Category Archives: Uncategorized

Walking the Dog, An MS Adventure Story

It’s 7 in the morning and it’s raining cats and dogs. I need to walk our dog and the thought of it is not very appealing. We live in a condo, so this activity requires getting dressed, squatting down to feed Joey, squatting again to get him hooked up with his leash, getting my rain gear on and going down the elevator. Not a big deal for most folks, but a little bit of a bigger deal for someone like me, who has MS.Joey and scooter 1

I don’t actually walk Joey. He trots alongside me as I ride my scooter. We’ve gotten pretty good at doing this, but the elevator can be a bit of a challenge, as can meeting up with most other dogs. Joey, who is a Cocker Spaniel, likes people more than he likes most dogs. (If you’re a certain age, you may appreciate the Joe Cocker connection.) He also likes to be the boss. (Not to be confused with The Boss.)

In the rain, it’s a bit of a challenge to get off the scooter with my cane, have his leash in one hand and the poop bag in the other – especially if there’s another dog around. I give myself extra points for completing the poop pickup if the wind is strong, which it often is here at the ocean.

Anyway, it’s not easy having a dog or, for that matter, a cat (more about the cat shortly). So I was surprised when I was contacted by a writer for another website who was putting together an article about the benefits that accrue to someone with a disability who lives with a pet. Benefits? Let me think about that and get back to you.

Meanwhile, let me introduce you to TJ. TJ. is a retired grand champion show cat, and he knows it. Like most cats, TJ thinks it’s great fun to plop down in front of me as I’m walking – not such a good thing to do to a guy who walks with two canes. He tries to nibble my ankles when I’m sitting – a dangerous thing to do to a guy who has a cane. I accidentally stepped on his tail one day with my bad leg. For a very long five seconds I couldn’t move and he couldn’t move, but we each managed to escape uninjured. Of course, as with all cats, there’s also kitty litter. Need I say more?

Yes, I eventually told that writer, there are benefits to having a pet for someone with a disability. There’s never-ending companionship, at least with the dog. There’s that friendly greeting when you get home (dog only) and the piercing howl when you leave. There’s the warm body curled up next to you at night, leaving you about two feet of room in a king-sized bed (mostly dog, but the cat can get pushy).

And, if you put Joey and TJ together, the result can sometimes be some great entertainment:

So, back to the original question. What are the benefits of someone with a disability having a pet? As far as I can see, the benefits are no different from the benefits for someone who’s healthy! And, they’re usually worth an occasional walk in the rain.

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Have You Been Switched from Generic to Brand Name?

 

Insurance companies want people to use generics, rather than the more expensive brand-name drugs, right?

Maybe not. Because, at least in some cases, they’re doing just the opposite. Some patients are being forced to use brand-name drugs even when those drugs have generic equivalents. It happened to my wife last week. Not surprisingly, that means that some of us with MS could wind up having to dig deeper into our pockets to pay for some therapies.

The New York Times recently published a long story about this relatively recent, and not widely known, practice. It points a finger at both insurance companies and drug manufacturers.

Here’s what’s happening

The Times story reports that some drug manufacturers are trying to fight competition from generic versions of their products by negotiating deals with insurers and pharmacy benefit managers. (Pharmacy benefit managers are companies such as CVS Caremark and Humana that actually run the drug plans provided by Medicare and private insurance companies.)

The deals require the drug plans to stop covering some generics and instead approve only their brand-name equivalents. In exchange, the drug companies sell the brand-names to the drug plans at a discount. But, the Times reports, the discount isn’t passed along to patients. The insurers or the drug plans pocket it and patients wind up paying more for these drugs.

The impact on MS drugs

This practice also is reported to be happening with some biosimilar products that compete with the new, expensive biologic drugs, just as generics compete with brand names. (A biosimilar is a product that is almost identical to an FDA-approved biologic drug. It’s supposed to have no significant differences in terms of safety and effectiveness, and there are only small differences in its components.)

A drug called Glatopa is a biosimilar for the daily MS injectable drug Copaxone. Two years ago, Glatopa’s manufacturer predicted that Glatopa would have a wholesale list price of about $63,000 a year. That’s about 15-18% lower than the list price for once-a-day Copaxone.

According to the Times, in December, CVS Caremark, one of the largest drug benefit managers, sent a memo to pharmacies telling them that some of its Medicare drug plans would cover only brand-name versions of 12 drugs. No more coverage for their generic versions. Copaxone was one of those 12.

Out-of-pocket costs are impacted by deductibles

A spokeswoman for CVS Caremark told the newspaper that consumers never pay more for a drug when Caremark favors a brand name over a generic. But it’s not simply a case of the cost of each prescription.

According to the story, 29% of Americans with employer-provided health insurance have a high-deductible plan. They would still be hit with higher out-of-pocket drug costs if they were forced to use generic drugs because, until their deductible is met, they’re often required to pick up the full price of brand-name medications. On the other hand, they’re charged only a small percentage of the price of generics before meeting the deductible.

Also, many plans pay for a larger percent of the cost of a generic drug than they pay for its brand name.

The bottom line

Pennsylvania pharmacist Robert Frankil, quoted by the Times, said, “There’s only one reason why they’re requiring you to use a more expensive product. Because somewhere down the road, somebody is earning more money.”

Frankly, I don’t know what we patients can do about all this. But I thought you’d want to know about it.

(A version of this post first appeared as my column in http://www.multiplesclerosisnewstoday.com).

If You Have MS You Need to Speak Up Now

This came into my inbox today and I think it’s important to pass it along to as many of us with MS, or another chronic disease, in the U.S. as possible. We may never have another chance to stand in the path of these cuts.

Health care ad

Here’s why we’re opposed to this bill:
  • Many families will have to pay higher premiums.
  • If you’re fifty or older, insurers could charge far more than they do now.
  • There are millions of Americans on Medicaid, including children, the elderly, and people with disabilities that would be cut off completely.
  • People with pre-existing conditions could be priced out of meaningful insurance.
  • Americans could face lifetime and annual limits on care.

Speak up now before it’s too late.

Don’t let Congress jeopardize your health. Call your U.S. Senators at 202-224-3121 and/or write to them today.

 

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.