Sunday, March 14, 2010

Multiple Sclerosis Awareness Week 2010- The Family

As we come to the end of Multiple Sclerosis Awareness week 2010, I felt I'd be doing a grave injustice to the family of those with MS if I didn't do a post on them.  Their road isn't easy either, in fact it's incredibly helpless and frustrating.  In some ways, I think emotionally it may be just as hard as it for the person who has MS just in different ways.  It's funny, I have MS, and I often think to myself "I can handle me having this, but please God don't let my children develop this disease.  That would be more than I could handle."

I often put myself in my own parents' shoes, and honestly it breaks my heart.  I can only imagine the immense pain I'd feel watching one of my own children go through what they are forced to watch me go through.  As a parent, you can't help the fact that urge to 'fix' whatever is hurting your child never goes away.  It starts when they're little and take their first tumble.  You pick them up, brush them off, kiss their boo-boo, and slap on a band-aid whether it's actually needed or not.  When we see our child cry tears of pain whether it's physical or emotional, it breaks our heart, and our instinct to make that pain stop is so strong it can be almost overwhelming.   I see my own parents go through this with me now, and I know how hard it is on them to watch me struggle with this disease as I do.  I know they love me very much and would do anything in their power to 'fix' this, and I know how helpless they must feel because I can't simply 'be fixed'.

It's also extremely hard on the spouse of those living with Multiple Sclerosis.  My husband has been through a lot over the last two years.  He's not only had to watch me deteriorate, but he's had to pick up the slack in the household because of it.  I'm lucky, not everyone with this disease has a spouse that willingly (without ever uttering a single complaint) steps up and does all the extra things that mine does.  I can't even imagine what it must be like for the spouses of those far more effected by the disease than I am.  They are forced to become the caregiver and nurse, a role no one expects to take on when they say "I do".

Being the child of a person with MS is also extremely confusing and scary.  They struggle to understand what's happening to their parent, and very often fear losing them.  When I had to tell my own children I had MS, it was right before my daughter's 14th birthday.  Her reaction was one of fear.  She immediately blurted out, with a look of panic in her eyes "You're not going to die, are you?"  I reassured her as best I could that MS wasn't going to kill me, but it took awhile for her to really believe that inside.  For her, MS has taken away the mom she once knew.  She remembers me healthy and active, and though she never complains I know she misses 'the old me' that would run around non-stop with her.  It's kind of funny, because she actually likes it when I go on IV steroids, because for a few days she does get a glimpse of the way I once was before MS decided to become the uninvited guest who never leaves our household.  As for my youngest, he had just turned 6 years old when I was diagnosed, and for him it was a delayed reaction.  For months I thought he was fine with me having MS, then all the sudden when day in the car he asked "Mom, how did you get MS?"  I paused, realizing I was in difficult territory.  How do you explain to a small child what adult researchers don't even know the answer to?  Of course his next question was "Am I going to get MS?"- which literally made my heart sink.  Again, how do I answer that?  I decided to risk a white lie and try to ease his mind "No baby, you're not going to get MS, you'll be just fine".  Even as I spoke those words to him, my brain pleaded with God "Please, do whatever you want with me, just don't let my kids ever get this".   It's not easy for either of them having a mom with this disease, and I'm under no illusion it'll ever get any easier for them either.

Even having a sibling, grandchild, cousin, nephew, or niece with this disease is very hard.  Having a huge family, I've seen the gambit of reactions in the time since I was diagnosed.  My brother, for instance, took it very hard.  It always makes me laugh how my 'little brother' has somewhere along the line switched roles with me to become the protective one.  I'm fortunate to be able to call my brother one of my best friends as well, so for him having to watch me struggle through this has been very difficult.  MS is one of those things in life he can't protect me from.

So to the family of those of us with MS, know you're not forgotten.  To my own family- My Mom, Dad, Andy, Wayne, Morgan and Joshua- thank you for loving me and supporting me through everything that comes my way.  I wouldn't do nearly as well as I do without all of you in my life, fighting this disease by my side as best you can.

