Monthly Archives: August 2008

MS and the Family Medical Leave Act

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The United Stated Department of Labor protects employed individuals who need to take a medical leave of absence for themselves or for immediate family members. This protection is referred to as the Family Medical Leave Act (FMLA.) It is designed to grant workers an unpaid leave from their jobs for up to 12 weeks per year, and stipulates that a person can return to his or her original position or one similar/ with similar salary. For workers with multiple sclerosis, this can be good and bad news. Here’s why:

  • The FMLA can keep a worker in the workforce, but he or she must have been working for at least 12 months with an employer prior to asking for a leave of absence. This is great for people who have been with the same company or organization for a year or more, but it does not protect individuals (especially MSers) who might be returning to the workforce in a new job after being home-bound. Those trying to test the waters might find themselves up a creek when they do not have 12 months of work invested and then they suffer a long relapse.
  • The FMLA covers workers who are employed at a company or organization with 50+ employees. This works out well for employees of larger companies, but those who might work for small establishments are not protected. Many times people with MS hold part-time jobs with such places.
  • The FMLA cannot guarantee the reinstatement of a high-level, high-salaried (key) employee. It will cover the leave, but the decision of whether to reinstate is determined by the employer. This is trouble for any executives (especially males, who tend to be in higher-level positions) who might fall ill with multiple sclerosis. Later MS onset also correlates with a higher likelihhod of disability, such as with primary progressive MS. Unfortunately, employees who tend to be key players usually fall in this over-40 age range.
  • Probably the trickiest clause in the Family Medical Leave Act is the requirement of an employee to have put in a minimum of 1,250 hours in the year prior to the request for leave. This breaks down to roughly a 24 hour work week. Here lies a big problem. Many people with MS cannot physically handle a 40 hour work week, but maybe they can manage part-time, lower-stress employment. But can everyone work 24+ hours a week, and then manage to make it to the one year minimum requirement? This clause makes it so difficult for people with multiple sclerosis to get back on their feet and try to sustain a new, part-time job. It becomes very frustrating to keep trying to stay employed outside of the home, only to be a person who falls through the cracks in the FMLA’s base.
  • The last problem is the fact that people with multiple sclerosis who suffer regular, long attacks might need to use the FMLA on a yearly basis. But they will be shorting themselves a minumum of 288 hours (the prior year’s 12-week hiatus) for the next work year period, thus making them need to increase their weekly minimum hours to almost 30, just to qualify for the FMLA again. Most people who use the FMLA use it once and don’t always use the entire 12 weeks. People with multiple sclerosis who are able to work outside of the home often need the entire 12 weeks on a yearly basis. But with all of its exceptions and restrictions, do many MSers even have a shot at sustaining this yearly Act? An inquiring mind would like to know..

*For more information about the Family Medical Leave Act, visit the US Department of Labor’s website.

Posted in Working/Volunteering Info

What is Multiple Sclerosis?

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Erase MSMultiple sclerosis is a mysterious, unpredictable disease that even has doctors puzzled. It is thought to be autoimmune in nature (the body’s own immune system, for whatever reason, attacks its own tissue.) MS is also a neurological disease, because the nerves of the central nervous system (within the brain and the spinal cord) are the targets of the attacks. The myelin, or protective nerve covering, is what is damaged during an MS attack, causing scarring or lesions on the nerves. The name “multiple sclerosis” is derived from the various scarrings that are found on an MS patient’s MRIs. Because of these nerve scarrings, nerve functions can be impaired or completely lost.

MS Statistics

Doctors are currently trying to make connections to different reasons why some people develop this neurological illness and are considering genetic, environmental, or even possible viral links as contributing factors. Currently, researchers can trace patterns of increased cases of MS to individuals who live in cooler, more temperate climates, and have noticed that the closer a person lives to the equator, the less likely they will be to contract the disease. Although there is no conclusive genetic link, siblings and particularly identical twins have the greatest chance of developing multiple sclerosis if another sibling already has the disease. Doctors are also investigating the possibility of people contracting MS if they suffered from a certain viral infection at a younger age. Finally, there appears to be a gender preference as women are more likely than men to develop multiple sclerosis; however, the disease has been known to affect men more severely.

