What Works for Me
Jo Moore, Cobb Mountain, California (firstname.lastname@example.org)
My daughter Kathryn and I traveled to Paris in the summer of 2004, thanks to our friend Cate who donated her frequent flier mileage on United Airlines and accompanied us during eight fabulous and unbelievable days. The weather was perfect, and the people very friendly and helpful.
Kathryn, studying French in high school, was intrigued by a trip to Paris – an option for the students during spring break. Unfortunately the travel company was not interested in accommodating a traveler who used a wheelchair and a ventilator, and without the support of the group, the trip seemed overwhelming. But with Kathryn's 18th birthday and her acceptance by UC Berkeley, we needed to celebrate and decided to go Paris anyway.
Kathryn has used a ventilator for the past 12+ years, diagnosed with an undetermined neuromuscular disease presently labeled as some relation of anterior horn cell disease, akin to SMA. (For many years, the diagnosis was congenital muscular dystrophy.) At 5+ years old and halfway through kindergarten, Kathryn developed pneumonia that led to the need for a tracheostomy and ventilator. She has never had the muscle strength to bear her own weight, and her arms are equally weak, though she has no trouble applying make-up or typing and playing computer games.
Kathryn used a talking valve for a short time, but prefers PEEP at about 7.5 and holds back enough air to force through the larynx so she talks and even sings.
She has not needed to be suctioned for years now. Her ventilator-free time is up to three hours a day.
We began planning the trip by carefully reading the travel articles in IVUN News (now Ventilator-Assisted Living) that provided basic guidelines about contacting the airlines. Thus began the long and repetitive communications with them to ensure they understood that we were traveling with special needs. Kathryn decided to use supplemental oxygen inflight to combat the poor cabin air and high altitude, and the nonstop service between San Francisco and Paris was important because the cost of oxygen is based on each leg of a flight.
I experienced a great deal of frustration in being able to communicate only with the toll-free number for United's Aero-Medical desk. I was unable to speak with anyone we would encounter at the San Francisco airport. That frustration was entirely alleviated when we arrived at the airport, and they were perfectly ready for us. I had been calling for months on a weekly basis, and in the last week I called daily. All the paperwork I brought in one binder proved useful and reassuring – lists of the equipment and which bag/carryall contained which piece of equipment.
Kathryn's equipment needs are massive. Fortunately United Airlines allows unlimited medical equipment on board. The Aero-Medical desk suggested a letter from her physician authorizing the need for all the equipment we brought on board: three large bags of medical equipment, Kathryn's wheelchair cushion, LP10 ventilator, a transformer, and two gel cell batteries. United Airlines didn't approve plugging into the airplane's electrical system.
Arriving early to ensure plenty of time was critical. Kathryn's good-bye to her "legs" (her power wheelchair) was difficult. We simply had to trust. We disconnected the batteries and taped over the connections from both ends, and took off the drive control stick and tilt control mechanism and wrapped them in bubble wrap and duct tape and cardboard. We transferred Kathryn to a manual wheelchair and her ventilator and battery to another wheelchair.
The airplane ride was not comfortable for Kathryn (requests for an upgrade could not be filled so we had coach accommodations in a Boeing 777). She was put in the seat that provided an oxygen hookup which meant it was over a wing with little visibility. The LP10 and battery both fit snugly under the seat in front of her. The spare battery, which we needed on the 12-hour flight, was in the overhead luggage compartment.
There were small monitors on the seatbacks in front of us to view a variety of movies during the flight. On the flight to Paris, the person sitting in front of Kathryn fully reclined the seat. Kathryn couldn't get supported sufficiently to lean back herself, so the movie screen was too close to view. We tried pillows and moving her, but that was very difficult with no standing room above her to get a strong hold to lift and move. For the return flight, Kathryn sat in the aisle seat, and we could position her better, although the oxygen tubing reached across in front of me. On the flight to Paris, Kathryn was so excited that the seating conditions didn't matter. On the return flight, she was prepared, grateful, and uncomplaining.
Toileting was an area of concern. Kathryn has a large bladder capacity and often does not drink in order to minimize the inconvenience of needing to find an accessible toilet. Increasing fluid intake helps to reduce jetlag, and although Kathryn was thirstier and drank more than usual, she did not need to use the toilet for the entire journey from San Francisco to Paris apartment. It was reassuring to know there was a toilet with more space and that the flight attendants would have assisted her in using it. The transfer from her seat to aisle chair to the toilet and maneuvering in the toilet would have been a feat. The airline staff is only available to help one to the entrance of the toilet. The help we received was so friendly and above and beyond the call of duty most of the time that I think we could have received more help had we needed it, although it is not their responsibility.
