(NOTE: I realize this post is dated Feb. 12, but that is a WordPress error I cannot correct. This information is in fact being posted on Feb. 22.)

Beware, gentle readers, I’m still on my soapbox. It’s been 22 days since my last post, “Lost in the medical-insurance maze,” wherein I told the story of my attempt to work with a pharmaceutical company to obtain a discounted price for an otherwise expensive medication.

Long story short, my medical insurance plan changed at the first of the year, and my price for this prescription increased from $40 to $631 a month. Since that time, I have applied to a prescription assistance program that could reduce my cost for the drug, and I am still waiting to hear if I have been accepted to the program.

My diagnosis of multiple sclerosis adversely affected my ability to walk more than 10 years ago, and this medication is the only FDA-approved drug that improves walking in people with MS. It is a relatively new drug, so it’s not available in generic form. For the past few years, this medication has helped me walk better.

About seven weeks have passed since I have had access to the drug. And even though I continue to minimize my walking as much as possible, my leg muscles now feel weaker and fatigue more easily than before.

Last week, I fell and bruised my right hip. Walking is painful, and I can’t walk as far or as fast as I did before I fell. I’m still making it to the grocery store and the mailbox, but that’s about it.

I hope to hear good news about the medication on Monday, but if I don’t get a letter in the mail from the pharmaceutical company, I will give them another call and ask about my case.

Gentle readers, I will let you know if I am accepted to the prescription-assistance program and can once again afford to take this medication that has done so much to improve the quality of my life. 

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!

I am attending an online Blogging 101 course to improve my blogging skills. Today’s assignment is to blog about who I am and why I’m here. It’s been more than three years since I started this blog and explained what I was doing, so here’s a recap for those of you who were tardy getting to this party.

I was diagnosed with multiple sclerosis (MS) in 1998. After I retired from a corporate public-relations job in 2005, I began working part-time as an adjunct instructor at a nearby university (Roll Tide!), and, at about the same time, I started working as a freelance writer. After a couple of years, I gave up the teaching position, but I continue to freelance.

In early 2011, I joined a writers group. When the topic of blogging came up during a meeting, I announced to the group that I planned to start a blog about MS. As the idea took shape, I decided I would educate others about the condition by blogging about my personal experiences — good and bad. And, because MS doesn’t define me, I also blog about other topics. These days, one of those topics is online dating.

Here’s my first post on the blog, dated June 6, 2011. It was titled, It’s not the heat, it’s the humidity.

Here are three good reasons to have a blog titled “MS with a Southern accent.”

First, a lower percentage of people in the southern U.S. are said to have MS, as compared to those who live in the northern part of the country. In fact, in all parts of the world, MS is more common at latitudes that are farther from the equator. As a result, this blog approaches MS from a slightly more tropical perspective.

Second, Southerners are purported to be natural-born storytellers, so this blog should practically write itself with only a little help from me.

And third, the Deep South is the hottest and most humid place to live in the whole country. Throw MS into the mix, and it’s not pretty. It makes my hair frizzy and my MS symptoms worse. I probably spend at least four months of each year holed up at home so I can minimize the effects of heat and humidity. On the other hand, I have plenty of time to write.

Looks like I found my niche.

(NOTE: The original post has been edited. I corrected typos and made a few changes to tighten it up and improve its accuracy. I guess I’m an editor at heart.)

putting on WalkAideI have purchased a WalkAide System to help minimize foot-drop related to my diagnosis of multiple sclerosis. So far, the device is working well.

Next on my Walkaide to-do list is to get a few simple, yet elegant tattoos on my lower right leg to help me place the device correctly so that it will function properly. (If the electrodes are not in the right place, the device won’t work.)

I’m considering two options for the tattoos. Either small dots that look like freckles or small stars placed to look like a constellation, such as the Big Dipper. The first would probably be less painful, while the second seems more creative. It’s a difficult choice, but nonetheless, I plan to be inked by the end of the week.

One of my favorite things about the WalkAide is that I can wear attractive shoes again — not the el-dorko kind that you wear when you use a leg brace, which I did for many years. (If you are interested in a good deal on some slightly used el-dorko shoes, just holler.)

I am also working to resolve a Walkaide-related fashion challenge. I purchased and wore capris with the device this summer, but the legs of most long pants aren’t big enough to wear a Walkaide inside them.  I don’t own any palazzo pants or long skirts. They’re just not my style, but maybe it’s time to get some.