MS Symptoms

Patients develop symptoms due to multiple sclerosis attacks. These can also be considered areas of impairment, since they signify nerve damage. MS symptoms can include:

  • tingling/numbness in the limbs, torso, and/or face
  • pain
  • burning sensations
  • weakness
  • fatigue
  • tightening sensations (especially in the torso or legs)
  • bladder and bowel weakness
  • visual problems
  • tremors
  • muscle spasms
  • vertigo
  • unsteady gait or trouble walking
  • swallowing/speech issues
  • cognitive problems
  • seizures

Symptoms/impairments depend on the areas of nerve damage, and the symptoms can fluctuate throughout the day or throughout a lifetime. Some are permanent and others are transient.

Types of MS

The patterns for multiple sclerosis tend to fall into one of four categories. The first, relapsing/remitting, is the most common form at onset. There are attacks on the nerves (relapses), then the body recuperates (remittance.) Nevertheless, damage from these attacks is cumulative, and disability can increase as a person suffers more attacks. Secondary progressive MS can emerge after years of the relapsing/remitting variety (although not always), and is characterized by a steady decline with no more attacks or recoveries. Primary progressive multiple sclerosis is characterized by a continual decline from the onset of the disease. Finally, relapsing/ progressive MS seems to exhibit occasional flare-ups while all along the progression is continuous.

MS Treatments and Outlook

Current treatments for multiple sclerosis include disease-modifying drugs, such as Avonex, Betaseron, Copaxone, and Rebif. These medications are taken as injections and are known to slow the progression of multiple sclerosis in many patients. Certain types of steroids are used on patients with serious relapses in order to stop inflammation and damage to nerves. Novantrone & Tysabri, other multiple sclerosis drugs, are used in MS cases when treatment with the above ABC drugs fail to show results. Future prospects include oral medications and possible stem-cell remedies. A cure is thought to be around the corner, and with so many new medications created in just the past 15 years, this seems like a definite possibility.

*For further reference, please visit The National Multiple Sclerosis Society and The Mayo Clinic.

Posted in Basic Info

The MS Blog Becomes the MS Website

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I’ve really enjoyed blogging about my MS journey. It’s therapeutic to just explain all of the weird, scary things that have happened to me. And to know that others, especially from the blogging community, have read and understand. So I’m a little sad that my personal multiple sclerosis story will now be put on hold as the rest of this MS website begins.

This site will start branching out into different areas, mainly: articles about the types of MS, medications/treatments, helpful living tips, bios on famous (and not so famous) people with MS, latest MS news, healthy/ easy recipes for better nutrition, and so on. There will still be blog entries about my life with the MonSter, but the bulk of the website will now begin. Lots of key word optimization, high repetition of the words “multiple sclerosis” and “MS”, selected advertising that is appropriate for the content, and tons of information that is probably too elementary for the veteran MS blogger. And dare I say MUNDANE? So as not to preach to the choir, this post explains the turn of focus and the forthcoming articles and info for those searching the internet for MS information and news. For newbies and people who basically just want the facts. Kinda boring, yes, but I actually love writing about health topics, and the need for researched information that isn’t presented in a cold, clinical manner is so important.

Feel free to continue to visit, because I’ll still be doing some blog posts, but this is a forewarning so as never to patronize readers or bloggers. And yes, it’s always free to read if you just don’t click on the ads! I will still enjoy reading others’ blogs, and have compiled my own group of ones which are heartfelt, informative, hilarious, and multi-faceted. I admire veteran bloggers because I honestly cannot even keep a steady personal journal— I’m lucky if I check in with myself once or twice a month! So I’m happy that I can provide links to good blogs.

And so starts the long, arduous process of building a free-standing website. Really a labor of love.

