The Ultimate Challenge: Focus on Ability, Not Disability

Climb for the Cause: MS on Denali 2002
How It All Began
Mountain climbing is a sport that only a few have the daring and physical prowess to even consider. For those who feel the irresistible urge to tempt the fates and ascend to dizzying heights, mountain climbing is a thrill unlike any other, constantly pushing a person to his or her absolute physical, emotional, and mental limits.

Given the substantial risks and extreme hardships associated with mountain climbing, one might assume that only those in peak physical condition and perfect health would attempt a full-scale trek over glaciers and up the side of one of these immense land formations. So why would one adventurous individual, who has been living with MS for more than seven years, decide to gather a group of others with MS and climb, without a guide, to the highest peak in North America?

This question can only be answered by Eric Simons, the “adventurous individual” who led this group of seven along their climb of Denali, also known as Mt. McKinley, in Alaska. Eric first thought of Denali in 1999 after climbing Aconcagua, a 22,841-foot mountain in Argentina.

Eric explains, “I got the idea that a group of people with MS climbing Denali without guides or other able-bodied support would send a powerful message to the MS and chronically-ill communities.”

Eric is a veteran climber who first began rock climbing when he was 15. Now 47, Eric had to shift his passion from rock and ice climbing to mountaineering after being diagnosed with MS in 1995. Rock and ice climbing differ from mountaineering (mountain climbing). The former requires skillful and highly technical moves to scale the side of vertical surfaces of rock or ice. The latter is more a test of endurance, often over less steep terrain (although skill and knowledge are still needed to handle technical portions).

The Denali climb, scheduled for May 16 through June 8, had been named, “Climb for the Cause: MS on Denali 2002.” Eric also half-jokingly dubbed the climb, “No Denial, Yes Denali.”

At 20,310 feet, Denali is the highest mountain in North America. Climbers of Denali must make their way across massive glaciers, through heavy snow, and commonly endure brutal temperatures of 40 degrees below zero. While Eric and his co-climbers were looking forward to the personal challenges and joys experienced on such a climb, they were more concerned that this event would convey some very important messages.

Important Messages
“We want the MS community and others to realize that we all need to focus on ability versus disability,” states Eric. “Too many people with MS or other chronic diseases spend their time grieving over what they can no longer do – rather than focusing on what they can do. Once the grieving stops, a person opens up a world of greater possibilities.”

The second message is regarding medications used to treat MS. The group wants the public to know that effective drugs are available and most people with MS should be using one of these drugs. They want people to understand that taking one of the approved medications may reduce the development of disability.

For this reason, Eric contacted the drug companies to help find other climbers with MS who are taking different medications. Eric takes Betaseron®, and he found other group members who are taking Avonex® and Copaxone®. In addition to these three drugs, Novantrone® and Rebif® are also available for the treatment of MS.

The third message is about raising awareness of the Consortium of MS Centers (CMSC). Organized under the direction of neurologists, the CMSC works to promote MS research, share information, assist with the delivery of healthcare for individuals with MS, and partner with other organizations to accomplish these goals.

Team Members
Eric Simons, 47, is married, has three sons, and lives in Boulder, Colorado. He has been a lawyer, environmental consultant, oil executive, and is now a motivational speaker for the MS community. A climber for 32 years, Eric was diagnosed with MSseven years ago.

Clay Roscoe, 32, is originally from Montana and just graduated this past May from medical school in Philadelphia. Following graduation, Clay and his wife moved to their new home in Boise, Idaho. He learned to climb following his diagnosis with MS in 1990, and went on to become a mountaineering guide in South America. He has extensive climbing experience.

Wendy Booker, 47, is the only woman on the climb. Wendy works as an interior decorator, aerobics instructor, and motivational speaker. Married with three sons, Wendy lives near Boston and began running marathons after she was diagnosed with MS a few years ago. She began climbing and training for Denali within the past year – practicing with a heavy backpack filled with progressively heavier loads of weights and birdseed.

“After a year of solid training,” Wendy stated before the climb, “I’m anxious to put all my lessons to work. I really want to show what people living with MS are capable of doing and that a diagnosis of MS doesn’t mean you can’t live your dreams. I took on running the Boston Marathon after I was diagnosed just to see how hard I could push back at my MS. I have been given the opportunity of a lifetime to climb Denali with five other people all living with MS, and I am truly honored to be the sole woman climber.”

Sean Clifford, who works at a ski resort, is from Vail, Colorado. The single 37-year-old was diagnosed in 1999. Prior to that time, Sean was a tri-athlete, competitive soccer player, skier, snowboarder, snowshoer, and rock climber. He has climbed 37 peaks over 14,000 feet in Colorado during the past two years.

