,
especially if you're really tall.
And then also for safe transferring, you also will want
to find out the width of the wall to your bed.
Because if you are transferring yourself, that's one thing,
but if you have somebody that's going to be assisting you
in doing a pivot transfer or 2-man lift
or if you're using a Hoyer lift that you need to bring in
and transfer, you're going to have the use of, or excuse me,
the need of much more space.
And so, ideally what I found with my clients is
about 36 inches from the wall to the bed seems
to be what works best.
And also a lot of people say
that a king sized bed is ideal just
because it allows more space in the room for other areas.
And, so, I ran into a situation with a client of mine who wanted
to stay at this hotel and with the measurements
that I gave you, it was actually the Gansevoort Hotel
in New York.
It's a hotel that we all want to stay at.
It's fabulous.
It's very upscale and everything is to the [inaudible].
It's very posh and very popular.
And so it's not a hotel I'm staying
where I got a flat sheet and a comforter.
It has, instead of flat sheet, it has down bedding
and then another down comforter and everything.
And I want to say the height of that bed was probably 26 inches,
and my client is saying, "No,
that's not going to work for me."
And I know this.
And however, this bed is up on a platform, a built-in platform.
You can always ask if the Hollywood frame can be removed,
that's when the engineer comes in.
And if that platform
or Hollywood frame can't be removed they do get
really creative.
And so what I asked the head of housekeeping to do was
to strip all the luxury items, unfortunately,
and I said just put a flat sheet on the bed
and let's see what we can do,
and they got it down to 22 inches.
And so that was a big score, I thought.
My client was very thrilled.
So that was a plus.
And then other thing that you can do when you're thinking
about a room and you're thinking about the space in the shower
and just to make sure that you're being heard
and understood is to ask if they will take pictures of the room
and have them sent it to you via email.
And if you don't have email, once again always plan ahead
of time for travel arrangement is key
so they can always do a snail mail as well,
but that is another idea.
>> I am Chris Curtis.
I have a, it was about 4 and half years out now,
primary injuries at C5, but I feel a [inaudible] in my C6,
7 incomplete as far as function is concerned.
I did my rehab here, and they have actually got the whole 8
weeks that they gave notice.
It was good rehab offset.
And I've traveled a bit around
and Karen gave some great information on hotels
because hotels can be just amazing
and sometimes the beds are like this high.
And trying to transfer onto something
like that is almost impossible and talking to the engineers
and what not to try to figure out different ways to kind
of remove the platform or make-- find different ways of leverage
to bounce up into maybe a chair or something else to get
down to it, has really been very helpful.
Let's see.
I'm trying to think of something more interesting things
about travel I've come to pass and I've had the advantage
of traveling overseas.
I've traveled to Switzerland a few times and I've traveled
around the US with my rugby team.
There's a couple of guys from my rugby team here.
And that's a little adventure in itself
because you don't know what you're going to get and you go
in hotels that have 8 teams of rugby guys, about 10 guys
in chairs at the same time were all flying
into the same airport, and there's all sorts of confusion
as to how to transfer everybody onto a plane.
How to get all the equipment into the hotels?
How to get the equipment off the plane?
You know, whose chair belongs to who, and all of that stuff,
so there's some interesting things.
One thing that Karen brought up is being a self advocate,
it is extremely important.
And even or maybe even especially
so if you're traveling with somebody else,
and that if you speak up for yourself instead
of having the person that's traveling
with you do the speaking.
'Cause in some situations I know that the flight attendant
or the airline people will start talking to whoever's kind enough
to help you and how as helpful is that person going to be,
you may have specific desires or interests
that you need to express yourself.
So, speak up for yourself
and just always keep a great attitude about things.
Nobody wants to make it difficult for you.
They're always trying to make it as easy for you as possible.
Airline folks are so nice and so kind and there were
so many people that in fact that they're not like always trying
to just beat up on everybody every day.
It's amazing.
So, really just if you smile and you're nice to them,
they will bend over backwards to make sure
that you're comfortable and get a good seat.
Give yourself lots of time especially when it comes
to the-- what do you call the people
that assist in the transfers?
>> Transporters.
>> The transporters.
Give yourself, a lot some time with the transporters.
Often whatever country you're
in that is not their native language,
it doesn't matter what country you travel to.
I've found that, you know, in Switzerland, if there,
anyway they're from all over the world
and they generally don't deal with people
that have severe disabilities.
Generally help the elderly maybe that can move
around more easily, and so you have
to walk them though the lifts and transfers.