Be well all :)

Wednesday, March 10, 2010

Multiple Sclerosis Awareness Week 2010- The Psychological/Cognitive Effects

The psychological and cognitive effects of Multiple Sclerosis.  In my opinion, this is one of the most grossly misunderstood and undisclosed aspects of this disease.  You can Google "Multiple Sclerosis" and come up with list upon list of the physical symptoms, while any mention of the psychological and cognitive effects are mentioned as a mere afterthought.  Make no mistake, they are not a mere afterthought to those of us who suffer from them. Truth of the matter is, they are one of the hardest symptoms to deal with because they are invisible to everyone else, and very misunderstood and under-estimated as a result.   A lot of people who do suffer from these symptoms are hesitant to even speak about them.  I mean, it's a little embarrassing to admit that you feel as dumb as a box of rocks on some days.  There's the fear of people treating you differently, or thinking you are less intelligent than you once were.  So, I want to shed some light on these symptoms, and I'll do so by sharing my own battle with them.

I will be honest, the biggest reason I no longer work is not because of physical limitations but because of the drastic change in my mental function.  My problem solving skills, for instance, have gone right down the tubes.  I worked in accounting for many years, yet now there are times I truly struggle with the simplest math problems when helping my 7 year old son with homework.  It's like I look at the problem and completely draw a blank as to what the answer is or how to figure it out.  I can't do math in my head anymore, because I have lost my ability to visualize the math problem.  I'm not sure if this will make sense, but say I'm trying to figure out what 73+29 is my head.  I can picture the problem, with one number on top the other, but by the time I figure out what 9+3 is and go to carry the 1, the 7 and the 2 have faded away.

Following written directions, say for driving, is close to impossible.  Not only has my ability to comprehend new written information been effected, but my short term memory is shot as well.  What I used to be able to simply skim over and comprehend within a few seconds, I now have to really concentrate on and re-read repeatedly to understand it all.  So by the time I've made sense of the directions I've written down and look up to drive again, I've completely forgotten every single thing I just read.  All I have to say is, thank God for my brother sending me a GPS! *laughs*  Without my GPS, I would be unable to drive in unfamiliar areas.

My lack of short term memory is frustrating at best, discouraging and downright annoying at worst.  If I don't write down every little thing, chances are I'll forget.  I ask my family to tell me their schedules almost daily, not because it's changed or because they didn't tell me, but because I simply don't remember from day to day.  I know I ask the same questions repeatedly at times, because I have no memory ever asking previously.  When I had the psychological exam when filing for disability, the doctor kept trying have me do all kinds of memory tests.  Counting backwards by 7's, remembering four random objects and repeating them back 5 minutes later, other things of that nature.  I failed.  Miserably.  She actually said to me at the end of the appointment "I really feel for you.  It's obvious you're a very intelligent woman.  Dealing with the effects MS have clearly had on your cognitive functions must be extremely hard for you".  My response was "It's the hardest thing I've ever had to deal with".  I often say, it would be far easier to be stupid and live in ignorant bliss not knowing you're stupid.  Having a high IQ and being intelligent, yet feeling stupid, is pure torture.  

Another issue is what those of us with MS call "word fishing".  I can't tell you how frustrating it is to be speaking and forget the most common word in the world mid-sentence.  And by the time you remember the word?  You've completely forgotten what you were saying to begin with. Or choosing a similar but wrong word when speaking, and being oblivious to the fact you're even doing it.  I actually called my daughter's birthmark a 'tattoo' numerous times before she pointed out, through fits of laughter, what I had said.  (ok it WAS funny, lol)  

There is also the depression that so many with MS suffer from.  What people don't realize is, depending on what part of the brain is being effected, it can trigger a whole host of psychological effects from severe depression, bipolar disorder, even schizophrenia.   I know right around the time I started showing clinical signs of MS, I also was in the midst of the most severe depression I'd ever been in.  Then one day, just like a light switch, I woke up and it was gone.  The reason?  It wasn't because of a chemical imbalance or life circumstances, it was triggered entirely by the MS.  Then there's the fact just dealing with the daily struggles MS causes can send a person into a depression all on it's own.  

Then of course, I can't forget the 'foggy brain' feeling, short attention span, and inability to concentrate.  Just like the physical symptoms of MS, the psychological and cognitive symptoms are just as real and hard to cope with.  So the next time you see someone with MS, don't assume just because they "look good" they're actually doing well.  We may look incredible on the outside but are actually struggling against our own malfunctioning mind in the inside.  

