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I’ll be live on Facebook talking about DMDs for MS Fri., 22 June, 3pm edt

I hope you can join me Friday on the MS News Today Facebook page to share experiences using Disease Modifying Drugs. The live stream will begin at 3:00 pm eastern time, 7:00pm GMT, and will run about an hour.

Ed

Is it Time to Treat Your MS to a Scooter Ride?

To scoot or not to scoot? Is is better to drag your legs around for as long as you can or to give in and get yourself a set of electric wheels?

That decision prompted this vent on a multiple sclerosis Facebook group recently:

“I’m just wondering if anyone has this happen to them. Every time I go to the store I have someone roll up on me in their electric scooter and tell me I need to get one. Every time my response is the same “I refuse to use one until I absolutely have no other choice” and then they shake their head at me like I’m crazy. Granted I know how I look pushing my walker (which I refused to use for a long time and just clutched onto walls) and dragging my dead weight of a right leg behind me, red faced and sweating with the effort, but for now I am able to walk so I do, is that really such a bad thing?”

For many years I felt the same way as that writer. It took one tripping fall too many, however, to convince me to find some walking help. I began using a cane; first a fold-up, used only occasionally, then a nice looking wooden cane that I used all the time. That was in the late 1990s, close to twenty years after first being diagnosed with MS.

I started using a scooter in the summer of 2000, when a colleague suggested that I rent one to get around the large Staples Center in Los Angeles, and Philadelphia’s First Union Center (now the Wells Fargo Center), while covering the political conventions being held in those cities. Riding, rather than walking, gave me the mobility that I needed to do my job. I scooted whenever I was at those venues and at the the end of each long working day I parked, plugged the scooter into its charger and walked out of the convention center. Without using the scooter someone probably would have had to have carried me out.

Four years later, my wife convinced me to buy a scooter of my own. My Pride Sonic (now called a “Go-Go”) separated into 4 parts. The heaviest was about GoGo-Sport-3W-Red40 pounds so I could disassemble the scooter, throw it into the back of my SUV and take it to work with me. That gave me two benefits, I could move around our news bureau, which covered 3 large floors, faster than anyone else and I also saved a ton of personal energy.

That Sonic also came along on cruises to Alaska and the Mediterranean with my wife and I but, eventually, it became too heavy and cumbersome to travel with.  So, enter the TravelScoot. This is a 35 pound scooter that can be folded

Two scooters

With another cruise passenger in Dubrovnik

like a baby stroller. I can ride it right to an aircraft door where it’s stowed, folded in a coat closet or unfolded in the cargo bay, and it’s returned to me at the door when we arrive. I still use a larger scooter, now a Go-Go, around town and to walk our dog. (And when we go grocery shopping, my wife rides the Go-Go and I ride the TravelScoot). But the TravelScoot is, as the name suggests, primarily my travel scooter. It’s wheeled me around the ruins of Ephesus, Turkey and been “tendered” from a cruise ship onto the shore at Santorini, Greece. 

I’m not advocating for a particular brand of scooter. An on-line search will turn up dozens, at prices ranging from around $900 to $4,500 or so. And you’ll probably have to pay for it yourself. Unless your doctor will certify that you need an electric scooter to get around in your house it’s unlikely that Medicare, Medicaid or your insurance will pay for it in the U.S.

I am, however, advocating that you not allow pride, vanity or a strict “use it or lose it” philosophy to stand in the way of getting yourself some wheels. It really helped to make me more independent and it made a big difference in the qualify of my life.

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(This post first appeared as my column on http://www.multiplesclerosisnewstoday.com)

 

Some FAQs about the Bioness “L300 Go”

(This is a sightly updated version of a column of mine that first appeared on http://www.multiplesclerosisnewstoday.com)

Earlier this year Bioness announced that the U.S. Food and Drug Administration had cleared its new “L300 Go” functional electronic stimulator (FES). It’s an upgrade of the original “L300” that I’ve been using for more than five years. Without the “L300” strapped to my left leg it’s difficult for me to walk more than 25 or 30 steps, even with two canes.

The “L300” sends a low-intensity electrical pulse down a nerve that runs from my knee to my ankle each time I begin trying to lift my left leg to walk. That pulse forces my foot to flex upward from my ankle, so my toes don’t drag. (What the docs call “foot drop“). The electrical pulse replaces the signal from my brain to my ankle that’s blocked by my MS.

When Bioness recently announced the FDA clearance of the “L300 Go” a news article was published on the Multiple Sclerosis News Today web site. That story generated several questions from readers, who wanted a better understanding of the “L300 Go” and how it’s different from the “L300.” So, I’ve been in touch with the folks at Bioness and will try to answer some of the questions that I’ve seen posted.

