She Has #MS and She Just Hiked 500 Miles!

Well, 460.75 miles (741.5 km), to be exact.

When I wrote about April Hester in late September, the headline on my post was “She Has MS and She’s Hiking 500 Miles.” Well, she did it, hiking the Palmetto Trail from Walhalla, in the South Carolina mountains, to Awendaw, on the coast. With husband Bernie alongside, April completed the hike on Nov. 3. The couple had expected the hike to take 35 to 40 days. They did it in 34!

April with MS Warrior

April with Madeline, newly diagnosed with MS, who drove eight hours to hike a bit with April.
(Photo courtesy of Bernie Hester)

April was diagnosed with MS in 1996, just after she turned 20 years old. Like many of us, she has balance and fatigue issues. Her legs can become tired, her foot sometimes drops and she falls a lot. April used “trekking” poles for the hike, even when the trail took them through through the downtown sections of some towns. She also wore ankle braces.

Needless to say, the hike wasn’t easy. Over the first seven days, the Hesters covered almost 100 miles of mountains, with some sections that were almost vertical walls. Bernie Hester tells me, “April nearly lost two toenails but we pushed through all the pain.”

The further she goes the stronger she gets

April is on one DMD, Gilenya. She also tries to eat a lot of vegetables and fish. But, Bernie says, the hiking exercise is what really builds April’s strength:

April crosses the stream

Tough going as April crosses a marsh. (Photo courtesy of Bernie Hester)

I can say from watching the progression that, as hard as it was on her in the beginning, the more exercise she did the stronger she got. The transformation happened right in front of me and it was amazing to watch. The hardest part was getting started with all the falls, short distances, quick breaks needed and learning curve of how to do long distance with MS. But once we got it down, she just got stronger and stronger.”
That’s probably a good take-away for all of us who are able to do some sort of exercise, but who don’t. Day three, as Bernie told me, was “a tough day as we ascended to Sassafras Mountain, the highest peak in South Carolina. April had a lot of struggles and we only managed to cover nine miles that day. But she pushed hard so we could make the summit and we were rewarded with a beautiful sunset.”

 

Isn’t that the kind of effort and reward that those of us with MS should try to seek every day?

Why did she hike?

April hiked the trail to raise awareness about the fight against MS. She also hoped to raise money for the National MS Society. Unfortunately, she fell short of a lofty goal. There’s still an opportunity to make a donation, however, by clicking here.

You can also read Bernie’s day-by-day journal of the hike by clicking on April and Bernie’s Trail Journals web page.

(This post first appeared as one of my columns on www.multiplesclerosisnewstoday.com)

Advertisements

Flu Shot or No Flu Shot for MS Patients?

It’s that time of year again. The time of year where I keep seeing posts on MS social media sites asking, “should I get a flu shot?”

In my honest opinion, yes, definitely! There are certainly different opinions about this, but I think that my opinion is the same as that of nearly any doctor that you’ll ask. For example, here’s a what a couple of doctors have to say in a U.S. News and World Report article that’s specifically about MS and the flu:

Dr. Robert Shin, director of the Georgetown Multiple Sclerosis and Neuroimmunology Center: “The flu infection may stimulate the immune system, which may in turn trigger an MS attack.” Note that Shin says the flu, not the flu shot, is what should worry you. He says that getting the flu, or any illness, raises that chance that you’ll have a relapse or a worsening of your symptoms.

Dr. Amesh Adalja, an infectious disease specialist with the Johns Hopkins University Center for Health Security: “When you see flu outbreaks, you see MS relapses.” 

If you just think about what happens to your body in hot weather, or when you have a fever, then the flu-MS connection should be clear.

Docs sat the flu shot doesn’t give you the flu

Are you worried that getting a flu shot can give you the flu, or make you sick with something else? Doctors say don’t be. The flu shot uses a killed virus to protect you against the flu. So it’s highly unlikely that the vaccine will give you the flu. In fact, Dr. Shin says “infection really is impossible.”

