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Parents as Rare: Episode 86

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PARENTS AS RARE – EPISODE 086

Travel Tips from the PAR Community with Lisa Weinberger

Lisa Weinberger and host, Adam Johnson, share tips and tricks for summer travel, hitting the road, or taking to the skies when you have unique health situations and circumstances to consider.

EPISODE HIGHLIGHTS

Preparation

  • Plan an itinerary for each day that includes all travel details for easy reference, preferably in a way that can be shared among other traveling family or friends. 
  • Give yourself plenty of time in advance of your planned travel dates to outline and plan the trip details. 
  • When building your itinerary, build in time for rest or any other needs you may have.
  • Get ahead at home before your trip to avoid having things to do when you get home. 
  • Check the accessibility of places you’ll be visiting.
  • Make doctor’s appointments in advance of your trip and ensure you have all needed medications filled or adjusted. Order prescriptions well in advance of your travel dates.
  • Book sufficient accommodations in case you can’t participate in activity or need to remain at the hotel.
  • Locate local grocery stores, general retailers and pharmacies where you’ll be staying and see what delivery options are available. 

Organizing Medical Information

  • Have a list of your medications, medical conditions, allergies and emergency contacts printed and laminated, readily available in one convenient location. 
  • Include your providers in planning to establish healthcare proxies.
  • Compile your healthcare providers’ contact information.
  • Create an audio file on your phone that explains your disease diagnosis and protocols in case you’re unable to speak in an emergency.

Packing

  • Start packing in advance of your trip so you can take your time and pace yourself.
  • Only pack what you need to avoid checking bags with the airline, if possible.
  • Pack a water bottle so you stay hydrated when you’re traveling. If you’re traveling somewhere hot, also bring a cooling fan or cooling towel.
  • Bring a book or ebook device to catch up on your reading while you’re traveling. This is also a good time to catch up on your favorite podcasts. 
  • Don’t forget headphones for sleeping, travel ambiance and listening to music, podcasts or audio books.
  • If there are last minute items you might forget, put the items at the door or create a reminder for yourself.
  • If you have one, bring your handicap placard with you.

Equipment and Supplies

  • If needed, look for a scooter rental in the area you’re traveling to. Some companies will deliver to your hotel room in advance.
  • Wear an emergency medical band, especially if you’re traveling alone. 
  • Pack extra medication and medical supplies when traveling just in case you’re delayed returning home. 

Airline Travel

  • Each airport and airline may have differing rules about accommodations you may need, so call ahead and ask if you can’t find related policies on their website. 
  • Many airports and airline companies have accessibility service teams to help you with your travel, so when you call with questions, request those resources.
  • If there are ways to speed up travel, international or domestic, opt to do it. Use pre-check to move through airline security quicker. If you’re renting a car, sign up for contactless pick-up so you can locate the car and be on your way quickly.
  • If you’re traveling with medical equipment, ask security to hand-check it to avoid damage.

Car Travel

  • Pack and bring light meals, snacks and a cooler with beverages. Use grocery delivery services to get everything you need to pack.
  • Break up your drive and share driving responsibilities, if possible. 
  • Take advantage of stops, planned or otherwise, to get out of the car, move, take photos and enjoy the experience.

Post Travel

  • Don’t make big plans for after you return home so you can rest and recover.
  • Schedule physical therapy, massage therapy or chiropractor appointments for when you return home to help with stretching and loosening up muscles. 

RESOURCES MENTIONED

Parents As Rare – Episode 52

Lisa Weinberger – Be Your Own Advocate, Listen To Your Body, Take Control of Your Health, & Ask Questions

Parents As Rare – Episode 65

Tara Zier – Stiff Person Syndrome Research Foundation and Finding Your Purpose

Parents As Rare – Episode 43

Parents as Rare: Cowden Syndrome and Male Mental Health – David Ross

Parents As Rare – Episode 73

Challenging the Status Quo

Scootaround

https://scootaround.com/en

ScooterBug

ScooterBug Home

Once Upon a Gene Podcast

https://effieparks.com/podcast

TSA Cares

https://www.tsa.gov/travel/passenger-support

FOLLOW ADAM JOHNSON

Twitter @RareDiseaseDad

Tweets by RareDiseaseDad

Instagram @RareDiseaseDad 

https://www.instagram.com/rarediseasedad/

LinkedIn

https://www.linkedin.com/in/adam-johnson-8a1473125

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