Ventilator-Assisted Living©

Spring 1997, Vol. 11, No. 1

ISSN 1066-534X

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Read selected articles from this issue ...

Travelling with a Ventilator
Audrey King, Toronto, Canada

How Will They Know If I'm Dead?
Transcending Disability and Terminal Illness

Robert C. Horn III, PhD

Living with Spinal Muscular Atrophy
Jacqui Taptto, Lawton, Oklahoma

John H. Emerson and the Iron Lung
Judith Raymond Fischer, California

SSI Benefit Changes for Children with Disabilities

Living with ALS Manuals Revised

Canine Companions for Independence and Ventilator Users

In Memoriam: D. Armin Fischer, MD


From a talk presented during "Exploring Breathing Support Options," April 23-24, 1996,
sponsored by Citizens for Independence in Living & Breathing (CILB) of Toronto
.

Travelling with a Ventilator

Audrey King, Toronto, Canada

Travelling with a ventilator is possible. In spite of the extra baggage you must carry, you too can enjoy the sights and sounds of other wonderful places. All it takes to get started is a dream, a destination, some careful pre-planning, and a sense of adventure.

Where do you want to go? Research it and take responsibility.

Where do you want to go? To the next town or to another state or province? To another country? Research your ideas and consider the options for getting there. Talk to other ventilator users. Lots of people have travelled, even those with a tracheostomy who are full-time ventilator users. Some travel agents specialize in organizing holidays for people with disabilities, but don't expect them to know your particular needs and expectations.

My first trip with a ventilator (which I use at night) was to Barbados. This was in 1966, long before workers worried about their backs and years before policies and procedures for handling people with disabilities were written. In those days a handsome pilot literally lifted you from your wheelchair and carried you up the gangway. That first trip was amazing. The soft tropical air, warm turquoise sea, local people, and relaxed way of life just whetted my appetite for more. I was hooked on travel, in spite of a wheelchair, ventilator, extra luggage, and personal support needs. The world was mine, just waiting to be explored.

On that first trip I learned the importance of research and pre-planning. In Barbados the electrical cycle was 50 rather than 60 and the ventilator would not work properly. For a few anxious hours it seemed I was doomed to return home. Fortunately, a retired family friend loaned the generator from his illicit moonshine operation and I was able to stay as planned.

Check the local electricity before you go: the voltage, the amps, the watts, the cycles, the wall outlets, etc.

I have travelled to many countries since that first Barbados trip – England, Scotland, Wales, Majorca, Sweden, Germany, Austria, the Netherlands, and all throughout Canada and the United States. I've roughed it in ancient cottages with old-fashioned wiring, travelled on narrow-gauge steam trains, and explored damp, dripping mines deep in the Welsh mountains. I've bunked on a narrow bench in a narrowboat on ancient British canals, camped in the woods, and silently sailed awestruck for a week on the deck of a 100-year-old, two-masted schooner in the Netherlands.

As you might expect, many trips have required some creative problem-solving, such as extra-long extension cords connected together through the trees at campsites, and multiple books wedged alternatively under each hip to raise from floor to wheelchair height.

Be adaptable and creative in solving problems. Know the local resources.
In London, St. Thomas' Hospital generously loaned me a comparable British ventilator so I was able to avoid the different electricity problem.

My friends and I spent a week's vacation on a British narrowboat (with no electricity) by putting a gas generator at the back of the boat and by running an extension cord along the 70-ft. side of the boat and in through the tiny window where I slept. Can you imagine opening your eyes to a glorious dawn, moored at the foot of a peaceful field in the middle of nowhere, face-to-face with fifty silent cows, all collectively chewing their cud while contemplating the source of this noisy intrusion? That was a week to remember.

Take or have access to an alternate power source, such as a battery.
Travel is exciting and rewarding, but always be prepared for the unexpected. Electricity may not be reliable, particularly in less developed regions. In Majorca, for example, I operated the ventilator from battery because of frequent blackouts. In the Netherlands, when sailing on the 100-year-old schooner, electricity was not available at night, even though I had carefully written in advance and was assured there would be no problem. Fortunately, the crew adapted their wiring and set me up with their emergency generator for use during the night.

Have a backup ventilator. Never be separated from your ventilator.
Once, when returning to England from Majorca, the airline mistakenly sent both my wheelchair and ventilator to Zurich. The ground crew panicked, but I was calm because I had a backup ventilator and also knew the local resources, should help be required. On another occasion, my suitcase was stolen at Vancouver International Airport. Since then, I have always insisted my equipment accompany me at all times.

Take a letter stating that essential equipment must stay with you and attesting to your expertise in handling it. Take a personalized travel kit.
The more you travel the more skillful you will become at planning and preparing. You'll find yourself taking more and more bits and pieces for all kinds of possibilities. You'll probably assemble a travel kit of generally useful things such as small tools, extension cords, a surge-protected power bar, and a "cheater" plug which enables you to put a three-pronged plug into a two-hole outlet. (Many cottages and old buildings have non-grounded two-holed outlets. Cheater plugs are not approved in Canada, but can be purchased in the United States.) Adapters are needed for electrical outlets in other countries. A transformer is needed to convert the electricity of another country to that required by your ventilator. You might also include gaffer or masking tape, string, and safety pins.

Take extra supplies. Consult with electrical experts.
Be sure to take extra supplies in case something gets damaged or lost. Always consult with an electrical expert before you go in order to ensure you have the right conversion equipment.

Protect your equipment.
You'll become more efficient at packing and packaging your equipment. A modified luggage dolly with bungy cords is useful for trundling heavy equipment through airports and over long distances. I've designed a heavy canvas carrying case with sufficient space and pockets on the sides to pack soft protective towels, pads, and clothes around the ventilator. The case is easy to zip open for airport inspections and for use during transit.

Know airline/bus/train and customs policies and procedures. Allow extra time.
Security personnel at airports are justifiably nervous about equipment they have never seen. Only once was I nearly refused clearance. The situation was understandable enough, as the passenger just ahead of me was apprehended for trying to board with a chainsaw in his luggage. It helps if you are familiar with airport procedures and policies.

Allow enough time for officials to be satisfied and comfortable. An extra half hour at least is required for pre-boarding. And remember to allow time for last-minute personal needs, like using the washroom.

Know your ventilator settings and operation.
Know your ventilator settings and how to do basic setup and problem-solving. Ventilator connections can become loose, circuit breakers can pop out, and knobs can get changed with all the equipment handling.

Know your travelling companions.
A successful trip will ultimately depend on the compatibility between yourself and those who travel with you. Whether it's family, friends, or paid assistants, you must feel comfortable and secure with each other before you start out. If possible, do a 48-hour dry run together before you leave. Spending continuous time together can be tough for even the best of friends.

Unfamiliar environments, luggage handling, and dealing with unexpected situations over which you have little control cause stress and fatigue. You can't be as independent as you are at home. Some people prefer to travel with an organized group where stress is lessened because luggage is handled, and route, accommodations, and procedures are checked out by others before the trip begins.

Know yourself.
What kind of trip do you want? One that is energetic and full of adventure or one that takes just getting there and relaxing? What kind of person are you? An optimist with a sense of adventure? A person with reasonable energy? Can you roll with the punches? Are you a planner – a levelheaded, flexible, responsible kind of person who can solve problems in a practical way as they occur? Can you adjust to circumstances with humor and an ability to tell a good tale afterward? If the answers are YES, then go for it!

It could be a trip to the next town or to the other side of the world, but the sights and sounds, the photos, and long-lasting memories of being in another place will stay with you through even the bleakest winter. It all begins with a dream and a plan.

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