He’s a Traveling Man

Those What Ifs

Paul Benson at Tucson B & B 2006

The suitcases were lined up by the front door, car service ordered for 8 am the next morning, two round trip tickets to Tucson AZ were in my purse. Everything was set for our two-week vacation. So why did I feel so unsettled? Was it because this was the first major trip for my husband Paul since his stroke 14 months earlier? Yep, that was it.

Since that time Paul had made remarkable strides through speech, physical and occupational therapies, but life was very different. He struggled with finding and articulating words, had difficulty following a rapid paced conversation and became confused if more than five or six people were around us. A set routine and predictable day were important to his still recovering mastery over his world. He functioned better with no distractions, whether in dressing, watching TV, or eating. Multi tasking was no longer a concept we could embrace. The end of multi tasking could be thought of as a ‘good thing’, it also meant that some activities in the larger world were difficult or upsetting. He was just beginning to get comfortable with the crowds and layout of our supermarket. Going through a large international airport could be far more distracting than the local supermarket.

My mind was swirling with ‘what ifs” – What if he got sick while we were away? What if the environment at the B & B we had selected proved just too hard to adjust to? What if the noise and confusion of the airport confused and upset him? What if fellow travelers did not understand Paul’s struggles with aphasia? What if, what if, what if….

But wait a minute, I thought, we had planned this trip like no other. We planned ways to incorporate regular routines in our vacation routine, yet still allow for a degree of adventure. We were traveling with my sister and brother in law, two people who understood my husband’s needs. We had picked a B & B that was small; we four would be the only guests. The grounds offered many spots to sit and read or relax. Paul and I could practice his speech therapy exercises. His speech therapist had compiled a series of travel related assignments to help his continued speech recovery. He could nap in the later afternoon and be refreshed for a dinner out. We had even talked about who would handle baggage, and car rental so that things might proceed smoothly.

All this planning paid off. The trip was delightful in every way. We returned home rested, happy and proud. We had successfully reclaimed a piece of our lives that Stroke had tried to claim.

Paul and Eileen with their friends

The most useful planning turned out to be our preparation for the airport experience. We developed a good routine for dealing with Airport Maze. The trick to working a maze is looking ahead. That is what we do when we travel – look ahead.

How We Work the Airport Maze

We tell all Paul’s doctors about our travel plans. His cardiologist once provided a helpful reminder about the interaction of one pill and sun exposure. Medications are put in a clear plastic case and packed in the carry on bag. We also carry a set of written prescriptions just in case the actual pills get lost. The prescriptions go in a folder along with copies of our Health Care Proxy papers, and medical and personal emergency contact information. We research the medical facilities at our destination and print out driving directions for the nearest hospital with a stroke center. These go in the folder too. Both of us know where the folder is packed.

Several times in the two days before we travel Paul and I talk through the steps we will go through. Although it is sometimes hard for Paul to discuss things in the abstract sense, this run through helps him prepare for the actual event. We take earplugs. Airports are way too noisy. To Paul the noise and confusion can be overwhelming, making it difficult for him to follow a conversation or even walk. Using earplugs in the terminal helps.

As soon as we get inside the airport terminal we stop and sit down. Paul takes his wallet out of his pocket. He removes his photo ID and places it in a breast shirt pocket. He replaces his wallet in his pocket. This eliminates some of the fumbling for ID during actual check in. It also gives us an opportunity to reconnoiter; where is the check in, the elevator, the bathroom? I point out signs and places while we sit there. As we move from check in to security to the gate, I tell him where we are going next. This adds some beneficial predictability to our travels.

We check our larger bags but put one change of underwear and toothbrushes in our carry on. It is almost a given that at some point in your travels a plane is cancelled and an unexpected overnight stay will come up.

When we make our reservations we request wheelchair service. Or we hail the terminal golf cart. The walks to gates can be long. A forced march is not the way to start a vacation.

At security I gather up to five plastic tubs and move them to the side of the conveyor belt. I tell other people to go ahead of us while we take our time, setting shoes, purse, and jewelry in the tubs. We look for the nearest chair after the security gate before we actually go through. Paul precedes me thru the security gate and goes to sit there. I collect our tubs of belongings and meet him at the chair. Usually airplane personnel will help me. Paul does not wear a belt when traveling, because it is just one more distraction. The belt is packed in the suitcase.

