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    • #11316
      Dagmar Munn
      Keymaster

      I recently attended an ALS educational event for patients and caregivers and one popular topic focused on traveling. Some folks had bad experiences with so-called “handicap accessible hotel rooms” that weren’t accommodating. Other attendees shared tips how they avoid problems.

      Here are is a helpful article on “hotel room hacks for limited mobility.” 

      What experiences have you had while traveling with ALS? Do you have any tips to share with us?

    • #11320
      Dagmar Munn
      Keymaster

      If you are not sure if there are hotels/motels available in the city you are visiting with handicap accessible rooms – – contact the ALS Association for that state and ask them to recommend a hotel/motel. They should be able to recommend one; especially knowing what ALS patients need.

      Find Local Services

    • #12354
      Diana Belland
      Participant

      My husband and I returned yesterday from a cruise trip to Alaska.  The cruise itself was wonderful, from Vancouver to Whittier through the inside passage.  The views from the ship (Golden Princess, Princess Cruises) were astounding.   The stateroom was comfortable with a balcony for the times when I just wanted rest and privacy.  The bathroom had a step up but plenty of grab bars.  They provided a shower chair and a flexible spray head, and  the toilet was higher than mine at home!   I brought a rollator and rented a wheelchair.  I tried to use the rollator every day to keep up my exercise but sometimes the wheelchair was more convenient, especially for off shore excursions.   I did find that I couldn’t tolerate too many hours in the wheelchair so sometimes, I simply walked, pushing it in front of me like a rollator.   It felt so good to be out of the chair!   I saw people with different kinds of scooters and self powered wheel chairs getting around quite well, mostly off the ship.

      After the cruise ended, June 8, we took a seven hour train ride to Denali National Park.  We sat on the upper, bubble topped, level which was great for viewing.  The car was equipped with an elevator for disabled passengers so I was able to get to the restroom on the lower level easily.   The car also had a wheelchair lift which I used to board the train.

      In Denali we took a five hour sight seeing bus tour.   The bus did NOT have a lift so I had to walk up the steps with the excellent assistance of my daughter, a doctor, who knew how to support my body properly—she was a huge help to me in getting on and off several buses which did not have lifts.   We were able to sit in the first row of seats and allowed to get on and off first.

      The most challenging part of the trip were the four flights we had to take, two to get to Vancouver and two to return to our city.   I have found that even if you are extremely careful to make wheelchair arrangements far in advance, there is no guarantee that wheelchairs and attendants will be available for boarding and de-boarding.  We flew Delta both ways.   When we arrived in Vancouver, there was no wheelchair waiting for me so I had to wait in a seat in the plane.   The crew was ready to leave, but the pilot stayed with me and we had a lovely chat about Alaska and the Yukon.   Finally, my husband was able to get my rollator and he brought it into the cabin.   I was fine until I got to the small gap between the plane opening and the passenger boarding tunnel.   Getting into a plane and getting out are real challenges  because there are no grab bars and surfaces are uneven.   Flight attendants seem unsure what to do.  However, the captain did offer me his arm—-he was so nice!

      Aisle chairs are also available and I did use one on the way to our destination, but, even though I requested one for the return trip, it did not appear until very later, causing me to hold up other passengers behind me.   The attendant had no experience with the chair and kept ramming it into seats.   Finally, I said I just wanted to get up and walk, so I did, holding onto seat backs for support.   I told the flight attendant I had  ALS and that I could walk but needed supports to hang on to.   After that, they were very concerned about my needs and very apologetic.

      What did I learn from this?   A travel scooter might be a better option than a wheelchair.   Communicate immediately that I have ALS and balance issues.  Check, check and double check on getting an aisle chair for boarding and de-boarding.   Write to the airlines and let them know what they must do to improve their services to the disabled.

