"GOING THE EXTRA MILE:
Travel Notes From an MS Caregiver's Diary"
by David H. Oberlander
Note from Editor: When David sent me the following "travel diary" for publication in LivingMS, he shared a bit of information with your Editor, that may help you to more fully understand the content of his diary. Martha has had primary progressive MS for twenty years. Husband and wife are both in their mid-60's. David retired from business, over five years ago, and is now his wife's primary caregiver. David wrote -- and submitted -- the following story, as Martha is unable to write, type, use their PC or hold a phone.
David shared their "traveling experience", because he knew that it would be familiar to many of you, who travel with challenging MS symptoms...or to be of encouragement to those of you who are afraid to try traveling. He and Martha encourage every person with MS to "go for it". As you will see, from reading his "diary", "making the effort" is extremely rewarding, an "emotionally uplifting" experience and special beyond words.
A needed change of scenery appeared in the distance as our flight gently turned on final approach to Reno, Nevada. Snow fields on the highest Sierra slopes at the end of July eased any lingering tensions and greatly boosted my sagging psyche.
Our three-week vacation would soon bring a welcome relief for Martha’s normal confines with MS (chronic progressive for over 20 years) and a much needed break for my daily duties with my wife's care giving and escape from the unrelenting record Texas heat wave of the Summer of 1998 with its daily highs over 100 degrees F.
Notes from my diary:
Day 1. July 30.
Our son, Andy, arrived at seven a.m. to drive us to airport. His older car had a broken air conditioner, so having use of our 1996 mini van wasn't too much sacrifice. Figured I'd be ready with bags packed, and doors, oven and automatic light-timers checked.
Miscalculated - rushed at last moment. Took longer to transfer Martha and load all our gear including: wheelchair, back rest and special foam-cell cushion. Forgot to activate garage door closer as we were leaving. Garage AND house open for several days before a concerned neighbor called Andy. Good thing - no one broke in.
At Dallas/Fort Worth Airport, they let me wheel Martha to our front-row seats - upgraded at last moment. Didn't need their aisle transporter but almost got stuck at tight turn near galley. Managed our usual transfer alone, while attendants held breath. Stowed folded wheelchair in the crew's closet after brief, but successful, debate. Flight left on-time and arrived Reno, Nevada, at noon.
Mistake. Chose wrong model of rental car. Took a mid-size sedan instead of a Dodge mini van offered at same rate. Was concerned about transferring Martha to van's higher seating. (At home with, similar model, I use a wooden platform next to van's front passenger side to elevate wheelchair for safer and easier transfers.) Of course, over the next two weeks sedan proved way too small with lousy knee space and we paid the price with extra strain - and discomfort for Martha.
Day 2. Lake Tahoe, Homewood, CA
At my brother's cabin at the 6,300-foot elevation awoke to chilly 37F (70 degrees cooler than the day before in Dallas.) Nice refreshing change! Fireplace going. Thankfully packed sweaters and turtlenecks. Later borrowed even heavier jackets from Jim for sitting on deck after sunset.
Day 3.
Constructed a suspicious looking 6-foot plywood ramp to cover rear deck steps. Certainly non-compliance with ADA but worked fine. Martha enjoyed outdoor bright sun and breezes whistling through the tall Douglas firs while I hiked a nearby gentle canyon trail.
Day 4.
Departed Lake Tahoe area and immediately got stuck in weekend traffic on the only road along scenic shore. Below us, on beautiful Emerald Bay -cruising speedboats and noisy jet-skis. What's this - Texas-like road rage at 5,000 feet? A bad, black SUV roars past on treacherous cutback, in no-passing zone. Arrived in Placerville via US 50, after miles of descending, twisting hairpin turns. Greeted with unexpected heat with temps in the high 90s.
Day 5. A Long Day's Drive
Destination: Mendocino and California’s North Coast on crowded I-80 through Sacramento valley and then the "101." Major slowdown through Santa Rosa. How come they don't build extra lanes in this busy stretch? Consulted map too late. Interstate-5 north of Sacramento and highway 20 appears more scenic and maybe cooler. We thought only Texas got this hot. Exited at Cloverdale and took route 128 - a pleasant curving blacktop over the forested coastal range. Cruised through peaceful Anderson Valley.
Note: next time stop at some of these small inviting vineyards and enjoy their wine-tasting rooms.
First hint of an important change: refreshing cool air flows through lowered car windows. In impressive Redwoods, we move quickly through brilliant streaks of sunlight and, just as quickly, into dark shadows crossing the highway. Emerged, from this grand forest drive, onto California 1, curling around numerous river inlets and small rocky coves. Strong surf crashes into angry foam on rock spires jutting from the picturesque bays. We are rewarded, splendidly, for this long day easily finding our attractive wheelchair-friendly cottage near the tiny hamlet of Little River.
Day 6.
Ended first day on the beautiful coast celebrating our 41st anniversary, with dinner at a charming inn on bay of the Albion River. Fortunately, I had checked out parking and access earlier and found they had only two handicapped parking spots, so we got there early. Regular parking required navigating steep steps. We parked, without a California handicap card. Inside, food and service was excellent. Narrowly missed injuring Martha, back at cottage. Bumped wheelchair, during exit transfer from damn car, and she slipped to ground. Yelled for help! Host came running, from adjacent cottage, to assist. Good thing they were home.
Day 7. Viewing Seals on the Rocks
Visited nearby Pt. Laguna and Mackerricher State Park to see the seals slumbering in the sun. Surprised to find a long accessible boardwalk, to enjoy the best viewing areas, about one-third of a mile from parking. Not as smooth as expected and not too great for a healing blood clot but no damage done! Had a picnic near shore. Gulls feasted on sandwich droppings.
Days 8 - 13.
Continued daily outings to scenic areas, with some quiet reading times. Martha enjoyed sunny, cool, bright garden, and I took short hikes in a redwood gulch nearby. Discovered more places for dining out, but parking and access is most difficult in quaint Mendocino. One restaurant, with splendid views - locally a favorite we presume - was upstairs above the sidewalk and totally inaccessible to us.
Days 14-15.
Retreated to the San Francisco Bay area and stayed overnight at a convenient motel near Oakland airport. Checked in and also said final "goodbye" to miserable rental car and paid penalty for additional day on contract. Kind attendant helped take our gear to Southwest baggage, for our short flight to Burbank.
Days 16-19.
Pleasant weekend with daughter and family in Thousand Oaks area and joyous, overdue reunion, with two exuberant young grandchildren.
Final - Day 20.
Crew at departure gate loaded Martha with special lift since jetways don't exist at Burbank Airport. On arrival at DFW greeted by son, our own van (thankfully) and another scorching Texas summer evening.
On our trip, we found people kind and eager to help. But, we also found too many public places lacking accessible accommodations: airport shuttle vans too high for wheelchair entry; hotel bathrooms too narrow; rental cars too small and unsuitable for our needed transfers; and café tables too low for wheelchair arms.
But, there were special, and attentive, folks like: the hotel doorman, in Burbank, who arranged a special ride to the airport; waiters who found trays to use as extended table leaves; flight attendants offering special assistance; and willing skycaps taking charge.
The travel taught important messages: if possible, get up and go; plan--CAREFULLY-- all details well in advance; endure the extra effort, focusing on the good changes of scenery and emotional and physical uplift. Our trip was worth the extra required effort and cost. I don't know if we can go as far and do this much later, but it was a blessing this time.
by David Oberlander
submitted to the magazine 9-24-98
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