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    • #14395
      Dagmar Munn
      Keymaster

      Whether you’re planning a day-trip, or will be gone for a week or two, traveling with ALS can doesn’t always have to be a challenge. Especially if you use all the tips and suggestions shared by our forum members!

      Let’s join in and post your tips; including equipment, devices, resources and planning considerations. Share your experiences and how you handled mid-trip issues. Have a question? Ask it here. We’ll cover everything from flying, cruises, bus tours and more.

    • #14465
      Susana Rave
      Participant

      My family and I are planning a cruise to Alaska in June.  Any travel tips would be greatly appreciated.

      Thank you.

    • #14469
      Joe Heueisen
      Participant

      I live in Juneau which is probably on the list of ports for your cruise.

      How ambulatory are you! what are your transportation requirements. Are you afraid of bears or flying?

      Joe

    • #14471
      Diana Belland
      Participant

      Part I:

      Susana, my family and I took a cruise to Alaska in June, 2019.  You will have a wonderful experience! I found that all of the ports on the cruise could be enjoyed via standard wheelchair.  I saw many people using scooters and small electric wheelchairs as well.  The train to Denali National Park has a wheelchair lift and the double decker bubble topped cars have elevators to take you to the ADA restrooms below.   Some of the tour buses are not equipped with chair lifts so if you have difficulty with stairs, you’ll need assistance getting on from others or you can choose not to do that excursion.

      Since my diagnosis of limb onset ALS nearly a year ago (March 4, 2019), my husband and I have made several trips involving plane travel, train travel, cruise ship travel and car travel.  We’ve dealt with a range of services and accommodations, and we’ve learned that ADA accessible doesn’t always mean an ideal set up for someone using a rollator or wheelchair.   Make sure to phone the cruise lines well ahead of time and ask for an exact description of the bathroom set up.  Ask for a roll in shower and ask where the grab bars are placed around the toilet.   The cruise line will send you a form to be submitted about 60 days ahead of the sail date for you to use to indicate what kind of assistive equipment you’ll be bringing with you (rollator, wheelchair, scooter).

      Many travelers prefer to rent wheelchairs for travel rather than bring their own to avoid the risk of damage by the airlines.  In my second post, I’ll list the rental agencies we have used.  The rental agency will deliver your device directly to your stateroom.  Princess Cruises provided excellent service for embarking and debarking with wheelchairs at each port.

      For our first Princess cruise to Alaska last year, we brought a Volaris rollator (which I used on the ship) and rented a standard wheelchair for excursions.   We have a second cruise, also with Princess, planned for Feb. 25, 2020, to the Carribbean.  We will bring my Hugo Navigator rollator (which converts to transfer chair mode) for the ship.  We have rented an electric wheelchair, a Pride Jazzy 1450, to use for excursions.   I also plan to bring a portable toilet frame and a battery operated bidet.

      We have flown Delta several times over this past year and were very pleased with its wheelchair and aisle chair service.  We’ve learned to arrange well in advance for a wheelchair to take me to the gate and an aisle chair for the plane.   Delta has a special row of wider seats with extra leg room for disabled passengers.  The aisle chair attendants were very skilled in getting me to my seat and then gently easing me from aisle chair to seat.    The major problem with flying for pALS is the scarcity of ADA accessible restrooms.  I take the precaution of drinking little during flight and try not to book a flight longer than 3-4 hours.   We need to keep the pressure on airlines to add fully accessible restrooms.

      We spent nearly a week in New York City over the holidays and found that wheelchair accessible cabs, Ubers and Lifts are abundant.   Just know that you and your wheelchair or scooter will be strapped to the floor at the back of the cab and you’ll probably feel every bump and pothole in the road. I used my airplane neck pillow to cushion my lower back.

      We’ve made several long car trips this year and found that some, not all, rest stops have family rest rooms.  If you’re traveling with a companion, this is ideal.  But an accessible toilet stall with only one wall grab bar on one side can be a major challenge for me.  I’m looking forward to bringing my portable toilet frame (which folds and has its own carrying case) along for future long road trips.

      I’ll include links to helpful websites and products in Part II.

       

       

       

       

       

       

    • #14472
      Diana Belland
      Participant

      Part II:

      Websites my husband and I have used for renting mobility devices for cruises (they also rent medical equipment):

      https://scootaround.com/en

       

      https://www.specialneedsatsea.com/

      A useful website for wheelchair users who travel:

      https://wheelchairtravel.org/

      Portable folding toilet frame and carrying bag:

      https://www.1800wheelchair.com/product/fold-easy-toilet-safety-frame-travel-bag/

       

      https://www.1800wheelchair.com/product/fold-easy-portable-toilet-frame/

       

      https://wheelchairtravel.org/air-travel/wheelchair-accessible-lavatories/

      A wide range of portable, travel bidets can be found on Amazon.   Here are two:

      Toto Travel Handy Washlet

      Brondell Go Spa Travel  Bidet

       

       

       

    • #14477
      Elena Colon
      Participant

      It sounds like renting is a good option, but my husband has a power chair he controls with his knees. Looks like all the options to rent have joy sticks.  Can you bring your own power chair on a plane or cruise ship?

    • #14492
      SC
      Participant

      If you are traveling to a larger city and need equipment, you can contact the als assn in that area for free loaner use. They will have items delivered and picked up from your hotel no charge

    • #14493
      Tomoko Zemman
      Participant

      I have been traveling with my manual chair by air, train, ships and cars without too many problems.  I even traveled alone from Texas to Canada a day after I received my chair!
      I went to one of John Morris’ travel seminars at an abilities expo right before I got my chair.  He uses a very heavy electric chair and he travels all over the world by himself.  He has a helpful website.
      Your husband should be able to bring his own chair.  It probably is a good idea to contact the airlines just to ensure they have enough cargo space in the particular flights.  I always make sure that I have enough transit time as I am always the last one to deplane.

    • #14499
      Elena Colon
      Participant

      I checked out John Morris (wheelchairtravel.org).  Looks very helpful, also has a facebook page.  Thanks for the tip!  We did some travel with his manual chair, but now he has the power chair so will need a little bit more planning.

       

    • #14506
      Diana Belland
      Participant

      It’s so encouraging to hear from other pALS/caregivers who are still traveling with manual or power wheelchairs!

      My husband and I are set to take a cruise beginning February 25, and I find myself wondering some days if it’s a good idea even though we have made all the appropriate disability arrangements with the airlines and the cruise ship.   Our first cruise in June, 2019, (three months after diagnosis) went very well, but I’ve had some progression since then (limb weakness) and will need more assistance.

      Thanks Elena, SC, and Tomoko for your  helpful comments.   It’s good to be reminded that we pALS can still enjoy travel, with the right planning and use of resources, even as we find ourselves requiring more assistance.    I hope more members will share their travel tips and experiences.

       

       

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