    • #12355
      Diana Belland
      Participant

      Hello,

      I am adding a second response with regard to the Alaskan cruise trip my husband and I took May 31-June 12.   It’s actually a question regarding how to conserve energy and how to recover upon returning home from trips which involve sight seeing, excursions, different modes of transportation and long plane flights.   I’ve always wanted to visit Alaska and I am so grateful that my current condition allowed me to make the trip.   However, I did have thoughts from time to time concerning whether or not the challenges of travel and the high activity level might actually have the effect of hastening the progression of my ALS.

      I tried to schedule regular rest periods on the bed in our stateroom but I also wanted to observe everything I could from the decks of the ship and not miss anything!   I didn’t walk as much as I ordinarily do at home (20 minutes a day on the treadmill) and I felt that might have contributed to a greater sense of leg weakness that I sometimes felt.   It took us 24 hours to get home (two four hour flights and a three hour layover), and I did not drink water on the flights because I didn’t want to deal with the hassle of using the restroom.   So, yesterday, I noticed that I had the beginnings of a sore throat and my voice seemed weaker.   I thought perhaps this might be a symptom of ALS, but I’ve been resting for nearly two days since our return and drinking plenty of fluids.  My throat feels much better and my voice seems to be returning to normal.   I’m giving myself two days of bed and couch rest even though I don’t actually feel any weaker.   It seems prudent to take things slowly after a demanding trip.   I’m going to do my rolling/stretching exercises on the bed and then Dagmar’s chair exercise video which always makes me feel better!

      I’m interested to know if anyone who still travels has any tips to share about how to conserve energy while traveling and how to recover upon returning home.   We are tentatively planning a trip to Portugal in the fall and I am wondering if this is a realistic goal for me.    My husband says we can always cancel if I don’t feel up to it.

      Thank you so much!

    • #12356
      Dagmar Munn
      Keymaster

      Welcome back Diana! Sounds like your trip was a success and you were able 😉 to see, do and experience just about everything!

      So good of you to share “lessons learned.” Yes, it seems all comments from special needs travellers include: plan, prepare and double-triple check ahead.

      I am amazed and proud of your resilience and energy during the trip! You rationed out energy very well. Don’t worry about feeling wiped-out once getting home. For me, ALS amplifies everything, and the now-I’m-home let down is included. A day-long car trip can do me in: I feel like a frozen-in-time paper clip and have to undo hours of sitting. Give yourself the couple days of taking it easy (your ALS won’t progress) and ease back into your pre-trip self.

      I also empathize with your restroom rationing! Too bad we have to risk dehydration to avoid restrooms that are less than “accessible.” 🙂 Again, welcome back!

       

    • #12358
      Diana Belland
      Participant

      Thank you so much, Dagmar, for your wonderful “welcome back”  and for your encouraging words!  I appreciate your support so much.  We rarely had internet access on the cruise, and I had left my laptop at home anyway, so I missed my daily visits to this Forum.    You’re so right—sitting for a long time, whether it be in a car, train, plane or wheelchair, can certainly make me feel like a “frozen-in-time paper clip.”

      I’ve taken it very easy the last two days, just doing my rolling and stretching exercises on my bed and your chair exercise video (which always perks up my spirits).   Today, I did get back to my treadmill walking, just five minutes at a time, with five minute breaks, for a total of twenty minutes.    It went well but I am going to listen to my body and not overdo it.

      Again, thanks for all the support and inspiration you give us!

    • #12454
      Dagmar Munn
      Keymaster

      Diana – – How is the “recovery” going? Are you feeling better and back to pre-cruise energy? Hope so! 🙂

    • #12455
      Diana Belland
      Participant

      Dagmar—thank you so much for thinking of me!

