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This four-part post describes my recent trip to Paris, France. I have posted this information because I hope other people with MS, or a close connection to MS, will read it, and it will make their MS journey easier.

No trip to Paris would be complete without French cuisine and a trip to the Louvre.

Great food!

Most mornings we enjoyed a relaxed breakfast (with USA Today) at the Hotel du Louvre’s restaurant. The menu was extensive and included a variety of fresh pastries that our waiter heated before serving with coffee.

On more than one occasion, we enjoyed a light lunch — a glass of wine and a sandwich — at the sidewalk café across from our hotel. The food was great — even the club sandwich was delicious. As we ate, we people-watched as tour busses unloaded in front of the café and tour groups passed our table on he way to the Louvre.

Most evenings, we had dinner at our hotel or nearby restaurants that the concierge suggested. One evening, we went to an upscale French restaurant a few blocks from the hotel, where I ordered chicken and TH ordered lamb, which were both excellent. However, the highlight of the meal was the best Caesar salad I have tasted, made with small, crisp leaves of Romaine and exceptionally tasty (?) dressing.

The world’s largest museum

On Saturday, our third day in Paris, we walked across the street from our hotel and toured the Louvre, the world’s largest art museum and a historic monument. More than 7 million people visited the Louvre in 2016.

The Louvre Palace was built as a fortress in the 12th century. Once a royal residence, the palace was home to heads of state until 1682, when Louis XIV, moved into the newly built Palace of Versailles outside of Paris. In 1791, following the French Revolution, the National Assembly decided the Louvre should display France’s masterpieces.

Surrounded on three sides by buildings that were a part of the Louvre palace, the museum’s main courtyard features I.M. Pei’s stunning glass pyramid, built in 198.  This public entrance to the museum complex opens into a vast underground area that includes shops and restaurants. A more modest, accessible entrance took us to the same underground area, which was previously used for storage.

As the Louvre is the world’s largest museum, we hit only the high points during our two-and-a-half-hour tour. Oran, our well-informed tour guide, explained that so many items on display at the Louvre that if you looked at each one for 30 seconds, it would take months to see them all. And that doesn’t include the many items in storage.

The Louvre was a royal residence that was home to French heads of state beginning with … through 1836(?), when Louis XIV built Versailles.

Among the many artifacts, paintings and sculptures we saw at the Louvre were the “three ladies of the Louvre”: two statues – the Winged Victory of Samothrace, the Venus De Milo — and the famous painting of the Mona Lisa. Because I was on my scooter, I got to see the painting up close, while other tourists viewed the Ms. Lisa from behind a red velvet rope. I drove my scooter in front of the rope. They say that her eyes follow you wherever you go. And as I passed by her, they did just that.

We also saw artifacts from ancient civilizations, Greek and Roman statues, and Western art from the Middle Ages and later. We didn’t realize until our tour ended that the Louvre’s collection didn’t include any 20th century art. French royalty, beginning with Francis I in the 13th century, collected paintings from European countries. In 1793, these works formed the core collection within the Louvre. But with the opening of the Orsay Museum in 1986, the collection was split up, and works painted after the 1848 Revolution were transferred to the newly renovated Orsay gallery.

We made a note to visit Orsay on our next trip to the French capital. (Yes, we are already planning a second trip in a few years.)

Next up: TH and I tour Paris.

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This four-part post describes my recent trip to Paris, France. I have posted this information because I hope other people with MS, or a close connection to MS, will read it, and it will make their MS journey easier.

No trip to Paris would be complete without French cuisine and a trip to the Louvre.

French cuisine

On most mornings in Paris, we enjoyed a relaxed breakfast at our hotel. The restaurant’s menu was extensive and included a variety of fresh-baked, mouth-watering breads and muffins that our friendly waiter reheated before serving.

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TH enjoys lunch at a sidewalk cafe.

On more than one occasion, we enjoyed a light lunch — a sandwich, a glass of wine, and once, a decadent chocolate dessert — at a sidewalk café across the street from our hotel. Even the club sandwiches were delicious! As we ate, we people-watched while tour groups got off busses and walked past our table on their way to the Louvre.

In the evenings, we had dinner at our hotel or nearby restaurants suggested by the concierge. One evening, we went to an upscale French restaurant a few blocks from the hotel. As usual, Charles walked, while I took my scooter.

The sidewalks were narrow, and we had to backtrack once to a find a curb cut, but we managed to find the restaurant. I ordered chicken and TH (traveling husband) ordered lamb – and both were flavorful. But the highlight of the meal was the best Caesar salad either of us had tasted, made with small, crunchy leaves of Romaine and mouth-watering dressing.

