MS

Behind the half
   remembered word,
The monster lies in wait.
He sucks your strength,
   he slurs your speech
And leaves you to your
   fate.

He lurks in dark
   confusion.
He waits, a patient shade,
Delighting in delusion,
And making you afraid.

He sucks away your life
   force.
He numbs your will to
   fight.
He steals your words as
   they are born,
And then he steals the
   light.

This dark and dank
   obscenity
Is warring with your soul,
Nibbling at your dignity,
A grey and faceless hole.

Oh please give me the
   strength to face
This demon, dire and
   dread,
To embrace and sooth his
   decaying form,
To give him peace
   instead.

        ~JoAnn Layton


Every man has his secret
   sorrows,
which the world knows not;
and oftentimes we call a
   man cold
when he is only sad.

Henry Wadsworth
               Longfellow

Who Are the People
With Multiple Sclerosis?

We are your parents, your children, your brothers and sisters; we are the person down the street; we are that lady or fellow who may walk a little "funny" at the grocery store. We are the people that you "tsk, tsk" over because we might look "too good" to use a handicapped parking space. We are the folks who may not be able to get out to the Church or Temple every weekend; we are your peers; we are human beings.

We are the face of Multiple Sclerosis. A face that is nearly every ethnicity; that comes from nearly every country, that does not discriminate by social standing or class or financial or educational background or language or religion. We are both able to walk unassisted and use canes and walkers and wheelchair users; we jog and swim and partake in sports; we are housebound, we use scooters; we need respirators. We are everything in between. We are visually impaired and we are not. We are at every level of physical ability.

Of course, we "look so good" while we're doing it. We hear that phrase every day of our lives. Sometimes that phrase is meant as a compliment and sometimes it is meant to hurt or meant to shame us into doing something of which we may not be currently capable. We may be able to do that something tomorrow, though, or next week; Multiple Sclerosis is like that. We are like that.

Some of us are hearing impaired; yet all of us occasionally have people talk louder to us. "HOW ARE YOU D-O-I-N-G????" they'll scream, speaking to us as though we were either hearing or intellectually impaired. "YOU LOOK SO G-O-O-D!!!!"

Of course we do. Thank you very much. We are, in fact, the very best looking people in the handicapped community. We have secret beauty pageants every year, to decide which of our number is the absolute best-looking. Billy Crystal emcees, as his character Fernando; "...and you look MAHVELOUS my dear; absolutely M-A-H-V-E-L-O-U-S..."

We are brave. We are fragile. We want to live, and we want to end it all. We look for support and we want to stand alone. We are Everyperson. We are the People with Multiple Sclerosis. We are People, Just Like You....

— Virginia Sanchez

Shadow and Me at the rest stop, MS Walk 2004Welcome

Thanks for stopping by!  I'm guessing you've heard I'm participating in the 2007 MS Walk, and are considering making a donation, or maybe even joining my team.  So I'll give you the link first, just in case you're in a hurry ;)

Support me / join my team

Simply follow the link and choose one of the options under my picture there. 

Why I walk

This is actually the fourth MS Walk I have participated in.  I signed up for my first walk the year after I was diagnosed with MS myself.  MS takes away control of many aspects of a person's life.  This lets me have a little control back.  It gives me a way to feel I'm doing a little something towards helping to find a cure. MS is something I don't want any friends or family to ever have to experience first-hand. 

Come join me

Darth Maul stopped byIt really is fun.  Hey, where else are you gonna happen upon Darth Maul (not to mention a bunch of Stormtroopers and some Jedis) just walking down the street? And the walk isn't hard... about 3 miles on flat city sidewalk.  Hey, if I can do it, so can you.  Here is some info from the NMSS website.

Walkers meet at the Grand Hall for check-in, warm beverages, and a great breakfast, then move to Olympic Legacy Plaza for pre-walk festivities and a short program. From there we will kick-off the walk where the route heads North. Snacks, festivities, and bathrooms are available at rest stops along the route. We will end the Walk with a snack and a huge "Thank You."

It takes four to make a team, and last I looked we weren't there yet.  Hmm... it isn't even a "we" yet.  Hey, I don't want to walk alone!  So bring yourself.  Bring more friends.  Bring more family.   It'll be great!  And official teams even get a space in the TeamMS Village, as well as a team photo.

