7 posts from April, 2010

“We Keep Moving” with the National MS Society of Greater New England

Posted April 7th, 2010 by

Just on the heels of MS Awareness Month, here’s one more interview with one of PatientsLikeMe’s nonprofit partners.  For this interview, Molly Cotter, who handles Nonprofit Partnership Development at PatientsLikeMe, sits down with National MS Society of Greater New England’s Development Director Todd Krohne to discuss exciting things happening with his chapter, including their new “We Keep Moving” campaign.  The NMSS of Greater New England is helping spread the word about our site and the PatientsLikeMeInMotionTM program and we are happy to report that six of our 3-star patient members (to date) will have teams sponsored by PatientsLikeMe at MS Walks in the New England region this Spring.

2271 (Molly) During MS Awareness Week last month, NMSS launched its “We Keep Moving” campaign to “catapult our movement toward a world free of MS.”  What’s that campaign all about and why is it important for patients?
todd_challenge08_041c1 (Todd) Living with multiple sclerosis is a challenge, no matter where you are. Imagine what it’s like living with MS in an urban high rise — or in rural America where the closest MS specialist is 250 miles away, by bus. “We Keep Moving” is a website that will chronicle a ten week journey across the country. Unique stories and perspectives — challenges, triumphs and everything in between — will be shared. Submit your story and share in the journey as we learn about how people keep their lives moving forward. Go to www.wekeepmoving.org. This initiative is supported in part by Novartis Pharmaceuticals Corporation.

Greater New England Chapter member, Anna from Shrewsbury, is a finalist this week in the “We Keep Moving” video contest, and she needs your vote to have her story produced on video!  Read more about her story and vote for Anna here.

2271 (Molly) In 2008, PatientsLikeMe sponsored the MS Challenge Walk in Cape Cod, MA. What a great event!  This year, the NMSS of Greater New England has helped us spread the word about PatientsLikeMe and our pilot PatientsLikeMeInMotionTM program.  What excites you most about this new program?
todd_challenge08_041c1 (Todd) PatientsLikeMeInMotionTM is a fantastic way to motivate people to take action and to generate resources, both financial and human, to fund research into prevention, treatment, and cure of diseases like multiple sclerosis, and to help people whose disease has hurt them financially. Throughout history, the fight against disease has been fueled by individuals raising money for basic science research to unlock the mysteries of a disease and produce clues for curing it. PatientsLikeMeInMotionTM is another channel to communicate with people and help them understand that if they don’t take action to move forward, no one else will.
2271 (Molly) As we wrap up MS Awareness Month, any exciting things happening at NMSS of Greater New England for patients – e.g., research, events, online campaigns?
todd_challenge08_041c1 (Todd) We’re very excited to announce that as of March 1, 2010, Maine, Massachusetts, New Hampshire, and Vermont joined forces to become the ‘Greater New England Chapter’, serving a combined total of 19,000 individuals and families affected by multiple sclerosis.By consolidating administrative functions and by combining the talents of our Boards of Trustees, staff, and volunteers, we can streamline operations, increase fundraising effectiveness, and expand programs, services, and advocacy for those affected by MS.Of course, Walk MS and Bike MS and the MS Challenge Walk are very exciting ways to join the movement to create a world free of multiple sclerosis.  These fundraising events are just as rewarding to the individuals who participate in them as they are to people with MS who benefit from the MS education, support, advocacy, services, and research that the fundraising pays for, and sometimes they are the same people!!

For a complete listing of current programming and fundraising activities, visit www.MSnewengland.org.

2271 (Molly) Thanks, Todd!

2010 Parkinson’s Awareness Month:
Interview with EnglishTutor

Posted April 5th, 2010 by

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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2166 (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!”

2166 (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.
2166 (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!).
2166 (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.
2166 (Amy) Thank you so much for sharing, EnglishTutor!