Posted in Blog

Book Review: The Four Agreements

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The Four Agreements

I just came back from volunteering at the library and I’ve had a certain book on my mind. I read it during some MS relapses, just to remind myself of what’s really important. I’ve read it again recently because I’m probably jonesing for some good non-fiction and haven’t found any. Nevertheless, here’s one of my favorite books and the reasons why:

The Four Agreements by Don Miguel Ruiz has simple, layman’s techniques for living a joyful, true existence. This Mexican spiritualist explains his Toltec beliefs that transform a life of suffering and sadness into a vehicle for optimism and growth. He uses four simple ideologies to help steer people in the direction of happiness, no matter what their circumstances:

  • The first agreement is “be impeccable with your word.” It doesn’t quite mean what it implies. I initially thought it meant “don’t lie or make empty promises”, but it is quite a bit more. Ruiz explains that whatever comes out of our mouths should be honest but also pure in intention. People are guilty of slandering others and passing along useless gossip and negative energy. I know I’ve been guilty of such. Ruiz says the first step to happiness is to remove such verbal weaponry from your life. Then intention can become pure and true.
  • The second agreement is “don’t take anything personally.” Sounds simple enough, but there’s more to it. Everyone has his or her own agenda, thoughts, background, personal situation, and so on. What comes out of a person’s mouth is merely a reaction to his or her own situation, and nothing to do with you personally. It might seem that way, but because we all have struggles and personal lives that are not completely apparent to others (usually), we can never take insults or ignorant responses personally.
  • The third agreement goes naturally with the second agreement: “don’t make assumptions.” Again, Ruiz mentions, it is impossible to know everything about a situation or a person, so to assume things about others can make you take information or words personally. Then you become caught up in the vicious cycle of slandering and then being slandered. Tough, unproductive cycle. Ruiz suggests taking everything with a grain of salt, because you really only know fully about yourself. The rest of life is made up of other people’s realities.
  • The fourth agreement (which is my favorite and probably a great mantra for people with multiple sclerosis): “always do your best.” This is just a matter of taking each day and giving honestly what you can. Today’s best might be venturing aided or unaided down the street. Tomorrow’s best might be intently reading a good book and gaining knowledge. Ruiz emphasizes the importance of achieving the first 3 agreements to leave the mind and body pure to accomplish one’s personal best. And one’s personal best is always enough.

I would add one more personal agreement that I try to follow: “have a sense of humor.” Because it’s gonna take a hell of a sense of humor to stick to the rest of the agreements! Find out more about The Four Agreements…

Posted in Book Reviews

MS and Medicare Parts A, B, and D

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Google Images

I just came back from dropping my Medicare parts A and B coverage. I stopped in at my local social security office and opted out. Here’s why:

  • My husband has us covered under his small (less than 35 employees) company coverage, and even though it socks us with an almost $800 monthly premium (combined), it doesn’t cover dental or vision expenses, and it has a $30 copay for all medical visits, it DOES cover my Betaseron ($2k/month) in full, so there’s no copay.
  • I investigated Medicare’s coverage. Part A covers hospitalization, and it is similar in coverage to Bill’s company plan (and free with part B), but I have some issues with Part B, Medicare’s medical coverage. There is approximately a $97 premium each month (fine) and a $135 yearly deductible (again, fine.) But after the deductible, Medicare recipients pay 20% copayments on many medical costs. Even on Xrays/ MRIs. So routine MRIs, something that multiple sclerosis patients see as the norm, could end up costing about $4k a year or more, with a patient copayment of $800. Bill’s small company insurance copayment: $30/ per visit x 2 visits = $60. Just the crazy cost for MRIs put up a red flag for me.
  • Next, I learned about Medicare Part D, which I am not automatically enrolled in and must elect. My father warned me about this prescription plan. He and my mom, who made modest livings as public school teachers, really lucked out in their retirement. They both have solid pensions and my father’s good health coverage (paid for by 25+ years of work as a guidance counselor.) So they have Medicare and also their own good coverage for prescriptions. Part D is a good plan if the recipient is in general good health and doesn’t have many expensive presciptions. Ironically, this is the coverage for seniors, who tend to acquire more and more health problems as they age, causing them to need more and more expensive prescriptions.
  • For a lot of people with MS, good drug coverage is very essential. But when I asked for the best cost for my Betaseron (there are various drug plans under Part D), the best the Medicare rep could come up with was a $250 yearly deductible (fine) and a monthly copay of about $514 until I reached about $4k (after 8 months), and then the copay would go down to approximately $180/month. In the beginning of the year, the whole deductible and higher monthly copay would start again. UGH. Medicare Rx coverage: at least $514/month for most of the year v. Bill’s plan of a flat rate of about $390/month per person for prescription, medical, and hospitalization. And don’t forget the monthly Part B premium of $97. The choice seemed clear. I picked the lesser of the 2 evils.