And often you have to repeat it in many different ways
and maybe show them if you don't speak the same languages
as they do, show them what needs to be done.
And maintain their attention because I noticed
at the London Heathrow for instance,
they wonder off really very easily.
So I just keep-- try to keep their attention and here
in Seattle in the International side, they have a tendency
to just be on their cell phone all the time.
So it's just good to just keep talking
and constantly be engaged with an individual.
>> What about yourself?
>> My name is Joe Meyer, injured just a little bit over 6 years
from a motorcycle racing accident.
So I was having fun at least when I had my injury
up until it wasn't fun anymore.
I'm C4, but I've got a little bit of C6 and C5 function,
incomplete, luckily so I have a lot more function
in up here in C4.
I live with my wife and my 3 young daughters.
And in these 6 years I've been injured, I've probably flown 5
or 6 times around the country anyway
and I had reasonable good luck.
And I'm generally pretty happy with the airlines.
I've flown on Alaska in Frontier
and I think Continental and Delta.
Alaska is good, but you never know.
Some days are good, some days are bad.
Frontier was good.
I'm from Kansas originally.
We flew on Frontier back to Kansas.
Delta, lost my wheelchair.
It just wasn't there when I got to San Diego.
And there goes Continental decided to lower my chair
onto the airplane on its side
so that the armrest was all bent up, but they replaced
that a few months later.
But it got done.
But all in all I think like everybody else has already said,
the airline people are always very helpful
and for the most part even in general, I've--
I don't think I've never had anybody turn me
down when I ask them for help in general about anything.
So people I think are all pretty willing to help
out all along the way.
For me since I travel with my wife, she doesn't get much
of a vacation unfortunately
because she becomes my caregiver,
but it's actually probably easier for me
because I don't have to worry so much about transferring myself
or having a proper shower chair or whatever it may be,
'cause my wife can make up the difference just
by being there to help out.
I think in general, ask people who traveled, it's, in general,
that's a good advice
about everything is ask people who've done it.
I know-- one of the people I've met when I was injured,
you know, told me a few basic things about how he traveled
and suddenly you realize you can.
And like I said, I've done it 5 or 6 times now.
At least once or twice a year, we fly somewhere.
I mean I'm-- what I need and what it takes for me
to travel is unique compared to Chris
and I know there is certain shortcuts we can take
and there's a few things we come up with to be inventive.
For instance, luckily, one positive outcome
of my injury is I don't sweat and I don't stink,
so I may not have a bath that often.
So I literally go for like a week without a shower
and it's not a problem.
[Laughter] Okay?
So, who cares about having a shower chair
if you're not going to take a shower?
>> Are you sure?
[ Laughter]
>>> It works and trust me my wife would tell me otherwise,
if that were the case.
But things like that, you know, just to be a little bit crude,
waste paper baskets work.
You know. A garbage bag, a grocery bag,
and a waste paper basket, you got a toilet, okay?
So you can make things work.
Like what he said about take a furniture out of the room
or having furniture brought
in that's why my biggest concern is can I just get my chair into
and maneuver in the room, since I do fam--
travel with my kids and my wife.
We have 2 beds in the room, and it's hard for me
to [inaudible] horn in to a 2 bedded room.
It'd be nice if we can just get a cane
but that's not always the case.
But I guess, yeah, we-- think about what you do,
what you need personally, how can you adapt.
And then you ask what we don't for instance, I don't worry
that much about getting a handicapped accessible room.
I just want a room I can roll into and get to the bed.
That's it.
And if I and get into the bathroom.
I can just get in, that's pretty much all I need from a room.
But again that's me.
>> Actually, interesting thing about rooms
that I find is I don't generally check ahead too much
on the hotel if it's a place I've never been to before,
but I will ask to see the room before I check
in if they can let me do that just to see
if the bathroom does work.
I was just down in Portland for instance at this one hotel,
and I can't get my chair in the door, past the toilet
to turn left or right
to get either towards the tub or towards the sink.
And I asked them if they would take the door off,
which was often an option that you can do,
and generally they'll take the door off,
this particular place they didn't want to, but we figured
out a way to get it off anyway.
But there's still wasn't enough room, so I switched hotels.
Accessible rooms are sometimes less accessible
than the non-accessible rooms, especially if you're traveling
with a like a commode seat, you know, that something
that you put in the padded seat
that you put on top of the toilet.
The accessible rooms are often have a high seat.
So if you add one of these padded seats on top, it's,
you know, 10 stories tall.
A standard toilet seat, you know, with this padded seat
on top, you got lots of space.