      I’m finding it hard to tell how my recovery is going.  I am getting about nine hours of sleep a night but staying up very late and then sleeping late.  I do about 30 minutes of Original Strength exercises along with stretches on my bed and I walk on the treadmill a few hours later.  On Tuesday of this week, I had my first aquatic therapy session which I enjoyed very much, and, the next day, I had my third Pilates session which went very well.  I was thrilled that I could still do strong bridges as I had been doing before our trip.  Treadmill walking feels good and my legs don’t get tired.   Today was a beautiful, sunny day so I spent some time outside walking with my all terrain rollator, doing it in 4 minute segments with 4 minute rests in between.

      But I’ve had some days of very low strength/energy which have made me wonder if my ALS progression has begun to pick up.  I’m still trying to find a good balance between exercising, sleep and sitting/resting activities.   I thought I’d be perhaps more “rested” ten days after returning from the trip, but I think part of what I am feeling is post-trip let-down.  I hope that’s what it is!   We are planning a week long trip to North Carolina in a few weeks which gives me a good incentive to keep up my strength and flexibility work and my rollator/treadmill walking.

       

    • #14513
      natasha
      Participant

      thanks

       

    • #14529
      Nancy L Worden
      Participant

       

      What exactly does accessible mean?

      Those of us who have some physical limitations are often looking for an accessible hotel room or restaurant. What I have learned over the years is there is no standard for this term and no policing of its use. The ADA has been federal law for almost 30 years and many public facilities are not in compliance. The best way for me to describe what noncompliant means is to tell you a few stories from my personal experience.

      I have been participating in a drug trial in San Diego for going on 4 years now. When I first started I was one of the first patients and so they gave me a list of hotels in the area of the clinic. One by one I tried all of them. I found that the rooms at a very fancy Hilton Hotel had a disability height toilet but the handles for the sink were so stiff I couldn’t move them to turn on the water. The door to the room was very heavy and had one of those springs that makes it very difficult to open. When I complained to the management, they told me that I seem to be managing just fine. They would not remove the spring and the maintenance engineer would not address the handles to the faucet. This same hotel, the Hilton at Torrey Pines, once put me in a regular room and brought in shower stool thinking that would suffice in making it accessible. There was nothing to hang onto in the shower. When I complained they gave me a coupon for a free breakfast. I don’t stay with them anymore.

      The hotel where I stay now is an Embassy Suites Hilton, La Jolla and the staff is very accommodating. There is no spring on the door. There is only one chair in the suite that’s high enough for me to get in and out of but at least there is one. When I check-in someone always helps me drag my bag up to my room and make sure that the shower is pointed in the right direction. The microwave is too high for me to reach but if I call the engineer they will move it for me.

      A couple times I slipped out of bed and called down to the front desk and they sent somebody up to pull me up. I feel safe in this hotel and they listen. Unfortunately they only have two accessible rooms with two beds. One of the rooms has a bathtub with some bars and they call that accessible. I cannot get in and out of the bathtub.  The other room has a roll in shower but it’s always reserved because there’s only one. That means when someone comes with me they either have to sleep on the couch or in a child size rollaway bed or with me and some people are not comfortable sharing a bed. It is one reason that I traveled by myself to San Diego for so many years.

      Another example of a supposedly accessible place is IslandWood where my daughter’s wedding was last summer. She intentionally chose a venue with accessible accommodations. Knowing the variations of the term accessible, my husband and I went there to check it out several months before the wedding. What we found was a toilet in our accessible room that was too low, beds that were too high, many gravel paths, some of them steep, and door openers only at the welcoming center. They had also recommended that I use their golf carts. I tried to get into one of their golf carts and it was impossible as there was nothing to hold on to.  I walked all over the paths, many of them hilly, with my rollator to make sure that I could walk it. My rollator was also absolutely necessary where the ceremony was performed in the grass.. We decided we would bring my toilet riser but when we got there I was too tired to walk all the way back to the welcome center to find someone to take off the toilet seat so we could use the riser and my husband was not inclined to do so. So, every time that I used the toilet that weekend, any of their toilets, I had to have someone go with me to help pull me off. I couldn’t get into bed by myself and the floor was so slippery in our room that I slipped and fell on concrete. I made a special trip out there and was very clear about the things that would be difficult for me and the only change they made was to prop the door to our lodge open so I could get in and out. However there was a ramp to the lower level of the dining room, one good thing.

