Monthly Archives: March 2011

Day 5, MS Awareness Week: Walking the Walk

The following is a reprint of an item on my Walk MS Personal Page [link no longer available].  I’m reprinting it here as the final installment of my series of blog posts to mark MS Awareness Week.

“Walking the Walk”

That phrase is taking on new meaning for me this year. This is the first time I will be walking for Walk MS 2011 in Reston. I’d volunteered before, but I wanted to actually walk.
You see, I have MS; and because of the unpredictable nature of the disease, I’ve tried to live by the motto “Do it while you can!” Because there may be a time when I can’t. That is the nature of this unpredictable disease.
So, that’s why I’m walking this year. I hope you can join me or support me by making a donation [secure link]. [last year’s link;  no longer available]

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If you missed the previous 4 posts this week, here are links to them:

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Day 4, MS Awareness Week: Ways to Help

Here’s what I’ve published so far to mark MS Awareness Week:

Today I’ll provide you with various ways you can help make this “A World Free of MS.”

The National Multiple Sclerosis Society (NMSS) has a number of its own donation methods:

  • Workplace donation/non-government: NMSS is listed in the Community Health Charities of America directory.
  • Workplace donation/US Government:  NMSS is listed in the Combined Federal Campaign (CFC).  To donate, select charity # 11409.  Often the local NMSS chapter is listed as well, so you can select them to also receive a contribution from you.
  • Fundraising events:  Bike MS, Walk MS, Challenge Walk.  There is something for everyone here.  You can either sign up and get sponsors or sponsor someone who is walking or biking.  (I am walking in the MS walk in Reston, Virginia next month.  See my walk page for more information.)
  • The NMSS has more information in its donation pages.

The Multiple Sclerosis Foundation (MSF) has its own set of donation opportunities.  Details are here.

The Myelin Project funds research to find a cure for demyelinating diseases, such as the leukodystrophies, which are genetic and multiple sclerosis, which is acquired.  Their mission statement says it all:”The Myelin Project exists to end human suffering from demyelinating diseases.” Remember the movie “Lorenzo’s Oil“?  Lorenzo Odone was the child in the movie who developed adrenoleukodystrophy, a demyelinating disease.  Sadly, Lorenzo died in 2008; but you can make a difference by donating to the Myelin Project so that more research can be funded.  (CFC #: 11222.The Myelin Project is a 501(c)(3) non-profit organization.)

Day 3, MS Awareness Week: Blogs and More

Here’s what I’ve published so far to mark MS Awareness Week:

Today I’ll provide you with links to a number of blogs and web sites that have a lot of information about MS.  The blogs are, in general, written by people who have MS.  They give you a unique peek inside life with MS.  I hope you enjoy them.

BLOGS

  • Wheelchair Kamikaze – The Rants, Ruminations, and Reflections of a Mad MS Patient.  This blog won the medGadget “Best Patient Blog of 2009.” Interesting, sometimes feisty, always enjoyable. [last post: 3/14/11]
  • Multiple Sclerosis BlogLife With MS Trevis Gleason’s upbeat blog celebrated it’s fifth anniversary this week.  One of my go-to blogs.  [last post: 3/14/11]
  • Blindbeard’s Multiple Sclerosis Blog – Ataxia Through Hell This blog has been around since 2007.  Quite personal observations about life with MS.  [last post: 2/13/11]
  • Erik’s Multiple Sclerosis & Lyme Blog – My life of symptoms, doctor visits, seemingly endless and massive semi-tax deductible “contribution” to the pharmaceutical industry, and getting better A very good blog. Eric has both MS and Lyme.  This blog has been around since 2004, but I’ve only discovered it recently.  Eric was a prolific poster in past years; but he has not posted since 2010. Hope everything is okay with him.  [last post: 9/12/10]
  • Multiple Sclerosis CaregivingDoing Your Best Does Make It Better This blog is penned by a gentleman whose wife has MS.  If you’re a caregiver for someone who has MS, read this blog.  Even if you’re not, you might find it interesting. [last post: 3/13/11]
  • Down the MS Path – A Multiple Sclerosis Blog for Everybody . . . and a few related health issues, too Written by a woman who has had MS for more than 15 years. Some good posts. [last post: 8/22/10]
  • Other blogs about MS (Google search)

