To provide an opportunity for ALS caregivers to become acquainted with ALS Traveling tools, or concepts that many have not previously been exposed to.   

Overcoming Traveling Challenges Workshop Companion

Caregiver’s collective foundation of real, practical, “life-learned” knowledge related to Overcoming the Daily Challenges of Living with ALS.

Overcoming Challenges of ALS Publications

Planes, Trains &amp; Boats (Continued)

Video: Virtual Meeting Knowledge Share on Trains &amp; Boats

Rideshare, Taxi, Metro Bus

Video: Virtual Meeting Knowledge Share on Rideshares &amp; Taxis

Cruising and taking trains so Scott you're up first.

So I'm the how not to do things portion of this.

which spoiler is not the most Ada place on the planet to begin with but one of our trips included taking a train and

we did have a friend along to help and Tammy was still fairly mobile, but yours truly who was supposed to know what he was doing managed to get us loaded

situated ready to go on an Italian train.

And then I realized I put us in the wrong seats.

So we went from being relaxed with lots of time to throwing stuff off the train did not throw Tammy close

then recapturing everything and going back and actually getting an art teacher or supposed to be so that experience. Like I said, I should have known better. But when you book a train

when you book a train in Europe, you could have non-reserved are reserved seats literally ours reserved because the little old Italian lady I was not impressed that we were in hers,

we got resituated the the biggest takeaway and I think we've said this throughout is patients a sense of humor.

And most if not, everyone is accommodating like like Lynn was saying on the air travel people understand that and so forth.

99.9% of these occasions yet. He has put better wheelchair and people have to wait they are more than happy to do that. And it's just humans aren't that far gone,

but we were trying to find an elevator in the Milan train station

and the little help guy did speak in English and he's like I'm shaking his head at us like we were idiots and finally, I think somebody said disabled this

audibly you go around over there. So yes, there's an elevator in the Milan. In station not readily signed, but we just we just

kept at it kept at it patients sense of humor persistence and we managed to find the elevator in the train station. So

or maybe if I'd listened to Lynn and actually planned a week ahead. I known that we had those reserved frame.

that was our training experience we survived and Venice was lovely. So take the trip. And I'm I know Steve and I think Lynn to in

Chicago we've used Amtrak and I did I was curious how we would get across the track right? Because there's a gap between the platform and where the train was

for those of you who haven't done that before they they come and they put this little platform thing. Calm down that cuz like a bridge between where

you are and the inside of the train and then your wheelchair just goes right across that bridge if you will and then you you know, there's spots

there. You can park your wheelchair within the commuter trains. So it's very easy to get on and off those trains. I don't know Lynn if

And yeah, nothing else really been on a couple a couple trains the subway in Chicago and it was it was very similar. They just had like a little

very quick and easy bridge to get from the platform onto the train and then we also use the Amtrak we got on here in St. Louis and they had basically the ramp to get on

was like a because the train wherever we boarded the train it was

several steps down and they had like a long ramp

with a you know, 180 degree Corner in there that you just use your wheelchair to get up. So it was it was very straightforward.

captain obvious but it's just a matter of advocating. Yeah, you know that the

someone has done this before so it's either finding the right person or someone who was familiar with the situation and you can get where you need to go without

talking about cruises since we just got done time. I trains you. Can you can travel on a cruise ship in a power chair?

The larger ships are going to be most capable of supporting these chairs. So if it's a small ship probably not a power chair, I

would work you work directly with them to coordinate the details about your specific chair and the Ability needs of your cabin overall just to make doggone

sure that that particular boat you're going on supports the size of chair that you have also be aware. You can rent equipment

to be on the ship when you arrive. So maybe you just at the point you just need a scooter and it will be more convenient. If you have a scooter you can get those on the ship

you can get some lift assist devices for when you're in the room. So there's a lot of accommodations that they can make even though the room might be accessible to make it even more comfortable for you. So consider

that and discuss that with the person you're making arrangements with you do need to book early because those accessible rooms go very quickly.