On the other hand, the nasal flu vaccine is created from a live virus. The Centers for Disease Control and Prevention recommends against anyone using the nasal vaccine, because there are concerns about its effectiveness.

Since the flu vaccine takes about two weeks to become fully effective, it’s possible that some people who’ve had a shot will still get the flu. There have also been some years where the vaccine hasn’t been a good match for the strain of flu that was prevalent in those years. This may lead some people to believe that the shot gave them the flu when, in fact, it didn’t. It just, for whatever reason, failed to protect them from catching it.

For a lot more detail…

Here are a few places where you can obtain more information:

U.S. Centers for Disease Control and Prevention (CDC)

National Multiple Sclerosis Society

A “STAT News” story, with an international overview

Of course, you should always check with your own doctor.

We had our shots

My wife and I got our flu shots in October, just as we’ve been getting them for many years. Neither of us has ever had a problem.

 

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

Four Airport Tips for Disabled Flyers

Thanksgiving is just a few days away, so I thought it would be a good time to repeat a few of my airline travel tips and add a few new ones.

Get the wait-time app

Needless to say, you need to get to the airport early on busy travel days. TSA appHow early? In the United States, the Transportation Service Administration has an app, MyTSA, which will help you judge. It will tell you:

  • The approximate wait-times at security checkpoints.
  • How historically busy the airport will be on your specific day and time of travel.
  • The delays and current weather at airports nationwide.
  • Which items you can bring with you through the checkpoint.

Get some wheels

Airports, particularly those handling international flights, can be huge. Even if you can walk you really don’t want to walk from check-in to the plane.

I travel with a scooter that’s very light and also can be folded like a travelscoot_classicbaby stroller. I drive my TravelScoot right up to the aircraft door. Its battery is taken on board (FAA regulations require that it be stowed in the overhead) and the scooter is stowed with the baggage. When we arrive, the scooter is returned to the aircraft door and off I go. (There are several other light scooters that fold. You can find them on the internet.)

This works well with a lightweight scooter. If your scooter is larger and heavier, or if you’re in an electric wheelchair, you’ll need to check it at the gate before flying rather than at the plane door. The airline will use an onboard wheelchair, if it’s necessary, to move you from the gate to your seat.

If you’re not disabled enough to use a scooter, arrange for a wheelchair. The airline will provide this from check-in to the gate and in reverse when you arrive. (There is no charge, though tips are accepted.) Request the chair when you make your reservation either via the airline’s website or with an agent on the phone. If you’re buying your ticket through a travel agent or third-party website, it’s a good idea to phone the airline three days ahead of your flight to ensure they know you need a chair. This notification also should be done if you’re traveling with a scooter or an electric chair.

As an extra benefit, whether using my scooter or in a wheelchair, we’re usually moved through security using the (usually faster) TSA Pre-check line. (Once, changing planes at London Heathrow, my wife and I were taken to a completely empty screening area).

Pre-select your seat

Don’t wait until you get to the airport to select your seat. Most airlines allow you to choose your seat when you buy your ticket or when printing a boarding pass. Doing this may allow you to nab an aisle seat or one near a restroom.

Many airlines now have two classes of coach seats: regular and premium. Premium, of course, costs a little more, but the extra leg room is worth it to me, even though I’m only 5-foot-6 tall. Those few extra inches allow me to stretch my legs and even to stand. I also can squeeze past others in the row more easily if I wind up in a window seat. And things are a lot less uncomfortable if the passenger in front of me decides to put his or her seat back as far as it can go … right into my lap.

Premium coach seats are at the front of the coach section, which means there can also be a downside to sitting in one. These seats are sometimes located far from coach restrooms, which are only in the rear on some types of aircraft. I’ve found, however, that if I explain to a flight attendant when I first board the plane that I have difficulty walking in the aisle, they’re usually willing to allow me to use the higher-class restrooms up front on the other side of that blue “iron curtain.”

Medications

Your meds need to go in your carry-on when you’re flying. You really don’t want to be without them if your checked bags are lost.

I travel with about a half-dozen oral medications. I keep them in their original pharmacy containers and carry those in a see-through food freezer bag. Using that method, I’ve never had a problem with security, in any airport in any country.

