John Quinn was diagnosed with amyotrophic lateral sclerosis, better known as ALS, in May 2016. Since then, he’s taken many vacations with his family, including separate trips with each of his three kids and traveled abroad with his wife. Along the way, he’s learned several “hacks” to ease the travel process.
“Because our extended family lives in Houston, travelling for the holidays is easier for us,” Quinn said. “But now that I’m primarily in a wheelchair, I make sure to bring my ramp so that I can get in to their house.”
“My husband was diagnosed with ALS in 1993, and my son suffered a brain injury in 2013,” Toennis said. “Our family has never let a physical disability get in the way of our holiday plans.”
Quinn and Toennis recommend these four tips to help families with disabilities enjoy their holiday travels safely:
1) Plan, plan, plan – Begin planning at least a month in advance. Analyze your daily routine for supplies and equipment you will need to add to your packing list and then pack extra of everything in case you experience travel delays or lost luggage.
“I always tell people to prepare and pack for the worst-case scenario,” Toennis said. “For example, prepare a medical information sheet that stays with you in the event your caregiver cannot provide information.”
The medical information sheet should include a copy of your driver’s license or passport on one side. The other side should include all medical information a health care provider might need including your conditions, a list of medications, past surgeries, involvement in any research studies, contact information for your primary care physician, all specialists, any research study contacts, etc. Toennis recommends making two copies – one that stays with your loved one at all times and another in the luggage.
2) Be specific when booking lodging – If you plan to stay at a hotel for the holidays, skip the central reservation line and call the hotel directly to ask for a room that complies with ADA regulations. Toennis has learned that staff answering central reservation lines may not be familiar with room specifications, such as bed and shower configurations, at the hotel you are interested in. A few days before your trip, call the hotel to again confirm that the right room is reserved for your stay. If you plan to stay in a rental home, Quinn recommends calling the owner to ensure the space will meet your family’s needs.
3) Talk to your family – When staying with family, call ahead to make sure the room set aside for the person with a disability will not add extra stress. Talk openly with your family on what you can and cannot do. Toennis recommends incorporating rest breaks where you can put your feet up and wearing compression socks throughout the day to avoid developing deep venous thrombosis (DVT). DVT is a condition where a blood clot forms in the vascular system and blocks the flow of blood to an organ like the heart, lungs or brain, which can cause damage to that organ.
4) Communicate at the airport – Call ahead to make sure the airline is aware of what accommodations you will need for the trip and be clear on what you can and cannot do to avoid travelling stress. While most domestic flights will use the jetway to board and exit the plane, a jetway might not be used at some international destinations. Quinn recommends telling the airline or flight attendants before takeoff if you will not be able to use stairs upon arrival.
“I’ve experienced so much the world has to offer since my ALS diagnosis,” Quinn said. “My family has learned that physical limitations do not have to disrupt our holidays. In fact, I’m travelling with my extended family – 17 people in all – to Costa Rica to ring in 2018.”