If your Port of Call is dot that means the boats kind of going right up onto the dock you can get out in your wheelchair, but if it's tendered and that means that in order to get tool

and you're going to have to get on a small boat assume like You're not going to be able to make that Port it'll have to be a ship day for you

and also don't assume that every port is going to have wheelchair accessible Transportation. So you might want to go on a particular outing that's offered. Make

sure you're checking to see if that Transportation really is wheelchair accessible or you know research and do your own Arrangements at that particular

location to ensure that it is accessible because you know There's a quite a few of them that the transportation is not accessible.

you're expecting to fly in and then from the airport get to your port for your cruise, make sure that your booking

that wheelchair accessible Transportation weeks in advance. So both to get to your cruise and to get from your cruise

back to the airport because I can tell you that there's often, you know, lots of cruises leaving on particular days and those wheelchair accessible Vehicles. They

get booked solid for weeks and you'd be terrible if you got to the airport and you're just like, oh, I'll call Uber accessible Uber to get more taxi in

and you can't get to your cruise because those accessible vehicles are all booked. So don't lose sight of that don't assume that they're going to be available. Make sure that's part of your or

early booking and lock those in so those would be some thoughts related to cruising.

I thought I saw a question pop up that I want to address real quick.

Kathy asked about taking supplements on a plane and I meant to mention this when I was talking about flying and most Airlines. I think it's a it's a requirement that they offer

medical equipment medical supplies to be checked. So if you have like like for Steve and I we have a lot of formula when we travel and that's really heavy, but it's required by law. For

them to allow me to check that baggage for free. So if you have stuff like that, you can check that on your plane and they also allow you to take that if it's if you have a medical exception you can

also take it as a carry-on but make sure that you talk with your airline ahead of time and you've got the proper, you know, exception the paperwork, whatever to get it onto the aircraft with you

and never check pills medication that you may need.

like we were saying earlier. It's really it can be very difficult to get those especially if you're in a heavy power chair. It can be difficult to get that at the drop of a hat. Like we're all

used to Uber now or just call a taxi. It doesn't exactly work like that with a wheelchair so public buses a lot at some of them have ramps but some of them have lifts

and if you've got a big wheelchair those lifts Can cause problems technically they work right? All of their wheelchairs are standard size and they should fit into this

lift. But these lifts are a lot of them have like a safety gate on the back. And if you've got a big power chair, we hang a backpack on the back. We've got him tilted back, you know,

and that will tell par enough back that it's going to trip that safety trigger. And so if you get on this this lift, right and the safety and the lift will go up because the safety trigger set you got to be prepared

and you got to know how to fix that and it's Well, you just have to make sure you take all the stuff off the back of your chair and tilt it, you know, tilt it all the way forward and you should be able to fit but

just knowing ahead of time what to expect and like maybe look into if it has a ramp or lift. And if you want to deal with that battle then try to go for the ramp

and then as far as taxis, not all taxis are created equal. I think earlier Caroline said the side entry Vans are typically easier to use and

I have found that exact. Exact situation we call the taxi. Oh and time we were traveling and I didn't even ask. I didn't even think to ask but the taxi that showed up was a rear entry

and the rear entry bands the specific one. We were using the height threshold to get into the back of a van is its much smaller because there's like a dip in the ceiling at the back of the van.

My husband didn't fit and so so it was a kind of a circus act need to get him, you know, take all of his headgear off and all of the headrest off of the wheelchair to get Man

to the van and then I had to put it back and I literally the the whole taxi ride. I was holding his head in place because they had rest wouldn't fit inside of the vehicle. And so planning

ahead and making sure you know exactly what kind of vehicle you're going to get. And and if you don't if you want to just have a company in mind that hey this company has the kind of vehicle I want

and knowing that before you go somewhere and then knowing who you're going to call but just just being aware that if you call someone out of the blue and you expect the vehicle to show up to work for You just just

be prepared to have some Creative Solutions to your tiered problems.