Be well all- and get your orange on!

Tuesday, March 9, 2010

Multiple Sclerosis Awareness Week 2010- Fatigue

One of the major struggles that 70% of people with MS deal with is fatigue.  Unfortunately, the majority of people simply don't understand this isn't 'normal tired'.  Below is actually a re-post from about a year ago, but I think it gives a good visual to how MS fatigue, mixed in with some of the other common symptoms, actually feels.

Imagine you are planning a big camping trip. But the night before you are supposed to leave, you stay up a bit too late talking to a friend so you only get a couple hours sleep. The place you have chosen for this trip is in another state, so you get up at 5AM and make the 8 hour drive to your destination. You finally arrive, and in your haste to get going you realize you skipped lunch. No worries, you think. You'll grab a bite to eat once you get your site set up.

You step out of the car, and you are stiff and sore from the long drive. You go to your trunk and pull out all your gear. Your backpack can't hold it all, so you also have a bag to carry in your hand. So much for using a walking stick like you normally do to navigate the rocky terrain because your hands are too full. Just as you start off towards to the hiking trail with your 30 lbs of gear, you feel a drop of rain on your cheek.

Despite the light rain, you finally begin your hike. The ground is wet, so maneuvering the damp ground and slippery rocks while carrying your huge load proves to be quite trying. You slip and fumble a few times, grabbing a nearby tree to regain your balance, but you press on. You finally near the spot you planned to meet your friends, it's now dinner time, you are wet, tired, hungry, and sore. Only when you arrive there, you find it to be empty. A quick call on your cell phone reveals the location was changed to the west side of the park. You are on the furthest most eastern side of the park. You are miles from where you should be.

Feeling frustrated and defeated, you trudge off towards the east. The rain has continued all day long, so you slip in mud more than a few times, once even slightly twisting your ankle. The bags you are carrying now feel more like they weight 80lbs from lugging them around all day. You are weak and lightheaded because you've now skipped not one but two meals. You are tired not only from the drive and hike, but from getting so little sleep the night before. It's getting cold, and your muscles ache and beg for relief.

Just when you think it couldn't get any worse, as you're walking you suddenly feel a creepy-crawly sensation followed by burning working it's way up your legs. Much to your horror, you realize you've stepped in a large ant mound, and they are now covering your legs. Your bags fall to the ground as you desperately try to get them off, even kicking off your socks and shoes to make sure none are hiding in there. Sure they are finally off you, you put your socks and shoes back on and pick up your heavy bags once more. Once you begin walking, you realize there's a few small pieces of debris from the forest floor in your socks. The further you walk, the debris turns from an annoyance to painful. Your legs still sting from the ant bites, and you're sure you still feel a stray ant crawling on you from time to time and try to brush it off only to find nothing there.

It's now nightfall, and you finally see the glow of a campfire in the distance. You've found your friends! The problem? It's on the top a very large hill. You struggle and stumble your way up the hill, your muscles hurt and your body is just about at the point of giving up. You really wish you had eaten something because you're so weak you're feeling light headed. Why in the world did you feel the need to bring so much stuff, anyway? You finally make it up the hill, and you literally collapse.

But... you still have to put up your tent. You struggle back onto your feet, and spend the next half hour putting up your tent. Your friends are all excited and ready for a long night of partying by the campfire- but all you can think of is food and sleep. You grab a few hot dogs and eat them raw, you're just to tired to bother cooking them. And while everyone else is having a great time, you crawl into your tent and fall asleep of sheer exhaustion.

That... is a day with MS. The muscle aches, the feeling unbalanced when you walk, the feeling of carrying a heavy load everywhere you go. Being light headed and foggy brained, sore feet feeling like you're walking on pebbles, even burning and creepy-crawly sensations on your skin. The feeling of frustration and defeat, and being left out of fun events in your life because you're just too exhausted and weak. And what's worse? That's just the tip of the ice burg. There's so many more things that go wrong with your body when you live MS that I didn't even cover here.

So the next time you hear someone with MS complaining about fatigue... please don't compare it 'just being tired'. It doesn't even compare.

