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fullsizeoutput_c8I am one of at least 400,000 people in the U.S. who have been diagnosed with MS, a debilitating disease of the central nervous system that disrupts the flow of information within the brain and between the brain and the body. This is my story.

I was diagnosed with MS on Aug. 4, 1998 — almost 20 years ago. For most of those years, I had the relapsing/remitting form of the disease and was fortunate to have had few exacerbations. Now, in the early stages of secondary progressive MS, I am told that the disease is progressing very slowly. (Fingers crossed!)

Don’t get me wrong; MS isn’t a walk in the park. I battle its challenges every day. My symptoms include gait, balance and vision problems as well as fatigue. Hot weather and stress worsen my fatigue. And I develop cognitive problems when I let stress get the better of me.

To manage the disease, I take two medications prescribed by my neurologist, who specializes in MS. One drug limits the progression of the disease; the second medication helps me walk better.

I also have made lifestyle changes that help me feel better. I  take supplements, exercise five days a week and eat a gluten-free, low-carb diet. I try to control my exposure to hot weather and humidity (which isn’t always easy in Alabama), and I try to be mindful of stress.

In addition, I get support from the National MS Society, an organization whose vision is a world free of MS. Through annual Walk MS events, the society provides programs and services to people with MS and funds cutting-edge research.

This year’s Birmingham Walk MS will be held on April 7. I urge you donate today to the Birmingham Walk MS to help provide those programs and services for people with MS in Alabama, and to fund research to find a cure for MS in my lifetime.

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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.

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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 also 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 mobility scooter — and my first to Europe. I had come a long way since last June, when we first vacationed with a 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 with 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 went on 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.

 

Learning the hard way

May 19, 2015

I’m climbing on my soapbox again to speak my mind. This time, I want to tell you about a medical-insurance problem I had a few months ago.

The problem started in November, when I enrolled in a Medicare Part D plan sponsored by Silverscript, which would be effective in January. I selected the Silverscript plan after learning I could add it to my retiree prescription insurance through Southern Company. Had I chosen a different Medicare Part D plan, I would have had to drop my Southern Company prescription insurance.

In early January, I called Silverscript to refill my prescription for Ampyra, a medicine that helps me walk. Ampyra is the only FDA-approved product “indicated to improve walking in patients with multiple sclerosis,” according to the Ampyra website.

I have taken the drug for five years and am accustomed to getting the prescription filled by the CVS/Caremark specialty pharmacy in a day or two. In this case, I was unable to get the medication for 60 days. I spent hours during January and February talking with customer service representatives from Silverscript, Ampyra, CVS/Caremark and Southern Company’s benefits service center, trying to resolve the problem.

By the time I received a month’s supply of the drug in early March, I had fallen and fractured my pelvic bone in two places.

Here is a sample of the problems I encountered:

  • Silverscript quoted me $750 for a month’s supply of the medication. (I had previously paid $40 a month.)
  • When I balked at the price, Ampyra suggested I apply for an income-based Prescription Assistant Program. Thirty days later, I called and found I had not been approved for the program.
  • During subsequent calls to Silverscript, I realized that the company was unaware of my Southern Company insurance coverage.
  • Then, I was told Silverscript couldn’t file a claim for the medication, because both plans were listed as my primary coverage and neither as secondary.
  • When I resolved those issues, I attempted again to fill the prescription. Silverscript told me I would have to pay $750 out-of-pocket when they filed the claim. After the claim was finalized, I would have to file a separate claim with Southern Company. After the second claim was finalized, I would be reimbursed $690 of the $750. (Good news: The prescription would cost only $60.)
  • On the advice of a rep at CVS/Caremark, I asked Silverscript to coordinate the benefits on the claim so I wouldn’t have to pay anything out-of-pocket. The rep at Silverscript agreed. (Sometimes, you just need to know what question to ask.)