I hope that you take away from this topic that it can be daunting, but you can travel by air sea land in

You just need to do your homework and you need to plan ahead.

Do we have any any more questions before we move on to the next topic?

Are you even comments if anybody else has ideas that they want to share?

Destination Considerations

Video: Virtual Meeting Knowledge Share on Planning

Video: Virtual Meeting Knowledge Share on Destinations

Wheelchair Friendly Destinations

the to eat contributors for a successful travel experience our organization and planning a course,

Planning is already fundamental to those who are living a life with ALS. I mean

we literally didn't couldn't go to the bathroom without having a plan.

And so while you can never anticipate every single possible snag, you can plan for contingencies and

secure the right support to assist you with your adventures. So Lynn, I think you've got some things here.

Yeah, I think there's a video for this part. It should be the Dustin video.

So you can go ahead and play it. So in this in this video, you're going to see a trip that my family and I took to Destin Florida couple years ago

and planning ahead for this trip was essential in the first thing we did was use Google Earth and we knew we wanted to go to Destin. So we we got on Google Earth and we kind of stay in the beach looking for ramps looking

for a wheelchair accessible Beach and you know when we found it, we're like, okay, what about this place? And we could see from Google or all of the ramps going on in the back of the hotel. You'll see me, you know traveling

traveling in and out of them here. So the pool was accessible by around and there's also you'll see it here in a minute. There's a big Pavilion that you can get to by a ramp and that was really

important because it was an area for my husband to sit out on the beach without being in the sun, you know, without being exposed to all of the elements

and then the other thing about this civilian. I think it's really important when you're traveling to keep in mind the level of energy for your person with ALS and odds are that

they're going to I get tired more easily and need some time to rest and maybe need a day in between big activities. And so having something having a location at your hotel like a balcony or Pavilion or like

a patio or something where you can still enjoy your destination, but have some rest and relax time is really important. The other thing that we did for this trip.

We knew we knew I wanted to get him onto the beach. I knew I wanted him to be out there in the sand with his son. And so we got these Beach ramps or Beach mats. Excuse me. These are all

weather mats and you can buy them. They can be used for turf or for any kind of landscape rock, but we use them for sand and you see my crew here and we got them all laid out and I just

kind of piecemeal them over to where I wanted to go on the beach

and that was something that was something that we had. You know, we were researching for months in advance of this trip to be able to make this happen

and I think it I think it was really important and kind of a key thing for our trip a goal for us. To be able to get out there and then

one of the other things that we had to keep in mind as whether right like what are you going to do? If you're planning a trip where I'm my plan is to go out on the beach, like what do I do if if the weather is not cooperating? So that was

another reason that we chose this condo because the Pavilion would offer us a solution if well with my plans what to want to cramp so

You're planning should should also include getting advice from from those who have gone before, you know sense and in Reinventing the wheel of the if

you don't have to travel Consultants are great, but nothing beats

talking with the with somebody who has been

talking to another Pals about their experience at that. The nation so in that Spirit linen and Scott will share some travel

I think sorry on destination considerations. I think

maybe first we have Melinda share our little bit about how the ALS Association has helped us because they it incredible some of the work that they can do in their collaborative

the try to help with our destinations as well.

So I have experienced being reached out to from another part of the country

and also helping get someone in the Midwest.

Out and about so an example was that there right before Christmas time. We had a person with ALS Limited in Arizona who is looking

to come into town for a funeral. And so this was a very quick turnaround for them and she was going to fly in and so they

simply asked. Hey, do you have any resources for all and we're looking for employer?