WEB SITES

  • MS My Way – Using Technology To Live Better With Multiple Sclerosis This is a great site that attempts to connect people with MS with the assistive technologies (AT) that might help them.  It addresses AT solutions to vision, cognitive, and dexterity issues that MS patients face.  A fun section called “Brain Games” for some “cognitive exercise.” Test your brain!
  • Move Over MS – Changing the Way You Live With MS This site is owned by Accorda Theraputics, which “is dedicated to developing therapies to restore neurological function in people with MS.” There are some good articles on life with MS.
  • How Does MS Feel? Site created by a person with MS.  Check the link “So How Do We Feel” to see what MS is like.

MULTIPLE SCLEROSIS ADVOCACY GROUPS

  • National Multiple Sclerosis Society Part of their “About the Society” page says:  “MS stops people from moving. We exist to make sure it doesn’t.” Enuf said! Worth a look for just about any type of information about MS you seek. They are also the sponsor for the Walk MS events. (My Walk Page.)
  • Multiple Sclerosis Foundation This is another great resource for people with MS, their families, and caregivers for people with MS. They offer some grants for caregivers.

GENERAL INFORMATION WEB SITES

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Day 2, MS Awareness Week: Info About MS

I provided a fair amount of information about MS in a post I wrote earlier this year, so I won’t rehash it. But keep reading for more information about MS.

One of the takeaways from that post is the MS is unpredictable through its course as well as in its outcome. Some people with MS may exhibit minimal symptoms, perhaps because of the location and severity of lesions in the brain or other parts of the central nervous system. Others are severely impaired through much of their course of the disease.  Others begin with mild symptoms, but progress to severe disability. There is no way to predict much of anything with MS. (Even whether you’ll “feel good enough” to attend that big social event you’ve been planning.)

“But you look so good!” A variant of this is “But you don’t look sick.” Those of us with milder forms of MS may have heard this more than once when people learn we have MS.  This may be why I felt it would have been more trouble than it was worth to disclose that I had MS.  For the most part, I required no accommodations on the job. (It’s not like I had a job that required manual labor in 95-degree heat.  MS and heat don’t mix well.  There is evidence that raising core body temperature leads to exacerbations or the flare-up of MS symptoms.

According to the National Multiple Sclerosis Society (NMSS), “approximately 400,000 Americans have MS, and every week about 200 people are diagnosed. World-wide, MS affects about 2.5 million people.”  Most people are diagnosed between the ages of 20 and 50, which coincides with primary wage-earning period of their lives.  The diagnosis for some coincides with the time when they are starting families and jobs. (I was diagnosed at age 36; but, as I look back, I had had symptoms some 6 years earlier.)

The diagnosis. Just as the disease is notoriously unpredictable in it’s course it is sometimes difficult to diagnose.  Symptoms can sometimes mimic other diseases and lead physicians to consider other diseases, not MS.  Some patients can go years without a definitive diagnosis.  In my case, I received a diagnosis of “optic neuritis” back when I first exhibited signs of MS. But without other evidence (e.g., nystagmus or an MRI), I was left with the “optic neuritis” diagnosis. (Optic neuritis is often the first symptom of MS for many people.  It’s a classic “entry symptom.”)

So what causes the symptoms? Because MS is an autoimmune disease, the symptoms are caused when the body’s immune system attacks the myelin coating of nerve fibers in the central nervous system. Myelin is destroyed and replaced by scars of hardened “sclerotic” tissue. These sclerotic patches are called “lesions.”

Myelin can be compared to the insulation on electrical wires.  If the insulation is compromised, the transmission of electrical impulses is degraded.  The same goes with myelin. When it is compromised, nerve conduction is impaired.  Anything that is controlled by these nerves can be  affected.  For example, if there are lesions on the speech centers of the brain, a patient’s speech may exhibit symptoms.  The NMSS has more information about myelin, if you’re interested.

