Kathy Simpson shares how a woman can advocate for herself when diagnosed with multiple sclerosis.
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Advocacy is very important. You cannot, in this world today, solve health problems without advocating for yourself unless you’re incredibly lucky or you have a spouse that’s, you know, a very cutting-edge doctor. You need to be in charge of your own health. You have to go out there and collect the data and work with your doctors as a team. If you turn over your health to your doctors, which I did just a tiny bit in the very beginning, quite frankly, it didn’t last that long because I got responses like, "Well, you know, you may have a good five years before you need to get a wheelchair;" those kinds of encouraging sorts of statements and that is obviously not something any of us want to hear. So, what you need to do is, you need to sit down and approach it as you would approach any other project, whether you are doing your taxes, or you are remodeling your home, or anything that you want to get accomplished, you need to sit down and think through, "Okay, who do I need to get on my team? What doctors do I need to team up with?" Make sure that they have the same perspective that you do, the same approach, because if you go to a neurologist, and this is generally what happens, and to put yourself in their hands, you’ll generally end up with an injectable drug that is supposed to affect the long-term progression of the disease, but it doesn’t have any effect on your symptoms whatsoever. So basically, maybe it’s going to help you, long-term studies are not available yet so we’re not really sure, but you’ll feel pretty crummy on a day-to-day basis and life really isn’t worth living for most of us with MS. So, you need to take it past that step. You need to say, “What do I have to do to be, like the concept, ‘symptom free’?” I have no symptoms. Have not had one symptom in four years. If I start feeling a little something coming on, if my hand gets numb, if I start feeling a little tired, I simply go back and I go through a checklist. It’s like getting into the cockpit of a plane before you take off. You check all the valves and all the, you know, systems and you make sure, you kind of go back and you say, “You know, what is going on that I might be getting this symptom?”