State of Mind: Living with Multiple Sclerosis

State of Mind: Living with Multiple Sclerosis



I grew up on the Sacandaga Lake in the Southern Adirondacks in upstate NY. As a young man, I was interested in outdoor pursuits and after seeing Biathlon at the 1980 Olympics in Lake Placid NY, I became addicted to the sport. Over the next 25 years I dedicated my life to pursuing the sport, a Winter Olympic event that combines cross-country skiing and shooting. With the support of my family, the US Biathlon Association, the US Army and the NY Army National Guard, I was able to enjoy a long career of international competition from 1985-2002. During that period I had the opportunity to represent the US in 3 Winter Olympic Games in 88, 92 and 94.

symtomsI started noticing MS symptoms in 2000 with weakness on my left side and lack of coordination in races that lasted more than an hour and when I was tired. I retired from competition in 2002 and was sent to Iraq for a year in late 2004 as the Commander of the 29th Personnel Services Detachment. While in Iraq I noted an increase in my weakness and I rationalized at the time that I was just getting out of shape and that daily temperatures in the 120s were the culprits.

After I returned home, I awoke one morning with eye pain and blurriness. Thinking I had conjunctivitis I went to an eye doctor where he determined my eyes were fine. After a brief neurological test, I was sent in for an MRI and 4 days later I was given the diagnosis of MS.

Since that time, I have noticed a marked decrease in my ability to perform athletically, even though my expectations are no longer at the level they once were. Any attempt I make at physical activity results in inability to perform, foot drop, weakness on my left side and blurry vision. Over the years I have tried many different ways to combat my symptoms including: acupuncture, cooling vests, Ampyra, cold showers, swimming and wearing less in the winter to try to stay cold.

kurt-quoteNone of these things helped me much; the most effective was immersion in water until my core temperature lowered, making me feel cold on a warm day. This makes me feel better for low level every day activities but does not allow me to do aerobic activities for more than 10 minutes without symptoms reappearing. I have been able to perform a moderate amount of strength training when well rested and cool and have been able to maintain my fitness that way.

Since being diagnosed I have been on the disease modifying drug Rebif. I only suffer occasional side effects. Due to my tolerance of this drug, I have not attempted any others since they all do basically the same thing. I have recently tried the drug Amprya in hopes that it would enable me to run effectively, but it has had little beneficial effect even though I know some people are getting positive results.

When my friend Magali Haas explained to me what her new company Orion Bionetworks was trying to do, I was immediately intrigued. MS has been a disease that has eluded all attempts to find a cure and even a cause (though great progress has been made on disease progression). Orion is bringing together some of the greatest minds in the cellular biology and the computer fields to attempt to unravel the mysteries of MS and ultimately find a cure. Their use of databases to extract information from thousands of patients suffering from MS is truly taking the fight to a new battleground that hopefully will soon lead to a cure.