Can it be fixed?  A related question: “Can MS be cured?” My layperson’s answer would be that if the myelin can be repaired/replaced, yeah, MS can be cured.  But that’s a big “if.” There is currently research into this. I think this is the holy grail. But right now there are disease modifying drugs [PDF] as well as drugs to treat the symptoms.  But no, there is no cure.

Want more information? The National Multiple Sclerosis Society and Multiple Sclerosis Foundation are two places to start. The Wikipedia page on MS also has quite of bit of information, with 70-some references and some external links for further reading.

TOMORROW: I’ll look at MS from the patient’s point of view. I’ll highlight some blogs and web pages that provide a glimpse into what life with MS is like.  I hope you’ll come back tomorrow to read it.

Help Me Mark MS Awareness Week

As I noted in a previous post, I’ll be marking MS Awareness Week all this week.  It runs March 14-20, 2011.  What you can expect this week:

  • I’ll give you some information about multiple sclerosis, the people who have the disease, and groups that are working to improve the lives of those with MS.  I’ll also provide you with ways to get more information about MS.
  • I’ll introduce you to some of my favorite blogs by people with MS (PWMS?).  Some of the stories bring into stark relief the trials that PWMS must endure because of the disease and sometimes because of the medical and pharmaceutical communities.  Have a read to peek inside the life of someone with MS.
  • I’ll provide you with ways you can help make this A World Free of MS.  There are MS Walks (both long and short), MS bike rides, and MS golf tournaments.  There are also generic ways to donate directly to MS-related groups.
  • Also (and don’t say I didn’t warn you), I’ll be asking for your support to help me meet my fund-raising goal for the MS Walk in Reston, VA.

I’m changing my Twitter avatar and Facebook profile picture this week to raise awareness of “all things MS.”

I hope you find my posts this week interesting, informative, and thought provoking. Thank you for reading.

When Nice Things Aren’t Anymore

I was thinking about this after my most-recent ride on Metrorail.   The state of one of the cars I rode in nudged a neuron, so to speak, as I tried to connect it to something I’d heard about some time ago.  That something was “the broken window theory.”

The “broken window theory” goes something like this:

The broken windows theory is a criminological theory of the normsetting and signalling effects of urban disorder and vandalism on additional crime and anti-social behavior. The theory states that monitoring and maintaining urban environments in a well-ordered condition may prevent further vandalism as well as an escalation into more serious crime. (Source)

(Another study argued with this theory’s conclusions.  The authors of that study noted that “remarkably little is known about the effects of broken windows” and that the evidence to support the theory “remains, at best, mixed.”)

What I Saw on the Train

I haven’t ridden Metro regularly since the 1980’s, so I can’t provide an emipirical study.  What I can do is provide my impressions and how I think they connect to “the broken window effect.”  (Mind you, I didn’t see any broken windows on Metro.)  But in the last several weeks, there have been instances of violence in and around Metrorail stations.  I was wondering if the “broken window effect” can be implicated in these and other occurrences.

The car I rode last (an Orange Line train from L’Enfant Plaza to Vienna at about 5 p.m. on Friday, March 4th) was fairly empty for evening rush on this popular route.  I saw a couple of examples of “disorder” on the train.  Not out-and-out disorder; the incidents were more a flouting of accepted behavior and somewhat anti-social behavior. Such as:

