The day before, a professional triathlete gave me this advice: “You must keep moving. You cannot stop.”
I had just completed 11.9 miles of the Pikes Peak Ascent (PPA), a half marathon that ranges from an elevation of 6,300 feet in Manitou Springs, CO to the 14,115 feet summit of Pikes Peak, and reached the Cirque Aid Station. The freezing point temperature I had expected and planned for by this altitude was instead about 70 Fahrenheit. I had been ahead of schedule, but now I risked exceeding the maximum allowed time of 6.5 hours. And I really needed to stop.
I have lived with relapsing-remitting MS for 22 years. During this time, I have utilized most MS disease modifying therapies, intravenous steroids, chemotherapy, electronic brain stimulation, functional electronic stimulation (FES) and many other medical interventions. I have experienced periods of significant physical disability, one of which should have ended with a wheelchair permanently entering my life. I have been able to enter periods of remission with most of my functions restored, though I live with multiple persistent symptoms.
One of those is sensitivity to heat. At high temperature, with each minute my energy is drained, tripping becomes frequent, balance is lost, confusion sets in and after an hour, I am exhausted.
The PPA occurs in the middle of August. As you ascend, temperatures typically get cooler. If the event started at a high temperature, then I knew the first part of the race would be a challenge. To mitigate the scenario of a higher-temperature start, I planned to use a cooling vest and asked friends who live in the area to volunteer for aid stations to provide refreshed cooling vest ice packs.
The forecast called for high temperature in the days leading up to PPA, but temperatures at the summit at my expected arrival time were close to freezing.
My plan was to move as quickly as I could at the beginning of the race, putting myself in position to move faster once the colder temperature at higher altitude existed. My personal target time was between 4 and 5 hours.
At 7:20 a.m., August 19, the race began. I could not believe I was even starting this event, 22 years post‑diagnosis. Lisa, my wife, met me at the 7.6 mile aid station, and I dropped off my assumed-no-longer-needed cooling vest. An error given what was ahead.
By the next aid station, the absence of shade, lack of cooling vest and unexpectedly rising temperatures had reduced my pace. By the Cirque Aid Station, my margin of available time had reduced to almost zero. Tempted to rest before the last push to the summit, the advice the previous day came back to me: “You must keep moving. You cannot stop.”
I thought about all the preparation for this moment. I also thought about the friends who had willingly come out this day to help. I could not let them down. I had to keep going.
After Cirque, a fellow participant was following my pace. On multiple occasions, I almost fell – each time he prevented the fall. I crossed the finish line at 6 hours and 25 minutes. After 7,800 feet of ascent, 13.1 miles and unexpectedly warm weather, I finished with only 5 minutes to spare. And I finished wearing a green NMSS “Living with MS” shirt, a metaphorical single finger salute to a disease which has taken so much from so many of us.
Without the help of my friends or if I had ignored advice, I would have been late that day. My fellow MSers, follow the advice given to me in your daily life,“You must keep moving. You cannot stop.” MS will claim its toll. But if we stop moving, MS will probably take functions and abilities from us at a faster rate. Life remains full of possibilities.
I have many people to thank for making this possible. Beth for encouraging me to re-discover my love of distance running. Tim and Bob for providing a way for me to play the beautiful game and adding rules to protect me. Melanie for inspiring me to do the PPA. Amy, Diana, David, Delaine, Graeme and Tim for waking as early as 4am that day to volunteer at aid stations. Dr. Calabresi for always giving me the advice of a brother, and keeping me from secondary progressive status. Brianna and Kyle for the constant healing force of life you have provided since your birth. And to Lisa, you have never wavered when many would.
Breaking the cycle of exclusion: Embracing cultural competence in physical activity research for people with MS
Cultural competence in research involves considering the culture and diversity of a population.
An MS diagnosis in college didn’t stop Téa from cheering for the NFL.