b"4. What surprised you the most aboutbelieve it or not, I was dipped in very warm 4. What surprised you the most about participating in a clinical trial?water. Wild, huh? Back then, MS was like a participating in a clinical trial?I was most surprised at the time it takesdeath sentence. Sent home to either come for a trial medication to become an approvedout of that rst exacerbation or go downhill therapy. I was also surprised at the costsfrom there. And I live in the mountains, rural, involved in a clinical trial. I nd it unfortunateseverely underserved southwest Virginia. So, that many (most) trials only allow participantstrials didnt come here early like other areas between the ages of 18 to 55 years. MS continueswithspecialist,clinics,etc.Whenwordof beyond 55 years and there is a growingtreatment trials came along it was an honor population of people diagnosed after 55 yearsto be able to participate, to know I might help of age. RRMS and PPMS clinical trials are notnot only myself but also others in the future. placebo studies. You will not be left withoutThere were noninterventional studies here as medication coverage while on a clinical trial.well. The UVA did one about using handheld 5. Would you participate in futuredeviceslike a phone-type device in which you 5. Would you participate in futureentered your schedule, appointments, etc., clinical trials? clinical trials? and it would provide you reminders. Keep in Yes. mind that 40 years ago, many of the severe Suzanne OConnell symptoms were overlooked. I had cognitive Suzanne OConnellI reside in a tiny home inchallenges so that trial was a great idea.2. Were there any concerns or challenges the mountains of southwest2. Were there any concerns or challenges you faced in your clinical trial journey?Virginia and served in the U.S.you faced in your clinical trial journey? Navy. After being diagnosedI participated in several. I think my worst with MS 45 years ago, I wasconcern was maybe growing a body part I forced to retire on disabilitydidnt need or want. Its sounds like I am trying because of debilitating fatigueto be cutesy or funny, but seriously, if you and cognitive challenges. With more than 30read the fact sheets, you could be terried at years of volunteer experience in the MS community,side effects. If you looked at a 1950s encyclopedia I founded the MS Alliance of Virginia to addressor dictionary, the denition of MS was awful, so the lack of services in our rural area. We nowanything that might help was worth the chance. have six support groups. I vividly rememberI felt like I had nothing to lose, as a young the uncertainty I faced upon my diagnosis,mother of three children with one an infant at whichdrivesmypassionforprovidingathe time. Another trial was when oral meds came welcoming space for others in similar situationsout. I didnt want to miss the deadline and at our region's rst MS Center.didnt realize the consequences of what I did. 1. What motivated you to participateI was sick with an upper respiratory infection, 1. What motivated you to participatewasnt better yet, went on the drug before I in a clinical trial?in a clinical trial? healed, and then I couldnt get well. I didnt care I was diagnosed in the early 1980s whenabout any side effects such as losing hair, there was nothingno treatments, no therapies,nausea, or those things, I wanted something to not even an MRI. Diagnosis usually took years,stop MS progression. Unfortunately, I had to go and you were already told you were crazy, aoff that trial because I couldnt get infection-free, hypochondriac, or it was stress. Yeah, right.and it was in the contract that you should never You know when something isnt right withstart a DMT if you are sick. I tend to learn your body. I had a spinal tap procedure and,everything the hard way but never forget. 11 msfocusmagazine.org"