Travel with ALS

[Marce1810]

Hi! I am a 47 mother of 2 girls (6 and 9) diagnosed with ALS in April 2021. So far only my legs are affected - I am using a walker to get around.
I’m looking for travel/vacation ideas for this summer (with my girls and without). I would prefer to stay in Canada. I anticipate being in a wheelchair by this summer. Does anyone know of accessible vacations spots?
Thank you,
AnneMarie

 

[jonico]

Hi AnneMarie,

Interestingly, early on in my wife's ALS journey (early part of being wheelchair bound) we spent a weekend up in Ottawa and found it to be wonderfully accessible and ideal for exploring. We loved the National Gallery, 'walked' for miles, and found several accessible restaurants. Since Ottawa is home, I imagine you are looking to travel further afield in Canada. Since I don't know specifically about accessibility in other parts of the country, I recommend doing what we always did and google search "wheelchair accessible" followed by either Canada, or whichever province might appeal to you. I love the Maritimes! You'll get a lot of great ideas. Even though you aren't in a wheelchair at this time, if an activity/venue/location is good for a wheelchair, it should be great for you as well.

In any case, I think it's wonderful that your planning this with your family. Have a blast! Jon

 

[swalker]

I have done quite a bit of travel.

The easiest way for me to travel is by wheelchair van. We have taken many trips this way and it has worked out pretty well.

I have also flown on 4 separate airplane flights for two of my trips. That was quite a bit more challenging, but we managed to overcome the obstacles.

For any trip, figuring out what you need for a hotel (or wherever you will be staying) is critical. We have stayed in a variety of hotels and have made them work, but some were more challenging. If you need to use a hoyer or need a roll in shower, then you will be needing a hotel that is more accommodating than most of the accessible hotel rooms I have experienced in the US. Things may be different in Canada.

When we travel, we need to take a lot of equipment with me. When travelling by van, I like to take 2 power wheelchairs and at least 2 chargers (I once had my only charger fail on a trip, and that caused quite a bit of disruption). Fortunately, at least in the US, airlines are required to transport necessary medical equipment at no extra fee.

We have a full size van, so we can fit all my equipment in it, but there is not a lot of room left over!

We also make sure that my critical equipment can work off or battery or 12 volt power in case there are power issues where we stay. For example, on one trip, the power went out for most of a day while we were staying in Yellowstone National Park. Roads out of the park were closed due to weather and we were on the 3rd floor. I was not getting down the stairs in my wheelchair! After the power came back on, hotel management insisted that we move to a room on the first floor. That was our 4th room of that trip, each change caused by some inadequacy in the previous room.

We have found 2 major difficulties when flying. First, we need to arrange for transportation of me and my wheelchair at our destination. If you are going someplace with great public transportation that can accommodate your wheelchair and serves the airport as well as where you will be staying, then things will be relatively easy.

If, as happened to us, public transportation is not adequate, then you must arrange for a wheelchair van. We found that renting a wheelchair van was expensive, the rental companies where not near the airport, and they only operated during normal business hours.

Each time we flew, we could only arrive after the wheelchair van rental places closed. We had to find a hotel near the airport. Our hotel had a wheelchair van, but when we arrived we found out it was out of commission. We could not find any taxi or uber that could accommodate my wheelchair. Fortunately, there was a long series of sidewalks that could get me to the hotel. The next day, my wife took an Uber about 30 miles to where she could pick up our rental wheelchair van and returned to the hotel to pick me up. Once we had the wheelchair van, the trip became much easier.

Returning to the airport was similar. My wife dropped me off at the airport about 5 hours before our flight. She then returned the wheelchair van (an hour away) and took an uber back to the airport. Once all that was done, she arrived at the airport about 2 hours before our flight departed. The airline had insisted we be there 3 hours early. By their schedule we were running an hour late.

We made the flight just fine, but it was a very long day.

My wheelchair was seriously damaged on 3 of the 4 flights I have taken. It took about 9 months to get the wheelchair fully repaired. Based on these experiences, I would fly again, but I would do the following.