      The typical disability bathroom in a public facility is a wall mount toilet mounted very low to the floor where they have added bars on either side or on the side and in the back. This is normal even though many people cannot push themselves up from 10 inches off the floor. My favorite example of accessible gone wrong is the accessible toilet on the D concourse near gate D3 at SeaTac international Airport. Some brilliant designer decided to mount a diaper changing table right over the accessible toilet with very little room for fingers between the table and the bar at the back of the toilet. When I got stuck in that one I had to call for someone to come and get me out. Afterwards I was so angry I asked a ticketing agent who to complain to and I was told to complain to the Seattle Port Authority. I sent them an email and I had a couple of responses and nothing’s happened.

      My favorite experience at SeaTac was with Horizon Airlines. As usual when I booked my flight I asked for help from the gate to the plane. When I got there on a cold February morning, the first red flag was that the wheelchair operators were all young people and they were looking at their phones. I made a point of connecting with the ticketing agent to make sure he knew what I needed. When they called my flight, a young woman came to get me and she took me outside to an elevator and then out on the tarmac in 38° weather and rain. She pushed me to the base of a long ramp with switchbacks and told me okay get out and walk up. I said no, I can’t walk up there and so she hailed a baggage handler and he was kind enough to take me up this complicated and very steep ramp. When we got to the plane there was an even steeper short ramp into the plane. At this point he grabbed me under my armpits and dragged me backwards into the plane.

      After I composed myself, and had something to eat, I went to find the restroom. The seat look pretty low but I really needed to use it. Then I tried to get off of it and there was no way. The only thing I could do was kick the door and yell help and fortunately the flight attendant came and pulled me off the seat. By this time I was in tears and very grateful to the guy sitting next to me who leaned over and said enthusiastically, “You made it!:” I survived the flight and when we got to San Diego, the flight attendant told me to wait to get off last even though I had a first-class bulkhead ticket. So I waited for everyone to get off and when all the weight was off of the plane there was a substantial distance between the plane and the gate so once again they wrestled me off the plane into the wheelchair.

      I was so angry after that trip that I called Alaska Airlines and complained to customer service. I talked to a very nice guy who listened but couldn’t do anything else except give me some bonus miles. The moral to the story is even if they say it’s an accessible flight that doesn’t mean that it is. Avoid anything smaller than a 737 and drain your bladder before you get to the airport.

       

       

       

    • #14530
      Dagmar Munn
      Keymaster

      Bravo to you Nancy! For surviving all that “accessibility” 😉

      Your stories were exhausting just to read them 🙂

      I’ve come to the conclusion that most hotel/motel rooms are handicapped accessible only if your handicap happens to be a bruised thumb! (haha).

      Before a room is advertised as handicapped accessible, the manager should be required to spend the night in it – – wearing 5lb. weights on his ankles, thick work gloves on his hands and pushing a rollator!

      I recently encountered a horizontal grab bar behind the toilet in the women’s restroom – – Sheesh! How does that work?!

      Maybe the 2020 initiative for ALS the community should be addressing non-compliance of handicap accessible facilities.

       

    • #14534
      Cate
      Participant

      All the comments here are very helpful! I’m traveling to Flagstaff, AZ, next week and in May we’re going to Greece.

      A couple of questions for others who have traveled: 1. Altitude. Any suggestions for dealing with it (especially with ALS)? I’ve been told to drink lots of water and build in rests, but I’m still worried (I live near sea level). 2. I have a cane I use outside the home. I also have a rollator that I don’t use much yet, but think would be good to use on my trips (and by May I may need it!). Have any of you flown with rollators? Can you carry them on and/or gate check them? Any tips for doing this? We have arranged for a wheelchair to get me through the airports, but I think the rollator would be helpful for sight-seeing. Thanks!

