-
Have you made plans for any vacations this summer? How is preparing for trips or vacations different from your pre-ALS days?
Have you made plans for any vacations this summer? How is preparing for trips or vacations different from your pre-ALS days?
-
26 Replies
-
We are going to Disney at the end of August. We are traveling as much as possible while I can still do it. The biggest differences for me are the kinds of vacations we’re planning now vs. where I would have gone before. I was an avid outdoorsy girl and typically chose vacations where I could hike in the mountains, or chill at the beach for a week. I also have to travel with at least one other person (I previously enjoyed solo travel), and with lots of medical equipment, so it is a challenge. That doesn’t stop me! Since my diagnosis at the end of 2022, I’ve been to: NYC, Hawaii, Seattle/Vancouver, San Fransisco, Yosemite, Muir Woods, Sequoia, Disney, Washington DC, and many trips between Kentucky and Texas. We have several trips planned the second half of the year 🙂
-
Traveling is harder with all the equipment that my husband needs to take and formula bc he can not swallow so all feeding is ivy bag. One major thing pay for wheelchair assistance. That was a lifesaver in the airport. Get a medical form to explain you have ALS and supplies that can not go under the plane. Helps to call customer service and explain all of equipment taking on board. no charge. Really helped making traveling easier. I learned from first trip and second trip was so much easier. Try for straight flights to help reserve their energy. Making sure they do not try to talk you into placing equipment, like ventilators under the plane. If they do say no, then use disabilities act then they stop…lol
-
Thanks for those helpful tips Lisatodd. 🙂
-
-
Bravo aimeesmith1970!
Keep on traveling, you’ve got this!
-
I love that you are traveling. I was diagnosed in February 2024. We have been on two trips and both were fairly easy. My husband and I met up with all of his siblings in St. George Utah. We didn’t do a lot. We mostly just visited with one another since it had been a while. October of this year we went to Idaho where we have a lot of family and the we had a big family reunion. It was pretty awesome! We rented an Airbnb that used to be a church and they turned it into this huge fun place that can sleep 70 people. It has pickle ball, volleyball, basketball, a zip line and a Rockwall. It has a room with video games, eating area was very large and able to accommodate our large group of 70. It was so much fun to be with my mom and siblings and all of their children and our children. It was an easy place to be able to visit and have a good time the most difficult part was the stairs. I mostly stayed in the main common area. I did have help to go up the stairs from family members just to check out the other areas. We flew there on both trips and I find flying to be fairly easy so far I was able to use the wheelchair and have early boarding access to get settled. We are going to Disneyland in California in February for my granddaughter’s birthday. I love Disneyland and wish I could ride on all the roller coasters. I will probably have to settle for some of the slower more relaxed rides. We will be there with all of our children so we will be fun no matter what we do.
-
-
Not really. Some short trips with my grand children. I really have no interest in traveling great distances to do sight seeing etc.. I would rather conserve my energy for making memories with my family and friends. I still work part time also. I am newly diagnosed and I am trying to keep to a routine. I’ve had so many doctor’s visits the last three months. I traveled to California in April for my daughters wedding and it tiring. I would rather spend my energy trying to beat this terrible disease ( I am a slow progressor but tire easily).
-
You are so right mtu1976, to take this first year to learn how to adjust to living with ALS. Once you feel comfortable in your new daily routines and energy levels, perhaps then you’ll feel more like venturing out. What has been your biggest challenge so far?
-
My biggest challenge has been finding things I can do . Also I have lots of pains and feelings and twitching that make me uncomfortable . I tire easily and things change everyday. Mentally I have ups and downs. I still can do most everyday things but they are getting more difficult every day. I recently physical therapy for an issue for my shoulder that seems to help. I recently went to the ALS clinic and was disappointed in the entire experience .,
-
-
-
I was diagnosed the end of June. In July I went to 3 out of state weddings for family members. This weekend we are going to see some friends who live in the mountains in ShowLow AZ. In October we are going to a family reunion in Idaho. Right now even though it’s exhausting I still enjoy traveling and spending time with family. All of my children live in Arizona except one…I am grateful to esee them frequently. I don’t have any idea what to expect in the future months. I have my first ALS Clinic appointment July 31st. I have already started on Baclofen and Rizuzole. After my first clinic appointment I will start on Radicava ORS. I really appreciate this group. I believe in positive thinking and I feel that from this group….so thank you.
-
Showlow sounds great this time of year in Arizona! Do you find the current heat of the “monsoons” to be difficult?
-
I find the heat more difficult than ever before because I am in a neck brace. It’s hot and sweaty and gives me a rash. A sweet friend of mine made a sleeve out of satin fabric to slide over the brace. It helps some not to have it rub my neck raw.
-
-
-
We are really wanting to go to a beach, my husband was diagnosed last August, he has bulbar onset. And now with FTD. Just not sure what he can even handle , gets tired fast , eating is a problem , close to needing a feed tube I think, totally nonverbal as well. Need ideas!
-
Anyone have ideas? Could you please say more about how traveling with a wheelchair or a walker is made possible by airports and airplanes?