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Venus de Milo by Alexandros.

The Louvre

On Saturday, our third day in Paris, we walked across the street from our hotel and toured the Louvre, the most visited museum in the world. (7.4 million visitors last year.)

We met Oran, our well-informed tour guide, in the courtyard, and she escorted us through an accessible entrance that led to the underground area, which was previously used for storage. She took us through many rooms in the museum, steering us easily to elevators and lifts that connected the museum’s levels.

Among the many artifacts, paintings and sculptures we saw at the Louvre were the “three ladies of the Louvre”: two statues – the Winged Victory of Samothrace, the Venus De Milo — and the famous painting of the Mona Lisa. Because I was on my scooter, I got to see the painting up close, while other tourists viewed the Ms. Lisa from behind a red velvet rope. I drove my scooter in front of the rope. They say that her eyes follow you, and, as I passed by her, they did just that.

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The Coronation of Napoleon by Jacques-Louis David.

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A 9,000-year-old prehistoric sculpture excavated in Ain Ghazai, Jordan.

We saw famous paintings, crown jewels, ancient artifacts, and Greek and Roman statuary.  But we didn’t realize until our tour ended that the Louvre’s collection doesn’t include the works of France’s famous Impressionist painters or other French artwork completed after the 1848 Revolution.

Although those artworks were originally part of the Louvre’s collection, art dated from 1848 though 1914 — including works of the French Impressionists — was moved to Paris’ newly renovated Orsay Museum in 1986.

The Orsay Museum houses the largest collection of Impressionist and post-Impressionist masterpieces in the world.

I made a mental note to visit the Orsay Museum on our next trip to the French capital. (Yes, we are planning a second trip in a few years!)

 

Next up: TH and I tour the streets of Paris.

 

 

This four-part post describes my recent trip to Paris, France. I have posted this information because I hope other people with MS, or a close connection to MS, will read it, and it will make their MS journey easier.

We arrived at the Charles de Gaulle Airport on a warm, sunny day in mid-June and picked up my scooter without a problem. Traveling husband (TH) and I took an accessible shuttle to the Hotel du Louvre’s front door.

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The Louvre

I tooled inside on my scooter, which surprisingly fit into the historic hotel’s narrow elevator. When I opened the red velvet drapes on the floor-to-ceiling windows in our room, I saw an exterior wall of the Louvre Museum, directly across the street. We wandered the streets near the hotel, had lunch at a nearby sidewalk cafe and ate dinner at the hotel that evening.

During our stay in the City of Lights, the friendly and knowledgeable tour guides provided by Sage Traveling shepherded us through secret passageways between rooms at the Palace of Versailles (now a museum), curb cuts at Parisian intersections, on elevators and lifts at the Louvre and through an accessible entrance to Notre Dame Cathedral.

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Our driver

On our second day in Paris, we headed to Versailles for our first tour. A driver picked us up at our hotel in a French car that resembled a PT Cruiser, with extra room between the front and back seats. With the help of a small ramp, I drove my scooter from the sidewalk into the car, where it fit between the seats, and TH and I settled into the back seat.

 

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Tourists line up outside Versailles, waiting to get in.

Our driver took us to the palace, 16 miles out of town, and I got back on my scooter for the tour. After I slowly navigated the jarring cobblestones on the palace grounds, we found our tour group and were escorted into the museum through an accessible entrance. Our guide made sure I was at the front of the group whenever she spoke, so I could see her as well as the items she spoke of.

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The gardens at Versailles

Following a two-hour tour, we had a light lunch and took a self-tour of the gardens, which encompass more than three square miles on the west side of the palace. Although the gardens weren’t as accessible as the palace, we saw manicured lawns, a canal, and parterres of flowers and fruit trees, as well as fountains and sculptures – but the many flights of stairs connecting the gardens kept me from exploring them all. After the tour, our driver picked us up and took us back to our hotel.

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Dinner cruise on the Seine

That evening, we took a cab to the Seine River for an accessible, romantic dinner cruise. We enjoyed French wines with dinner and were serenaded by a violinist as we slowly floated down the Seine past the Ile de la Cite, a natural island where the city stood in medieval days. We had our first views of Notre Dame, the Eiffel Tower and other historic buildings.

After the cruise, I was reminded the word “accessible” has many meanings, depending on the situation. While I got on and off the boat without a problem, I couldn’t take my scooter. Once underway, the boat’s air conditioning was shut off, and I became overheated and somewhat fatigued.

