MS in the Mountains

Posted On April 6, 2024

Safely navigating multiple sclerosis & disability’s challenges while living outdoors.

Multiple Sclerosis.

It’s not something I talk or write about much, but after the sudden onset of symptoms, including numbness in my lower legs and feet, headaches, nausea and vomiting, a series of medical exams, an excruciating battery of blood tests, CAT scans, MRI’s, PET Scans, neurological exams and a spinal tap, I was finally diagnosed in late 2004 with a relapsing-remitting form of MS.

This was AFTER I’d already survived testicular cancer’s radiation and surgery. It was also close on the heels of a close call with a burst diverticula that demanded both a bowel resection and me walking around sporting a colostomy bag for three months. Basically, my body ran smack dab into a health care brick wall about the time I hit forty.

I was initially prescribed a treatment regimen consisting of every other day shots in my stomach of an Interferon drug called BETASERON. I was concurrently prescribed PAMELOR (Nortriptyline) as a preventative measure for MS depression symptomology (which I was not experiencing), and pain medications to counter the numerous Betaseron side effects, which I was.

Without getting too far into the medicinal weeds, all I can say about those medications is that for me, their side effects proved far more egregious than the conditions they were prescribed to treat.

Things came to a suddenly scary head one night that spring. In yet another severe coughing fit, I stumbled into the bathroom. The next thing I recall, somewhere from the depths of utter blackness, I heard my wife’s voice, faintly at first, then with increasing urgency, calling.

“Dick…Dick…Dick…DIIICK!!!“

She had found me in a heap on the bathroom floor, unresponsive and completely blacked out. I’m not sure where my life was headed in that moment, but I may well not have found my way back if it weren’t for my wife.

That was it for me. I decided right there on the spot. I went cold turkey immediately. I called my doctor’s office, told him what happened. Despite his cautionary protests and desire to wean and transition me to other drugs slowly, I refused and immediately simply stopped taking all those powerful drugs. As far as I was concerned, for me, anyways, prescribed medication side effects proved far worse than any of my MS symptoms. I decided to take my chances and manage MS life’s progressive symptomology, drug free, my way.

Just for the record, that decision is in no way, shape or form indicative of stance or statement on my part as anti-medical, medicine, science or pharmacological anything. I am fully vaccinated, believe in the power of science and medicine, and have their availability and use to thank in large part for my current alive status. These particular drugs simply did not work for me in that circumstance. I encourage everyone to make their own medical/medicinal decisions based on medical science, in close consultation with their own physicians, and what’s right for them. My MS Doc to this day still calls me his “anomaly”.

I am currently on several long-term prescriptions that I could not do without. I remain fully up-to date COVID vaccinated. I even at one point in my MS journey had to resort to a prescription steroid to combat a bout of severe double vision that caused me for two months to walk around wearing an eye patch. For any and all who might wonder, a pirate’s life is overrated. Severely.

It was at that point in my outdoor life that I realized I had to make changes. One event in particular drove that lesson home. Our family was camped, as we most summers are, up on Middle Saranac. My brother Ray and I decided to take our kids on a hike up Ampersand Mountain.

We had each hiked Ampersand many times before. Dad and I hunted that terrain regularly when I was a teen, back in a time when our station wagon would be the only one parked at the trailhead and we could hunt deer all day up and down those trails without encountering anyone (or any deer either, for that matter).

My lower legs and feet remained permanently numb. A feeling I would describe as that which one experiences when one’s foot falls asleep. I was also dealing with headaches, fatigue, and episodic vertigo. As we shepherded our enthusiastic kids up the trail, I became increasingly doubtful as to my ability to summit that hill.

In the end, I didn’t. I instead chose a comfortable trailside boulder short of the summit and sat resting while my kids with their cousins and Uncle Ray peaked the mountain. I realized at that point that my high peaks hiking days were behind me. Though I did a few years later manage a friend assisted trek into Lake Colden, Ampersand was the last mountain I ever attempted to climb.