We always allow time for a coffee and a muffin before boarding the plane. It is our reward for successfully navigating the Airport Maze!

Life Continues to Be Reclaimed

This month, four years since that first airplane trip, Paul adapted the Airport Maze Routine for traveling alone. He just returned from a trip to visit his sister in Chicago. Another piece of his life reclaimed!

Paul & sister Tanny in Chicago 2010

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Reader Comments

Eileen, thank you for sharing this great story with Aphasia Corner audience! There are many great traveling tips in your post — I am already planning on creating another post in a near future, with a list of travel tips and a checklist for traveling…

Suggestions and comments from other readers (people with aphasia, caregivers, SLPs) on what has been helpful for them when traveling are welcome.

#1 
Written By Ognjen Todic on September 15th, 2010 @ 7:40 am

What a good post! It's wonderful that you and Paul still travel. It took more preparation, but the eventual trip looks great.

This is just a general tip, but it could be especially helpful when traveling. For one of my patients, I made a name tag hanging from a lanyard. It said "My name is [NAME]. I have aphasia." The back said "I have trouble talking. I understand what you say and write, but it's hard for me to respond. Please be patient." She could choose to show it or keep it tucked away. If she had to start a conversation with a stranger, the tag let them know what to expect.

For people with severe communication difficulties, a note or tag explaining the problem can go a long way towards securing the patience and helpfulness of others. When traveling, conversations with strangers are more common, and helpfulness even more vital.

#2 
Written By Karen on September 15th, 2010 @ 10:13 pm

I am Paul from the article. If you have aphasia and are wondering about traveling alone. Just do it!

#3 
Written By Paul Benson on September 16th, 2010 @ 12:17 am

I am the sister of Eileen and proud sister-in-law of Paul. Eileen talks about surviving the stroke. Both Eileen and Paul are survivors and well on their way in devising ways to thrive post stroke!

#4 
Written By Ethel Lee-Miller on September 16th, 2010 @ 10:07 pm

Great article and tips. We are planning an overseas trip, and although I fly frequently, my husband, who had a stroke and aphasia, does not. Your tips will help me make his flights less stressful and more enjoyable for both of us.

#5 
Written By Sylvia on September 18th, 2010 @ 4:19 pm

Thank you Sylvia. Enjoy your trip and when you are back please let us know if any other ideas/tips come to mind.

#6 
Written By Ognjen Todic on September 18th, 2010 @ 6:44 pm

I enjoy to travel also. I had my stroke when I was ten from a rare disease. I am now 26. Doing a trip gives me something to look forward to. It challenges me to do new things. I am working now with the American Stroke Association in Las Vegas on a Stroke Cruise. It will be in 2011. It will be good to meet other people with strokes and aphasia. We can learn from one another. We can help each other. I like this new site. Thank you for putting it up. It will help other people. Come cruise with me.

#7 
Written By David Dow on September 25th, 2010 @ 1:23 pm

My grandmother just recently had a stroke and suffers from aphasia. I hope that one day I will be able to blog about her progress as well. Thanks for the inspiration.

#8 
Written By Kimberly Bob on October 29th, 2010 @ 7:52 pm

What an amazing story. Thank you for sharing. My mom (77) had a fall and brain surgery to remove a blood clot 3 weeks ago and as aphasia broca. I am trying learn everything I can about this and how we can help when she comes home from the hospital. I will be checking this blog out frequently. Carl lets us know that there is still HOPE.

#9 
Written By Lysanne Hassel on November 9th, 2010 @ 11:01 pm

Great story. My family is traveling to Las Vegas for Christmas this year. My brother in law has Aphasia & is especially sensitive to loud noises. Does anyone have suggestions on what type of ear plugs work best?

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Written By Joe Middleton on November 18th, 2010 @ 6:22 pm

Thanks for the story! My dad is 2 years post stroke and still suffers severe aphasia. My parents were big travelers and very adventurous before the stroke and I hope that they will one day be able to travel more easily. They have resumed driving trips to Biloxi and we are planning a trip to Hilton Head from Atlanta this summer for my Dad's birthday. I look forward to them being able to go longer distances by plane in the future.

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