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Traveling with ALS (and other disabilities)


*Specific products or services are strictly for reference purposes and do not constitute an endorsement


🏢🚗🚕🚙🚌🚢✈️🛫💺🦽🦼🚍🛣


Although not possible for everyone, Meg and I have learned a few lessons from traveling with my ALS. I am writing this to share with you these lessons.


First of all, traveling has different meanings for each of us. With ALS, a simple trip to the doctor, grocery store, or to a local hangout is enough of an adventure. And that’s ok. Travel, in whatever shape or from is what makes you happy, what brings you joy.


In preparation for this piece I invited others to share their travel experiences and tips. I ’m very thankful for their help, (ALS’ers/ Caregivers/Friends) contributing through an informal questionnaire.


For those of us with the wear with all and means to venture beyond the confines of our immediate community, I hope this helps and inspires you to catch the “juandering” bug!


Let’s start with the planning. A plan requires consideration of every person traveling, not just the ALS’er. To include all equipment needed, notifying the businesses being engaged of any and all accessibility considerations.


Hotel/Resorts:


1. Accessible has different meanings to different people, this includes hotel staff and reservation call centers.


a. Roll in shower v Tub with grab bars.

b. Hearing/Vision impaired v not.

c. Space to maneuver wheelchair/scooter

*There is an effort to make Hoyer lifts available to guests in the future.

2. When reserving accommodations request photos of accessible rooms, if available. When you arrive inspect the room prior to accepting, if possible. If the accommodations are not adequate, request the hotel staff to locate alternative accommodayours on your behalf. Many are affiliated with multiple locations in most communities.


Airlines:


1. Call the day before traveling to ensure your reservation is flagged for wheelchair assistance.


2. At check in be sure to have the following information.

a. Powerchair: Model, Weight, Battery Type (most are sealed lithium – no need to do anything) *If you have an older chair they may require removal or disconnecting the batteries.


3. Inform the staff if any checked baggage contains medical equipment/devices, there should be no charge for these.*check individual airline policies

a. (Recommendation: any vital equipment [must have] pack in carry on.) *For international travel make sure your electrical equipment is dual voltage and bring the appropriate outlet adapters for the country or region.


4. At the gate, remind staff of required assistance, isle wheelchair, transfer assistance if needed. (Recommendation: Use your Hoyer sling or gate belt to assist in the transfer.) There are airline transfer slings that can be purchased, but pricy.


5. Powerchair prep at the aircraft entrance:


a. After the transfer of course, lol. Disengage the breaks, this allows the chair to be easily moved. *Reminder – chair will not turn on while breaks are disengaged, so don’t freak out at your destination.


b. Remove any parts that can fall off while being loaded; joystick, cup/phone holder, headrest.


c. Finally recline the backrest, this allows the chair to fit into the cargo hold door.


d. Final tip – be patient and take the time to educate the ground crew on handling the powerchair, given the time constraints and stress associated with this experience. The staff may not be experienced with powerchair's.


6. Remember to consider neck fatigue and bring a neck brace. If immobile please consider a diaper or catheter. Don’t forget straws to enjoy your favorite in flight beverage.



Cruise Ship:


1. 1-3 above may apply, depending on the cruise line.


a. When reserving the cabin, ensure you look for accessible cabins. These will have slightly larger entries, no threshold, and a bit more space in general.


b. Powerchairs and scooters are easily used on ships, give yourself extra time to get around, crowds can get bad, especially in the dining areas. If you are experiencing mobility difficulties but don’t have a scooter or powerchair yet, you can rent one and have it delivered to the ship/cabin.


c. Excursions: Many of the agencies will try to work with you’re accessibility limitations, however, be aware and realistic about your limitations, stamina, and recovery from exertion.


d. Once again, be patient and work with the staff to have the best experience.



Hitting the Road: RVing


1. Meg and I have an accessible RV that allows me to get in with a lift and we can anchor the chair with tie downs. An after market option is having a quick lock installed.


a. Manufacturers of accessible RV's


b. Depending on your physical limitations there are a few after market options for lifts, not to mention having a full size Braun lift installed.


2. Applications and Services that can assist in traveling in any recreational vehicle

a. https://harvesthosts.com , subscription membership allowing overnight stays (dry-docking) at a variety of businesses.

b. Campendium app

c. RoadTrippers app

d. National Parks Service app

f.



Well folks, I hope this helps with aleying some of your fears about traveling. It’s not easy living with ALS and even harder to travel with it. But I do wish you safe and enjoyable adventures. This is by no means an exhaustive resource. There are several out there that can fill in any additional information and resources you may need.






Attachments:

1. Permobil Travel Checklist

2. Powerchair Tag


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Khách
24 thg 10, 2023

Thank you for posting this great information! "Where there's a will there's a way"--now I just have to find me some "will".

Thích

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