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For those who love to travel it is very difficult to adjust to the need to
think about giving it up. Unlike those who are victims of a sudden disaster
that prevents travel, those of us living with PD can come to terms with it
more gradually. We had gone the RV route for 40 years or so, until it became
too difficult for Neal. This was about the time he was diagnosed with PD in
1986. For several years after his diagnosis we still managed to take auto
trips all over the western US and Canada. Neal could still drive and get
about with little trouble until about three years ago.

In the last five years, I have been doing more and more of the driving as
Neal's PD advanced and his medications became less effective. But A couple
of years ago we both decided he should no longer drive at all. The main
reason for this decision was his realization that his PD was causing vision
problems. A second reason was dyskinesia. When he was well medicated he
drove in jerks as his muscles began to writhe. Now I drive and he is the
navigator. It is important, I think, that he feels that he can contribute
toward the trips we make by helping me keep track of traffic and navigation.

We no longer take the long trips we used to, but we just returned from a
four hundred mile trip to a family reunion in northern California. It wasn't
easy persuading Neal that he could manage it. He brought up a long list of
"what ifs" and "how will I" and "how will you manage to..."s.

This is how we do it: We drive a van that can accomodate a wheel chair, a
folding walker, a plastic urinal bottle, an exercise mat, special pillows,
drinking water and lots of medications in assorted pill containers. After
all this is loaded, we add the usual luggage plus a bag with essentials for
emergency in-motel room breakfasts. Most important of all, we carry a
cellular phone for emergency use. I get my exercise moving all this stuff
into motel rooms at night and back into the car the next day or so. The
wheel chair is along for him to sit in in the motel rooms, and to use when
he is frozen. Ordinarily, he uses a walker or a quad cane to stabilize
himself when walking.

We have to be fussy about motel rooms. Unfortunately, there are only a few
that understand the real needs of people with a disability. There may be a
parking space designated for the disabled, but the room that goes with it
usually has no special aides like grab bars in the shower. Too often the
room designated as for the handicapped will have but one bed. PWPs are so
restless and have so much trouble sleeping, a bed that is theirs alone is a
necessity no matter how fond they may be of their spouse. Getting out of bed
at night is difficult. At home, Neal has a trapeze over his bed to help him
pull himself up. It is a long and difficult process for him to turn over in
bed and even more so to sit up and get to his feet in the night. This is
much more difficult in a motel room. Getting from bed to bathroom requires
the walker, and the room must be big enough to accomodate this equipment. I
carry a minimum of two plug-in night lights for use in motel rooms. Neal
cannot see well in the dark, or in dim light. He also carries a small
flashlight that can be clipped to a pocket or waistband for hands free use.

Showers are another matter. In-tub showers are a horror. We rarely find tubs
or shower stalls with adequate grab bars. On occasion, when there is nothing
at all to hold on to, I have had to get into the tub with him and prop him
up while he hosed himself off. One memorable motel had a room for the
physically disabled that we really appreciated. The large stall shower had
no threshold. It was possible to take a walker or a wheelchair in and
transfer its rider onto a bench with relative ease. There were grab bars
everywhere, and both high and low shower heads. Nirvana! And one memorable
motel we happened upon some time ago, in Sedona, Arizona, had a higher than
normal toilet as well as grab bars everywhere. These thoughtful amenities
are rarely found when one is on the road. For serious travel, when there is
time to plan ahead, it may be possible to map out a route with suitable
facilities at each stop.

We made this last trip with just one major difficulty. Neal tries to time
his medications so he will be able to move when we stop for meals or at
roadside rests. We managed quite well, and he enjoyed the trip as much as I
did. None of the "What ifs" materialized. Our only emergency happened to me
when I found myself locked in at a gas station's rest room and had to yell
HELP! for several minutes before rescue arrived.

"Let's drive to Yellowstone after Labor Day", I said after we got home.
"Impossible", said he. Well, we shall see. One day at a time, one hour at a
time, do what is possible and enjoy it. We are very glad we travelled in the
years when it was easy, and we are glad to be able to do what we can now.
Getting out and seeing new places and revisiting old favorites can be good
therapy. Realistically, we probably will never return to Yellowstone, but we
will drive over to Cambria on the California coast where we know there is a
motel with a drive-in shower.

Martha