In the United States, the TSA considers needles and syringes medically necessary items and you can carry them on after they’re screened, just like pills. The Transportation Security Agency has a lot of good information about traveling with medications and medical devices on its website.

From my family to yours, I hope you have a thankful Thanksgiving.

(Featured photo by Nick Fewings, under Creative Commons

(This first appeared as my column on Multiple Sclerosis News Today)

 

Specialty Drugs Mean Specialty Prices

If you have MS, you’ve probably used a specialty drug. My first was Avonex, which I began to use about 1998. Several others followed.
There’s no formal definition of a specialty drug, but these therapies have several things in common. First, they’re expensive. According to the vice president in charge of specialty drugs at CVS Pharmacy, the average monthly cost is $3,000. A CVS website article says that’s about 10 times the cost of a non-specialty medication. Many specialty drugs are hard to administer, requiring an injection or infusion. And it may require special handling. My Avonex, for example, had to be shipped with dry ice to keep it cool.
So, I’m not surprised that the cost of specialty drugs is so much higher than your average prescription med. What really does bother me, however, is how fast the cost of these specialty drugs has been climbing.

Let’s look at the numbers

A few weeks ago, AARP released a lengthy report that studied 101 specialty drugs. Here are the headlines:
  • The price of the most widely used specialty prescription drugs increased substantially more than the general inflation rate in every year from 2006 to 2015.
  • From 2014 to 2015, specialty drugs had their highest annual price increase in a decade: an average hike of 9.6 percent. Inflation, on the other hand, increased by only 0.1 percent.
  • Prices for 29 chronic-use specialty drugs that have been on the market since the beginning of the study (from January 2006 to December 2015) increased cumulatively by an average of 177.3 percent. In contrast, general inflation increased by only 19.4 percent during the same period.

MS drugs are best-sellers

Multiple sclerosis drugs made up 12 of the 101 specialty drugs studied. Their average price rose 10.8 percent between 2015 and 2016, a little higher than the group average. Seven of those dozen MS drugs made the study’s list of 30 best-selling specialty drugs. (You can see the full list on page 30 of the report.)

RANK BY SALES DRUG DOSE DAILY COST 2015-16 HIKE (%)
6 Copaxone 20mg $201 7.6
7 Tecfidera 240mg $194 10.8
11 Copaxone 40mg $179 7.0
16 Avonex Auto-inject $198 15.2
17 Avonex Pre-filled $200 16.2
21 Rebif 44mcg $207 10.8
27 Betaseron 0.3mg $202 11.1

The drug that jumps out at me from this list is Avonex. Why should the price of a drug that’s been in use for nearly 20 years jump 15-16 percent in a year? Copaxone and Tecfidera both lead Avonex in sales, yet their price hikes were lower. Color me confused.

What’s the solution?

Is there a way to limit these price increases? In the CVS article I mentioned earlier, Dr. Alan Lotvin makes several suggestions, most of which don’t work for me.

Lotvin: “… Prior authorization and step therapy can be highly effective in controlling costs.”

Me: Step therapy means reducing costs by prescribing older, possibly less-effective drugs first rather than aggressively attacking MS with newer, more potent drugs. Some insurance companies insist patients follow this path, but it’s not the way that I want my MS treated.

Lotvin: “Another approach is the use of tiered formularies that require higher patient cost-sharing for more expensive therapies.”

Me: Yes, they do. And this is why many MS patients can’t afford to pay for the therapy that could be the most effective for them (though there are drug company programs that help some patients pay for these drugs).

Lotvin: “Ensuring that the drugs are administered at the lowest-cost site of care is also important — in most instances the hospital outpatient center is the highest-cost site of drug administration, while patients’ homes and doctors’ offices are typically the lowest.”

Me: Here, we agree.

The AARP study concludes:

“If recent trends in specialty drug prices and related price increases continue, it will almost undoubtedly become more difficult for patients to access and afford necessary specialty medications. The pricing patterns (price levels and price increases) for specialty drugs will lead to serious problems with respect to access and affordability issues in the future.”