Ramon Sepulveda, 48, is from Austin, Texas and shares a home with four generations of his family. He was diagnosed in 1998 and is the only grandfather on the climb. He works as a water quality technician, and although he has no climbing experience, he is an avid camper and has trained hard for this climb during the past year.

Jim Dokoozian is also 48 and was diagnosed in 1995. He lives with his wife and children in Anchorage, Alaska, and works as an engineer overseeing two construction companies. Jim is an experienced climber and actually used the same route to climb Denali in 1977. Jim’s wife was with the group in Alaska just prior to their climb, and called in to MSAA to report how excited everyone was while preparing for the climb.

Mark Savage is the only member of the group who does not have MS. This 30-year-old is from Sydney, Australia and is an avid mountaineer. He has partnered with Clay on numerous climbs in the past.

Antonia Fowler is an experienced climber with MS who was originally going to join the group, but decided to assist with the climb in other ways. She flew into base camp with the team and stayed for several days, cooking and providing support. She was joined by Vickie Dodge-Pamplin, who runs the new MS clinic in Anchorage, and helped to “spoil the group rotten” with special meals and events while they prepared for their climb.

Eric, Ramon, and Sean are all going on the climb with financial help from Berlex®, makers of Betaseron®. Wendy, Clay, and Jim take Copaxone®, and its makers, Teva Neuroscience® paid their expenses along with Mark’s. Antonia takes Avonex®. Proceeds from the “MS Climb for the Cause” will benefit the CMSC and the Foundation of the CMSC.

Climbing Denali
The climb was set to begin at 7,200 feet, where Denali’s base camp is located. The group would follow a standard route up the mountain. The average time to complete the climb on this route is 17 days, but Eric estimated 21 days for the group to allow for additional rest.

“The key to this climb is rest,” Eric stated prior to the climb. “Recovery time is essential. Once we set up camp, everyone will need to rest, eat, and drink, to regain strength for the next day.”

Rest and recovery time was especially important because not only do these individuals have MS, but they would also be carrying their portion of the food, fuel, supplies, and equipment. At the onset of the climb, each person would have 50 to 60 pounds on his or her back, while pulling 50 to 70 pounds on a sled.

 

During the three weeks or more that the climbers planned to be on the mountain, they would need to carry:

“Climbing a mountain can be very overwhelming,” Eric pointed out. “Some people start to climb and ‘freak out’ over the size of the mountain. This type of climbing must be compartmentalized – or broken down – day-by-day. Climbers must view each day’s climb as the work they need to do to get from point A to point B.”

The distance to be covered each day was determined in advance. If the ground had very little incline, the group would carry their backpacks and pull their sleds to the destination point where they would set up camp at the end of the day.

If the incline was at all steep, the climbers would have to “ferry load” their things to the next camping location. This means that the group would take half of their supplies up to the destination, dig a hole in the snow, bury the supplies, mark it with a stick, and hike back down to get the other half of their supplies. Whenever climbers needed to ferry load their supplies, they would have to make two trips up the same section.

Climbing Glaciers
From the base camp at 7,200 feet to 14,000 feet, the group needed to travel across glaciers that have formed down the sides of the mountain. Walking along the glaciers is usually not steep, although climbers without experience may think an incline is much steeper than it actually is.

These glaciers often develop deep cracks, know as crevasses, that can be a few inches to several feet wide. Sometimes these gaps may be covered with a thin layer of snow, and a climber may plunge into a crevasse if he or she happens to step on such a spot. This is why the group members needed to be tied to one another at all times.

Fifty feet of rope would separate each climber and the rope had to be kept taut. Should one climber fall, the others would immediately feel the pull and drop to the ground, sticking their ice axes into the ice. This creates an anchor, preventing the climber from falling any deeper into the crevasse. Crevasse rescue techniques were practiced in advance and special equipment would be used should someone have a fall.

Although the average high temperature at the base camp is 15 degrees Fahrenheit, and the high at the top can be a balmy 20 degrees below, climbers needed to be prepared for bitterly cold temperatures (possibly 40 below zero) with high winds, which could reach 100 miles-per-hour. Each person needed to bring several pieces of warm clothing, including huge down parkas with big hoods and a flap of fabric that goes over the face. For the climbers with heat-sensitive MS, the cold temperatures could be a welcomed change to climbing mountains in tropical areas.

Camping
At the end of each day’s climb, the group would set up camp. Metal shovels would be used to create a flat area for the tents. If the winds were high, a snow wall would be needed to protect the campsite. To build a snow wall, snow saws are used to cut out
rectangular blocks of snow, and these are piled like cinder blocks to form a wall – similar to the side of an igloo. The wall must be as high as the tents to protect the camp. More snow is collected and added to the wall to fill in any openings.

