ALS News Today Forums Forums Living With ALS Have you made plans for any vacations this summer? How is preparing for trips or vacations different from your pre-ALS days?

  • aimeesmith1970

    June 26, 2024 at 10:12 am

    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 🙂

    • Lisatodd

      June 27, 2024 at 5:54 pm

      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

  • mtu1976

    June 27, 2024 at 2:49 pm

    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).

  • carene

    July 15, 2024 at 8:46 pm

    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.

  • Amyk

    July 16, 2024 at 4:50 pm

    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!

  • moges

    July 17, 2024 at 1:41 pm

    Anyone have ideas? Could you please say more about how traveling with a wheelchair or a walker is made possible by airports and airplanes?

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