What better way to kick-off 2010 Parkinson’s Awareness Month than to bring you “the patient voice.” At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we interview patients each month in our newsletter to find out more about how they approach life. We recently featured englishtutor, a three-star member who shared her tips for staying motivated and thoughts about her Parkinson’s disease. Here’s what she had to say…
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|(Amy) What keeps you motivated?
|(EnglishTutor) I wish I could say that I am highly motivated and I get on with my day with great interest and gusto, but as we all know, getting into that “Oh,-boy,-I-can’t-wait-to…” zone is not always easy.But to be candid, I am determined to look and feel as good as I can for as long as I can, so I am eager to do those activities (walking, weight training, stretching, dancing) that are so helpful in relieving PD discomfort. I am grateful for the people in my exercise class at the gym who are congenial, funny, supportive, and nice, and we spend our class time together grunting, gossiping, griping, and guffawing. Having fun is truly motivating.I have nine step-grandkids who think I’m pretty cool – and I want them to go on thinking that. So I continue to see the humor wherever I can (which always makes me feel better), keep as up to date as possible with what the grandkids are into (we are all Facebook connected and I can text message on my iPhone with one finger as fast as they can with two thumbs), and continue to dress well and wear makeup even when I’m at the computer all day. (Putting on eye shadow and mascara is a bit of a risk, but I persist.)
My students (see question 3 below) also keep me motivated. Their successes are mine as well, and as every teacher knows, there are few experiences as heady as the moment you realize that a student finally “gets it!”
|(Amy) Who do you admire and why?
|(EnglishTutor) I admire people who – by sharing their time, wealth, knowledge, experience, and/or expertise – make a genuine and sustained effort to improve the lives of others. Bill and Melinda Gates are at the top of my list.
|(Amy) How has your condition affected your work life?
|(EnglishTutor) Parkinson’s hasn’t stopped me from my writing and editing work or my teaching. While I can’t really handwrite any more, I can type comfortably enough using an ergonomically designed keyboard, although I’m down from 120 wpm (no errors) to about 70 wpm (with lots of errors). The good news is that using a keyboard gives my stiff fingers a good workout, so at the end of a writing session, they feel fine! I edit PDF documents easily with Adobe Reader.I am an ESL publishing consultant, and because traveling to an office is no longer an option, I attend meetings with clients electronically through face-to-face video chats. I am also teaching English online using Skype and iChat. I have students worldwide, and I still feel very connected. (Thank you, Steve Jobs!)I am the expert in a Literacy Volunteers of America “Ask the Expert” forum for my county. Again, this is all done through the Internet. And in my spare time (what’s that?), I’m writing my memoirs, which my husband’s printing company will publish (or else!).
|(Amy) What’s your favorite aspect of PatientsLikeMe?
|(EnglishTutor) There are many “favorite aspects,” but the most salient one for me, epitomized by the apt name of this group, is the comforting knowledge that each time I log on, I will meet people who truly know what it feels like to wake up in the morning, struggle out of bed, slowly straighten up, stretch, pause for balance, and take that first step. Somehow just sharing knowledge and experiences with people at all stages of PD tends to lessen the severity of this disease for me and, I hope, for them.
|(Amy) Thank you so much for sharing, EnglishTutor!