Your left and a power wheelchair because they decided they didn't want to fly with theirs. They don't want to damage their custom wheelchair. Also, they

asked for some bathroom AIDS well, and we you know, we love these sort of request. We take it as a personal like we

need to prioritize expedite and we were able to get them the vent that connects them with the United access. To give them

a van rental to pick them up from the airport. We had

new motion select the items that they requested and have them prepared and

because it was during a holiday season. We personally weren't able to drop it off at the hotel. But that their rental van had enough space

that they were able to take that all up and get it in and get it. So they had a very positive experience with our intervention

or Healthcare and just similarly opposite, you know spring break time. We have some families that are looking to travel and I

called my associates and the Florida area Florida in particular date, you know, you can imagine they might have a lot of requests all over

the country and and unfortunately the ALS Ation, there was not able to offer their loaner items, but

we work together to find exactly the city in town the city the

beach they were going to and we were able to get resources of a DME providers medical equipment

provider that they could rent a few things for a day

You know, we looked into the there are some beach accessible wheelchairs. I don't know Lana if you have any

experience with how those might not you know, they kind of they don't go fully

detailed, but they if a person might be more moderately progressed not advance progressed and moderately progressed. They there are at least and

wheelchairs with the big round. Treads that can that you could go verse and it might not have to use those mat.

But anyway, those are just examples we are just very excited to collaborate we take these types of requests very

very seriously and we like to expedite them

and and so reach out to your care coordinator if you want to travel.

Yeah, I have two examples the one Linda you mentioned the wheelchair on the beach wheelchair is what I call it. You can see a picture from one of our travels actually

showing here. Thanks to the ALS Association because you know, they we were talking and we said we're going to go on this beach trip and I could have killed my LS

care coordinator because she told my husband, you know, they make these wheelchairs that go out onto the beach. I'm like, what the hell are you thinking ladylike? Pete wheelchair,

right? But she connected us up with this provider that we could get the beach wheelchair from and I was terrified. I thought oh my gosh, it's gonna

get stuck in the middle of the beach somewhere and what am I gonna do and the lady looked at me and my care services person. She said Caroline go make your dreams and don't

worry about you know, what if they get stuck just make it happen and it was so wonderful. He got on the beach and he was doing donuts and as a Oh electric wheelchair with the big tires

on it and it was something we talked about for you know years to come but we wouldn't even known that that was an option had we not

you know had that opportunity to talk to our care services coordinator and then they kind of were a Gulf Shores and they pointed us to a company that offered that service so they can

make a big difference and then another plug was I was traveling for work and my husband wanted to come with us. What? Me but it doesn't see the sights

but he needed a scooter at the time in order to really go much of anywhere and I didn't want to deal with like, you know, Lindsay Champion. She is able to take her stuff

on the plane. I didn't want to take a scooter right and put it on the chair on the the plane. So they helped organize actually a sister ALS

Association brought a scooter to our hotel. So just don't shortchange just the incredible Partnerships that they have throughout the United States and

you do look to leverage them as you can so I would just encourage you. I don't know if anybody else has examples like that on the call, but I know I certainly benefited from that.

I think this is the one it's called typical Saturday. I think go ahead and play it. Okay. So in this video

you're going to see a lot of stuff and it's a typical Saturday in our life. This is a couple years ago. So my stepson looks real small, but

you'll see a few of our local stops where we go all the time and then you'll also see some more popular venues. And so the first step we have here is my stepson soccer tournament. And one thing I want to point out is

most of your local most of your local destinations are pretty accessible and you can make it happen with a little creativity

most wheelchairs are able to go over flattish terrain as long as it's dry. So, you know, I roll them out there and got them set up and then

don't be afraid to give them a call beforehand. Right? Like if you say hey wheelchair needs to get out to this game most places are going to make it happen. And then yeah, you'll also see you

also see me getting creative with our tube feed. Are but the next place we go my stepson. He also plays hockey. So the next place after we packed

up all the soccer stuff. We went to a local ice rink.