2005 Team PhotoWhy team Hobbits for Health?  Well, originally this started out as something I did with my Lord of the Rings group, Eru Aeglirdor.  Unfortunately, with the films done, interest waned.  But this is something I intend to continue doing, and would like to continue with friend and family.  But the team name stays.  I like it.  Plus we can have shirts with cute Hobbit feet on the back ;) 

Yes, you should turn in a sponsor envelope, that's what it's all about, really.  But there is no required total donation, so if you really don't want to ask for money, sponsor yourself for a small amount.  I'll appreciate your support just for being there.

Why sponsor me

Hmm... does that mean I can't convince you to come join me on this walk?  Well, I understand, we all have busy lives. (That is why I gave you advance notice, though :Þ) Anyway, don't think that just because you can only spare a dollar or two, that it won't help.  Every bit counts!  Just think... if just 10 people could give only a dollar, that's $10 right there.  Not that I'm limiting you any ;)  Just letting you know that it is all appreciated!

The National Multiple Sclerosis Society uses the money towards both research (towards prevention, treatment, and a cure) and towards local programs to help those with the disease.  You can check out their website for more info about that.  I'll just say you'll be helping out a lot of people out there... not only those with MS, but those who may potentially be diagnosed in the future.  Or maybe someday they'll be able to have some sort of vaccine, and no one else will have to be diagnosed.

What is MS?

No, we aren't fighting against a software company.  Though there are some similarities with the way the operating system randomly shuts down for no apparent reason.  MS is Multiple Sclerosis.  (No, not Jerry's Kids... that's MD - muscular dystrophy, a completely different type of disease.)  Multiple Sclerosis is an demyelinating autoimmune disease that affects the central nervous system.  Basically, it's the body's own immune system going after the nerve covering in the brain, spinal cord, and optic nerves.  It destroys the myelin (the covering of the nerves) which leaves behind scarring, or lesions.  This disrupts the transmission of nerve signals in the body.

So what kind of symptoms does this disease cause?  Well, that should be easy enough... what does the brain and spinal cord control?  Hmm...maybe not so easy... I guess that is just about everything.  The variety of symptoms is one reason the disease can be so hard to diagnose.  The symptoms that are present vary with the location of the legions in the brain and CNS.  Some symptoms are more apparent, such as difficulty in walking, and vision problems.  (Though often those with walking and gait problems are written off as drunks!)  However, there is an extensive list of symptoms not so readily apparent.

One of the most frustrating things about MS are the number of people saying (or thinking) 'oh, you look great, there's nothing wrong with you!'  They think that the person with MS is just being lazy, or that the person just needs to put their mind to it and live life normally.  (Check out the Multiple Sclerosis Sucks site for more helpful things people with MS hear all the time.) Problem is, there are so many symptoms that can't be seen.  Pamela Martin writes in Invisible MS: Now You See It...Now You Don't

It may be surprising for the uninitiated to learn that some of my worst days with MS are the ones where my symptoms are less visible....
...Try holding down a job when you feel like iron anchors are tied to your ankles, the soles of your feet are burning, your eyes are perpetually crossed, the sensation of worms are crawling up and down your leg, and your mental acuity goes on vacation without warning.

Just a few of the "invisible" symptoms of MS are changes in cognitive function, dizziness, vertigo, chronic pain, spasticity, depression and other emotional problems, tingling, pins and needles, or loss of sensation, and fatigue.  In fact, I know one of the things I hate hearing most is 'oh, I know, I was up late too'.  Trust me, it is not the same.  Wanna know a bit more about MS lassitude? Check out the Spoon Theory.  It's written by someone with Lupus, another autoimmune disease with many symptoms in common.  And it's the best description I've found that can maybe give someone a little idea about the fatigue.

ms ribbonWhat is the MS Ribbon of Hope?

From the NMSS website: "Because multiple sclerosis impacts people's lives in vastly different ways, and its debilitating symptoms are often unseen, we are promoting the MS Ribbon of Hope. As the prism ribbon seems to change color as it reflects light, so it symbolizes the unpredictable, life altering affects MS has on people's lives. The ribbon is also symbolic of the hope the Society provides as we press forward toward our goal to end the devastating effects of MS—forever. We hope people will wear it often."

finish