Traveling with SMA - December 2004

Traveling with SMA

I love to travel! I have been told that because of my disability, I cannot and should not travel. Luckily, I’m not a very good listener when someone tells me I can’t do something. My caregiver, Brenda, and I have been almost clear across the United States. We’ve driven from New York to Wyoming, and numerous other places in between!

Brenda and I do our traveling by van. We do this because of the amount of medical equipment that I have to take everywhere with me. Road trips take a great deal of planning for anyone, but when you add in medical fragility and all the equipment that goes along with it, you have to be prepared for any kind of situation that could arise.

When Brenda and I decide that we would like to travel somewhere, be it to my grandparent’s lake house in New Jersey or to Brenda’s aunt’s house in Minnesota, we need to plan in advance. We must first figure out how long it will take us to get there. I can only travel five to six hours a day because of my health. If it will take us more than five to six hours then we need to find a hotel to stay in. The hotel must be accessible and have the option of a roll away bed or fold out couch; this is because I am transferred via a lift. The lift has to have room to go underneath the bed and most hotels have platform beds. Once we find the hotels and book a room, we need to prepare all my medical supplies. We need to make sure that I will have enough formula, feeding bags, ventilator tubing, and such, to make it to and back home from our vacation. We also must be prepared for the worst case scenario. If my gastric tube malfunctions then we need to be sure we have another tube available at a moments notice. Anything can happen so we need to be prepared for it.

After all the planning is through we wait, impatiently, for the travel date to arrive. A few days in advance Brenda begins to pack the van. She packs my medical supplies, our clothes, and other things we don’t use on a daily basis. When the travel day finally arrives, it is a packing nightmare. Brenda and I have traveled together so many times that Brenda now has it down to a science. Everything has its place and won’t move an inch until we reach the hotel.

I am the last thing to be loaded up. During the drive, I usually watch movies or listen to the radio. If it is summer, I sometimes listen to books on tape or CD. When we reach the hotel, Brenda has to unload all the necessities. By the time we reach our room, we are worn out.

When I travel, I get to see things and meet people that I never would have if I listened to the people who said I shouldn’t and couldn’t travel. Traveling is always an adventure, even if you are just going down the street. It is my favorite thing to do and I can’t wait for my next adventure!