And like I said just make a phone call if you're not sure about it, but most places they'll figure it out. Like they'll help you out. And then one thing that really makes the difference is

we always travel with a doorstop and it's the simplest thing but it can really help you get around

and then also side note I swings are very cold. So if you're going there take a blanket and are the other fun thing about hockey is a wheelchair V and also doubles as a hockey

bag then if you didn't know they could really great. In there, you can roll them right in

so so anyway, we went to hockey practice and then after a quick wardrobe change, you'll see us getting into Busch Stadium and Busch Stadium is really accessible

in this particular video. We're going to go to a

an accessible Suite in the stadium, but there's a lot of Cheaper seats that are super easy to get to if you've ever been to Busch Stadium, you know, there's a ramp that runs the entire length of

the stadium you can get to every level there. Is elevators everywhere? It's super fun to go all of the seat. There's not a bad seat Busch Stadium. If you enjoy that and in general

all of the larger sports venues & st. Louis are accessible. So we just went to the city park. It was beautiful. We've been to the Jones Dome Enterprise Center. All those places are really built for

their really built to make it an enjoyable experience. And then also, you know a lot of the other venues & st. Louis are built for I always say if they built it for strollers. Wheelchair

can make it happen. Right like the st. Louis Zoo Grant's Farm you can get in and out of the Fox Theater st. Louis Symphony

they're pretty much built for accessibility. And and if you make a phone call, I had a Time anyone's going to help you out and make it happen.

So I think I think that's about the end of this one. But but in general local destinations, there's there's just a ton of them and with little creativity you can make it happen.

Thank you Scott. You have anything to add?

One thing that I always do track when I was if you see when those pictures Tammy weighed about 100 pounds soaking wet and I was a young strapping lad. So a lot of times

if there were an issue Brute Force worked in our favor and like I said, when we went to Venice we figured there were going to be some challenges

worked out a system where that little Walker in the picture Tammy would use that to kind of get around. I would pick her up

like over the bridge put her down my friend would grab the Walker and he take over the bridge but that down and we'd go 10 feet to the next bridge over a now, but we did have a

system and that's how we got around and like I said Tammy no fear great sense of humor and we

had a beautiful time. There's another picture I think. Somewhere were in a wine vault which is also a favorite hobby of ours. So it's a good time. It's great trip. Okay,

I think to when you think about wheelchair friendly destination just I think many of us are from at least the Midwest we've even traveled to like Kansas

City and there's lots of wheelchair accessible sites the World War One Museum the Federal Reserve The Truman Museum lots to see their course Chicago the Navy

Pier. Your Wrigley Field The Field Museum shed like Museum of Science and Industry parking can be tricky sometimes at some of those locations for sure. I

think that's why you hear maybe like I we tended to take the train a little bit more up there. But many of the big things you would go to see you can get into those

Louisville the Louisville Slugger Museum the Kentucky Derby Museum.

Those are all accessible, Oklahoma City. See the national cowboy museum Hall of Fame the first Americans Museum Nashville Country Music Hall of Fame the

state museums Grand Ole Opry that's all accessible Springfield. The Presidential Museum Lincoln's Museum State Museum, like

there's so much that's within our our proximity here. And in the

the Midwest to see it's pretty incredible if you want to travel like to travel it's Only doable it's extensible. We went to the was

cheers was in Boston and they've got a elevator kind of off to the side that we were able to get into that place. No problem concerts. Got

to see REM in the front. That was kind of cool.

don't don't let things stop you. Yeah, we went to

the December before Kathy died. We went to see James Taylor down at Enterprise Center and they were.

terrific they had they had people at the gates looking

for people who needed help with accessibility and they approached us and said where are you sitting and we were sitting down on the floor and so

took us, physically took us, around to where we need to get because there were some some places that were off-limits because the crew

You know blue season ticket holders, usually eat

And so that would have been the direct route. So we had to go around . They then said,

I am going to find you after the concert and come and help you get out. So,

they want you to come. And they're extremely accommodating. So don't don't let those things scare you off.

I think to hear a lot about Beach vacations at least in the midwest. Like Gulf Shores is a popular Myrtle Beach South Carolina,

Somebody mentioned Air bnb. I tended to rent beach houses with elevators. I had some problems with elevator size when we moved

from a regular wheelchair To a permobil which is bigger. I found that not all elevators are created equal and some of those that are in beach houses