Monthly Archives: June 2016

Kaleidoscopic MRI Art Brings Beauty to Neurological Illness — The Creators Project RSS Feed

Kaleidoscope, Part I. Jameson digitally manipulated MRIs of her own brain to create a collage. All images courtesy of the artist. Elizabeth Jameson wants you to look at her brain. Actually, she wants you to stare at it. Over the last 20 years, she’s chronicled her multiple sclerosis by making vibrant prints of her magnetic…

via Kaleidoscopic MRI Art Brings Beauty to Neurological Illness — The Creators Project RSS Feed


Spinal stimulation helping quads move their hands

They’re not multiple sclerosis patients, but researchers using electrical stimulation of the spinal cord have returned some above-the-waste movement to two quadriplegics.

In the past, researchers have been successful returning some voluntary leg movement to quads when the lower spinal column was stimulated by electric pulses, but this appears to be the first report that electrical stimulation of the cervical spine can produce movement above the waist; in this case, in the hands. The research was first published on the web site “Neurorehabilitation and Neural Repair” and was more recently reported on the National Institute of Health web site.

The two patients had severe cervical spine injuries and had been paralyzed for more than 18 months. Doctors implanted 16 electrodes on their spine above and below their injuries.  Then the two received electrical pulses while trying to grasp and move a hand grip.

The researchers report that both patients’ hand strength improved after just one treatment session.  After additional sessions their hand strength improved some more, as did their hand control.  And the strength and control improvements continued even without the stimulation.

This translated to large gains in their ability to feed, bathe and dress themselves.  Their ability to move around in bed, and get in and out of bed, also improved.  One patient even regained the ability to pick up and drink from a cup.

The researchers, led by Dr. Daniel Lu at UCLA, think the stimulation reawakens spinal cord nerves that were damaged by the accident. The nerves then rewire themselves and relearn their old “jobs.”

Could this technique be used to reawaken the nerves of multiple sclerosis patients?  Beats me…but, to this layman, this research certainly seems encouraging.


Disappointing results in Biogen MS drug trial

It had been hoped that Biogen’s experimental drug opicinumab would be able to repair mylin.  As those of us who live with Multiple Sclerosis know all too well, mylin is sort of an insulator to our nerves. MS destroys mylin and, in doing so, short circuits our nervous system.

Biogen announced today that Phase 2 of its opicinumab trial, named SYNERGY, failed to meet its primary goal of improving physical and cognitive function and disability.  It also failed to meet a secondary goal of slowing the progress of the disease.

In a news release, Biogen’s Chief Medical Officer, Alfred Sandrock, M.D., Ph.D., says:   “Achieving repair of the human central nervous system through remyelination would be a substantial achievement, and while we missed the primary endpoint, the SYNERGY study results suggest evidence of a clinical effect of opicinumab.”

Dr. Sandrock says the test data is “complex” and Biogen scientists continue to analyze the results to help in the design of the company’s next study.

SYNERGY was a randomized, double-blind, placebo-controlled, dose-ranging Phase 2 study that evaluated the impact of opicinumab among 418 participants with relapsing forms of multiple sclerosis (both relapsing-remitting and secondary progressive) over 72 weeks.


MS bandana

Are You Ready to Enjoy Summer?

I love the summer.  I also live at the beach.  So, I’m just asking for trouble.

I can’t help it.  Being out in the sun is one of my greatest pleasures, followed by hanging around in the swimming pool at our condo.  Note that I said in the pool.  Staying in the cool water helps offset the problems that summertime temperatures create for those of us with MS.

Even if you don’t have a pool handy, there are still ways of staying cool in the heat.

The national MS Society has lots of good hot weather hints on its online magazine.

And there’s a great review of thirteen cooling vests on the web site  Some of these vests, of course, can be expensive but the MS Society suggests that you try seeing if your insurance will cover the cost as an item of Durable Medical Equipment.  The insurancooling bandana 4-shotce code for that is E-1399.  If your claim is denied the Society also has instructions on their web site for filing a health insurance appeal.

For me, a simple and inexpensive neck bandana has worked well.  When I exercise in the heat I like to use it around my neck. It only costs a few bucks and it usually keeps its cool for a few hours.

Have you wanted to get onto the beach but walking though the sand is impossible? Most beaches are accessible, one way or another.   Ocean City, MD, where I live, has several beach wheelchairs which you can borrow.  Many other beaches have the same set-up. The beach patrol usually coordinates the chairs.  At some beaches you can reserve a chair while at others it’s first-come, first-served.  Of course, you need to have someone to push you. ed on beach buggy If you fly solo, or if you spend a lot of time on the beach, you might want to consider buying something similar to what I use.  (Obviously, this isn’t a summer picture but it’s all that I have).  This beach buggy was made by a fellow in California who’s a quad.  It was expensive, and it took him forever to build and ship it, but it gets me out on the sand, it’s loads of fun, and it’s fast!.  I don’t want to make a recommendation but you can find several folks who make these if you search on-line.  In San Diego, California you can reserve a power beach chair like mine, to use free of charge, at several beaches.  For more info, check with Accessible San Diego at: 619-325-7550.

Some beaches, like a few in New York City, even roll out a blue carpet to make your access beach ramp

Here’s a look at some accessible beaches, near and far.

At the beach I can walk into the water if a couple of people help me and the surf is light.  The undertow makes getting out more difficult.  But if you’re not that mobile Adam Lloyd, who writes the Gimp on the Go web site, has come up with a unique idea.

 So, one way or the other, there are ways to have fun in the sun while staying cool.
Have some ideas of your own?  Let us all know with a comment.