National MS Awareness Month || Root Causes

The reason there's no cure for MS is that, while researchers understand how it happens--it's a specific immune system response which attacks the central nervous system--they don't know what can trigger it. The result is that they can only guess at how to treat it, and must rely on dual approaches--treating the symptoms separately while also finding ways to halt or slow its progression. Research has been ongoing for decades in terms of both cures and vaccinations to prevent it, but until they can isolate its root causes, those of us with MS are still going to be guinea pigs, either at the hands of the medical/pharmaceutical community or at the hands of the alternative medicine community.

Basically there are four areas where MS is examined in search of etiology, or disease origin. 

Immunology
There's a lot of agreement here, that multiple sclerosis is a disorder of the immune system. Which makes sense. It's a war between a hyperactive immune system and the body's central nervous system. 

Genetics
There are multiple genetic connections which are still being identified and understood, but this is more in the range of protein triggers and not genetic inheritance. One twin who gets MS does not mean the second twin has a high chance of also getting MS; the odds are nominal (3% chance, compared to 1% chance in the general population). 

Environment
It seems likely that MSers are suffering due to exposures to certain kinds of elements in our environment, as statistics continue to bear out how MSers respond to certain toxins relative to their geographic location. 

Infectious disease
Studies show a likely connection between MSers and exposures to certain kinds of viral infections.

There are also certain risk factors (to be clear: these are not causes, in and of themselves) that lend themselves to the "perfect storm" belying an MS diagnosis. These include people who are:

1. Of Northern European descent
2. In the age range of 20-40
3. Female
4. Already diagnosed with other autoimmune disorders (i.e. arthritis, Celiac disease, etc.) 

If one or more of these risk factors occurs in a person, the odds seem to go up that they could be at greater risk for developing MS. 

Here are the most popular theories about what could actually trigger MS in an otherwise healthy person. These potential root causes are the most discussed among patients, doctors and researchers. 

1. Exposure to some (still yet to identify) environmental agent before puberty 
2. Vitamin D deficiency
3. Lack of sunlight exposure due to geography
4. Smoking (first- or second-hand)
5. Exposure to either the human herpes virus-6 or the Epstein-Barr virus, especially early in life
6. Family history (see text above regarding genetic predisposition)

Still in the research phase are a few other potential theories getting some attention:

1. Exposure to radon and ionizing radiation
2. Exposure to acrolein, an environmental pollutant
3. Exposure to Epsilon toxin, produced by certain strains of Clostridium perfringens. This spore-forming bacterium is a frequent cause of foodborne illness in the United States
4. The presence of an unusual comorbidity known as Chronic Cerebrospinal Venous Insufficiency (CCSVI), a (controversial and unproven) condition in which blood drains abnormally from the brain and spinal cord
5. Root canal procedures (which always present the potential to damage the inferior alveolar nerve), which may make it possible for certain bacteria left behind post-surgery to enter the brain, leading to MS (sorry, no link here as I can't find any studies that can be accessed by the general population without a subscription).


Disproved theories about potential root causes of MS should be included in this discussion as they are still out there, circulating in the general population. If anyone ever tells you that any of these are at fault, please find a friendly way to educate them! 

1. Viruses carried by household pets
2. Allergies, in general
3. Heavy metal exposure (though this is controversial, still)
4. Physical trauma
5. Aspartame
6. Gluten intolerance
7. Antibiotic use
8. Fluoride

MS is not only mysterious, it's political 
Please remember to help support MS research whenever you can. The clinicians can never work fast enough toward the cure, but there are literally thousands of studies out there that are pointing to real possibilities, and they need your support via awareness and funding. 

I know many people with MS or who have loved ones with MS who are at the end of their patience waiting for a cure, and many of them have stopped believing that medical science is even interested in finding a cure. Not true! Research continues to require the astronomical expense of lots of broad test populations, major safety considerations and the latest in technology to complete studies on root cause as well as to test the viability of medications that might stop MS in its tracks. 

If you're American, you also have the added curse of an UNDERFUNDED medical research community reliant on pharmaceutical companies to pay for it all. If we, as citizens, would enact more legislation that supports more government funding, we might be able to take the presumed steering wheel out of the biased hands of Big Pharma and place it back into the hands of modern scientists who really do want to cure this disabling disease.

CLICK HERE TO DONATE TO THE National Multiple Sclerosis Society







Blog post sources:
What Causes MS? || National Multiple Sclerosis Society
Multiple Sclerosis: Risk Factors || Mayo Clinic

National Multiple Sclerosis Awareness Month || Gratitudes

I'd like to thank all the mice in all the research labs around the world who have given their lives to the study of multiple sclerosis. And I'd like to thank the researchers, too. And all the donors who make their research possible.

