Fred

Fred first noticed something felt off in his late 40s when he had tingling in his arms after driving a long distance and numbness in his hands while coaching volleyball. After a visual acuity test, his doctor told Fred he probably had MS. Fred and his wife decided that that point to “wait and see” what would happen. A year later, Fred had a wandering left eye. As previously expected, an MRI confirmed he had MS. Fred started injections of the medication Avonex. He wasn’t sure about giving himself shots and the drug cost “$1,600 a month” which felt like “a lot for something” that was bugging his “hands a little bit.” Fred, a veteran, tried to get the Army to cover his MS treatment however he has been unable to get coverage. “If the MS got real bad,” Fred feels he may need to take the “unfortunate” step of getting a divorce from his wife to be able to get his medical care covered.  

Soon after his diagnosis, Fred joined a clinical trial for Fingolimod pills. He was taken out of the trial because tests showed his “liver doesn’t like (Fingolamid).” Fred’s doctors introduced him to a Tecfidera trial.  He decided to participate so he didn’t need to do shots. When the study groups were assigned, “of course I get into one with the shot.” After two years of Tecfidera shots, Fred was switched to Copaxone and then signed up for an extended Tecfidera trial. In all, Fred “got basically free drugs for 10 years.” Though the hour and a half drive to get to appointments was “a little tiring”, Fred felt good about how all the people involved in the trial tried to get to know him and “make it nice as possible.” After the trial ended, Fred asked his doctor if he could “just stay off the drug” as he “didn’t feel any different” when not taking it. Fred currently is not taking any medications for his MS and his symptoms have “just stayed the same.”

Fred has “always had a light version of MS.” The same slight tingling and numbing feeling in his hands has been a constant for the last 15 years no matter if Fred is “hauling cement blocks all day or doing nothing.” In hot weather especially, Fred makes sure he pays attention to any tiredness he feels so he can stop to “take it easy.” Fred feels he’s “been really lucky” that MS hasn’t affected his strength and he doesn’t experience pain. He is the oldest of 10 kids, and is part of “a great family” who checks in on how he is doing. Fred feels generally his family doesn’t think MS is “really affecting” him because he doesn’t “show anything.”

Fred is a religious person with an optimistic attitude. He tries to “look at everything half full more than half empty.” Fred enjoys travel with his family and is “a big puzzle guy” who always remembers “it's not the things you say no to that shape your life. It’s the things you say yes to.”

For Fred, having MS has “kept some things in perspective” reminding him how rapidly circumstances can change, making him “more thankful” of what he has in his life. In life and with his MS, Fred believes that you “just take it, relax, everything will roll off.”