Since access and affordability are already a problem, it seems to me that the future is now.

Yet, AARP offers no solutions, ending its report this way:

“Policy makers interested in reducing the impact of prescription drug prices should focus on options that drive significant innovation while also protecting the health and financial security of consumers and taxpayer-funded programs like Medicare and Medicaid.”

Well, yeah. But how do we find those options? The FDA has now approved generics for Copaxone 20mg and 40mg. That’s not an innovation, but, hopefully, it will help stick a pin in at least one specialty price balloon.

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

Have a Say About Accessible Parking

If you have MS it’s probably happened to you.

You have trouble walking but the few accessible parking spots in the lot are full.

You find an accessible spot but someone is parked in the hash-marked area and there’s no room to get your chair or scooter out of your van.

There are parking spots but the curb cut to the sidewalk is blocked.

So, you mutter a few words under your breath and drive on.

But I’ve just discovered a new group that’s trying to make parking better for those of us with a disability. It’s called the Accessible Parking Council. And it’s going to be participating in a stakeholders’ forum about accessible parking and handicapped placard abuse in a few weeks. The session, on December 6, will be held by the U.S. Access Board. That’s the federal agency that’s responsible for developing and updating the guidelines of the American Disabilities Act (ADA).

Even better than that….you can have your voice heard at that forum by participating in an on-line survey.  The Accessible Parking and Placard Abuse survey takes about 10 minutes to complete and it’s hoped that it will impact policies related to parking for people with a handicap.

“Abuse and other significant issues preventing people with disabilities from using accessible parking have not been adequately addressed on the national level,” says Helena Berger, President & CEO of the American Association of People with Disabilities. “The results from this survey — provided by individuals with disabilities that need accessible parking — should go a long way in developing the right national solutions to this age-old problem.”

But, time is of the essence. In order for the results to be presented at the December forum you need to complete the survey by November 1. That’s only a few days from now. I’ll be doing that as soon as I finish writing this post.

 

She Has MS and She’s Hiking 500 miles

April Hester has MS. She was diagnosed in 1996, just after she turned 20 years old. Like many of us, April has balance and fatigue issues. Her legs can become tired, her foot sometimes drops and she falls a lot.

But unlike many of us, April and her husband Bernie are in the middle of a walk. More accurately, it’s a hike — a 500-mile hike, from Walhalla in the mountains of South Carolina to Awendaw on the coast, along the state’s Palmetto Trail.

Bernie and April Hester on the trail. (Courtesy of Bernie Hester)

As you can imagine, it’s not going to be easy. April is using “trekking” poles for the entire hike, even when the trail goes through the downtown sections of some towns. She’s be wearing ankle braces. But, as Bernie Hester told me in an email, “Her big problem is balance, she falls a lot and I mean a lot. Most of the time after the first 3 miles her legs get weak and her right foot experiences foot drop. We also have to break a lot so she can keep going. Then sometimes she can just go, we had a day where she had some issues early then caught her second wind and we did 22 miles, I was the one holding us up!”

The two expect that the toughest parts of the hike will be the beginning and the end. The start of the trail has a lot of hills and valleys, with rugged terrain on the trail sections and a lack of re-supply options. The end is a remote section over 50 miles long, through a national forest. Again, few resources will be available, no re-supply areas are around, and it has a lot of swamps.

Packed and ready to go. (Courtesy of Bernie Hester)

Believe it or not, this couple has hiked this trail before. They did a similar hike this year, from February through April. Back then, they spent only a few nights in tents and a lot of nights in hotel rooms. They also skipped some highways that span some gaps in the trail. This time will be different, and more difficult. As Bernie explains on the couple’s Trail Journals website, “we will get dropped off this Sunday morning with what’s on our backs and other than the caches & care packages we are on our own for the next 500 plus miles to the coast.”

Bernie and April say they’re making this hike to raise awareness about the fight against MS. They’re also hoping to raise money for the National MS Society… $100,000, in fact. (You can donate here.)