At this time of year, approximately 60 to 80 climbers will have already climbed the mountain, and most will have taken the same route. They build camps also, and these are often ready to be used by the next group – saving them a great deal of time and energy.

The climbers were to share three tents for sleeping, and in fair weather, a fourth tent could be set up as a “cook tent.” This tent is used for cooking and eating meals, as well as socializing.

When camping on a glacier, the sun on a fair day can often warm the tents, sometimes to a steamy 80 degrees. Combined with body heat, down sleeping bags designed to retain heat, and sometimes using the stove in the tent, climbers are given a much-needed reprieve from the cold. And no one has to worry about the light; at this time of year in Alaska, the sun shines nearly 24 hours a day.

Food and Water
Food and water are big concerns while mountain climbing. The higher in altitude a climber goes, the less appetite he or she has, while burning a higher number of calories. Climbers at this altitude need 5,000 calories daily and they must bring foods that are very high in fat, interesting to eat, and easy to prepare.

Everyone was to bring a supply of food and the menu would be rotated. Planned breakfast choices included oatmeal, Cream of Wheat, powdered eggs, and pancakes. Common choices for lunch would be slices of salami, meat jerky, cheese, bagel, high-calorie/high-protein energy bars, and a pouch of nuts and chocolate to snack on while hiking.

For dinner below 14,000 feet, the people in each tent were to bring different flavors of fast-cooking pasta mix (Pasta-Roni) and canned meat. The group also planned to bring nine pounds of butter – which is a secret weapon for adding fat and calories when climbing.

Dinner above 14,000 feet must be very quick. Life becomes more difficult at this altitude. All dinners at this point must come freeze-dried in a pouch, and the meal is prepared by adding boiling water.

Climbers at this altitude must drink four quarts of water each day. Of course, this water comes from the snow, and climbers needed to be prepared to melt the snow and purify the water.

The fuel to be carried by the climbers would be used for their stoves, and these would most often be used to melt snow for water. The group planned to bring 14 gallons of fuel, enough for 30 days. On sunny days, climbers may stuff snow into large, black, plastic trash bags. The sun could then heat the bags and melt the snow inside.

Given the fact that many climbers will have already hiked and camped along the same route, no one can be sure if the snow is “pure.” Some planned to boil their drinking water, while others would use purification tablets to make sure their water was not contaminated.

Bathing and Bathrooms
In general, most people don’t bathe during this type of a climb in this type of weather. This can be dangerous if someone is out on a mountain for several months (and the uric acid from the sweat can build and become poisonous), but for a three-to-four week climb, the only ones to suffer may be those with whom the tent is shared. When the weather hits 20 degrees, however, some could be tempted to wash themselves in the snow.

Bathroom duties are taken care of with little privacy. The latrines were simply holes in the snow (with a biodegradable plastic bag) under the “expansive Alaskan skies.” On this trip to Denali, one group member brought a plastic donut, while another complained about the need for such a luxury item.

Above 14,000 Feet
As mentioned, things change at 14,000 feet on Denali. The glaciers covering the mountain have ended by this point and climbers are now on the portion of the mountain covered in snow. Certain areas of the climb may be steeper, and the thin air can be especially fatiguing. The climbers planned to lighten their load from here and only carry their backpacks until they reach the summit and return again to this point.

Of the 1,200 people who climb Denali each year, about 200 of them are led by guides. “Fixed ropes” are set up early by guides for the upcoming climbing season. These are needed for a more dangerous portion of the climb from 14,200 to 16,200 feet.
The ropes are strung along poles that are hammered into the mountain, following the route to the summit. These fixed ropes are similar to having a banister along the route, and climbers attach a rope around their waist to the fixed rope with an “ascender.” This is like a cog with spikes that slides and is pushed along the rope upward, but locks into position if the movement starts to go backward.

In this higher elevation beyond the glaciers, crevasses are not as much of a problem, depending on the exact location. The new danger along these giant slopes of snow is the risk of avalanche. These are less common along the middle route that the group was taking – versus the side slopes, which are more prone to avalanches.

Safety
Safety is a top priority. “Most accidents happen when people are either inexperienced or overly confident,” explained Eric. He and the others had been preparing for this trip for up to three years, and their planning addressed most potential problems that could occur.

The group would bring two satellite phones and report back daily. They would also be in radio contact with the rangers. Updates of the group’s progress would appear daily on various MS websites. The group would have two video cameras with them as well.

In the event of a medical problem, medical facilities are located at the base camp and in a tent at 14,200 feet. These are staffed by National Park Service personnel and volunteers. The group also planned to bring along oral prednisone, should anyone experience a flare-up of MS symptoms.