So really just-- if you have a chance going to the hotel
and you haven't called ahead to find out
or get pictures, just take a look.
And if the room's not going to work for you,
ask to look at a different room.
Same thing with the bedding.
I've stayed at this one place
where they had-- they are nice room.
They had a fire place and it's going to be so nice and relaxing
and all that, had a Tempur-Pedic mattress,
and a Tempur-Pedic mattress doesn't work for me.
It feels like I am lying on concrete,
'cause it adds pressure to every part of my body
and place even hard pressure to every part of me,
so it feels like concrete.
Plus, when I try to move on it I just sink in.
So I, you know, had to move to a different room.
So definitely, you know, look,
check out whatever you can when you can.
Ask for-- if you need to ask for a transfer bench,
you can also make phone calls to the ALS Society
or the MS Donor Closet or any of those places in the city
that you're going to and see
if they can loan you a transfer bench or some equipment
that you can use and you can just pick it
up while you're down there.
You know, one day without a shower bench for me is
about as long as I want to go without a shower.
Well, I sponge bath myself, but, you know, really I try to bathe
at least a couple times a week.
But yeah, that's the biggest-- I don't really sweat either
but I just-- I don't wake up unless I get wet.
>> Is a holiday inn, if that room works for you in Seattle,
is there a chance that it would work for you anywhere else,
or is it you have to check out every single [inaudible]
in a few [inaudible] rather maybe?
>> Well personally, I found that the same chain is usually run--
it's usually managed independently.
They own their own properties
or they manage their own properties.
And so each of the rooms are going
to be different even if it's a big chain.
And some of the chains are more uniform like the--
I can't remember the height expressed
or whatever the new height.
Things are-- they all look the same and they're all the same,
but holiday inns are all different,
their models are all different, quality is also different.
>> So nothing that can--
>> Nothing.
>> Yeah. Yeah.
So Joe, you talked about having your wife travel kind
of like your caregiver, are there things
that you guys would recommend in terms of, you know,
kind of things to be worked up with your caregiver?
Obviously you guys probably know how to communicate.
>> Yeah, definitely.
I mean, I feel bad when we travel 'cause my wife--
she works hard because she is taking care of me
and she is taking care of the kids,
so she doesn't get a lot of vacation.
I have considered-- I haven't done it yet,
but I definitely considered hiring
or checking my current caregiver along with us.
You know, we have to work it out, pay their way or pay them,
you know, how'd you want to work it out financially,
but to take a caregiver with you wouldn't be a half bad idea
if your primary caregiver is going to be your wife
or your significant other, otherwise.
My sister lives in Illinois.
She happens to be a rehab psychologist working
on a hospital there, and she--
I'm thinking about visiting her this summer and she's talked
to a few people there who will be more than happy to, you know,
come in and help out and give my wife a break while I'm there
visiting her.
So, yeah, think about things like that, too.
Getting caregivers on the road also.
I was going to mention about the lift, I'm a huge advocate
of just learning to do manual pivot transfers.
I train all my caregivers how to do it.
I can't imagine trying to deal with a Hoyer lift on the road.
And for me, my current caregiver is 5' 2"
and 105 pounds, and I'm 210 pounds.
And she transfers me, you know, all the time,
three times a night actually when we do a full shower night.
So, think about definitely learning
to do manual transfers and, yeah,
think about taking a caregiver with you,
if it's a big trip you really want to do and you want
to give your wife a break.
>> How about you, do you travel with caregivers?
>> Rarely.
I, generally, lately have been traveling
to where I have family.
Now that they don't really help me, and I stay in hotels,
but the concept of-- so now but they'll help me like, you know,
get a shower bench out and set it up.
As well the hotel staff and actually I find
that the hotel staff is a lot easier to communicate with.
I suggest nobody ever travels to visit family, but that's--
>> That's a whole other story.
>> That's a whole other story.
No, but I have traveled with a friend before who's helped me
out and it's really exhausting for them because they feel
like they need to help you all the time.
And that is-- it-- I feel bad for them not being able
to enjoy as much of it.
And so, I recommend if you can to find somebody down who's been
in whatever location you're going, if you can,
you can call some of the agencies.
They can often send somebody over.
Or if you know somebody who lives in that city,
they might know somebody that's a college student
or a nursing student or somebody
who could use just a little extra cash
to help you out for a few hours.
>> Karen, do you have any other suggestions in terms
of caregivers on the road?
>> Well, for me, I do need to travel with a caregiver.
