Support

My doctor, who battled cancer two years ago, told me about a website
that she used/loves to improve her mind after the rigors of treatment left
her feeling less sharp than before.

Lumosity is a site that is made up of several fun, if not completely addicting exercises. It's based on the concept that we can improve our neuroplasticity by giving ourselves a mental work out. The site says users have experienced:

. Clearer and quicker thinking
. Improved memory for names, numbers, directions, etc.
. Increased alertness and awareness
. Elevated mood
. Better concentration at work or while driving

It's a pay site, ($10/month) but there is a two week trial so you can decide if it's for you. For me, it was $10 well spent. I frankly cannot get enough of the "Word Bubbles" game. If anyone knows of any sites that help with online word game addiction, please speak up. :-) Also - if anyone else feels like this site helps them, I'd love to hear that as well.

~Debbie Mellor

A senior at Colorado University studying mechanical engineering on the Boulder campus, has partnered with his classmates to design and build an accessory tray for walkers, which incorporates a stabilizing device that consists of four polypropylene rails along with ball bearings. The device allows the tray to remain level while its user goes up and down ramps, or tilts from side to side. The accessory tray, which has gone through tests, also sustains low-speed impacts.

This is a nice article on how a Boston area nursing home dedicated to people with MS uses technology to enrich the lives of those who have not fared very well with this disease.

Biogen Idec has launched a site called MS Workplace, which it bills as "the first-of-its-kind online initiative that provides MS-specific career advice, workplace tips, and job postings for the MS community."

You may also be interested in the Accelerated Cure Project's free booklet "Working with Multiple Sclerosis," which offers great strategies and tactics for managing a career with a chronic disease like MS. It is available as a PDF or in HTML.

This document (PDF), written by Dr. Elliot Frohman, contains a great overview of things you should expect your neurologist to do (see second page - "Practice Pearls"). It's written for docs treating people with MS, but it works just as well for people with MS to set their expectations for their doc.

This article talks about how container gardening is ideal for people who use wheelchairs. In fact, the Action Online newsletter from the United Spinal Association has many interesting articles for the disabled. I recommend signing up for their mailing list if you like these sorts of tips.

Placebo controlled trials are used to test new drugs by comparing the results of those taking the active drug with those taking the inactive placebo. This allows us to know that the beneficial effects, if any, seen in the trial were due to the drug and not to some other aspect of the care surrounding the administration of the drug.

In a disease like MS, where there are several partially effective drugs, it becomes a concern to put someone on a placebo when they could be taking an approved medication. A group of clinicians, ethicists, statisticians, regulators, and representatives from the pharmaceutical industry convened to discuss this topic and published their thoughts.

They concluded that for patients with relapsing MS for which established effective therapies exist, placebo-controlled trials should only be offered with rigorous informed consent if the subjects refuse to use these treatments, have not responded to them, or if these treatments are not available to them for other reasons (e.g., economics).

Last Sunday's New York Times Magazine had an article about the web site PatientsLikeMe. This site has been mentioned on MSNews before and is a community where you can share data about your disease and learn from other people with similar experiences. The article talks about how people are using the site to their benefit and features some users who have MS. It also discusses broader issues relating to use of personal data and the Internet in healthcare. Well-worth reading, particularly if you're curious to learn more about PatientsLikeMe.

This issue of MS in Focus is about stem cells and remyelination. It's a good primer on the topic and well worth a read so you can understand the variety of approaches that are confusingly lumped under the same banner.

The Leonard Florence Center for Living (LFCL) is America's first urban Green House, providing skilled nursing care for 100 residents in an environment that bears little resemblance to a nursing home as we know it today. Residents will live in a ten-bedroom home with contemporaries, each with their own room and bath. The in-home kitchen will serve upon request.

A portion of the facility will be dedicated to people with MS, another to people with ALS. It is located in Chelsea, MA.