National Multiple Sclerosis Awareness Month || "But You Look Great!" and an aside about reverse ageism

I posted a list of things NOT to say to an MSer recently, and more or less I stand by that list. But I have to say, it's tough getting around this one:

"But you look great! (or...fine! or...healthy!)"

-or-

"But you don't look sick..."

A lot (maybe 95 percent?) of my MS peers absolutely hate being told this. I used to find it annoying. Not so much anymore. In fact, when I hear "you look great!" I feel pretty good, like something's working for me. And I feel some relief, too, because there's a weight to this secret I carry around with me, which I can't share (at least not yet) at my workplace, and when somebody says I look great, what they are actually saying is I pass for normal.

Anyhow, who DOESN'T like to be told they look great?

Well, when you feel like crap all the time and you are deep in the trenches with an invisible illness which bombards you constantly with reminders of its existence, it's easy to take the comment "But you look great!" as a kind of denial or trivialization of what you are going through.

The fact is, people say this because they want to be supportive, they care, and they don't wish to deny you anything. They may not understand what you are going through, but their hearts are in the right place.

I think my cohorts dislike this phrase because it makes it harder for them to convince others that their illness is REAL. So let's get this one thing out of the way right now.

People without MS, please master one simple truth: 

If the MRI and the blood tests and the lumbar puncture and the 

neurologist and the patient all agree that it's MS, then IT'S MS. 

It's not some version of hypochondria the MSer is putting on to gather 

sympathy or special favors from others. It's not an excuse to get out of 

chores or job tasks or physical labor or parenting. It's not something 

any of us MSers hope to have so we can live a life of leisure. 

Capiche?

Of course it seems ridiculous to reasonable, educated, compassionate people that anyone should assume that someone with MS is a hypochondriac, or lazy, or a system abuser. But it happens all the time. Not so much to me (in fact, I don't think I've really experienced this at all).

HOWEVER, AN EXAMPLE...
Just today I heard from a youngish peer that she was getting out of her car, which was parked in a wheelchair access spot at the grocery store, with her cane clearly in use, and an elderly man caught up with her and told her to save the spot for someone who needed it. Here is my peer, standing there, CANE IN HAND, and the man, who walked up to her of his own volition, with no need for an assistance device, was suggesting she was a fake. When my peer learned the man also had a handicap parking permit, she politely told him, "I have multiple sclerosis," then asked, "And why do YOU need YOUR permit?" His reply? "Because I get tired sometimes."

I'm not going to say that the elderly man's needs aren't legitimate. I work everyday with elderly people who are tired all the time. It sucks being tired all the time. I get it. I, myself, am tired. All. The. Time. But why in the world would someone decide that a younger person with a cane didn't also deserve the same privileges they enjoyed as an elderly person who gets tired sometimes?

There probably aren't enough handicapped spots at the store these days. Between a growing population of elderly people who need some additional assistance and the fact that there is now greater, more expanded access for all disabled people (which is actually a good thing... we want people in our society to be independent, after all), we might rethink the number of slots available to people who need them. In a perfect world, people of all ages and with all legitimate concerns should not be put in the position of fighting over access to handicapped spots. Certainly none of them should be judging the other as to the general worthiness of their disability in the first place...

Before anyone gets their panties into a bunch, I am not trying to demean the elderly here. This is not the first time that I have heard stories of elderly people mocking or judging or accusing young people with disabilities of abusing the system in some way. The elderly are not saints just because they are elderly. Some elderly people are perfectly lovely and some elderly people are perfectly unlovely. This reflects the truth about every age demographic.

I mostly wish to use the example to point out that MS is a disease that frequently and primarily ravages the young. It can necessitate the use of a cane or the use of a handicapped access spot for someone as young as their teens because (and I have felt this keenly more times than I wish to recall right now) MSers of every age are freakin' EXHAUSTED and IN PAIN and THEIR LEGS ARE NUMB OR FEEL LIKE THEY ARE MADE OF LEAD. I myself can barely make it in and out of the store sometimes without thinking constantly about using that bench seat near the pharmacy for a nap just to get through the otherwise simple chore of buying milk.

Most of the MSers I know who are dismissed as lazy, faking it or somehow imagining they have the illness are young people. Our society demands a lot from our youth and when they get struck down by something like MS, it's twice the curse. If you are older, people will accept your disabilities as part of being elderly. They will go out of their way to help you, even. But if you are a young person, it can be a much harder world out there. You still need to work to pay your bills and be present in your role as a parent and/or spouse. Sometimes you are suffering the ides of MS while simultaneously caring for an elderly or disabled family member as well.

