ICYM My Facebook Live Chat

We had a great live chat, today, on the MS News Today Facebook page.

I had the pleasure of talking about my MS experiences and answering over 200 questions for about an hour.  ICYMI, you can click here to see the video.

More of these live chats are planned in the future, so stay tuned.

 

I’m Talking About MS Live on Facebook!

I’ll be live today, Monday April 24th, on the Multiple Sclerosis News Today Facebook page to talk with you about my experiences with MS. I hope you’ll join me at 5pm edt / 9pm gmt and bring your questions.

 

 

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.

—-

(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.

 

Talk With Your MS Doc About Keeping Your Job

(This first appeared as my column on www.multiplesclerosisnewstoday.com)

You probably talk about multiple sclerosis (MS) symptoms, drugs and therapies when you meet with your neurologist, but I’ll bet that most people don’t talk very much about working. Being able to work, and continuing to hold down a job, is important. I see concerns about this all the time on the online forums where we MS patients hang out. Work should be a part of that medical discussion.

In Europe, two organizations have teamed up to encourage medical providers to speak with their MS patients about working and their jobs, and they’ve created a program help them do that. The Work Foundation and the European Multiple Sclerosis Platform (EMSP) call it “Promoting Positive Work Outcomes for Europeans with MS,” (and I’m sure they won’t mind if this American spreads the word outside of the EU). The groups believe that supporting people in their working lives — something they call “workability” — should become a priority outcome of clinical care. The program focuses on four areas:

  • The work-focused nature of conversations between clinicians and people living with MS.
  • The challenges and barriers faced by people living with MS who wish to find jobs, keep them or return to work.
  • The quality of jobs available to people with MS and the practical steps employers can take to create fulfilling work.
  • The “workability” status, which includes economic, clinical and social benefits for wider society, including healthcare systems, small and big employers, and people with MS as well as their careers.

Talking about workability

An important aspect of this program is getting doctors and others who treat MS to talk with their patients about workability. The coalition’s guide is called “Why and how should HCPs talk to people with MS about work?” and it starts out: “Many people with MS would like to work and see it as a valuable part of their recovery. But they face a number of health and social barriers to achieving this ambition.”

The booklet reviews subjects such as why it’s important for healthcare professionals to talk with their MS patients about work, how to manage their symptoms on the job, and when and how to disclose an MS diagnosis to an employer. Though the guide is designed for medical professionals, it’s also useful for MS patients to read. It also contains lots of facts and conversation-starters.

The working numbers aren’t good

Among those facts: In Europe only 26 to 42 percent of MS patients are working, 60 to 80 percent lose their jobs within 15 years of the onset of MS, up to a third retire early and an estimated 17 percent get fired by their employers. I haven’t been able to locate comparable figures for the United States or elsewhere, but I have to believe they’re no better. Obviously, there’s a need for medical professionals to include a discussion, and suggestions, about how MS patients can handle this “workability” problem in their treatment plans.

Do you have a “workability” experience or suggestion? Please share it in a comment. The more we talk about it, the more we can improve how we all fare in the workplace.

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.

 

Stem Cell Treatment for MS: Can’t We Move Faster?

(This first appeared as my column in www.multiplesclerosisnewstoday.com)

There is some good news about stem cell therapy and some that’s not so great.

A just-published study concludes that one form of human stem cell therapy is more effective at treating multiple sclerosis than the best of the MS medications being used currently.

The not-so-good news is that approval of this therapy in the U.S. still seems to be a long way off.

The treatment is known as high-dose immunosuppressive therapy and autologous hematopoietic cell transplant (HDIT/HCT). The procedure, more widely known as HSCT, aims to suppress active disease and to prevent further disability by removing disease-causing cells and resetting the immune system. During the procedure doctors collect a patient’s blood-forming stem cells, give the patient high-dose chemotherapy to deplete the immune system, and then return the patient’s own stem cells to rebuild the immune system.

Stem cell replacement is better than MS drugs

The five-year study, that was published in the February issue of Neurology, shows that HDIT/HCT can result in sustained remission of relapsing-remitting MS. Five years after receiving HDIT/HCT, 69% of the trial participants had no progression of disability, relapse of MS symptoms or new brain lesions. And some of the patients had some of their symptoms improve. This occurred without taking any MS medications after the stem cells were replaced.

“These extended findings suggest that one-time treatment with HDIT/HCT may be substantially more effective than long-term treatment with the best available medications for people with a certain type of MS,” said Anthony S. Fauci, MD, the Director of the National Institute of Allergy and Infectious Diseases.

More study needed

But, here’s the not-so-good news. In a press release Fauci continued: “These encouraging results support the development of a large, randomized trial to directly compare HDIT/HCT to standard of care for this often-debilitating disease.” So, Dr. Fauci, how many more years will that take?  Granted, the study that was just completed involved only 24 volunteers, all of whom had aggressive, relapsing-remitting MS. We know the treatment carries some risks and that many participants in the study experienced some serious, but expected, side effects, such as infections. But, five years after receiving HDIT/HCT treatment, most trial participants remained in remission and their MS had stabilized. In addition, some participants showed improvements, such as recovery of mobility or other physical capabilities. It seems as if results such as that should shift research into high gear.

Is research moving fast enough?

Why, then, do investigators seem not to have greater urgency in making HDIT/HCT treatment available in the U.S.?  “If these findings are confirmed in larger studies, HDIT/HCT may become a potential therapeutic option for patients with active relapsing-remitting MS, particularly those who do not respond to existing therapies,” said Daniel Rotrosen, MD, director of NIAID’s Division of Allergy, Immunology and Transplantation.  

To me, that sounds like several more years of study before researchers will be ready to ask the U.S. Food and Drug Administration to approve this treatment. I’m not a doctor. I’m not a scientist. I’m just an MS patient who’s anxious to halt the progression of my disease and to walk better. Do I need to wait another five years or more while “a large, randomized trial” is conducted?

Just venting, I guess. But scientists have been studying stem cell treatments for years and it sure seems as if we’re still crawling when we should be cruising.