    • #14552
      Nancy L Worden
      Participant

      Hi Cate; I travel with my rollator a lot and I have learned that it is best to check it at the gate not with your baggage. This means that when you get to the gate you need to tell the ticketing agent to put a  claim tag on the rollator. They will give you a claim check and the important part is to remember to pick up the rollator near the door of the plane as you’re getting off. I usually ask the wheelchair pusher to take me into the airport and then  send them back for the rollator. Hopefully your rollator has big wheels so you can use it on uneven terrain. I use the Volaris rollator because the brakes are easy to engage and disengage. Most PALS do not have strong fingers and so the kind of hand brakes that are common on the Drive rollators don’t work for me.  Also  the Volaris is made out of plastic and aluminum and will double as a shower chair.

    • #14553
      Diana Belland
      Participant

      Hi, Cate,

      I agree with the points Nancy has made.   We have flown several times with rollators, using a Volaris and a Hugo Navigator for different trips, and have always checked them at the gate.   They’ve never been damaged.

      I love the Volaris for the same reasons Nancy mentions.  It’s also extremely easy to maneuver on almost any kind of terrain.   Unfortunately, I didn’t realize that they had sent me a size too short for me until it was too late to exchange it.   I still use my Volaris in the house but I take the Hugo, which converts to transfer chair mode, when I travel.   The convertible rollator is nice to have when you’re sight seeing and might need a short break from walking.

    • #14564
      Cate
      Participant

      Thanks Nancy and Diana–very helpful! I will look into both the Volaris and the Hugo.

    • #14565
      Patricia
      Participant

      All information and useful tips are great, but we all need to remember what is the stage of the desease. Accessibility takes a different meaning also depending on the desease a person has. Keep in mind that ALS is a rare disease and our needs are extreme compared to people that are wheel chair bound but keep a good strength on the rest of the body.

      I am not defending what some places do, like add a holding bar in the bathroom and a hand held shower, thinking the are compliant. Just keep your expectations low or base your plans on advice from other pALS or someone aware or your needs.

      I read somewhere about a petition to allow people in wheelchairs to be able to board the  plane using their own chairs. That would be very helpful!…to every one.

    • #14576
      Nancy L Worden
      Participant

      Hi Dagmar; In response your suggestion  of contacting ALSA about accessible hotels, that might be a good start but they will only have a list of hotels with accessible rooms. What they won’t have is a customer review of those rooms. I think what we need is a yelp- type app where we encourage PALS to review the places where they stay so that other disabled people can read the review. It is possible something like this already exists, does anyone know of one?

    • #14597
      Amanda
      Keymaster

      @Nancy,

      What a great post. Although I am terrible saddened by your experiences and the inconsistencies in using the term “Accessible.”  The information you have shared is priceless and will help many of our members when they plan their next outing.

      @Dagmar, I love your suggestions!!

    • #14648
      John Russell
      Participant

      We are planning our 6th end of winter trip to FL. We includes my wife who has struggled with Parkinson’s for 17 yrs.,my sister (cancer survivor) and our tireless friend, Carol without whom none of this would be possible. We have rented the same home each of the first 5 yrs. and paid to install grab bars & bought bed rails. This yr we could not get the same house but are moving to one in Vero Beach which friends have been in for January & February so we know it will work. We’re booked through 8 April.

      What I want t o share is wheelchair use for the flights. Though my wife & I have some mobility we really need chairs. I have my own, a nice light KI folder which I got while recovering from a broken ankle 3 yrs ago. I get in my comfy chair at arrival and don’t have to leave it till I board. At no cost it goes with the luggage. On arrival it is brought to the door (pretty much after the plane empties but that’s OK) I sit & stay till Carol shows up with the van we rent. Definitely beats hoping the airline shows up with something.

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