In retrospect, I was pleased with my experience with the customer service reps at CVS/Caremark and Southern Company’s benefit service center. They were instrumental in resolving my issues. But the reps at Ampyra and Silverscript – not so much. It seemed they lacked the knowledge and ability to help me.

The good news is that after two months back on Ampyra, my walking ability has begun to improve. The bad news is that the injury to my pelvic bone, which has not healed, makes walking painful and difficult. My doctor has ordered me to rest and limit exercise.

It may be another month before the pain subsides and I can resume my normal activities. Meanwhile, my lack of exercise has weakened the muscles in my legs, so I will need physical therapy to strengthen my legs again.

msaa_logoNOTE: This post is about the important work that the Multiple Sclerosis Association of America (MSAA) does. MSAA observes MS Awareness Month to increase the awareness of this disease.

For readers who are new to this blog, let me explain that multiple sclerosis is a central nervous system disorder that affects more than 400,000 Americans and approximately 2.5 million people worldwide. It is characterized by a variety of symptoms, including fatigue, weakness and mobility issues. While there is currently no cure for MS, there are treatments, therapies and medical devices that help individuals living with the disease manage the pain and discomfort it causes.

“Our mission at MSAA is to improve lives today for individuals living with MS and their loved ones,” said MSAA President and CEO Douglas Franklin. “Our services offer people with MS the assistance they need to live fuller lives, with greater comfort, safety and knowledge. MSAA’s resources, including our website, publications and programs, are all dedicated to providing vital information and support.”

MSAA provides a host of educational resources to the MS community, including events and other programs, such as My MS Resource Locator®, an online database that helps connect individuals with resources in their area; a toll-free Helpline staffed by experienced specialists with a social services background, and programs offering cooling equipment, MRI assistance and other services.

These programs are all made possible, in part, by MSAA’s ongoing national fundraiser, Swim for MS. Participants set a swimming-related challenge and recruit friends and family to donate to MSAA when they reach their goal. Swim for MS challenges can be done in any pool at any time, which makes it an easy way for supporters to raise funds and awareness for MSAA programs.

“March is an ideal time to join Swim for MS,” Franklin said. “To date, our participants have raised more than $320,000 to help fund programs that are making a significant difference in the lives of individuals living with MS.”

https://blogging101march2015.wordpress.com/

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Be warned, gentle readers. I’m back on my soapbox. If you don’t want to hear about my medical-insurance problems, you may want to stop reading right now!

I have heard medical-insurance horror stories from my friends for the past couple of decades, and in recent years, the stories have gotten worse. Some are paying now much higher premiums for medical insurance this year than in previous years, while others search for alternatives to higher-cost plans. Still others have lost their medical insurance and have little choice but to sign up for plans with higher deductibles and reduced benefits. I have now joined this party.

My problem concerns my access to and the price of a medication that I have taken for a number of years. As you may know, I was diagnosed with multiple sclerosis more than 15 years ago. For the past few years, I have taken this expensive medication because it helps me walk better. It is a relatively new drug, so it’s not available in generic form. It’s the only FDA-approved drug that helps people with MS walk better. My choices are quite limited.

Last year, after I exceeded the annual amount that my private medical insurance plan pays for prescriptions, I enrolled in an additional plan — a Medicare Part D plan that came with an additional monthly premium. Yet, the monthly cost for this prescription has climbed from $40 to about $630 a month. And that’s after my insurance pays!

Let me repeat this, because it clearly defies logic: I have more insurance this year than I did last year. I am paying a higher monthly premium than last year. And yet, I am being asked to pay almost $600 more each month to buy the same drug I bought last year.

Needless to say, I cannot afford to buy the drug at this price. After I did a little research into this problem, I found out that the price of the drug changed because my insurance changed. Specifically, the price changed because this new Medicare prescription insurance is now my primary insurance. My private insurance, which had been primary, is now secondary to Medicare. So now, I am no longer eligible for the drug company’s “co-pay assistance program,” which had allowed me to buy the drug for $40 a month.

