Category Archives: Multiple Sclerosis News Columns

Where are the Handicapped Parking Spots?

It’s nice when a negative experience can be turned into one that’s positive.

I think that’s the result for a wheelchair-using MS patient following a problem she had at the Mall of America a few days before the Super Bowl. For those not familiar with the Mall of America, it’s a huge shopping mall just outside Minneapolis, Minnesota. Its promotional fact sheet says that the mall covers 5.6 million square feet, or as much as nine Yankee Stadiums, 10 Great Pyramids, 24 Sydney Opera Houses, or 53 Eiffel Towers.

The Super Bowl was in Minneapolis. Both football teams playing in the Super Bowl were staying in hotels at the mall, and a lot of special events also were scheduled, making the shopping center super-crowded. Because of that, the mall blocked off some parking spots near an entrance.

Among the spots that were blocked were several handicapped spaces. And when this MS patient looked for a van-accessible spot to park, she couldn’t find one. She wound up parking in a standard width spot and exiting the van through its rear door, rather than the one on the side. That meant she had to roll into a lane of moving cars and then drive alongside them to get to the entrance that she wanted to use. When she finally got into the mall and complained about the situation, she says a security guard told her the mall is private property and it can do what it wants. Needless to say, she was upset. Like many of us do when we’re upset, she vented on Facebook:

“Thank you Mall of America for blocking All of the handicap parking spaces and telling me that it was your right because it is private property.”

MOA HC spots 2

After contacting the woman who wrote the post to get details about what happened, I also contacted the PR department at the Mall of America. A spokeswoman told me that the spots were blocked for “safety and security” reasons. They wanted to prevent people from crossing the street between the parking ramp and the mall during an extremely busy time, instead, forcing them to cross using skybridges on other parking levels. The spokeswoman also offered to have an executive at the mall explain this directly to this woman.

There’s a key concept in public relations crisis management called the “Three A’s”: Acknowledge the problem, apologize, and make amends. While hardly a crisis, that’s what happened here. The angry MS patient spoke with a senior vice president at the Mall of America and the result was a good one. “There was more parking on the other side, but you wouldn’t have known that from where we pulled in,” she wrote me in an email. “We talked about placing a sign up next time, saying that there is additional handicap parking here. … He apologized for the response I received Friday night. … We said at the end [that] we all have to work a little harder to make life better for everyone.”

And there’s a P.S. to this story. It turns out that the senior VP’s father has MS. I’d like to be a fly on the wall the next time the father and son have a chat.

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

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Heavy-hitting #MS Drugs Step to the Plate

I’m sitting in Florida and the start of spring training is only about a month from now, so please forgive a baseball analogy: The heavy-hitters of the MS-fighting treatments, the monoclonal antibodies (mAbs), are moving up in the lineup.

Five treatments currently are in the mAbs class: Ocrevus, Lemtrada, Rituxan, Tysabri, and Zinbryta. (Rituxan isn’t approved as an MS treatment in the United States. Nonetheless, it’s being prescribed off-label by some neurologists). Until recently, these mAb therapies weren’t usually prescribed as the first treatments for someone newly diagnosed with MS — one or two other disease-modifying treatments (DMT) were tried first. Two reasons appear to explain this. First, some patients and neurologists were concerned about the level of risk with these therapies. Second, some insurance companies and government health plans weren’t happy with their cost.

Costs

However, a recent audit of patients and neurologists by Spherix Global Insights, a business intelligence and market research company, reports an apparent change in attitude about cost:

“While neurologists report payers being at least somewhat restrictive during the current DMT selection process, only 28% of mAb DMT-treated patients were required to step through prior therapies before obtaining access to their current DMT. This finding suggests that payer-influenced treatment sequencing may not be a substantial barrier to increased use of mAb DMTs as induction therapy (the first treatment prescribed) in appropriate candidates.”

Risk versus benefit

A similar attitude change seems to have taken place regarding risk versus benefit. The report suggests that neurologists are increasingly prescribing certain monoclonal antibody therapies for their patients even though they may feel, as a group, that mAbs pose a risk. According to the report, neurologists believe that, for certain patients, the high-efficacy benefit of a specific mAbs made its risk “acceptable.”

Bravo!

In my travels around the social media world, I regularly read complaints from MS patients whose insurance, or government plan, won’t pay for one of the five monoclonal antibodies until that patient had failed two of the more conventional MS therapies. I also read about neurologists who are hesitant to prescribe mAbs, even for a patient whose disease is progressing rapidly. Hopefully, this new report is indicative of a change of attitude by doctors and by payers that will benefit those of us who fight the MS battle every day.

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

Monkey See, Monkey Do: Helping Hands for People with MS

I was just monkeying around while on vacation a few weeks ago, amazed that the animals jumping between my wife and myself were actually listening to the commands of their owner. I knew that chimps and apes were smart, but seeing monkeys respond to commands was new to me.

I had no idea how well some monkeys can be trained until I read an article in Neurology NowThere, I discovered that some of these little guys are helping people with MS and some other disabilities with their daily activities.