Here is the part that makes me a little nervous about my decision: I will be getting the monthly Medicare premium back in my social security check, but because I opted out, if my husband somehow loses his job and we don’t have immediate coverage, to get back into Medicare coverage it will cost me another 10% on top of the Medicare $97 monthly premium for every year after I dropped the coverage. So if I find myself needing Medicare in, say, 14 years, I will then pay a monthly premium of about $240+/month for pretty mediocre to bad coverage. That’s not even counting the yearly increase in the original monthly premium. Or the $514+ monthly copays for the Betaseron!

If my husband worked for a larger company (100 employees or more), then I would incur no penalty for dropping and then reinstating Medicare at a later date. Fortunately I can reinstate it when I’m 65 with no penalty. Hopefully something better will come along in the meantime.

Posted in Social Security/ Disability/ Medicare

Tommy Hilfiger Fights Against MS

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Tommy Hilfiger, Google Images

I have a bit of an interest in the fashion industry. Back when I was in school, I did a 1-year program at the Fashion Institute of Technology (NYC) and got a minor in buying and merchandising. It was one of the most interesting years of my life. Lived in midtown the fall semester (on-campus housing), then moved downtown to the East Village with an old friend during the spring semester. I enjoyed Manhattan and all its eccentricities, its art and music scenes, as well as its unbeatable fashion industry. Although I have to admit that I now pretty much dress like a page from the weekend-wear section of an LL Bean catalog.

Despite my lack of fashion these days, I still really like Tommy Hilfiger’s clothing and accessories, largely because they’re accessible to the general population. The products are durable, and you can get them on sale at Macy’s (and Macy’s online) and find great buys at Marshalls or TJ Maxx. So maybe you’re wondering why I’m going on about such a fluffy topic……Well, Tommy Hilfiger, as some people know, has a sister with multiple sclerosis.

Hilfiger, in collaboration with Nancy Davis, an MS patient and known philanthropist, put together a yearly event called “The Race to Erase MS.” This year marks the 15th event. Now I have read Davis’s book, Lean on Me, about chronic illness, and although I don’t think she represents the general multiple sclerosis constituency (lower- to upper-middle class and moderately to severely affected by the disease), I feel that anyone who has the connections and money to help the MS cause should certainly do so. And I’m happy to see that Tommy Hilfiger does what he can with this event, which features a high-end auction (including jewelry and luxury trips) and a celebrity fashion show. Hilfiger has also designed various orange (MS’s new identifying color) fashion items, including a bracelet and t-shirt, and all the proceeds from these sales and the auction go to the “Nancy Davis Center Without Walls” program. This is a collaboration of the top multiple sclerosis research facilities in the nation: Harvard, Johns Hopkins Hospital (Maryland),Yale University School of Medicine, The Mellen Center (Ohio), Oregon Health Sciences University, and the Universities of California and Southern California.

Celebrities form the honorary committee: Teri Garr, Tom Arnold, Tony Danza (and wife), Sela Ward, Don Henley (and wife), Natalie Cole, Dustin Hoffman (and wife), and others. The patron committee boasts even more famous names. The event takes place out in LA in the spring, with a next day meeting (free and open to the public) for anyone who would like to pose questions to the represented research facilities.

This 2 day event raised more than $2.5 million in 2007. The price of tickets for 2008 started at $1,000. It’s nice to see that wealthy, high-profile people are putting their money where their mouths are and using their celebrity to help raise a hefty amount of money for multiple sclerosis.

For further reference:

Posted in Fundraising Info
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