What’s the difference between the “L300” and the “L300 Go?”

As I understand it, the “L300 Go” allows a therapist to use 3-D motion detection system to better adjust an “L300” to make it more responsive to a person’s gait. The 3-D motion detection seems to be the most important new feature. This motion detection system also allows “L300 Go” to be used without the sensor that the “L300” requires to be placed your shoe.  That means you’re able to change shoes without having to move a sensor, and even use the device barefoot! (A competitive device, called the “WalkAide,” has had this feature since it came on the market around the same time as the “L300”). The “L300 Go”also responds to motion somewhat faster than the “L300.”

I’ve been using the L300. Does FDA clearance mean that Medicare and insurance will now pay for it?

The FDA clearance was for a new product, the “L300 Go.” The “L300” was cleared by the FDA in the U.S., and received European Commission approval several years ago. The recent clearance doesn’t change the fact that, though Medicare has approved the L300 for use by spinal cord injury patients, and at least one nervous system disease, Medicare has never approved the “L300” for use by MS patients. As we all know, insurance companies aren’t likely to approve something that Medicare hasn’t approved.

Will Medicare pay for the “L300” for MS patients in the future?

A spokesperson for Bioness tells me that “veterans and their families already have access to our technology as a covered benefit through the Veteran’s Administration. We continue to work with the Centers for Medicare & Medicaid Services (CMS), as well as private/commercial insurance companies, to expand coverage criteria to include more of their beneficiaries.”

Will the price of the “L300” drop now?

I doubt it. I haven’t seen what the price will be for the “L300 Go,” (if that’s even been determined), but Bioness has said it will give a price break to current “L300” users who want to “upgrade.”

Why do you say the FDA “cleared” the “L300 Go,” rather than “approved” it?

It’s a technicality. The FDA “approves” new drugs but it “clears” the use of new medical equipment. Don’t ask me why.

 

At-home treatment studied for MS “brain fog”

(This post first appeared as my column on http://www.multiplesclerosisnewstoday.com)

One of the most troubling symptoms of multiple sclerosis, especially for those of us who are still working, is “brain fog”…not being able to concentrate… not feeling “sharp” when working on a task or solving problems.

So it was interesting to read about a new study that reports that patients with MS had better problem-solving ability and response time after training with a technology called transcranial direct current stimulation, or tDCS. 

During tDCS, a patient wears a headset through which a low amplitude direct current is applied to the scalp. The stimulation makes it easier for neurons in the brain to fire. The result, say the researchers, is an improvement in the learning that takes place when patients use cognitive training games during rehabilitation. And, importantly, this technology doesn’t have to be applied in a clinic; it can be used by a patient at home.

“Our research adds evidence that tDCS, while done remotely under a supervised treatment protocol, may provide an exciting new treatment option for patients with multiple sclerosis who cannot get relief for some of their cognitive symptoms,” lead researcher Leigh E. Charvet, PhD, associate professor of neurology and director of research at NYU Langone’s Multiple Sclerosis Comprehensive Care Center, says in a release on this research. “Many MS medications are aimed at preventing disease flares but those drugs do not help with daily symptom management, especially cognitive problems. We hope tDCS will fill this crucial gap and help improve quality of life for people with MS.” 

In this study, published in the Feb. 22 issue of Neuromodulation: Technology at the Neural Interface, the tDCS was targeted at the brain’s dorsolateral pre-frontal cortex. That’s an area linked to fatigue, depression and cognitive function. Twenty-five participants were provided with a tDCS headset that they learned to apply with guided help from the research team.

In each session, a study technician would contact each participant through online video conferencing, giving him or her a code to enter into a keypad to start the tDCS session. That allowed the tech to control the dosing. Then, during the stimulation, the participant played a research version of computerized cognitive training games that challenged areas of information processing, attention and memory systems.

Researchers found participants in the group treated with tDCS showed significantly greater improvements on sensitive, computer-based measures of complex attention and increases in their response times compared to the group that did cognitive training games alone.

The NYU team is currently recruiting for additional clinical trials involving 20 tDCS sessions and a randomized sham-controlled protocol, to gather additional evidence of benefits of tDCS. If you are interested in participating in one of the studies, call 646-501-7511 or email nyumsresearch@nyumc.org.

Caution: There are tDCS-type products that are being sold directly to patients, without being supported by researchers or information about how to use them. The researchers suggest you stay away from these. If you’re considering tDCS, they say, first speak with your doctor.