Going forward, I continue to work with the company that makes the drug so see if there is some other way to reduce the price of the drug. On Tuesday, my case manager suggested I apply for the company’s “prescription assistance program,” which may further reduce the cost of the medication, should I qualify. She told me that the company would send me an application form for the program. Five days later, I am still waiting on that form.

But that’s not all. I ran out of the drug about three weeks ago, and with each day that passes, my ability to walk declines. As a result, I have tried to minimize my walking by curtailing my activities. I already walked with a cane, but now I am even more unsteady on my feet. I stumble often, and if I fall, I could break a bone.

Based on my recent experience with this company, I estimate that I will probably have to go without the drug for a few more weeks. It may be time to bring in the walker from the garage and dust it off.

This isn’t rocket science. This drug company, and probably many others like it, is obviously struggling to serve its customers in a timely manner during this upheaval in the medical-insurance business.

Here’s an idea. Maybe the company could hire an additional staff member or two on a temporary basis to provide more timely service to customers. Just sayin’.

Gentle readers, take note. I will be back in touch as soon as I have more to report.  Wish me luck!

 

 

challenge walk logoI am participating in a National MS Society Challenge Walk in March in Savannah, Georgia, and I’m asking my friends, family members and neighbors for donations. I am also asking those of you who read my blog for a donation.

After participating in local MS Walks for more than 15 years and serving multiple times as a local team captain, I have decided to step it up. And when the MS Society calls this a “challenge walk,” it’s not kidding. It’s a three-day, 50-mile endurance experience that tests walkers’ strength and spirit, and makes an extraordinary difference in the lives of 60,000+ people in the Southeast region of the United States.

This first year,  however, I have decided to volunteer as a Super Crew member — instead of walking. I plan work as a Super Crew member all weekend and find out what it will take for me to walk in the 2016 event — that’s my long-term goal! As soon as this Challenge Walk ends, I will start training for next year’s event.

As a Super Crew member, I will assist with a variety of volunteer responsibilities throughout the three-day weekend. These include working at rest stops, serving meals and staffing the registration table. Each Super Crew member pays a $65 registration fee and raises at least $1,500, just like the walkers do. So raising that $1,500 is my short-term goal!

Your donation will help the National MS Society provide programs and services to people diagnosed with MS and to their families, and it will fund important research into the cause, treatments and a cure for MS. To support my efforts in the 2015 Challenge Walk, please go to http://main.nationalmssociety.org/goto/janehenry_2015.

Thanks in advance for your support!

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As I have mentioned before in this blog, I am a member of an MS aquatics exercise class at Lakeshore Foundation in Birmingham, Alabama. It’s a wonderful class and support group that I believe has helped keep my MS from progressing during the 15 years since I was diagnosed. 

For the seventh year in a row, the class formed a team known as the Lakeshore Splashers and participated in the Birmingham Walk MS on April 5. Most of our 13 team members have been diagnosed with MS. We worked hard this year to raise money for the National Multiple Sclerosis Society’s Alabama/Mississippi chapter.

And less than two weeks after the walk at Homewood Park, the Splashers have already collected close to $5,000 in pledges. That amount includes donations from friends and family members as well as personal contributions from team members. And the money is still coming in!

Congratulations, Splashers, and thank you for helping to make the April 5 Birmingham Walk MS a success!

NOTE: The funds raised through events such as the Birmingham Walk MS allow the Alabama/Mississippi chapter of the National MS Society to continue providing necessary support to people affected by MS.  Newly diagnosed support, lending library, support groups, peer support network, and emergency financial aid are just a few examples of the programs provided by this chapter.  These events also raise funds to continue cutting-edge research to help find a cure for this auto-immune disease that affects the central nervous system.

 For more information about the National MS Society, how proceeds from Walk MS are used, or the other ways you can do something about MS now, visit the chapter’s website at http://www.nationalMSsociety.org/alc.