When we got off the boat, no cabs were available on the river level to take us back to our hotel. Because of my fatigue, I was unable to walk up to the street level to hail a cab, so TH walked until he found one and came back to pick me up.

This minor problem was caused by poor planning on our part. In hindsight, we should have asked our hotel’s concierge ahead of time whether cabs would be available after the cruise. Or we could have gotten Uber to pick us up. Instead, we incorrectly assumed we would be able to find a cab after we got off the boat. Lesson learned.

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The gardens at Versailles

Next up: TH and I enjoy French cuisine and visit the Louvre.

 

 

 

This four-part post describes my recent trip to Paris, France. I have posted this information because I hope other people with MS, or a close connection to MS, will read it, and it will make their MS journey easier.

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The Hall of Mirrors at Versailles Palace

Part 1 of 4: Planning the Trip

 When you’ve been diagnosed with multiple sclerosis, as I was 19 years ago, you can expect the condition to weasel its way into your life in the strangest ways. But when you have a major life change, such as getting married, you know that having MS is bound to complicate matters.

After I became engaged late last year and started planning my June wedding and honeymoon, I feared that MS was going to throw a wrench in my plans. When my fiancé and I decided to honeymoon in Paris, we knew we would face a variety of accessibility challenges, including centuries-old buildings as well as sidewalks and streets paved — in many cases — with spine-jarring cobblestones.

Neither TC (my “traveling companion”) nor I had been to Paris, and neither of us spoke decent French, so we knew with needed help in planning an accessible six-day trip.

Sage Traveling helped minimize potential accessibility problems. The company’s website, www.sagetraveling.com, accurately states that the “friendly Europe accessible trip planners at Sage Traveling use our expertise in European accessible travel to create custom accessible holidays for people with all types of mobility issues … .”

By working with Sage Traveling prior to our trip, we located accessible transportation as well as tours that interested us. (The website also provides information about wheelchair rentals, cruises and much more. It includes tips and FAQs about disabled travel.) I would recommend this company – and its website — to anyone needing help with mobility issues on a European vacation.

Paris would be my sixth trip using a scooter — and my first to Europe. I had come a long way since last June, when we first vacationed with a mobility scooter in Vancouver, B.C., and Montana’s Glacier National Park. On that trip, I was hesitant to use the scooter in certain situations. I felt embarrassed that I even needed to use a scooter; I didn’t like the idea of being perceived as disabled. As a result, I tired myself out while walking, when I could have conserved my energy for more enjoyable activities.

Since then, TC, along my scooter and I, have vacationed in San Francisco and Napa Valley in October and visited St. Martin in the Virgin Islands in December. This year, we went to the Dominican Republic in April and Costa Rica in May. In June, we tied the knot, and that’s when we planned the trip to Paris – for our honeymoon. During the process, TC became TH (traveling husband).

During our six days in Paris, our friendly and knowledgeable tour guides shepherded us through secret passageways between rooms at Versailles and curb cuts at Parisian intersections, elevators and lifts at the Louvre and a special entrance to Notre Dame – all of which met my needs for accessibility.

Next up: TH and I visit the Palace of Versailles and take a dinner cruise on the Seine.

 

My most recent post discussed ways in which medical insurance companies limit doctors’ choices about prescribing disease-modifying drugs (DMDs) for people diagnosed with multiple sclerosis. The post was titled, “I don’t want my insurance company to decide how my doctor can treat MS,” and you can read it here:

https://wordpress.com/post/janenhenry.wordpress.com/2218I don’t want my insurance company to decide how my doctor can treat my MS

As a follow-up, I present myself as an example of why insurance companies shouldn’t limit doctor’s choices when it comes to MS DMDs. People with MS can’t necessarily take all of the disease-modifying drugs (DMDs) on the market — for a number of reasons. In my case, I have had to change DMDs four times because of side effects. I am now on my fifth DMD in the 18 years since my diagnosis.

BETASERON

The first FDA-approved DMD, Betaseron hit the market in 1993. The demand for this injectable drug was so great that a lottery determined who would receive it. Only one in every five MS patients who entered the lottery was able to get it. It was some time after the lottery before Betaseron was available to all those who wanted it.

I began taking Betaseron in 1998, immediately after my diagnosis. Starting an injectable drug for the first time isn’t for sissies, but after I got used to the injections, everything went according to plan for a few years. Then, one day, I turned the color of a school bus, and  I was hospitalized for elevated liver enzymes.On the advice of my doctor, I stopped taking Betaseron immediately.

COPAXONE

After six months of recuperation and oral steroids, my liver enzymes returned to normal. My doctor suggested I begin taking Copaxone, another injectable DMD. Again, things went well for a few years, but then Copaxone began causing injection-site reactions, including redness, swelling and pain. After a while, the reactions became too painful, so I stopped taking Copaxone.