Even in the Deep South, where I live, the clichéd frost is already on the pumpkin, and this Halloween weekend is the coldest I can remember. I need winter clothes — skirts and pants, because I will move my capris from the closet to the cedar chest soon. I don’t consider bare calves with goosebumps in November to be a fashion-forward option.

Might I receive an invitation to a fancy holiday soiree this year? It’s possible. I guess I should put some thought into getting gussied up in a fancy outfit. And maybe, I should go ahead and plan to borrow a mink coat from a friend, just in case.

(NOTE: If this post interests you, you might want see my previous posts about the Walkaide System.)

Just a couple more items to check off my to-do-list, and I expect to be the proud owner of a WalkAide.

FIRST — EXERCISE, EXERCISE, EXERCISE

I’m exercising even more now that I’m planning to purchase the WalkAide. I do this additional exercise to further strengthen my ankle, leg and hip, and to improve my balance. In some cases, I’m attempting to improve muscle function that’s been impaired for ten or more years. I don’t expect it to be a walk in the park, but it’s doable.

So, in addition to my normal four-day-a-week exercise schedule, I exercise at home as much as I can. Most often, I exercise while watching television in the evenings — especially during commercials.

SECOND — SAVE THOSE PENNIES

After some checking around, I understand that my primary medical insurance provider (Medicare) won’t help pay for the WalkAide in my case. And because it doesn’t pay, neither does my secondary insurance provider (Blue Cross and Blue Shield of Alabama).

I researched the situation, and the way I understand it, Medicare would pay a portion of the cost of the device if I had been diagnosed with an incomplete spinal cord injury. But because my diagnosis is multiple sclerosis, medical insurance will not help me. I further understand that diagnoses of cerebral palsy, traumatic brain injury and stroke also would result in nonpayment by Medicare as well as private insurance providers.

Other funding sources are few and far between. One exception is the Alabama chapter of the National MS Society. I want to thank that organization for helping me with the cost of the WalkAide.

HEALTHCARE IN AMERICA — ONE GAP IN THE SYSTEM

I feel fortunate that I can afford to purchase this device, and I find it unfair that so many others who need it cannot afford it.

This situation is only one example of the many gaps in our country’s healthcare system. This gap keeps many Americans with MS and other conditions from using new technologies, such as the WalkAide, to improve their gait.

NOTE: I want to thank the people who sell the WalkAide system for posting a link on WalkAide’s Facebook page to one of my earlier blog postings about my experience with the device.

FM1I am again testing the Walk Aide. And this time I am taking it seriously and asking a lot of questions.

I have learned three important lessons — how to take care of the electrodes, how to make sure that I put the device in the right place on my leg, and how and when to use the exercise mode.

First: Take care the electrodes.

Before I place the Walk Aide on my leg each morning, I put a small amount of water on the electrodes to ensure a strong electrical connection. When I remove the device at the end of the day, I cover the electrodes with a thick plastic film. To further protect the electrodes, I keep the Walk Aide in a sealed plastic bag. when I am not wearing it. (With proper care, the electrodes can last for a month.)

Second: Put the Walk Aide in the correct spot.

Even though my leg is marked with a permanent marker at the spot where I place the active electrode, that mark can fade or wear off. So I keep a permanent marker with me at all times to re-mark my leg. I am especially careful to re-mark my it after swimming or bathing. For the device to work, the electrode must be placed directly on that mark. (For best results, the mark should be in the exact center of the electrode.)

Third: Use the exercise mode each morning.

The five-minute exercise mode wakes up the peroneal nerve so that the Walk Aide can do its magic. With the device in exercise mode, I sit with my leg fully extended and my ankle supported on a small step-stool, and I watch how the device moves my foot. The Walk Aide is supposed to raise the front of my foot and move it slightly to the outside. When the it lifts my foot during the exercise mode, I try to assist it to strengthen my weak calf muscles. If my foot moves too far up or outward in the exercise mode, I can readjust the dial on the Walk Aide before I start walking.

One more thing while I’m at it: The effects of fatigue

I have worn the Walk Aide an average of eight hours a day. The more I wear it, the less my foot and ankle muscles feel fatigued at the end of the day. Still, I pay close attention to the way my foot and ankle feel. When fatigue begins to set in, the front of my foot doesn’t lift far enough, and I can easily trip and fall. (Past experience has proven that I am a talented and versatile faller. Past falls have caused  injuries ranging from small bruises to a large broken bone.)

Have you used a Walk Aide or Bioness device to help with foot drop? Tell me about your experience.

FUTURE WALK AIDE POSTS:  Doing exercises to strengthen my foot, ankle, leg and hip. And deciding whether or not to purchase the contraption.

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