1. I would arrange to arrive at my destination fairly early in the day. I would want to arrive no later than noon.
2. If my wheelchair was damaged, I would not leave the airline's damaged goods office until after they had provided me with a suitable loaner wheelchair (which they are required to do in the US). The airlines seem to be incentivised to have you leave with your damaged wheelchair. Once you do that, the airline has no sense of urgency to get your wheelchair repaired.
3. I would take my Roho seat cushion in the airline cabin with me. Mine was punctured while in the airplane's baggage compartment, making the wheelchair dangerous for me to use. Fortunately, I travel with a Roho pump and we were able to repeatedly pump it up so that I did not bottom out (much). I now travel with a patch kit as well!
4. I would only travel in a backup wheelchair. If I fly, I just assume my wheelchair will be damaged. This is yet another reason to have a backup wheelchair. I learned early on that if you need a wheelchair, you really need two!

Travel has given me great joy. I am so glad we have been able to travel. I have been able to visit magnificent museums, wonderful national parks, and dear family members. So, if you have the inclination to travel, I encourage you to do it. Try starting with small, simple trips and grow from there.

Steve

 

[lgelb]

It is hard to say what will be happening in the summer, but it sounds like it's possible that you will be using a manual rather than power wheelchair since you are using a walker now. So I would try to think about the scenario where you can still transfer to a passenger seat and how things work if you cannot.

I believe Ottawa is connected to the Canadian long-distance train service. Covid permitting, that can be a nice, relaxing, scenic way to travel with your girls or on your own (the latter if you can still do your own transfers). Regional buses are another option.

Cities with a good transit system are generally accommodating for wheelchairs of either type, and a light rail system is ideal as you can just wheel on level with the platform and then turn off your chair or apply your brakes if you're in a manual chair. Streetcars are generally the same. Buses usually have ramps, though getting on and finding space can be more of a hassle. To avoid restroom logistics when you can, it may be easiest to schedule "legs" of your trip, if you use transit, so none is too long.

Wishing you safe and happy travels!

--Laurie

 

[swalker]

Laurie (lgelb) offers some good advice.

I have found using public transportation options can be quite helpful, but there are limitations.

In my small community of about 5,000 folks, the public transportation system is outstanding. There is a bus stop near our house and the bus stops there every 15 to 30 minutes. All my wheelchairs will fit on the buses our town uses, though my largest wheelchair just barely fits.

I can also call ahead and have the local transit folks send a wheelchair van to pick me up and deliver me wherever I need to go in our town. I have used that option often and they are always very prompt, typically arriving about 5 minutes before the scheduled time.

I have also had great luck with the public transportation options at the Grand Canyon National Park.

When I have tried to use public transportation in large cities, though, I have not had much luck. Denver, which is about 100 miles from me, has a nice light rail system. Unfortunately, many of the stations require stairs or an elevator to access the platform. I have read that the elevators are often broken, which make the system unusable for me. The one time I tried to use the Denver light rail system, I could not because the elevator I needed was out of order. We had to load me back into our wheelchair van and do something else.

I have investigated using the public transportation system in San Antonio, Texas (a very large city) and again found it not to be workable. There are no bus stops near where I need to go, meaning I would need to ride my wheelchair a long way to the bus stop. Also, the particular bus stop I would most often need to use does not have sidewalks leading to it, meaning I would need to ride my wheelchair in a very busy street for over a mile to access the bus stop. San Antonio also has a service where they will send a wheelchair van to pick up a disabled wheelchair user. I have spoken to people who use this service and found that the van has never been on time, often being late by 4 hours or more. Thus, when visiting San Antonio, I use a wheelchair van.

I have investigated public transportation in many large cities I would like to fly to and have found similar limitations in all of them. My conclusion is that unless I am visiting a resort destination (which tends to have better public transportation options), I would always plan on using a wheelchair van (my own or one that we rent).

Steve