TYSABRI

Let’s back up a minute so I can explain about a problem that occurred with Tysabri, the first MS DMD to be administered by infusion instead of injection.

According to WebMD, “After the FDA first approved Tysabri, the drug’s manufacturer took it off the market [in 2004] due to reports of a rare but serious brain infection called PML (progressive multifocal leukoencephalopathy). The drug company introduced a program that requires everyone taking the medicine to register and follow-up in order to find any possible cases of PML as soon as possible. With these safety programs in place, the drug went back on the market [in 2006].”

At about the same time the FDA put Tysabri back on the market, I stopped taking Copaxone. My doctor suggested I start Tysabri, and I did. Then, in accordance with the new safety programs, she tested my blood immediately after my first infusion, and that test revealed antibodies for the John Cunningham (JC) Virus.

According to the Tysabri website, the risk of getting PML is tied to multiple factors, including having antibodies to the JC Virus. The JC Virus is common and harmless in most people—about 50 to 60 percent of the general public has antibodies to the JC Virus in their blood (an indication of infection by the virus)—but it can cause PML in people who have weakened immune systems, such as people taking Tysabri. Because of the antibodies, my doctor took me off Tysabri immediately.

It is important for MS patients to stay on a DMD. When you stop taking one of these drugs and don’t start another one as soon as possible, you increase your risk of an exacerbation and disease progression. But after my experience with Tysabri, I got cold feet about trying other DMDs. I didn’t try another one until seven years later, when the FDA approved Tecfidera, the first oral MS therapy.

TECFIDERA

Tecfidera wasn’t a walk in the park, either. It was a pill, which was great — no more needles! But it came with a couple of side effects that sidelined me. One was flushing. And by flushing, I don’t mean my face turned slightly pink as if I were embarrassed; I mean my red, blotchy skin felt like it was on fire. Not only did it burn, it itched. All day and all night.

I called my doctor’s office and told the nurse about the flushing, and she suggested taking an aspirin a day would help. As soon as I started doing that, the flushing subsided.

The second, longer-term, side effect was nausea–24 hours a day. I hung in there as long as I could, hoping the nausea would subside. The prescribing information indicated it “may” subside within a month. But mine didn’t. So I stopped taking Tecfidera.

AUBAGIO

In the meantime, my MS began to progress; my gait problems and other symptoms began to worsen, so my doctor suggested I try Aubagio, another oral therapy. Unlike other DMDs, Aubagio had been shown to slow the progression of the disease. But when I did the preliminary testing to start the drug, I grew concerned by the need to be tested for tuberculosis. So I chickened out.

During the next year, my gait continued to worsen. Physical therapy didn’t help. I increased the amount of exercise I did, but my gait didn’t get any better. So I decided to try Aubagio.

The drug was known to have a couple of  side effects that concerned me. One was nausea and a second was hair loss. I have been fortunate and haven’t experienced either of them.

But I don’t expect to continue to take Aubagio for a long time. My doctor has already identified another drug expected to be approved by the FDA in the next six months that she thinks will benefit me more than Aubagio, and she wants to move me to that drug when it is approved.

THE BOTTOM LINE

After using five DMDs in 18 years, I don’t think insurance companies should be able to remove them from formularies or to change protocols for their use. We need all of the treatment options we can get. The DMDs are all we have to help minimize relapses and limit the progression of this debilitating disease. There is no cure for MS — at least not yet.

The bottom line is I think it’s wrong for insurance companies to make treatment decisions for MS patients. Those decisions should be left to those with more medical expertise — our doctors.

 

 

 

 

 

 

 

 

 

 

I am troubled by two articles published recently on websites that report on multiple sclerosis (MS). The articles concern actions that insurers are taking to limit the number of MS disease-modifying drugs (DMD) they cover and to change FDA protocols concerning other DMDs.

On August 15, Multiple Sclerosis News Today reported that CVS Caremark has dropped three MS DMDs — Avonex, Plegridy and Extavia  — from its 2017 formulary.

On the same date, MS News and Views reported that Blue Cross/Blue Shield of Alabama has changed its policy concerning the use of two other MS DMDs — Lemtrada and Tysabri. This change went into effect August 1.

The article stated that previously, “BCBS of Alabama, like most payers (insurers), followed FDA (Federal Drug Administration) protocol labeling for MS medication.” Prior to that change, Lemtrada could be prescribed only if a patient “had used at least two other FDA-approved mainstream medications, and the requirement for Tysabri was that the patient had to use two other mainstream MS therapies or Lemtrada.”

