Traveling For The Holidays With SMA

The holiday season is around the corner, and many of us are gearing up for travel to visit friends and family. I know I am! I’m currently counting down the days to see my family and eat all the delicious holiday foods.

Traveling in a wheelchair can be challenging

While for most people traveling entails booking hotel rooms and a flight and packing a bag, for those of us who use wheelchairs, there’s a bit more planning and preparation involved. I’d like to share my personal experiences and tips to make traveling as a wheelchair user with spinal muscular atrophy (SMA) a more comfortable and enjoyable endeavor.

Sleeping arrangements matter

When I travel, I typically venture out of state to stay with my family for a week or two. Fortunately, I was given an old hospital bed that we keep at my sister’s home. This bed allows me to adjust the position, which is vital for my comfort and needs.

Packing a mattress and using this customized bed ensures a restful stay. It’s a great example of how reusing or repurposing old items can be a practical solution for wheelchair users when staying somewhere else.

Using a normal bed is just not in the cards for me anymore since I’ve gotten older and it’s harder to be transferred without my Hoyer lift. Staying in hotels and motels it’s hard to know what the bed situation will be like. If that’s something you need to do though be sure to call ahead and make sure they can accommodate your needs!

I know Air BnBs are even offering homes now that actually have amazing accessibility features such as Hoyer lifts and shower chairs right on the premises.

Remembers essentials and medical supplies

In addition to the usual travel essentials like clothes, toiletries, and food, I must also bring along all my medical supplies and equipment. Key items include my wheelchair charger, incontinent supplies, sleep apnea machine, Hoyer lift, and a portable ramp for potential accessibility challenges at entryways. These items are indispensable for maintaining my health and mobility while on the road.

Comfort during the journey

Long car rides can be taxing for anyone, but for those with SMA, it’s a constant challenge to stay comfortable in a vehicle. Potholed and winding roads, sudden stops on highways, and extended travel times can take a toll on our bodies. To ease the journey, I rely on my wheelchair’s footrest that rises and the reclining backrest. I also use blankets to support my neck and arms, preventing fatigue and falls.

Preparation for the road

Since it’s difficult to make unscheduled stops on highways, I ensure I have everything I’ll need for the entire trip before we embark. Having a 10-foot iPhone charging cord that connects to my wheelchair’s battery charger allows me to charge my phone on the go. I also use the long cord strategically by wrapping it around my armrest, so I can independently retrieve my phone if it falls without needing assistance.

Snacking and hydration

For snacking and drinking, I pack snacks in lightweight, easy-to-access ziplock sandwich bags. Additionally, I use a closed-lid water bottle with a straw, positioned on my lap for easy access during the drive. These measures ensure that I can stay refreshed and nourished without difficulty.

Travel comfort aids

A travel neck pillow can be a great comfort during long journeys, but I sometimes use it differently by turning it around to offer support when my neck gets tired. Adapting common travel items to suit your needs is key to a more pleasant trip.

Challenges of traveling with SMA

As I’ve grown older and my mobility has decreased, the physical demands of travel have become more apparent. I grow tired more quickly than I did as a kid riding in the car. My back gets stiff and my hips ache to the point where I just need to get there.

While most people can pull over and stretch when they get tired, my situation is different. Whether I’m in the car or at a rest stop in my wheelchair, my body remains in the same seated position. This makes me inclined to reach my destination as quickly as possible.

Once I’ve arrived where I’m going it takes me a good three days before I feel my body start to even begin to recoup from the drive. I need extra sleep to make up for the energy I drained on the journey out. It’s the same scenario on the trek back home as well.

To wrap it up, traveling is something I absolutely love, and SMA hasn't diminished my excitement for exploring new places and reuniting with loved ones. By making a few adjustments, planning ahead, and embracing a positive attitude, I've found that traveling in a wheelchair isn't just doable – it can be quite fun. After being exhausted from a long drive, seeing my nieces and nephews makes it all worth the pain and struggle.

Stay warm, stay safe, and happy holidays!