3 posts tagged “Multiple Sclerosis patients”

Putting together an MS emergency bag: What’s on your must-have list?

Posted 7 months ago by

From managing incontinence to temperature changes and sudden muscle weakness, many people living with MS have items they can’t live without. Some PatientsLikeMe members have started carrying an emergency bag with all the essentials to deal with inconvenient MS curveballs. Check out their suggestions:

  • Instant ice packs
  • Mint gum (helps one member “cool down”)
  • Change of clothes/underwear
  • Wet wipes
  • Latex gloves
  • Hand sanitizer
  • Travel-sized air freshener
  • Towel and water resistant blanket
  • Disposable incontinence products i.e. Pads, Panty Liners or Pull Up Pants
  • Foldable/packable shoes
  • Wet bags (like the ones meant for baby diapers)
  • Travel sized detergent/bleach
  • Fold-up emergency cane (like this one)
  • Advil/Tylenol or a dose of your prescribed muscle relaxer

If you had an MS emergency bag, what would be inside?

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“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!