  • Consuming beverages on Metro.  I saw a person sipping from her fountain drink and another taking a long draught from his water bottle.  Um, unless you’re on an IV-drip to replenish fluids, I think you can make it to the next station before taking a drink.  But then I guess those Metro placards that prohibiting consumption of food or drink while riding Metro weren’t meant for you, right? Right?
  • Playing radios.  Technically, this didn’t happen; however, I think that playing music so loud that your seatmates can hear it is 1) disturbing and 2) unhealthy.  I wonder what the nice gentleman will be like in a few years when he won’t be able to hear without a hearing aid.  I hear they don’t work too well with earbuds.  My solution: Get better earphones that sit over the ear or get ones that fit more snugly in your ear. Besids, it’s always more fun to watch someone groovin’ out (& even singing!) to their tunage when nary a sound can be heard.
  • Litter.  This is something that has been building for a while; but I think it has been exacerbated with the dissemination of those free newspapers at Metro stations in the morning.  People read them. And leave them.  I believe Metro has replaced the receptacles for newspapers in their stations.  Use them, people.  And for those who might pick up a discarded paper: Consider yourself fortunate to have something to read.  When you leave the station, take the paper with you … and Throw It Away.  (Metrorail should run that iconic public service announcement with the Native American with a tear in his eye because of pollution.  This time, it should have a nicely dressed office worker in a disordered Metrorail car.  Nah; it’ll never happen.)

I saw a TV interview yesterday in which Metrorail riders admitted to being a little afraid on or around Metro stations.  This was very surprising.  During my commuting days, I never felt afraid while riding Metro.

In the original study that led to discovery of this effect, residents of Newark, NJ (where the study was conducted) felt safer with police patrols, even though crime did NOT decrease. Perhaps if Metro police and patrols were more visible, the riding citizenry might at least feel safer.  One of the measures of feeling safe, after all, was to not be afraid “of being bothered by disorderly people. Not violent people, nor, necessarily, criminals, but disreputable or obstreperous or unpredictable people: panhandlers, drunks, addicts, rowdy teenagers, prostitutes, loiterers, the mentally disturbed.”

I realize that Metro can ill afford to mount this type of effort right now; but if the local governments and their citizens feel that having a world-class Metrorail system (again) is worthwhile, then perhaps all parties will find the wherewithal to support (and fund) and effort to rehabilitate Metro and its image.

But for now we will have to rely on the Guardian Angels to help keep some semblance of order. (But I don’t think they’ll enforce the “no eating & drinking” rule.)

Putting Some Oxygen Back in the Debate

Well, next month it happens:  The MS Walk in Reston, VA on April 10, 2011.  I noted before why I signed up for the walk this year. It’s personal this time. All 3.7 miles of it.

Since I registered, I haven’t heard much about the MS Walk (or “Walk MS,” as the National Multiple Sclerosis Society terms it) on local radio and TV outlets.  What I do hear, however, are ads — ad nauseum, it seems — for the Susan G. Komen 3-day walk.  It seems like that cause is sucking all of the oxygen out of the fund-raising arena.

It’s not that I have anything against the breast cancer cause or the pink-clad marchers. It’s just that they are everywhere: everywhere you turn, every station you listen to, every billboard, everything!  It’s a very well funded organization, and it does a great deal of good.  The case can be made that more women (and men) will be touched by breast cancer than multiple sclerosis [MS]; but that doesn’t mean we — or at least I —  shouldn’t pay attention to the latter disease.

Sure, there have been treatments for the symptoms of MS (spacticity, fatigue) for quite some time.  And in 1994 I was fortunate to begin taking a disease-modifying drug that has likely altered the progression of this disease for me. So far. But there is still no cure.

So I’m walking. Not with a pink ribbon, but with the hope that I don’t trip and fall on the course.  And with the hope that soon we may find a cure.

I told myself that I wouldn’t spam my Twitter Followers and Facebook Friends with pleas to sponsor my walk with a financial contribution so that I can make my fundraising goal.

Yes, I am short of my goal.  And this is a call for help. But I promise you, I will not send many of these pleas.  At least not until much, much later and only if I am way, way below my goal. (Oh yes; and maybe during MS Awareness Week. 😉 )

So, you see, you can keep my “dunning notices” to a minimum by contributing now.  And the way to do that is to visit my MS Walk Page & clicking “Contribute to Michele” — it’s tax deductible! — at the top of the thermometer.

Help make this a world free of MS.

(You can also register to walk and join me at Reston Town Center.)