Author Archives: Jen

Book Review: The First Year – Multiple Sclerosis

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The First Year - Multiple Sclerosis

I have in my possession a great book for newbie MSers. I found it a few years ago at a book store, and I still refer to it. It’s The First Year – Multiple Sclerosis, by Margaret Blackstone. The author is a seasoned writer who has published other medical works as well as poetry and children’s books. And Ms. Blackstone has been living with MS.

The book is part of a series of health guides for first year patients. They all follow a basic structure, which starts off with the first day of having a diagnosis. The guides give advice for days 1-7, then weekly information for the first month, then tips for each month thereafter until the one-year mark of having been diagnosed.

In The First Year – Multiple Sclerosis, Blackstone gives great advice for the first turbulent week after an MS diagnosis. She allows readers to rant, feel pain and confusion, and at the same time she gives practical information about MS basics, tests, ways to build a healthcare team, holistic care, advice about who to tell, and ways to cope.

During the first month, Blackstone explains MS myths and stereotypes, ways to make daily life a little easier, wellness strategies, information on relapses, and facts about the disease-modifying medications.

The First Year – Multiple Sclerosis goes on to describe ways to manage symptoms, cope with stress, eat healthy for more energy, employ alternative medicines, handle health insurance, maintain intimacy and start a family, and learn about trends in multiple sclerosis research. The information is presented in a one-year format, so it doesn’t become overwhelming and it gives those new to MS a way to chart their courses and have some control over an unpredictable situation.

What I love the most about this book is that although it is written for the first year after diagnosis, Blackstone touches on so many topics that are important in any stage of the condition. For more information about The First Year – Multiple Sclerosis, click here…

Posted in Book Reviews

Multiple Sclerosis and Avoiding Isolation

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Support, StockXchng.com

Here are some factors that lead me to my own MS isolation: I have a dread of being out somewhere with no bathroom in sight. I have a trick bladder and bowel, with fluctuating functionings. During remission they are somewhat stable, but not 100% reliable. I’ve had some public close calls, and I’m tired of explaining to unknowing people that I’ve got to go to the bathroom right NOW. I also have some instability with my left leg. During remission I can navigate without a cane, but I am petrified of tripping and falling. I have taken several spills in the past few years, one time seriously banging my elbow on my parents’ concrete porch as I tripped up the small step. I get nervous in new situations where there are a lot of steps or uneven terrain. Finally, if I am having MS lethargy, I want nothing more than to avoid people who might think I just have the flu or a “bug.” I get tired of well-meaning folks asking if I’m okay.

These above-mentioned physical impairments can cause me to hibernate in the house. Luckily, if I can muster up the chutzpah to try new things and go to uncharted places, I’m usually rewarded with new energy, good memories, and new esteem.

Here are some ideas for broadening your MS world and widening your community circle. There are ideas for all levels of ability:

Try an MS organization’s activities

If you are within a reasonable distance of an MS organizational chapter (wherever you live in the world), investigate planned activities with other MSers. Check out local events online or in current newsletters. If you are physically able, try to volunteer for a fundraiser, where you will meet other people with multiple sclerosis who want to help the cause. The great thing about MS societies is that no one questions your level of ability. There is no need for explanation.

Speak with a counselor about coping techniques

Oddly, many people with MS avoid contact with the outside world, but they don’t realize they can seek help for their fears. There are various types of counselors who work with people with chronic conditions. They can help people with multiple sclerosis come to terms with their fears and help them to venture out and free themselves from the self-destructive nature of isolation.

Find an MS support group

If you are not geographically near an MS organizational chapter, you might want to investigate local multiple sclerosis support groups. They can be found online by doing Google or other search engine queries, or you can find them through local hospitals or rehabilitation centers. These are great resources for MSers because trained social workers can provide plenty of information. Often the hospitals themselves have ongoing meetings.

Find support, camaraderie, and information online

Despite your physical condition, you can find lots of support online. There are message boards, websites, blogs, chat rooms, and other ways to keep connected with others. A good source for message boards and chats is MSWorld.org. Another recent discovery (learned through a fellow MSer) is the website MS Friends, where there is a 24-hour peer support line for immediate need. There are also resources and current MS news items. A fairly new MS chat room, hosted by a great blogger and neighbor (from Delaware) can be found at Joan’s blog “A Short in the Cord.” She welcomes all new chatters from anywhere around the globe. And she’s extremely nice! Last but not least, check out the MS Carnival of Bloggers for many many links to bloggers who understand. If you start your own blog, you can submit a blog post to this bi-weekly consortium of MSers. Just contact Lisa, the ringmaster. There are also several blogs that I personally read, listed to the right in the “Blogroll.”

Give credit where credit is due

Venturing out and facing the unknown or making contact with others in the same situation can be frightening. Pat yourself on the back for taking the first step.

Posted in MS and Emotions

Can’t Spell!

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Bill let me know that one of the words in my last post title “The Return of Autumn and Volunteer Work ” was spelled incorrectly. I’ve just fixed the spelling of “autumn” and apologize vehemently for the mistake. Apparently the spell-check only fixes the text. Sadly, I had looked at the title numerous times and didn’t even notice until he said something.

Here’s to a reallllllly boring post with shades of OCD. No comments necessary….

Posted in Blog

The Return of Autumn and Volunteer Work

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I’m glad the summer is coming to an end. We’re still having a few scorching days (90 degrees and above), but it’s summer’s last stand, I suppose. Then things calm down a bit and weather in the 60- 70 degree range takes over for a while. Good. I’m tired of the air conditioners and feeling like a limp dish rag. And I’m looking forward to some new fall endeavors.

I’m back volunteering at the library system. I’ve been there most Fridays ( for 2 and 1/2 hours ) since the beginning of July, helping with their literacy program by processing books for kids in social service custody. More recently I’ve worked with the system’s database to edit volunteers’ info and add new volunteers to the database. And the coordinator of the literacy program will have me come in another day each week to help with some of the PR stuff (phone calls, appointments, etc.) The last piece of the library volunteer puzzle is resuming my role as an English conversation group leader. It’s fun and helpful for foreign-born patrons to practice talking in a casual setting. Almost more like a weekly club to meet other immigrants and converse. I did this for several months in the beginning of this year until working and volunteering flattened me.

I like the whole volunteering premise. There is not so much pressure to be well and “on.” Somehow, with this notion, it makes it easier for me to schlep myself in to volunteer . I admit that I don’t have a ton of hours: less than 10 a week. But as my therapist once said, sometimes it’s important to thoughtfully build up a routine that will have a chance of lasting. So I’ll see what I’m capable of in the coming months. One of the ironies in my life right now is that I got accepted into an online library science program through San Jose State University in July. I’ve taken a non-matriculated class already, and 6 months ago this news of acceptance would have thrilled me, but since I am currently in work limboland, I’ll just wait until this winter and decide whether to pursue something that might not come to pass.

I would like to do some more work with my MS Society chapter. I’ve volunteered at their walk and bike events, but I’d like to be more closely involved with MS patient support. The nearest location is sort of a hike, but maybe there is something I can do from home. That’s the beauty of computer technology.

My last addition is to get to a yoga class, which I’ve been dodging for a while now. I guess I’m a little fearful of falling, since my balance is for shit. So I need to bolster myself up and just go. And Nadja has told me that yoga is great for MS. I keep reading this in MS books, too.

So I’m really just thinking out loud, but I have an easier time seeing things through if I write them down or tell them to someone like you.


Posted in Working/Volunteering Info

Multiple Sclerosis and Isolation

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Isolation, Microsoft.com

Having a chronic illness like MS can be difficult enough, but add to it the tendency to isolate oneself from others, and the burden can become overwhelming. There are various reasons for isolating behavior:

Shame stemming from physical impairments

This affects patients in different ways, depending on levels of outward disabilities. MS patients who can pass as “healthy” people may become panicky about being around others who do not know about their disease. Disclosure is not as necessary until an MSer who looks fine proves otherwise. Vague abnormalities may give someone away: a limp, an unsteady gait, muscle twitches, excessive bathroom usage, sudden exhaustion, and so on. Those with greater outward disabilities have their own issues of being strong in the face of public ignorance and dismissal. Living with these questionable imperfections can take a toll on a person who is tired of explaining multiple sclerosis to others. Sometimes avoiding others outside of an immediate circle is easier.

Not feeling understood by the general population

Let’s face it: MS is weird, sometimes frightening, messy, and not well-understood by most people. I didn’t know much about it myself until I contracted it. People with multiple sclerosis need to feel understood for their limitations, outward symptoms, hidden illness, and their tendency towards anxiety and depression. Family and close friends can often be counted on to be understanding, but what about the rest of the world? The grocery store clerk doesn’t know why Mary is so slow taking her change when the line behind her is piling up. Office mates might not understand that when Jim needs to go to the bathroom, it’s often an emergency. How do people with multiple sclerosis deal with these unknowing folks? Holing up and avoiding others can be a solution.

Lack of MS resources, community activities, and Society support

Not everyone lives near a local MS Society chapter and can get involved with planned activities, use resources, or meet others with multiple sclerosis. Physical isolation is more common than people think. In my state there are 3 MS society chapters, all in the central and northern regions. The southern region, which accounts for 1/3 of the state, has no representation. I live about 35 minutes from my closest chapter, but I wonder what other MS patients down in south Jersey do to feel connected to the multiple sclerosis community?

Physical isolation due to disability

The reasons for this can be various: physical inability to leave the home (unaided), public places that are not wheelchair- or scooter-accessible, lack of a social network due to being out of the workforce or living away from family and friends, moderate to severe fatigue, debilitating depression, and so on. This can be the most heartbreaking cause for MS isolation. Multiple sclerosis can physically flatten a person and make it extremely difficult to get out. The social isolation stems from being at home and not having a good support network. And depression can physically flatten just as surely as any other MS symptom.

****My next MS article, “Multiple Sclerosis and Avoiding Isolation”, will discuss ideas for widening the community circle. In the meantime, find more MS articles, information, and stories in the “Categories” and “Blogroll” to the right.

Posted in MS and Emotions

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
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