November 12, 2015
I guess I’m finally getting serious about this gluten-free diet I have been on for two years. I had lunch at The Club in Birmingham, Ala., today, and I didn’t have an orange roll. I wasn’t even tempted!
Anyone familiar with the orange rolls at The Club will understand.
August 12, 2015
Do you remember that medical-insurance problem I wrote about earlier this year? The one where I was told in January that I would have to pay $750 a month for a prescription for which I had previously paid only $40 a month?
Well, I thought the story had ended happily when I was told in early March that I would be paying $60 a month for the drug. So, I ordered the medication immediately and refilled it each month for the next four months.
Then, in July, I got the first bill. The amount due was $572.43 — for the first month’s supply. Math isn’t my long suit, but it didn’t take much to figure out that if the price stayed the same for the next four months, I could end up paying more than $2,800 for five months of the medication, as opposed to the $300 I was expecting to pay.
Long story short, I once again contacted the HR Direct folks at Southern Company four weeks ago, and I expressed my concern about the price. I have touched base with them each week since then, but so far, the news has not been good.
August 3, 2015
If you have MS and have lived through one summer in the Deep South, you deserve a major award, such as the leg lamp in “A Christmas Story.” This summer is my 17th down here since I was diagnosed — my 17th summer to experience the heat sensitivity associated with MS.
The year 2014 was the hottest on record, and this summer, the eastern part of the United States has been hotter than usual, once again. In July, temperatures stayed in the 90s – often the upper 90s, while heat-index values were in the 100s, and the humidity topped 90 percent in my neck of the woods. Although the area experienced milder temperatures and lower humidity this past weekend, temperatures are forecast to climb to 95 degrees today and tomorrow.
In 1890, Dr. William Uhthoff first described the link between heat and MS. Known as Uhthoff ‘s syndrome, it occurs when exposure to heat or strenuous exercise temporarily worsen MS symptoms. As little as a one-degree elevation in body temperature can affect nerve conduction and cause a feeling of weakness, especially in the arms and legs.
Before MRIs and lumbar punctures were used to diagnose MS, patients suspected of having the disease were subjected to a hot bath test. If the patients experienced an increase in weakness or fatigue or any loss of vision when submerged in hot water, they were diagnosed with MS.
Healthline News cited a 2011 study in which Swedish researchers found that more than 70 percent of all MS patients experience some degree of heat sensitivity. According to the study’s authors, “The most striking result of this study is that heat sensitivity is significantly correlated with — and … appeared as an explaining factor for — the most incapacitating symptoms of MS: fatigue, concentration problems, and pain.”
According to the National MS Society, “It is important to remember that the heat generally produces only temporary worsening of symptoms. It does not cause more disease activity, such as demyelination or damage to the nerves themselves. The symptoms generally reverse quickly when the source of increased temperature is removed.”
Keep your cool
So how can you keep from overheating? The National MS Society recommends staying in an air-conditioned environment during periods of extreme heat and humidity. Consider using an oscillating fan while exercising indoors or in a cool pool (less than 85 degrees).
During outdoor activity, you can minimize overheating by using cooling products. When dampened, cooling products, such as neck wraps and bandanas, display unique cooling properties. You can also stay cool by wearing a vest with insulated pockets that hold small ice packs.
You can order cooling equipment from the Multiple Sclerosis Association of America. If you have questions about the MSAA Cooling Program, you can call MSAA at 1-800-532-7667 or send an email to email@example.com. You can also download an application for the cooling program at www.msaa.org.
Everyday Health suggests additional ways to manage heat intolerance from MS, such as:
- Carrying a bottle of water with you throughout the day, and drinking frequently
- Enjoying a cool treat such as chilled juice or frozen treats to keep your body temperature down.
Simple lifestyle changes can make a difference, too. Consider gardening or running errands in the early morning or late evening instead of during the heat of mid-day. Make sure you always have shade available, even if it means carrying an umbrella everywhere you go. Wear a lightweight, loose, breathe-able clothing, light colors and a hat. Duck into air conditioned buildings as often as you can.
If, despite your best efforts, you become overheated, remember to remove yourself from the heat source as quickly as possible. I have found that after being outside on a hot day, I can cool off by applying refrigerated aloe vera gel to my arms and legs. If you get extremely overheated, you might benefit from taking a cool shower or pouring a bottle of cold water on the top of your head.
Do you have other suggestions to help people with MS beat the heat? Send me your ideas in a comment, and I will include as many as I can with the next post.
June 22, 2015
An April 2014 Readers Digest article titled Little Secrets about Big Websites included an item about Gary Kremen, who founded Match.com in 1993. The item went on to say: “In the two decades since, the site has led to untold numbers of dates, engagements, and marriages. It has also led to at least one very notable broken heart: Kremen’s: Yes, after the founder of Match.com and his girlfriend broke up, she married someone she’d met on Match.com.”
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.
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.”