The hike began on Sunday, Oct. 1 and as of Oct 16 they were about 200 miles into it. Bernie and April expect the full hike to last 35 or 40 days. You can follow the pair at the Trail Journals website or on Instagram.

(This is an updated version of a post that first appeared as my column on www.multiplesclerosisnewstoday.com)

Walk-testing the New Bioness L300 Go

I’ve been using a Bioness L300 for just over five years to counter my foot drop. 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 is a functional electronic stimulator (FES). Each time I start to lift my left leg to walk, it sends a low-intensity electrical pulse down a nerve that runs from my knee to my ankle. That pulse forces my foot to flex upward from my ankle so that my toes don’t drag. The electrical pulse replaces the signal that my brain should be sending to the nerve that my MS has blocked, and it counters my foot drop.

About six months ago, L300 manufacturer Bioness received the OK from the U.S. Food and Drug Administration to market a new model of the L300, the L300 Go. A few days ago, I had an opportunity to “test-walk” the Go, and here’s what I found.

No foot sensor neededL300 Go

The biggest and best difference is that the L300 Go doesn’t require you to use a foot sensor in the heel of your shoe. In the original L300, the sensor is used to detect your motion as you begin to walk. It sends a Bluetooth-like signal to the cuff on your leg, telling it that you’re trying to move. The cuff then generates the pulse that stimulates the nerve in your leg and helps you to lift your foot.

That means that anytime you change shoes, you need to move the sensor to the pair that you’re going to wear. Not only is that a nuisance, there can be a lack of consistency in where you place the sensor in the shoe. Also, because insoles are different, there can be the same inconsistency in the amount of heel pressure that’s required to trigger and to end the pulse.

Naturally, you can’t use the original L300 if you’re barefoot.

3-D motion detection

Without a foot sensor, the L300 Go’s cuff detects the start of your leg motion. This is similar to the process used by the WalkAide, a competitor of the L300. Unlike the WalkAide, the L300 Go has a 3-D-motion-detection system. Not only does it detect the forward and backward motion of your leg, it also detects sideways movement and leg rotation. This allows a physical therapist to adjust the unit more precisely to make it more responsive to each patient’s unique gait. To provide this three-way detection the Go contains four electrodes, compared with the original unit’s two.

No control unit

The original L300 requires you to carry a small control unit, which you use to turn the device on and off, put it into “test mode,” and also to adjust the intensity of its pulse. With the Go, this is all done on the side of the cuff. (If you really want a foot sensor or a control unit, Bioness will sell you one. But why would you want one?)

The test walk

The Go looks and feels like the original L300. Maybe I walked a little faster with it. Maybe it triggered a little quicker. I don’t think that it allowed me to walk any further than normal. On the other hand, it was certainly nice to be able to sit in a chair without having to turn off the unit so that it wouldn’t trigger when I released the pressure on a heel sensor. Unfortunately, I forgot to test the Go walking up and down stairs. My guess, however, is that it would work better than the original unit because its trigger mechanism isn’t dependent upon heel pressure.

What’s it going to cost?

The Bioness rep told me that the Go will cost the same as the current L300. That’s about $6,200. I was also told that there would be a discount if current users wanted to upgrade, but she couldn’t say how much it would be.

Don’t count on insurance picking up the cost. Bioness apparently has had greater success recently getting insurance to pay for the L300 than when I got mine in the fall of 2012. But, it’s a fight and a lot of really good documentation is necessary. The same goes for Medicare and Medicaid. Again, don’t hold your breath waiting.

Do I plan to upgrade?

Nope, not at that price. Even with a discount, the benefit that I’d receive probably wouldn’t be enough to justify the cost of the upgrade, at least not now.

Bioness tells me that it intends to support the original L300 units for “at least the next three years.” So, I guess if my unit breaks down in 2020 or later, I may have to go for the Go.

If the L300 Go is right for you, however, Bioness expects to begin shipping it in October to patients whose doctors have given them a written order.

(This post first appeared as one of my columns on www.multiplesclerosisnewstoday.com).

%d bloggers like this: