Sometimes I feel like a matriarch when I’m in the company of women with MS. Don’t get me wrong. I don’t mind that feeling. It’s enormously gratifying to almost hear a sigh of relief when people learn I’ve lived with MS for over 25 years, and have not only survived it, but lived a life of quality. I suppose they give themselves permission to believe that they, too, can enjoy a wonderful life. At least I hope that’s what they are thinking.
I work for a pharmaceutical company as a patient advocate. I telephone others who request to speak to someone with MS, and take the same medication as I do. I listen, share experiences and listen some more. The conversation usually begins slowly, and then I tell them how long I’ve had MS and been on the medication we are both on. The floodgates are opened and their words come pouring out. They feel more at ease with me. It’s fantastic.
Now that I’m in my fifties, there are new MS and non-MS issues I may have to deal with daily. Menopause, issues with cognition, relentless fatigue, loss of libido, empty nest syndrome, loneliness, caring for aging parents, will I have enough retirement money and wrinkles, wrinkles, wrinkles! The baby boomers seem to be the common target of marketers - and public television has picked up on this as well. Is the MS community also going to wrap itself around us?
I want to take a moment to acknowledge a wonderful and passionate woman I met online whose name is Jenni Prokopy. Jenni has fibromyalgia, anxieties and some other health issues. She started a fabulous website called Chronic Babe. This website is about empowering young women with a chronic illness to be at their best and live a quality life. I have joined several of their chats and forums, and although I am in midlife, I felt warm and welcome. I encourage you to check it out and be a part of it.
So, my Question of the Week is: Will the MS community address the needs of people age 50 and older? I’d love to hear what you have to say! Are other HC readers interested in programs geared toward baby boomers? Support groups for us? Webinars or teleconferences on aging and MS? Is there research focused on people who were diagnosed over 20 years ago, and how our bodies may be affected? How will long term use of medications affect our aging process? These are some of the questions that I think about everyday. What do you think?