-
I’m sure our members will offer their tips for traveling with a wheelchair. did you read some of the tips in the earlier comments?
-
I got my answer. Thank you for the hint.
-
-
I try to travel when my schedule permits. I’m lucky that I live in Florida and there are still a lot of places I want to experience that are drivable. I have traveled to New Orleans and a few other places since being diagnosed. All have been good experiences so far. ALS makes me tire easily but I’m still independent for the most part. ALS has affected my diaphragm and thus my breathing. Walking and talking simultaneously is a no no for me or I sound like I just ran a marathon. I don’t use a wheelchair to get around. I use a cane at times if I’m tired or wobbly. I usually travel alone to go and visit friends. So far this has been possible with some preplanning. When I travel I call the airline about 2 to 3 days a head of my flight and request a wheelchair. They arrange to have someone with a wheelchair and they are there as soon as I check in. I also let them know I have a ventilator which fits in a typical carry on size bag. I also keep my medications and a letter of diagnosis (which no one has ever asked to see.) They wheel me to security, we skip to the front of the line, and then they take me to my gate. If I need to stop at the restroom they are accommodating and always ask if I need help walking. I don’t get charged for the bag my ventilator is in either! I also get to board the plane first. Another passenger usually helps my put my bag in the storage bin. Unfortunately there is no getting off the plane first. That’s the hardest part for me. Just getting my bag down and trying to get off the plane. I feel like I am holding up the line, but that’s life with ALS. They also have a wheelchair waiting for me as soon as I get off the plane. Another wonderful accommodation is that one person can go with you through security and boarding. I hope this helps.
-
-
My family and I just returned from a one-week beach trip. Diagnosed in May 2023 (bulbar symptoms began a year prior), my current symptoms include speech impairment, general muscle weakness, leg cramps (mostly at night), tiredness and gait disturbance. My physical therapist recommended that I have a “buddy” with me when walking on the beach and especially when getting in the surf- excellent advice that I’m glad I followed. Found it difficult to keep my balance especially in the surf. Managed to lose my balance 3 times, but nothing serious. Took fewer and shorter walks. Made sure to eat softer and less spicy foods. All in all, these accommodations were manageable.
-
Just completed my first vacation trip with a powered wheelchair. A lot easier than i thought it would be, used a Pride Jazzy Carbon chair, supplied by Team Gleason. Easy to travel with as the controller and battery snap out quickly and folds down. Carry battery and controller on plane, and you’re set. Easy to get around since more than 10 steps for me is a challenge. Pretty much all day was on the move and recharge at night. Stayed in standard hotel room no problem.
-
Sending you the best’s Summer greetings from the Algarve Portugal, on our round trip of the Iberic peninsula
-
BRAVO Peter!
-
AWESOME! I love the picture and the pup!
-
-
These are some great experiences, ideas and pictures!
My sister came to visit and we hit every beach possible. I was having a bad reaction to the QALSody treatments and needed help walking, getting in and out of the water at the beach and a few other activities; however, we made it work! She was here for almost 3 weeks and we went everywhere in SWFL! It is nice to live in an area that your loved ones want to visit over and over again!
-
I was diagnosed in October of 2022 but symptoms actually started a year earlier. I have bulbar onset so my first symptoms were losing my singing voice and difficulty swallowing and speaking. My left hand had also become weak. We were in the process of building a new home on Amelia Island and between that, moving, and all the tests and appointments to figure out what was wrong with me we did very little traveling that year. Since I had a feeding tube since early in 2023, travel with formula, medicine, and a very tight schedule made travel undesirable. Moving into a brand-new home (December of 2022) took all of our energy. We made two car trips before the feeding tube, but only five or six hours from us. I continued to take walks on the beach, attend local festivals and the theater, enjoy local restaurants, and dance and exercise at the Y as long as I was able. I even played one-handed golf and mini golf. Now I am pretty much confined to my wheelchair. I belong to a book club and still meet with the French conversation group I started here. We still go to the theater, local festivals, and the boardwalks at the beach. But most of all, I am blessed to live someplace where people not only want to visit but is easy to get to so we have company here almost every month. Travel now? That’s a big NO. Too tiring and complicated.
-
My wife was recently diagnosed with Bulbar onset ALS. Since we live in NC. The ocean and mountains are not far away. We have made plans for a family beach trip before school starts. I have asked her if she wants to go anywhere particular, she needs to make a list so we can go while she’s still able.
-
What great travelers you all are! Now that we’re mid-way through summer, does anyone else have trips they’re planning or have already taken?
-
I was diagnosed with Bulbar ALS June ’22. Speech is greatly affected, swallowing fine, but now hardly walking.
I recommend cruises. They make it easy for people with disabilities. I am considering a trip to Disney also. I love the beach, but I walk with great difficulty. I am thinking there has to be a way for those beach wheelchairs to be more accessible to transport. I have seen ADA campsites in the Rocky Mountains. I was in Estes Park in October, and they have all terrain wheelchairs they lend for free.
Log in to reply.