On arrival in Paris, a young Frenchman who spoke no English met us with an aisle chair to use to go through the airport. The chair had no armrests, no seat belts and was very narrow. We had to carry luggage bit by bit until someone came with carts to carry the entire medical luggage and Kathryn and ventilator and batteries – quite a parade.
The airport's moving sidewalks that dipped and climbed were a bit scary. At one point the young man sent the ventilator ahead in order to assist with Kathryn and another bag. We watched the ventilator fall, slide, turn, and had no idea what it would run into next. It was not a relaxed, calm moment. Kathryn kept saying to me, while my stomach was in my mouth about the ventilator, "Keep your attention on ME. We can get another vent, we can't get another ME!" This is an indication of how worried she was. The ventilator was unharmed. We were relieved to pick up the rest of our luggage and to get Kathryn transferred to her own wheelchair which made it in one piece.
One glitch was transport from the airport to the apartment. Even with the wheelchair description and measurements, a van with no lift was sent to meet us. It was assumed that the chair could be hoisted, and Kathryn helped into the van without ramp or lift (or tie-downs). She cannot assist in transfers, and her chair, ventilator and battery weigh about 350 pounds. The driver was immediately helpful in calling for a van with a lift that eventually arrived.
A huge help was a friend of a friend, Caroline, a Parisian. I asked her to search for a raised toilet seat and an air mattress and pump. Kathryn has dislocated hips, and the air mattress minimizes the pain in the hips. Caroline met us at the apartment when we arrived with those items and a beautiful bouquet of roses. Her knowledge of French was invaluable, as was her familiarity with the Parisian scene.
In researching an accessible apartment, we provided wheelchair measurements, asking specifically about steps and doorways. We highly recommend France For Rent (www.franceforrent.com). The whole organization was extremely helpful and thorough in their concern and communications. Cate found an apartment to rent in an ideal location that would accommodate the three of us and was wheelchair accessible: a spacious ground-floor apartment across the street from the Musxe d'Orsay. It had enough electrical capacity for Kathryn's ventilator, battery chargers for both her ventilator battery and chair battery, and the heated humidifier she uses at night.
IVUN's Resource Directory for Ventilator-Assisted Living yielded medical contacts in Paris, and I emailed a couple of physicians who quickly responded. They referred us to a respiratory home medical supplier who emailed us with contact information. The American Hospital in Paris was another resource, and although the staff was less responsive to inquiries and contact, it was reassuring to know it was there.
The basic travel guides we studied had few references to accessibility. Gordon Couch, the author of Access in Paris (Access Project, 39 Bradley Gardens, West Ealing, London, W13 8HE, UK), asked us to collect information for a revised edition. The 1997 supplement was surprisingly accurate and made us aware of many things to ask and consider. We found very little difficulty in getting around in the museums; we simply had to use certain routes indicated on maps given cheerfully at the information counters. Entry was free for Kathryn, because she used a wheelchair, and for me as her companion.
General accessibility issues were streets that were too narrow and curb-cuts with an average of three-inch high bumps. That made for some extra sore neck, back and hip pain, but with the excitement of being where we were, the pain was tolerated almost happily. Traffic was chaotic and fast. Crossing streets was an adventure and scary at times. There were two nights when the wheelchair battery ran low, and we had to help push the chair to get "home."
We used public buses only twice. The signs designating wheelchair-accessible buses are clearly marked at the bus stops and on the buses. The drivers are helpful, driving close to the curb to lower the ramp from the back door. The place to park the chair inside the bus is clear – straight in from the back door. There are no tie-downs, which concerned Kathryn quite a bit, but all went well. She chooses not to wear her headrest when not in the van here at home, but for the streets and buses in Paris, she was glad to have it on the whole time.
The eight days passed too quickly and it was time to return home. In Paris, airport security didn't want to let us board with the ventilator or batteries or charger, but United Airline's employees were very helpful in clarifying our needs and resolving the situation. Having the paperwork on the ventilator and batteries made a difference. The pilots came back to see Kathryn and her equipment once on board. They were intrigued by the manual I had sent them to assuage their concerns. Based on our experience, we highly recommend United Airlines.
Our return trip was sad but smooth. We were glad to get back to San Francisco but part of our hearts will stay in Paris.