Be well all- and get your orange on! :)

Monday, March 8, 2010

Multiple Sclerosis Awareness Week 2010- The Basics

Today marks the beginning of Multiple Sclerosis Awareness week.  Every day this week, I'll writing up a new post in an effort to help bring awareness to the different aspects of MS.  For those of you stumbling onto this blog for the first time, here's a brief introduction of myself.

I am 36 year old woman living in Michigan.  I am also a wife, a mother, a daughter, and a sister.  In August of 2008, my world started turning upside down as my body was hit by a series of 'mysterious' symptoms, one after another.  In October 2008, I was heard the words from my doctor that changed my life forever: "You have MS".  MS has not only changed my life, but the lives of those who love me, in many ways.  I started this blog the day I was diagnosed as a means to keep my family and friends informed of what was going on with me.  Somewhere along the way, it's turned into a both a diary as well as source of information for others.  My only hope is that by sharing my journey, and the knowledge I pick up along the way, I can help make someone else's journey just a tiny bit more bearable.  

The most logical place to start this series of awareness week posts is with some basic information.  Multiple Sclerosis is believed to be an auto immune disease in which our immune system mistakes proteins within the myelin sheath around the brain and spinal cord as an invader to be killed, causing lesions and subsequent scarring where the attacks occur.  To better explain the role of myelin, here is a favorite analogy of mine: Picture a plastic coated power cord, now scratch off some of the plastic.  It may spark, it may work sometimes but not others, eventually once that exposed wiring rusts it stops working altogether.  Now picture that coating is the protective layer of your brain, and your brain is the copper wiring.  That is essentially what happens with Multiple Sclerosis.  

Once the myelin is worn away, the brain's signals to the body don't work correctly.  Because of this, virtually any and every part of your body could potentially be effected by the disease.  Here are a list of some of the more common symptoms of MS:

Muscle symptoms:
  • Loss of balance
  • Muscle spasms
  • Numbness or abnormal sensation in any area
  • Problems moving arms or legs
  • Problems walking
  • Problems with coordination and making small movements
  • Tremor in one or more arms or legs
  • Weakness in one or more arms or legs
Bowel and bladder symptoms:
  • Constipation and stool leakage
  • Difficulty beginning to urinate
  • Frequent need to urinate
  • Strong urge to urinate
  • Urine leakage (incontinence)
Eye symptoms:
  • Double vision
  • Eye discomfort
  • Uncontrollable rapid eye movements
  • Vision loss (usually affects one eye at a time)
Numbness, tingling, or pain
  • Facial pain
  • Nerve pain
  • Painful muscle spasms
  • Tingling, crawling, or burning feeling in the arms and legs
Other brain and nerve symptoms:
  • Decreased attention span, poor judgment, and memory loss
  • Difficulty reasoning and solving problems
  • Depression or feelings of sadness
  • Dizziness and balance problems
  • Hearing loss
Sexual symptoms:
  • Problems with erections
  • Problems with vaginal lubrication
Speech and swallowing symptoms:
  • Slurred or difficult-to-understand speech
  • Trouble chewing and swallowing
Fatigue is a common and bothersome symptoms as MS progresses. It is often worse in the late afternoon.

 It is believed roughly 2.5 million people worldwide suffer from Multiple Sclerosis.  Some say that number could be as high as 4 million if one takes into account the misdiagnosed and undiagnosed cases.  There are approximately 400,00 diagnosed cases of MS in the United States, with an estimated 200 new cases diagnosed every week.  MS strikes women twice as often as men, though men seem to progress in the disease faster than women.  The average age of diagnosis is 30-40 years old, with symptoms starting between 20-40 years old.  Diagnosis is often delayed because of the sporadic, unpredictable nature of the disease.  Multiple Sclerosis can effect anyone, of any race, gender, or age.  

There is no cure for Multiple Sclerosis.

Those are the basics of Multiple Sclerosis, and really, only the tiniest glimpse as to what life is like living with it.  MS is a greatly misunderstood and underestimated disease, largely because so many with it "look good" but suffer greatly with largely invisible symptoms.  I'll be touching on this topic more as the week goes on.