In the unlikely event that someone were to experience some type of severe problem and was unable to continue, emergency plans were in place. First, the rangers may be contacted by radio at any time to send people to help. Second, if the group needed to bring a person down the mountain, they can do so by staying connected with ropes and sliding someone down in a make-shift toboggan, with one person in front to pull, and two people behind to brake. And third, in a real emergency, a helicopter may retrieve someone from almost any part of the mountain.

How the Trip Went
The group’s journey began with clear, sunny skies, coupled with unusually warm temperatures. A bush pilot flew the group to Denali, and the scenery according to Eric was “magnificent.” The plane took them by tall peaks, big valleys, and enormous glaciers – that all seemed so close, Eric thought he could almost reach out and touch the rock walls.

After arriving at Denali and beginning their climb over the glacier-covered portion of the mountain, the temperatures were in the 50s during the day and around zero at night. But the unseasonably warm weather actually made the climb more difficult. As the frozen snow softened, the heavy sleds sunk into the snow instead of sliding across the top. The sleds became like anchors as they hit blocks of snow and required much greater strength to pull them along. The climbers had to trudge along, and the altitude made everything even more challenging.

The warm weather also melted existing snow walls and floors at vacated campsites, so at the end of each day, two hours were needed to prepare the camp for their tents. Additionally, the cook tent became too much trouble, so that idea was scratched. The breakfast eggs and pancakes never worked out either, so the group ate a lot of oatmeal.

Despite the hard work and setbacks, Eric reported from the mountain on Monday, May 20, that this was the “most gorgeous place” he had ever seen. Now, just a few days into the actual climb, Eric said, “this is a place that sets your priorities.” He mentioned how much he loves his family, and began to think about how nice it would be at home.

By Tuesday, Jim and Ramon were headed back to base camp. Blisters and exhaustion were to blame. Mark and Clay, the youngest and perhaps most energetic members of the group, accompanied them back to the base camp and returned the next day to rejoin the group.

The group stayed tied to one another with ropes as they climbed, and fortunately no one had a major fall into a crevasse. Only Eric stepped on thin snow and his leg slipped into a narrow crevasse. He was able to pull himself out without any assistance. Additionally, the glaciers were steeper at times than expected. Some spots were actually at a 55-degree incline.

Along the way they saw many other climbers, some of whom recognized the group. Eric called Denali a “veritable city at 11,000 feet” with all the climbers, and they felt like celebrities when others, who had heard about the MS climb, knew who they were.
With each report, Eric observed that everyone was feeling tired but amazed at what they were doing. He would often look at the summit and see plumes of snow blowing around – which meant high winds. He also saw helicopters hovering above, making rescues at the top of the mountain.

Eric’s plan was to go to 14,000 feet and then see how the group was doing and how the weather was – the mountain would dictate their course at that time. “Our judgment needs to be impeccable,” Eric reported. “We need to be smart about it to survive up here.”

On Tuesday, May 28 at 14,000 feet, Eric and Sean made the difficult decision to go back down the mountain. Eric was having back problems from dragging the sled and was also experiencing some altitude sickness. He could see storms were moving in and didn’t want to possibly be stuck for a week waiting for bad weather to pass. Sean was having weakness in one leg, and didn’t want to take a risk in the steeper terrain above 14,200 feet.

Wendy, Clay, and Mark continued in their pursuit of the summit, but a big storm came in and the dream of making it to the top had to be abandoned. But members of the team did reach 17,000 feet, and this was quite an accomplishment. Few groups made it to the summit during those weeks, and the fact that the weather, and not MS, kept them from reaching the top was the biggest accomplishment of all.

Eric thought the climb was a metaphor for MS. “The climb strips everything away, and you are left with raw essentials. It forces you to go back to the basics – just like when you are hit with MS. You go back to the basic requirements of daily living, and then figure out what you can do. Moving along the glaciers, everything is constantly changing and full of hidden hazards. You have to be prepared for anything; just like with MS.”

Throughout the climb Eric says that he and the others felt a duality of sheer joy contrasted against the difficulty of living on a mountain. “It was extremely hard work, and the hardest climb I have ever done in terms of endurance,” states Eric. “Yet I was always completely stunned by the beauty. It is such a joy to be there – the mountain range is incredibly spectacular. It was quite an experience, but I’m glad to be able to sit in my living room and talk about it.”

Eric and the others who took part in the Denali climb have much to feel good about: they accepted a great challenge; trained and made plans to accomplish their goals; and then went on to pursue their dream. With the help of the pharmaceutical companies and the CMSC, their climb received much publicity, and their goals of sending messages to the public about MS and its treatments were also achieved. Congratulations to the climbers – they made a valuable contribution to the MS community, and their efforts will be remembered for many years to come.