April 5, 2015
If you follow my blog regularly, you may already know that I volunteered to work during the three-day 50-mile MS Challenge Walk from Savannah to Tybee Island, Georgia, on March 6-8. I had a lot of fun volunteering during the walk, and I met a lot of people from all over the southeast U.S. — people who have been diagnosed with MS, their family members and friends. (See my March 9 post.)
As a part of a team that represented the National MS Society’s Alabama-Mississippi chapter, I was able to raise more than $1,600 for this regional event. I want to thank each of you who made a contribution! This year’s Savannah challenge walk raised a total of more than $600,000.
But that’s not all, folks. On April 11, I will participate in the Birmingham MS Walk to help the Alabama chapter raise money for cutting-edge research and life-changing local programs for people diagnosed with MS and their families. I have participated in this local event for close to 20 years. In the past, I have served as team captain of the Alabama Power team, and, this year, I am serving as team captain of the Splashers.
The Splashers team is made up primarily of members of the Lakeshore Foundation’s MS Aquatics Class. We are a support group and exercise class all rolled into one. Many of us have been diagnosed with MS, but our family members and friends also walk. I had attended the class for 10 years, and our team has participated in this local walk event for more than 5 years.
If you haven’t made a donation to the Birmingham MS Walk, and if you would like to support my efforts and the efforts of the Splashers team, please go to http://www.nationalmssociety.org/Donate, click on “support an event participant,” and make a donation. Thanks for your help in finding a cure for MS.
March 16, 2015
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.”
March 9, 2015
I began writing this blog entry at 5 am on Saturday, the second day of a Three-Day Challenge Walk adventure to benefit the National Multiple Sclerosis Society. I will post it on Monday, when I return home.
The 50-mile got under way on Friday in Savannah, Georgia, and ended on the beach at Tybee Island on Sunday. I was only one of 100 volunteers who supported the 250 walkers who participated in this regional event, which has already raised more than $550,000 in donations.
Even though the event will be over by the time you read this, you can still support my personal fundraising goal of $1,500 and the overall 2015 Challenge Walk MS Savannah goal of $575,000. To make a contribution, go to my personal fundraising page at janehenry_2015
Thank you for your contribution!
March 2, 2015
My first attempt at the WordPress Blogging 101 course in November was not successful. I can’t even remember why I didn’t stick with it. Regardless, I have enrolled in the course again, and plan to stay with it to the bitter end.
The first Blogging 101 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 teaching news writing 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. (What a zoo that is!)
Anyway, here’s my first post from my 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.)
February 12, 2015
(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.
February 1, 2015
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!
January 20, 2015
I 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!