And as Joe is mentioning how he travels with his wife,
I would definitely 100 percent say that you and your wife
and your kids need to go with a caregiver
because 100 percent you and your wife and you kids are going
to have a different experience
like no other trip you've ever had 'cause it's going to--
it's just going to be much more relaxing.
I just remembered when it was just me and my
and my mom was always my caregiver,
and she was doing everything
and that she wasn't enjoying the opportunities
of really what we were doing, whether it was with family
or what not because she was so exhausted.
But, like for myself it's something
that I personally can't travel on my own and you are limited
with the different kind of help that you get
when you need certain services as well.
>> So, do you always hire somebody that you know
or do you depend on kind of where you're traveling and when?
>> I am not as courageous as Chris, so I go with someone
that I know because I don't know what I'm going to get
at the other end and I do care.
>> One other question I was going to ask you,
when we're talking about lifts and it's Joe's got, you know,
the opportunity to train people to transfer him,
do you ever arrange for lifts or do people have to do that?
That's not exactly an easy travel item.
>> It isn't.
That's why-- I-- whenever I direct somebody, I would have--
I would get information from them in regards
to contacting a durable medical equipment company in the city
that they would be visiting and I could do all that information
for them and get what they need
and have it delivered to the hotel.
>> That's right.
So Joe, you mentioned at the beginning
that you had had an opportunity to actually lose
in how many airlines with your chair,
how did you deal with that?
>> Well, after my wife calmed down [laughter],
we got into San Diego late at night and that--
I'll tell the story real quick 'cause it is,
I guess amusing now.
We fly in on this direct flight from here to San Diego
but it flew to Salt Lake first, and I'm guessing
that my chair went on last so it came off first when we landed
in San-- in Salt Lake and then they just didn't put it back
on the plane.
Now, you would think the smart thing to do would be
to leave it there in Salt Lake, but now they put it
on a plane to Portland.
So, my chair went to Portland and I went to San Diego.
Luckily, they scrambled.
They got-- they had a [inaudible], you know,
online for situations like that, that was at Delta at that time,
and by the time they put me on a regular and manual chair,
loaded me up in the van, we had a transport to the hotel.
By time we got to the hotel, they had,
you know, your basic scooter.
Oh no, it was a chair but it was more
of a rehab chair not a full blown paralyzed spinal cord
injury chair.
Luckily, I've got enough function
that I could make it work and I had to put up with
that 'til 1 o'clock the next afternoon.
When my chair showed up and they brought it out to the hotel
and we were good to go.
>> What did they offer you or anything--
>> We got each-- so, there's 4 of us traveling.
We each got 200 dollar vouchers.
So we got 800 dollars travel vouchers out of the deal.
>> Can they do that?
>> So, they were very good about it.
At everything, you know, it wasn't great but it all worked
out about as well as it could.
And probably just with that particular trip,
the hotel room we we're in was small.
Nice hotel but older, you know, 2, 3-inch lift that I had
to slam into just to get up and over into the room.
I can pretty much roll through the room to the other end
and turn around and roll back out, so not a lot of room.
But, yeah, that was a situation for me losing my chair.
>> Chris, do you have any good story?
>> You know, I haven't had any situations
with me losing my chair which is-- sounds absolutely awful.
I had situations where they've have broken my chair before.
It was actually this one and they didn't fold the back down
and so the back-- there's a bushing right here
where it pivots, that just snapped when it was put
in a cargo hold so you'd sit back into it and it's
like one side would flap backwards.
In that one there there's nothing that they could do,
so they just set me up with the Durable Medical Equipment place
and I just put a bunch of duct tape around it for my trip
and then when I got back home, I went to Durable Medical Place
and had it fixed, and they were very good about it.
You know, they were able to fix it, you know, that day
and it was all paid for by Alaska and that sort of thing.
But I did have a really funny adventure in Alabama
when we went to nationals over there.
They're transferring me off the plane from the transfer seat
onto their just regular chair to actually, no,
it was this chair they just rolled me up the jet way
and they're so used to the chairs that they have
at the airport that have really big wheels in the front
so they can go over those lifts on the jet way.
Well, these have tiny little wheels.
And so when you ram these tiny little wheels
into a jet way that's got about an inch lift,
all it does is stop the chair.
And so this woman started pushing, she's going as fast
as she could, rammed me into this and I flew right
out off the chair onto the jet way, which of course ensues
with a lot of panic of everybody around you,
which is probably the most entertainment you'll ever get
in a day.
There's people running around you panicking because you are
out of your chair, and they all want to get you into the chair
as fast as possible, and that's great.
