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Travel Tips for HD 

Summertime is synonymous with vacations for many folks and traveling with someone living with Huntington’s Disease can be a little more complicated.  If you are planning a trip this summer take a look at our tips to ensure your time away from home goes smoothly. 

Planning Tips:

  • Is your destination new to you or is it a well-known location? Keep in mind that new places, while exciting, can be anxiety-provoking and unpredictable. Consider visiting locations that are familiar to you.  Knowing your way around as well as familiarity for the person with HD can help to reduce stress and anxiety. 
  • Consider how you will get to your destination.  Car? Plane? Bus?  These modes of transportation are important considerations. If you are traveling by plane, can your person with HD navigate the narrow aisles or use the restrooms with minimal assistance? Can you get a direct flight? Changing planes is nerve wracking and chaotic. It is easier on everyone if you can avoid it. If you are traveling by car, can your person with HD transfer in and out of the seats independently or do they need help?    
  • Traveling by car? Check in advance for rest stops that are labeled “family rest stops” as these will have a unisex family bathroom.  This is important if your person with HD needs assistance using the restroom and are of the opposite sex.   
  • Consider taking one extra helper along with you. This enables you to have an extra set of hands to help the person with HD and allows you to leave the person with HD for short periods of time. For example, if you need to use the restroom yourself or order food, an extra companion can stay with the person with HD while you see to these needs. 

Practical Packing Tips:

  • Consider packing a separate “comfort bag” for the person with HD. Include an extra change of clothing in case of a spill or accident.  Also include a favorite snack or beverage and any other comfort items. This bag can be kept within reach in the car. 
  • Place a copy of your contact information in the pocket, wallet, and coat of the person with HD.  If they somehow become separated from you helpers can contact you more easily. Include your back-up care person with this information too.  HD Reach has I Have HD ID cards for exactly this purpose.

Hotel Tips:

  • If you are staying in a hotel request a handicap accessible room. This will make using the shower and restroom much more convenient.
  • Consider educating the staff about HD before arrival so they have an understanding that you might have some extra needs or might need a hand with luggage etc.  
  • Once in the room, try to set up the person with HD in a way that closely matches their arrangement and routine at home.  Is the bathroom located to their right when they get out of bed at home?  Try to have their sleeping space mimic what they are familiar with. 

General Tips:

  • Try to maintain the routine the person with HD has at home.  It can be very challenging adjusting to new time zones.  
  • Have a plan but be open to change. The reality is that travel can be extremely rewarding and a beautiful experience for everyone, but so much is out of our control that plans inevitably get changed.  If possible, stay calm and try to adjust with these changes as they come. 
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