The new ruling “requires that for a patient to be insured for Lemtrada therapy, that they first must use three other mainstream MS medications and for those wanting to use Tysabri, they must now use two  other mainstream medications and have not used Lemtrada previously. So if Lemtrada does not work, you are not even allowed to use Tysabri.”

What does this mean to people with MS? 

These actions mean that insurance providers, not doctors, are making treatment decisions for people with MS. Insurance providers do not have the medical expertise that doctors have, and I do not think they should be allowed to make decisions about which FDA-approved drugs they cover and which ones they don’t cover.

In the first article,  Multiple Sclerosis News Today states: “If your prescription insurance is through CVS Caremark, and you want one of those drugs or one of the other 130 that were announced as off their formulary for next year, you can still get it, but you will have to pay full price. Your CVS Caremark insurance will no longer cover those costs unless your doctor is able to successfully appeal the formulary decisions.”

Bear with me while I repeat a part of that last quotation. It says: “…you can still get it, but you will have to pay full price. …” As a part of the research I did for this post, I scanned websites that made reference to the full prices of the DMDs that are available to people diagnosed with MS. I found that on average, the full price of these  drugs is about $60,000 a year, or $5,000 a month. If I didn’t already have your attention, do I have it now?

The author of the article then echoes my sentiments about this situation: “It concerns me that decisions on treatments are being made based on costs and not doctor recommendations. I want me and my neurologist to decide what might be my best treatment and not my insurance company.”

The author of the second article asks the question, “Why the heck is this insurance company messing with your health? Why would they want you to worsen before slowing the course of the disease progression. What basis do they have to not allow you to take Tysabri or Lemtrada more quickly (for quality of life purposes), rather than waiting for another medication to first be used.”

He continues: “Who loses? The answer is pretty simple. We (the MS patients) are those who lose. Not necessarily you or me, but yes, us, being the MS patients. Patients who might need to be switched from a medication treatment therapy (or having been on two) that might not be working for them and instead of that person then having the option to be switched to a treatment plan of either Tysabri or Lemtrada, they may be denied due to the new BCBS policy.

“Then what? Where does it stop that these payers (insurers) are not thinking of your health and instead thinking of their own pockets. What is then to stop other insurers from doing the same thing and what if they decide that you cannot switch your current treatment option because they come up with new protocols for those medications as well”?

I have had to change my DMD more than once because of side effects or other factors. I have already been on five DMDs during the 18  years since my diagnosis. And that will be the subject of my next post. Stay tuned!

In the meantime, if you are a patient or practitioner in Alabama, please consider telling BC/BS what you think about the new protocol that limits the use of Lemtrada and Tysabri.

Check out the links below to the articles quoted in this post. You can click on the second link to get information about contacting BC/BS of Alabama.

https://multiplesclerosisnewstoday.com/blog/2016/08/15/cvs-drops-big-name-ms-drugs-from-2017-formulary/

http://wwwmsviewsandrelatednews.blogspot.com/2016/08/bluecross-blue-shield-bcbs-in-state-of.html

 

 

 

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Driving the scooter to the East Lodge at Glacier National Park

By the time Amtrak gets to Union Station in Chicago, our connecting flight has left Midway Airport without us. The train station is about to close for the night at 1 am, and the airport won’t reopen until 3. So that we won’t be stranded, Amtrak puts us in a sleeper car on the tracks inside the station until 5 am, when we are awakened and led to a taxi that will take us to the airport. We check the bags and the scooter at Midway and get on a short flight home to the Deep South.

When we pick up our bags at the airport back in God’s country, the scooter is nowhere to be seen. Seems it never made it out of Chicago. After a brief delay in baggage claim, I sign a form verifying that I did not pick up the scooter.That evening at home, I get a call from the airport. The scooter has been located! It is delivered to my house, and all is well.

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Glacier National Park

Thinking back on the past 10 days, I realize this experience has taught me that I can enjoy myself much more when I don’t expend all of my energy walking. It hasn’t been an easy transition, but I am sold on the benefits of using a scooter on occasion, rather than walking long distances.

I want to thank my friends who use scooters and who had assured me that it would be a vast improvement over walking everywhere on my recent vacation.

They were right. It took me awhile to warm up to the idea, but now that I’m comfortable with it, I plan to take a scooter with me on future trips that may require a lot of walking.

Using a scooter requires me to be flexible and admit my limitations, but in the long run, it is one more way to keep MS from controlling what I can and can’t do. I plan to purchase a scooter by year-end.

 

 

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