No matter what, and that's why you have to like get everybody
to stop and start listening to this like no,
this is not a problem.
I fell out of my chair all the time.
[Laughter] Just get under my knees, get under my arms,
just pick me up, don't hurt your back and just put me back
in the chair and everything is fine.
But it is-- it's that sort of thing is if you see
that there is going to be an obstacle,
slow people down around you.
It's-- Once you got to maintain that line of communication
with anybody who is helping you because I try now
to just make sure-- okay, little wheelie here, wheelie here.
You know, every time that I am going to see one of those things
that they make sure that I don't get thrown out the chair.
Not that I mind being thrown in a chair,
they just slow it all down.
>> So luggage.
What else do you pack with you other
than kind of the usual stuff?
>> Well, I have to pack in a lot
of stuff 'cause I just require a lot of stuff.
Let me think what kind of special things--
wait, I just, you know, we have a list
and it's pretty long, a big grocery list.
A kind of, you know, the classic.
If you take it, you won't need it kind of approach,
so we take more than we probably need
and usually we don't need it.
But for sure, you know, if it's unusual and you're not going
to be able to get it on the other end quickly,
you probably want to take it with you.
But, yeah, I just got a big one list of, you know,
what do I need and what do I need for contingencies,
and we have if, you know, set the tools.
Just, yeah, make a list as you do it and I keep it
with me the next time I guess for packing the next time.
There's something else I was going to say--
>> Is it true there's no charge for the medical bags?
>> Yes. Yeah, I think, yeah.
>> Kindly repeat that down.
>> For instance, I've got a portable shower chair,
which is expensive but really, really, really, really worth it.
But, yeah, you don't have to pay a luggage charge for that.
It's something I was going to jump off
on as Chris said I find too that the people
at the airlines can be a little bit overly helpful.
And when they wanted get you in that seat and they're like,
"Okay, what can we do?"
And I'm just like, okay, and but they tend to be over anxious.
They wanted, you know, do things.
So you have to calm-- you do have to sort of slow them down
and say, "Okay, this is how it's going to work.
Here is what works for me," you know.
And but, yeah, the good news is they're very helpful.
>> Sometimes I pack a, one of those padded commode seats
and so I'll put that in my luggage,
lots of urologicals just in case you have extras,
you bring them on board.
Whatever you're going to need, bring enough so that
in case you're ever stuck in an airport,
you have everything you need for an extra day, so your meds
for an extra day, bladder management stuff
for an extra day.
>> Don't check the stuff.
If you-- if it's really important, don't check it.
>> Don't check it.
>> Yes.
>> Put in a back pack to carry on.
>> And they're a little more lenient with us as far
as how much-- how many bags we can sort of carry as carry-on.
So, you know, if you have like 3 bags or something like that,
they're a lot more lenient.
I-- If I'm going to have a long flight for instance,
I carry an extra cushion.
I have a ROHO that I put on the--
I have them removed from the airline's seat
and I put the ROHO on that, you know, on the base platform.
It's a flotation device as well, so you know it works.
And it's a lot more comfortable, plus it doesn't raise you
up to 4 inches that they put you on a normal cushion would
on top of the airline seat.
So you can sit more comfortably in the seat.
It makes a huge difference.
[ Inaudible Remark ]
>> Alright, so we ask about for a skin protection.
>> Exactly.
Get a lot more skin protection that way.
It's a lot more comfortable if it's in like an 8-hour flight
to London for instance.
>> Yeah.
>> It makes a huge difference between sitting in one
of their seats and sitting in a seat that's--
that you're used to sitting in.
[ Inaudible Remark ]
Yup. You definitely-- and you definitely want
to be moving as much as possible.
We all run into-- we're still going to have the same problems
with deep vein thrombosis, so we need to make sure you hydrate.
So, if you can as far as bladder management is concerned use an
indwelling catheter for the trip, if it's going
to be a long trip so you can maintain your hydration.
[ Inaudible Remark ]
Yeah. Bring whatever you need to do.
And just because you need to stay hydrated and you need
to move around, stretch, you know, move your legs around
or have somebody move your legs around.
If you're flying alone, the flight attendants--
especially on at least British Airways,
they are like the best people ever
that will do almost anything.
Oh, I haven't asked for everything, so we'll see,
but they are extremely helpful.
They'll help you move your legs around.
They'll rearrange things.
They'll bring you bottles of water instead of glasses
of water for instance.
>> Yeah.
>> And all that stuff.
