I was diagnosed with two rare and serious neurological disorders in 2014. The first — chiari — causes the second. Basically my brain is too big for my skull — that’s CM. My brain’s protrusion into the spinal column impedes the flow of spinal fluid. That in turn caused a formation like a blister in my spinal cord, called a syrinx, or SM. And the latest interpretation of the experts? My spinal cord terminates an inch too high.
Headaches, neck / shoulder pain, and muscle weakness are three of my chronic issues Also I get dizzy and sometimes pass out. Not fun to add concussion to my problems. CM/SM causes weird symptoms. And accidents. Dropsies and oopsies.
Photophobia and other sensitivities mean no more front row seats at the rock concert.
And now hearing of this spinal cord shortage, it’s more understandable why I have sensory loss issues with my legs. To describe — after exercise, it’s like my top half is floating on clouds, not legs. I can still walk once I get going but I’m not real sure what is doing the walking.
Why fight to keep working a job? Why battle all of this to travel?Because I want to be defined by the things I can still do and not by what I can’t.
Bill and I journeyed many thousands of miles by car to seek the opinions of numerous specialists. But, most neurosurgeons could not offer any guarantee that a surgical treatment would improve my conditions enough to justify the risky brain surgery and subsequent recovery.
The neurosurgeon who wrote the CM/SM chapter in the neurosurgery textbooks… he urged me to prepare in case my condition ever worsens and requires surgery. He said, “start hiking and lose a few pounds.” This CM/SM treatment plan is called, “wait and see.”
Wait: Stay as fit possible because that would lead to a better post-surgical outcome
See: if ever my condition takes a wrong turn.
He also gave me a list of therapies to do and ordered me to wear an Aspen collar during bumpy activities like car and boat travel.
The prognosis is uncertain. Symptoms may progress, remain stable or — I WISH — maybe improve.
I attended a conference last summer (ASAP). One researcher spoke of a downside called, “The meat tenderizer effect.” Later, another doctor likened these effects to the concussion syndrome many football players suffer.
With a traveling poker dealer as my caregiver and life partner, staying home seems unfair. Given the uncertainty but potential for decline into worse pain or future paralysis, as well as not having age on our side, any chance I have to see more of the world seemed to be slipping away.
And so we began the 2021 journey … yet awaiting further MRI interpretations by a new specialist who believes the surgery will help.
I hate to admit, but with the rough start to our Outer Limits 2021 trip, my goal is to visit family and then all bets are off. Each journey for me has been harder than the last.
Why not do luxury hotels? We loved but hated hotels
Someone else cleans. Fresh towels and soaps. A pool and/or hot tub, fitness center sometimes.
But I am restricted not to lift more than a gallon of milk. Bill had to carry everything into and out of hotels.
CM/SM cause insomnia. Hotels were horrible. Wham bam doors, random noises at all hours. Inconsistent beds. Needing my own pillow and sometimes forgetting it, then having to buy another.
Feeling like we had to drive a long way to save money — but noticing that the longer I sit in a car, the harder it is to walk. And the longer the trip, the more other symptoms would rear up.
Years of NSAIDS that I can no longer take wrecked my gut. On a gluten free, low FODmap diet… out of many years of travel stays in hotels, only a couple of times could I eat the free breakfast.
An RV motorhome solves much of that. And many campgrounds now offer the pool, hot tub and fitness center for my therapies.
The quest for the safest ride
We rented a Class C. Within a day or two we knew that we love the RV lifestyle but the Class C was rougher to ride in than a car. Then we test drove a Class A motorhome.
Class A motorhome prices seemed out of reach. Luckily a used Newmar Kountry Star ticked most of our boxes (see our helpful checklist) and thanks to selling an investment property, we were able to drive it off the lot debt free.
And, BONUS! RVoyager included a stability system to enhance the already gentle ride. (But I will still wear my collar unless on a super smooth road.)
Driving the big rig came back quickly to Bill, who long ago drove fuel trucks at an airport. And it’s not too modern or fancy that he can’t do a lot of the caregiving for it, too.
RVoyager: that’s the why and how our motorhome adventure began in the Spring of 2019.