 

Night Life

I rarely re-blog something but this post from Jen just struck a chord. My occasional, but recurring, dream is that I’m walking and suddenly realize that I don’t have my cane. Sometimes I care…sometimes I don’t.

Tripping Through Treacle

I often feel like I have another life…. one that I can only access when I am asleep.

Although I can sometimes feel frustrated about the amount of time that I spend in bed, it is needed for me to be able to function and feel vaguely human, as many who have chronic illnesses will understand.  But there is another aspect to sleep that I appreciate – the dreams.  And this is where my other life comes in.

In my dreams, I do not have multiple sclerosis.  I have my old life back, one without tiredness, mobility problems, a scooter.  In my dreams I walk.  And I walk and I walk.  Usually around cities.  Its almost like it is a subconscious thing – like my brain knows that I can’t walk well so it gives me every opportunity to do it when I am asleep.

dreams

There is a quote from…

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Lemtrada for my MS: Ups and downs

It’s been a month since I last posted here.  I’m sorry.  I’ve been spending my time riding a roller coaster.

It’s the roller coaster of reactions that I was told to expect following my Lemtrada infusions.  I managed to avoid most of those reactions for the first month and I thought that I was home free.  Ha!  What could I have been thinking?

Month-two began with a good lab report but also with an appearance of the fatigue roller coaster.  On several days it was very tough getting out of bed.  Other days I felt good when I woke up but took a dive in mid-afternoon and had to head back for a nap for a couple of hours.  Many nights involved multiple “pee” trips, which didn’t help my energy level. Add to this one middle of the night and one middle of the afternoon episode of fever and chills (which were handled with 800 mg of Ibuprofen) and it’s been an uncomfortable ride. One day I finally listened to my body and spent the whole day in bed.  It helped, but it didn’t stop the coaster.

I had a slow start today, but since I got going I’ve been feeling pretty good.  I even had a good physical therapy session in the afternoon and I’m still here, cranking at the keyboard, in early evening. But who knows what morning will bring.  The uncertainty of all this makes me wonder if I made the right decision, at age 68, to switch from Aubagio to Lemtrada.  My MS lesions have been stable for years. Though my mobility has slowly and steadily decreased, I was never really faced with the prospect of not being able to have a good idea of how much fuel would be in my tank to start each day.  But, I’m on the road now.  No U-turns on this one.

As many of you know, I write a column, twice a week, for www.multiplesclerosisnewstoday.com. That’s where I’ve been devoting most of the fuel that’s been in my tank recently.  Apologies for my absence.  Hopefully, the coaster will crawl to a stop soon.

Oh, by the way, the women in the picture on the top of this blog are two very important members of my Lemtrada team; Dr. Heidi Crayton and Carrie Blizard Potter, R.N. They warned me this would happen!

 

 

 

Copaxon MS drug approved for tri-weekly use in Canada

It’s no fun jabbing yourself once-a-day if you’re using the multiple sclerosis drug Copaxone.  I, eventually, hit a brick wall self-injecting when I was using Avonex and that was just sticking myself once-a-week.

But now Teva Pharmaceutical has what should be good news for Canadians using Copaxone.  Health Canada has approved a three-times-a-week version of the drug. Three-times-a-week Copaxome 40 mg/mL is expected to become available to patients there, by prescription, later this fall.

Teva Pharmaceutical says Copaxone 40mg.mL is indicated for the treatment of patients with relapsing remitting multiple sclerosis (RRMS). It’s injected subcutaneously and those injections should be spaced at least 48 hours apart.

In addition to the newly approved dose, daily Copaxone 20 mg/mL will continue to be available.

Tri-weekly Copaxone already available in U.S. and Europe

Three-times-a-week Copaxone was approved by the U.S. Food and Drug Administration in January, 2014.  Teva Pharmaceuticals says as of last June about 61,500 MS patients were using the drug in the U.S. In Europe, the MHRA and other EU member states issued a positive assessment report under the decentralized procedure in December 2014, and since launch, three-times-a-week Copaxone has been prescribed to more than 36,000 patients.

The Health Canada approval was based primarily on data from a Phase III study, which was the largest Copaxone clinical trial to date.  It included more than 1,400 patients.

Many different MS drugs available for injection

Copaxone is one of several disease modifying drugs available to treat Multiple Sclerosis.  Others, approved for use in the Unite States and listed on the National MS Society’s web site, include:

That web site also includes an excellent list of all of the drugs approved for treating Multiple Sclerosis exacerbations and managing MS symptoms.