These service monkeys are capuchins. They’re considered to be the most intelligent of the monkey family, similar to chimps and, some say, as bright as a 3-year-old. Since moving in with MS patient Corrine Peters, who’s profiled in the article, a capuchin named Glassie has learned to take off Peters’ shoes, retrieve objects, and help get mail out of her mailbox. Capuchins can also be trained to turn book pages and door knobs and even scratch an itch or groom a patient:

The monkeys are trained to do all this at a nonprofit organization called Helping Hands, and it’s not a quick or simple task, as the Neurology Now article makes clear:

“The monkeys are raised from infancy with a foster family to become accustomed to living in a home. At about age 8, they are transferred to “Monkey College” in Boston, where trainers work one-on-one with them — a process that can take up to five years.”

Once a monkey is placed in a home, a trainer spends about a week with the family getting the capuchin and the family comfortable with each other. And then there’s continued telephone support.

It’s also not a simple task to obtain one of these six-to-eight-pound helpers. The application process may take as long as six months and it requires interviews with family members and caretakers and a video tour of a patient’s home. And not everyone is eligible. For example, you need to spend most of your time at home; to be able to control a wheelchair; and there can be no young children in the home. Also, the Helping Hands website cautions that not every patient will find a monkey match.

“The application process is deliberately designed to give us adequate time for this exploration. For most applicants, this takes three to six months. Applicants who complete the entire process may be matched with a carefully selected monkey helper. For others, the process will reveal that a monkey helper is not the right fit.”

But when the fit is right, the match can be a life-changer. Helping Hands’ Erica Noyes, quoted in Neurology Now, says having a monkey “puts the recipient back in control. The monkey doesn’t see the person as injured or ill. It sees him or her as its protector and boss.” And, says Corrine Peters, “Every day is a new adventure.”

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

My Lemtrada Journey: A New Year’s Update

Happy new year to all.

The start of the new year seems like a good time to assess what my journey has been like since my first round of Lemtrada (alemtuzumab) back in December 2016. The road has had bumps and hills and dips. But, overall, Lemtrada has taken me where I hoped it would — a place where my MS seems to be stable and my symptoms seem to be a bit improved.

The first three months post-infusion were a real roller coaster. The lowest dip was in late January of 2017, when I developed a fever, slight headache, and a cough. Naturally, my energy level also dropped. It was diagnosed as strep, and after downing antibiotics for about 10 days I was much better.

Around the five-month point, my wife thought I was walking a little better. That’s still the case, but not always. I can flex my left foot up from the ankle just a little. Cramping in the insoles of my feet, which took place almost every night when I got into bed, has been reduced significantly. An MRI of my brain at six months showed no new, active, or growing lesions. But my brain scan has been stable for many, many years anyway. It’s the lesions on my cervical and lumbar spine that are giving me mobility problems. On the other hand, a physical exam by my neurologist confirmed what my wife Laura had detected: I was walking a bit better. So, all positive stuff.

Other small changes involve my B&B: bladder and bowels. Sorry if I’m over-sharing, but I’m happy to report that my bowels have become slightly more regular and my bladder control has improved, with less urgency and less frequency. Most nights I’m up only once to make a pee trip and, occasionally, I even sleep a straight six or seven hours. That alone is worth the price of admission to the Lemtrada roller coaster.

Are there still problems?

Back in February, I developed an aching pain in both hips. At times, that pain would shoot down one or both legs when I put weight on them. My neuro told me it wasn’t related to the infusions. Some Lemtrada patients suggested that it’s the feeling of my body “making new bone marrow.” The shooting pain disappeared last spring. The ache remains today, but it’s much less noticeable.

Last fall, I developed a pain in one shoulder that runs down my arm when I move it to certain positions. It feels like it’s in my muscle and I’m thinking it may be tendonitis. It seems to improve with rest and staying away from my keyboard (!), and I’m planning to try some physical therapy to see if that helps.

What about my labs?

Lemtrada is designed to deliver a knock-out punch to B- and T-cells that carry an antibody that’s thought to play a roll in destroying myelin. When the immune system reboots, it’s hoped the new B- and T-cells will appear minus that rogue antibody.

Because the Lemtrada treatment attacks parts of our immune system, we “Lemmies” have a fixation with the results of the monthly lab tests that we’re required to have. So far, they show my treatment is acting as advertised. After one month, my CD-4 count was down to 40 (normal is 359-1,519) and my CD-4 percentage was 10 (normal is 38.8-58.5). That showed the drug destroyed a bunch of T cells, as it should.

A month later, the CD-4s were above 200, which is the level at which anti-viral medications are no longer required. That count has hung just below the normal range ever since. That’s to be expected. CD-4 measures T-cells, and we want them to return slowly, over a year or even much longer.

On the other hand, B-cells are expected to return to normal after six or eight months. (That’s why Ocrevus, which only attacks B-cells, requires an infusion every six months.) I’m happy to say that at six months, most of my B-cell measurements were just a little lower than normal.

Then, there’s the TSH count, which measures thyroid function. That’s an important measurement because Lemtrada can impact thyroid function. I’d been on a thyroid medication for a number of years prior to Lemtrada, so when my TSH count began to rise slightly above normal at about the 10-month point, it was a simple matter to correct that by slightly changing the dose of my thyroid med.

Ready for round 2

Well, not quite yet. Normally, I would have had an MRI and a visit with my neuro last month in advance of round two. But my wife and I left Maryland on New Year’s Day to drive to Florida, and my doctor and I decided that the MRI, the exam, and round two could all wait until after our late March return home. Look for my next Lemtrada update in early Spring.

(The post first appeared as one of my columns in www.multiplesclerosisnewstoday.com)

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)

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)

 

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