Oh, and it's definitely the case,
if you do have medical things that you are sending through,
just put whatever you have on the top of your luggage so that
if they unzip it to double check, it's right on top
and they'll see that it's there.
'Cause if they see a bunch of clothes first,
then they probably will baulk at it and say, you know,
you're really using it for your clothing.
>> So the question is, so you've gotten there and now what?
How do you get transportation?
What do you do for that?
>> The 2 things we've always done, usually we just rent a van
to the tune of about 100 bucks a day,
maybe 90 if you rent it for a week.
The trip we took to San Diego, we transported to the hotel
and went to SeaWorld, and luckily it was
about a half a mile from SeaWorld, so I just wheeled
and anything else we did, we just took public transportation.
I'm really happy and comfortable
with public transportation system here in Seattle.
So whenever I want go to San Diego, I got on their website,
look where the lines were from point A
to point B and did it that way.
So, my experience is get or rent a van
or use public transportation.
Beyond that, I can't say.
>> When I've traveled to San Diego, I actually--
'cause I have family down there, I actually rent a car
through Hertz or Alamo or one of those and you call ahead
and they can put hand controls in pretty much any car.
I've used a Chevy Malibu works really well
and Impala works really well.
Sort of a mid to full-sized car that seems to work pretty well
as far as getting in and out for me.
Matter of fact, when I was down to San Diego, last time I hopped
in to one of the new Camaro's
and that worked really well for me, too.
So, that'll be my next rental.
But for the price of a van rental,
I can rent a Camaro, so, you know.
>> You might.
>> Might as well for me.
But if you're doing something like that, make sure you bring--
if you can transfer yourself but you aren't really sure
about the bed or the car rental or anything like that,
make sure you bring a transfer board.
Because sometimes the gap between your chair
and the actual seat on--
in the car can be a little bit greater than it appears.
So it just adds a little extra bump there.
[ Inaudible Remark ]
Europe? I've used mass transit.
I've been, yeah.
The-- In Switzerland, it was pretty good.
The buses all had-- they had ramps,
which were these plastic things that were folded
up behind the driver that when the door is open the driver will
then get up, unfold them, put it down, and then have to push you
up the ramp 'cause it was about a 45 degree angle.
But, it worked.
And they won't even do that for people with strollers.
So, I mean they, you know, they're a lot more helpful
to somebody in a wheelchair than somebody carrying a lot of bags
or some or somebody pushing a stroller.
The trams, the newer trams are generally kind
of like are light rails here where the--
and this is true throughout most of Northern Europe where the--
there's a ramp that sort of kicks out and it's
at sidewalk level and it comes out really well
and they're pretty fairly accessible.
Trains-- There're trains that I've found,
I've only done trains in the U.S. And the trains
in the U.S. work really well.
I would imagine in Europe they're probably little more
difficult to except for the newer ones.
I'm sure the TGV or any of those high speed trains are
quite accessible.
>> When I'm on a Caribbean cruise, I went to Saint Thomas,
and I was told it was a [inaudible] sea for me.
And I was told through all the accommodations
that there were no accessible transportation opportunities
for myself, but I Googled.
And I just looked around and I just put
in Saint Thomas wheelchair accessible transportation
and I found it.
And then I just booked with that gentleman
and we just made an excursion out of it.
So, when somebody tells you no, don't always go
with their first instinct of no, because not only we find
that possibility is available to you,
but you're also educating somebody else so the next person
that comes along will have that opportunity as well.
And I also found out just regards to Amtrak, we need to go
and you are going to be a part of a sleeper car,
it is only for 2 people, really only 1 wheelchair and then
like a companion and I just--
I found out that the dimensions are about 6 feet
by 8 inches wide by 7 feet inches long.
So, it's not huge and-- but it's on the first floor,
they don't have any kind of lift that will take you up to
where the dining car would be or anything like that.
So all of your meals would be in your room whether
if somebody bring in to you or a caregiver or a friend
or whoever is traveling with you, so.
>> So the question is, is there any kind of quirks or specials
or deals for with somebody with a disability?
Who wants to--
>> You got it.
>> Okay. Amtrak, yes.
They do have a discount.
At Greyhound, your companion that will be traveling
with you would be 50 percent off.
And I'm sorry I don't have the discount for Amtrak,
but I know that there is one.
>> So the question is, is there any way possible
that you can get into an airline bathroom?
>> Airplane--
>> Airplane, actually on a plane?
>> Yes, there are different airplanes depending
on what kind of-- whatever the-- gosh, I'm trying to think of--
gosh, not a 747, but depending on the type
of the plane, thank you, yes.
They will have-- some will have a wheelchair accessible restroom
and then what you will need to ask for is an aisle chair.
So you can transfer over to the aisle chair
and then have assistance to get
into that wheelchair accessible restroom.
It's not easy but it's there.
>> So you would, on those, you would have to actually check
to see what plane is flying on your flight to see whether
that would even be possible?
>> Correct.
>> Have you ever done anything like that, Chris?
>> I know that on-- when I [inaudible], the A380
and [inaudible] 747, both have accessible restrooms.
However, I haven't even tried to do it because it's the lifting
into the chair and then out of the chair
and they don't have transfer teams on the plane obviously,
so the flight attendants have to do that.
And it adds a lot of difficulty, but I know it can be done.
If you can, if you don't have to go in to the restroom
for your flight, you're much better off.
Try to make yourself as comfortable as possible.
Read, sleep, eat, you know.
>> Hail Mary?
>> Don't drink alcohol or if you do drink alcohol,
drink a little bit amount of it
because it's really not very good on an airplane.
>> Thank you.
>> That was good question.
Is it possible to change an incontinence pad sitting down?
>> Is it possible to change an incontinence pad sitting down?
Anybody had--
>> It's possible to do anything.
>> I can imagine that it would be easy.
But one thing I would recommend actually,
first thing you're going to-- generally first on the plane.
So give yourself a lot of time.
No matter whether it's a domestic
or international flight, ask for a pillow,
ask for a blanket or 2.
It just-- you can give yourself a lot more privacy that way.
And if you do need to change something,
you will have a lot more opportunity there.
I keep my backpack, instead of having them put it above me,
I actually just keep it behind my knees.
When I'm traveling, I have a Foley in
and I keep an overnight bag and I just connect it
when I get on the flight.
It's in my backpack so it's just a little tube that's kind
of hanging out of my backpack,
and it's just sitting behind my knees.
I can unplug and put it back when I get off the plane,
and that works really well for me.
But yeah, keep everything you need right in front of you,
ask for blankets and you'd be surprised what you can--
how you can wiggle around and wiggle in those little seats.
>> So one other question I had is just whether
or not there is anything about different size that you've gone
that had been difficult.
So you said you went to SeaWorld,
was that pretty accessible?
Is there things that you were not able to do?
>> Well, yeah.
I think it was-- we've been at SeaWorld and Disney World.
The wheelchair accessible rides pretty much aren't
because they're thinking manual chair not 600 pound--
>> Yeah.
>> Electric chair, a power chair.
I think when we were at the Disneyland,
the one that I can get on was like Dumbos, little kiddy ride,
which I'm with my kids so it worked okay, but no.
I mean out of-- that was like the 1 out of 10 rides
that were supposed to be accessible, they're not.
They're thinking smaller manual chairs.
But other than that, yeah, you can roll around all
over the place in Disneyland and SeaWorld.
And generally get to where you need to be to see what's going
on and see the shows, but, yeah, the actual rides, no.
>> I actually did the roller coaster at New York,
New York when I was in Vegas.
And there I just asked a couple of guys in the line
to just pick me up and they just picked me up and hooked me
in the roller coaster.
So, the people that work at these places won't touch you,
[inaudible] you one up, but you'd be amazed to who's going
to help you out somewhere in the line.
Yeah, the couple of guys just kind of they'll pick you up,
drop you in and it works pretty well.
Roller coasters are not the most comfortable thing.
Those little bars holding you down, only hold you
down so much, and so you lift up
and then you're bony butts smacks onto these plastic seats.
So, it's not the most comfortable thing
to be going upside down and spinning around.
But it was, it can be a lot of fun.
>> It was worth it--
>> [Inaudible remark] let me [inaudible] because it was
such a pain to get me out.
>> I do have another perk.
>> Another perk?
>> One thing that I wanted to add in regards to this is
when Chris is talking about sitting on his ROHO seat,
what I do is I sit on what's called a Mini-Max,
and it is a ROHO seat.
I actually lean against one just for protection for my back
and I also then sit on one.
So instead of sitting on the 4-inch one
on the airplane, I sit on my Mini-Max.
And then when I went to Disney World or when I'm doing any--
if I go boating or anything like that, I will then sit
on my 2-inch Mini-Max and then that's really, really helpful.
So, then when you're lifted up, your bone butt won't hit.
>> I might have to get one [laughter].
>> We're all learning.
>> Exactly.
>> Chris is saying that one of the ways that he's kind
of anticipated travelling is to actually mail stuff ahead
of time to the hotel or the rental car place
so that it's there waiting for him when it gets there and--
[ Inaudible Remark ]
Yeah, so you don't have to worry about--
[ Inaudible Remark ]
Right, trying to negotiate
with different medical equipment company
and you have your insurance do it.
So, the bladder supplies for longer than you want to pack
in your travel bag if you send enough ahead you can do it
that way.
>> It also reminds me that if you are going to be traveling
for any length of time, also if you can get your prescriptions
or whatever you take regularly, if you can get a copy
of those prescriptions [inaudible] just
in case you accidentally knock over all your meds
and they get flushed down the toilet or you stayed longer
than you're anticipate-- than you anticipate.
'Cause if you're in a country you really love and you can get
around and you want to stay there
for a little bit longer, you know, you should.
It's a great opportunity to meet new people, to expose yourself
to new environment, expose people to you--
different cultures, people with different abilities.
So carry around your prescriptions
with you if you can.
And also not a bad idea to, if you're prone to UTI's
or something like that, maybe carry a prescription
for some sort of antibiotic that works for you, if you are going
to be traveling in a place where you--
and you recognize the symptoms.
With that, you should obviously talk to your physician ahead
to make sure that that's okay, but it's good to be prepared.
>> I was just also going to mention, when traveling,
when flying, also have a list of all of your medications
and the milligrams and everything that you take.
So if and when the TSA pull you aside, you have proof.
And what I've actually done is I've had my pharmacy print
out all of the information with my doctor's telephone numbers
and everything just so they have proof by somebody
that has a heading, letter head with a name on it.
So that's also helpful, too.
>> So the question is, if you're traveling
to Europe what are the countries that may be more friendly?
What are the ones to probably avoid?
Do you--
>> Friendly in-- with respect to friendly, what do you--
what's your intent on friendly?
>> Is it accessibility?
>> [Inaudible] for example that [inaudible]
that was not inaccessible.
>> Which is actually very true.
>> Paris Metro is not really accessible.
>> In the London too, there's been some spots, isn't also.
The-- Most everything can be friendly, it's a little more--
if you can travel in a manual chair, I definitely,
definitely recommend you do
so because it will allow you a lot more movement
into those places as well,
because you will find people can help you down some stairs.
They can hold you down, you know, 12 flights of stairs
if they need to and get you into the doors and block for you
and do a lot of things and you don't need
to speak the language.
As far as general accessibility,
I found that the further north you are in Europe
that you're more accessible the general layout is
than when you go further south.
But as far as people just jumping out and helping you,
the further south you are, the more people are going
to help you, like just jump out and help you and some
of them aggressively so.
So you might want to once again smile, slow down.
>> Okay, so the question is about traveling on Greyhound.
>> I have not traveled on Greyhound,
but yes, they will assist you.
If you are able to travel on your own,
you have to be completely independent in regards to--
if you need to use the rest room or anything,
they don't allow personnel to be hands-on with you,
but in regards to getting up and down on a lift to get
on the bus, they have equipment to do so.
They just ask for 48 hours advance and you would need
to make that reservation over the phone with a reservationist
and that may-- would be able to take care of you.
>> So I just have one last question and that is,
where is your next travel plans?
So Joe, what are you doing next?
Where are you going?
>> We are planning on going back home to Kansas this summer
to see the Wheat Harvest, which I haven't seen--
a group on a farm in Kansas,
which I haven't seen since I was injured.
And my wife is seriously considering driving,
in taking 3 weeks to do it, taking our van
and just doing a big road trip, which is going
to be a whole new adventure for us.
If we don't drive, then yeah, we'll probably fly again.
But that's my next plan, yeah.
>> Yeah, that sounds great.
How about you Chris?
>> Next plans are visit my niece and nephew down in [inaudible].
I'm not sure how long I'll stay
down there maybe forever, who knows.
>> You say that all the time.
>> I say that all the time, exactly.
I have been saying that for 5 years now.
>> In the winter especially.
>> In the winter especially.
Yeah, it does, and renting a Camaro.
[ Laughter ]
>> And how about you Karen?
>> Gosh, I don't have any travel plan.
So, I'm going to say Tuscany 'cause that's
where I really want to go.
>> That sounds like a great plan.
Well, thank you guys so much.
We really appreciate you all being here and taking the time
to share your stories with us.
So, I just want to thank you again
and if you wouldn't mind hanging out for few minutes so people
if they have other questions, that'd be awesome.
[ Applause ]