I learned two important MS in the Mountains lessons that day:

“Know Your Limits”

Knowing one’s limits might sound easy. It’s not. I still to this day have to fight off the urge to do things in the woods that I shouldn’t. Things I remember doing, places I recall going, when I was whole, healthy and younger. I could safely summit Colden, Iroquois, Avalanche, Algonquin, even Mount Marcy in a day’s hike when I was strong, healthy and twenty-one years young. Every now and again I must work to quell memory’s voices. It would be dangerously foolhardy for me to attempt climbing those peaks now.

“Don’t Be That Guy”

Don’t be that guy trying to prove something he shouldn’t. Don’t be that guy who doesn’t come home that night when his wife was expecting him. Don’t be that guy folks read about in the paper. Don’t be that guy Rangers have to put their lives on the line going into remote regions to rescue. Make smart adjustments. Stay within. Don’t be that guy. Know your limits.

I made several other adjustments that first outdoor summer with MS. I began adjusting my schedule, allotting myself more time to get places, learning to simply relax and enjoy life, allowing more time for naps.

Despite my lower leg weakness, my arms, upper body and core remained strong. Along with weakness and numbness, my feet always felt like they were on fire. I began spending a lot of time barefoot. Instead of hiking, I spent more time paddling my canoe. Gathering & splitting wood for the fire remained one of my favorite activities. I became the “camp chef”. I redoubled time spent manning my fishing rod.

For some reason, probably due to cool water temps and weight displacement, I found my legs felt more comfortable submerged. I remained a strong swimmer. I began spending a great deal of time in the water.

These adjustments and experiences taught me two more important MS Mountain lessons:

“Pace Yourself”

“Focus on the “Can”, not the “Can’t.”

Then, in 2008 and 2009, cancer’s lightning struck again, twice. Once the dust settled, suddenly tongueless and completely tube fed, in addition to MS issues, I faced an entirely new set of outdoor life disability challenges.

Severe speech impairment, breathing and swallowing issues, a cumbersome tube fed feeding system, a prescription diet, serious hydration concerns, combined with my existing MS lower extremity numbness, mobility, fatigue, vertigo, varied and sometimes wild vision and sensory issues, could have easily cause me to retire to an indoor reclining chair, but I didn’t. I instead re-plotted my routes as I slowly adjusted to disabled life’s new reality, modified my camp packing list, recalibrated outdoor plans, and integrated several more newly learned lessons:

Have in place identified safety resources & outlets.

(For me, one of my primaries is my brother Ray, who lives close by my favorite spots, knows them well and can respond quickly if needed on land or by boat, especially when a lakeside duck dinner is the menu.)

If going afield alone, stick to familiar terrain.

Let folks know your planned itinerary and stick to it.

Be aware of your surroundings, where you do and don’t have cell phone service, & check in regularly.

***Many places in the mountains DO NOT have cell service!!!***

Adjust your packing list to carry at least an extra 24 hours’ worth of food & prescription meds, just in case.

Pace yourself in a manner which allows you to stay well rested & hydrated.

These last two are especially important for folks with special nutritional and medication requirements that cannot readily be met through conventional means once afield.

One key experience which helped lay the foundation for life’s newfound route forward was my 2011 return trip with my son into Colden.

RJ and I were accompanied by my good friend Emelio. We staged the night before at my brother Ray’s Saranac Lake house. While we never achieved my ultimate goal of RJ and I casting our trout lines into Livingston Pond, we met several intermediate goals short of that which still let us define the day’s trek as success.

I learned several important outdoor disability management lessons from this trip:

Carefully map out planned itineraries & routes.

Surround yourself with a reliable support system.

Manage time wisely.

Know when it’s time to call it quits & go home.

Despite the numerous challenges presented by multiple sclerosis and tube fed cancer survivorship, I am still able to safely enjoy the mountain home I grew up in. I still canoe. I still camp. I still hunt, swim and fish. I simply manage life outdoors differently now, within my own limits.

Which leads me to the final two messages I’d like to share about managing multiple sclerosis and disability in the mountains:

“Live In the Day You Are In”

&

“Stay Strong”

**********

Until Our Trails Cross Again:

ADKO