I challenge everyone reading this to help spread awareness of Multiple Sclerosis during this week.  Why?  Because you never know when this disease may strike you or someone you love.  I know two years ago, even though I was already having symptoms of MS but didn't realize it, I'd have never thought in a million years I'd be sitting here with this disease writing this blog.  It can, and does, happen to anyone.

Until tomorrow, be well everyone. Get your orange on and spread MS awareness :)

Friday, March 5, 2010

A Step Closer to a Cause?

Since being diagnosed with MS in October 2008, every day I Google "Multiple Sclerosis" news to keep up with the latest happenings in the research community.  Today, one headline and story in particular really struck me.  Here it is:

Researchers find further evidence linking Epstein-Barr virus and risk of multiple sclerosis

First long-term study among individuals not infected with EBV suggests EBV infection likely to be a cause of MS, not a consequence

Boston, MA – Researchers from the Harvard School of Public Health, Walter Reed Army Institute of Research, and a team of collaborators have observed for the first time that the risk of multiple sclerosis (MS) increases by many folds following infection with the Epstein-Barr virus (EBV). This finding implicates EBV as a contributory cause to multiple sclerosis.

This, in my opinion, is very big newsWhy?  Because Epstein-Barr is the virus that causes Mononucleosis, or "the kissing disease".  The Epstein-Barr virus lives dormant in your system forever once infected- it never goes away.  When I was 13 years old, I had mononucleosis.

Here is the part that interests me even further:  95% of Americans between the ages of 35-40 years old have been infected with the Epstein-Barr virus at some point in their lives.  Now, just because you become infected does not necessarily mean you will show any signs of illness, or in some cases it's so mild the person infected simply writes it off as a common cold.  With that said, the majority of people with Epstein-Barr in their system gain adaptive immunity.  This means that while the person lives with the dormant virus in their body forever, their immune system keeps it from ever becoming active again.  Another interesting fact, is that this virus is a member of the family of Herpes viruses that includes Herpes Simplex, which causes "cold sores" on the lips and mouth as well as genital Herpes. Herpes Zoster which causes Chicken Pox and Shingles, is also in this family of viruses as well.

Knowing these facts, it's no wonder 95% of Americans test positive for the Epstein-Barr virus.  But if almost every adult has the virus in their system dormant, then why is it only a fraction of us develop Multiple Sclerosis? Mind you, I am no doctor, nor am I a scientist.  However, I do have a theory of my own.

I look at my health history, and I see a definite link.  As I mentioned earlier, I had mono when I was 13 years old.  I also had chicken pox not once, but twice, which is incredibly rare.  The first time I had chicken pox I was 5 years old and it was very mild, and the second bout of chicken pox came about a year after I had mononucleosis.  Then, when I was 32 years old, I woke up one morning with a nasty case of the Shingles.  It was right around the time I got Shingles that I also started showing clinical signs of Multiple Sclerosis.

One more important fact:  When I was a baby, I also had a rare and serious disease called Stevens-Johnson Syndrome, which is thought to arise due to a disorder of the immune system.  It'll probably come as no surprise when I say one of the triggers of Stevens-Johnson Syndrome is the Epstein-Barr virus when active. 

Taking all the research into consideration, as well as my own personal medical history, I very firmly believe there is a direct link between Epstein-Barr and Multiple Sclerosis.  My theory is that those of us that develop MS do so because of faulty wiring in our immune system, so we never gain the adaptive immunity to the virus that most people do.  Hence people like myself, who have lifelong episodes of illness due to the virus going active.  The fact that Steven-Johnson Syndrome is thought to be a disorder of the immune system is crucial to my theory, because that shows I had immune system problems from the time I was an infant.  Being as active Epstein-Barr is a known trigger for Stevens-Johnson Syndrome, it also shows a very likelihood I've lived with the virus in my system for almost my entire life. 

While I'm sure some of you are sitting there going "oh, that's bad!", please don't.  This is a good thing, because the sooner they can pin-point a cause of MS, the sooner they can find a cure for it as well.  With Multiple Sclerosis Awareness Week just around the corner (March 8-14), I thought sharing my findings on this was rather timely.  Who knows, maybe I'll live long enough to see the day they do find a cure, and none of us will ever have to live with this disease again.

Food for thought :)

Be well all!