tall man squished into a small car

Surviving the Holidays with AS

It's that time of the year. Keegan, my husband who has AS, and I break out sweaters. We take out air conditioning units out of the windows. Grab a cup of hot cider. It also means being mindful and planning our travel so Keegan is as comfortable and happy as possible.

Finding comfort when traveling

We live in Philadelphia, but our families live in Ohio and Tennessee. This is a minimum of 8 hours of driving whenever we go back home to see our family. There are two big pieces that impact how Keegan does on these trips: where we sleep and what we drive in. Beds will not only cause pain, but have brought Keegan into flare-ups in the past. We discuss what bed options there are with our family members. For example, an air mattress is a poor option for Keegan. If we can't find a bed, we opt for a hotel or Airbnb instead.

I used to have a Toyota Camry, and believe it or not, drove it from Philly to Orlando with Keegan once. Keegan is 6' 4" and doesn't fit particularly well in a 4-door sedan. We upgraded to a larger car, a Subaru Forester, to accommodate his height and mobility. While this may not be an option for everyone, renting a more comfortable car may be a better experience to prevent pain and flare-ups.

Taking breaks while driving is critical. We're usually on the Pennsylvania Turnpike with lots of travel plazas, but no matter where we are, we make an effort to stop every hour or two to let Keegan stretch. On flights, we always request an aisle seat. We also get a written note from his doctor detailing his condition to justify the request.

Eating and drinking to serve the body

Halloween is close and sugar is everywhere from now until January 1. When we travel by car, we pack our own meals in the car to refrain from eating out and include healthy snacks, like veggies and dip, grapes, and nuts. It's a lot of effort upfront, but prevents Keegan from having intestinal issues while traveling. Keegan still eats Thanksgiving pies and Christmas cookies, but has become more mindful around how much of each he eats. We celebrate with family many times in the month of December and those pieces of pie add up quickly.

Holiday gatherings often include alcohol as well. Alcohol causes Keegan to become easily fatigued and his joints ache the next day. He's mostly cut out alcohol out of his diet, and only drinks what he enjoys instead of drinking socially. Mocktails are a great way to have fun while going out to celebrate with friends and family, too.

Setting expectations with family

This is still an ongoing effort years after Keegan's diagnosis. There are a few key points we review with them:

  • How Keegan's AS is currently doing, and any pain he's having to manage.
  • Taking a bit longer to drive to our destination for added stops.
  • Keegan needing other drink or food options to keep up his healthy diet.
  • If he's in pain, what others can do to help. Or finding places Keegan can rest at their home.
  • What limitations Keegan has, and if there are important holiday events, which he may need to skip to allow his body to recover.

These discussions aren't always easy, especially when we have to travel between families, but setting expectations early is crucial to setting physical and mental boundaries.

I hope some of what we do to prevent Keegan from going into a flare-up during the holiday season helps you and your family as well! What other tips do you have for our family or others with AS to celebrate and find joy during the holidays?

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