In a sense, deciding that young people with MS or other chronic illnesses or disabilities don't deserve the same respect as the elderly is essentially enacting a form of reverse ageism, which is in no way more acceptable than the opposite. Nobody is more or less worthy of compassion and assistance just because of their age demographic.

BACK TO MY POINT
I want to add that I think the kneejerk response, "But you look fine!" happens without any harmful intent for a couple of less obvious reasons:

1. When someone you know finds out you have an illness, one response is fear. Could it happen to them? Could it be contagious? Could they lose their loved one? The statement "But you look fine!" is really them fending off nagging fears that even their lovely friends who work hard, have families and give to their communities are not immune to chronic illness. If you look fine, then it must not be too bad. And they think this not because they wish to reduce the severity of your condition, but because it comforts them to know that, well, okay, you look good, or well, or fine, and that means it's not threatening. We know the truth, and so do they, but there's a heartfelt act of grace inside these words that should not be overlooked.

2. Some loved ones in our life are generally positive people and when they say "But you look fine!" they are truly trying to be your cheerleader, a motivator, a coach. They want to lift you up and say, look at you, you are winning! I'm "guilty" of this myself. I have said the same thing to loved ones with cancer who probably hated me for saying it to them, but my intent was never to diminish their suffering, but to express, honestly, that they still appear healthy and lovely on the outside and, to me, that's a great sign, even though I intellectually know better. It's my impulse to look for silver linings, bright sides, hidden blessings and, heck, if you look hearty and hale on the outside, then rock on. Just spreadin' some good vibes!

So that's where I stand on the issue, though I know it's complicated and many people will disagree with me about my last two points.  I think, ultimately, that though we all have absolutely NO CONTROL over what others say to us, we DO have control over how we respond. and we DO have the ability to be discerning about the motivation behind their words.

So I have a new system for dealing with this. When somebody says, "But you look fine!", I assess their intention, not with my eyes, but with my intuition, to see what's truly in their heart...

And you know what? Most of the time... it's love.

National Multiple Sclerosis Awareness Month || Celebrity Jack Osbourne on living with MS, plus other familiar faces fighting MS

Three famous faces of multiple sclerosis: L to R: Montel Williams, Ann Romney, Jack Osbourne

People living with multiple sclerosis are lucky to have so many celebrity spokespeople out there helping to drive home the need for research and a cure. Some famous people have parents or siblings or spouses with MS, while others are living with it today and have been doing so for a very long time.

Here's a nice video interview with Jack Osbourne, son of Ozzy and Sharon Osbourne, who was diagnosed in his mid 20s and is working diligently to get the word out about multiple sclerosis: how it affects people's lives and what needs to be done about it. Osbourne also has a great awareness promoting website to check out: You Don't Know Jack About MS.

Here are two other slideshows highlighting personalities who are deeply impacted by multiple sclerosis. Tell me you aren't surprised by who makes the list.
   Famous Faces of Multiple Sclerosis   ||   Famous Faces of MS

National MS Awareness Month || Don't put me in a box, pine or otherwise

That's a interesting phrase... "Don't put me in a box." It was meant to convey resistance to conformity. But it also makes a more subtle morbid suggestion, that some might, by deciding you are "done" because of a disease, also put you into a (pine) box (metaphorically, of course).

In other words, when you receive a diagnosis of MS, it's bad enough that you are confronted with your own personal mortality. But tell your friends, family members, acquaintances and they will often, without even meaning to, decide to either put you in a metaphoric Disabled Box (even though you may not have any outward evidence of your condition) or break out in tears and grief because they clearly think your life is over and you are headed for none other than the metaphoric Pine Box.

I thought a lot about this today because I am anxious about revealing my diagnosis to my boss, my coworkers and others who I work with as part of my job in the allied healthcare field. I haven't told anybody anything because, first of all, having MS for me does not mean I am disabled or will be disabled any time soon. I do not have any need for accommodations at work; I just got my job review and it was all good.

Still, it's hard to carry that information around with you and not share it. Or at least it is for me. Others, I know, would rather just bury it and never talk about it again. I understand that impulse too, though it's not my style. I'd rather just put it out there and move on.

Except I've learned... sometimes, when I put it out there, I might be able to move on, but others who don't know much about MS might not be able to. Some of the kinds of changes I've noticed in the behavior of friends and families include:

1. A nagging sense that they believe you are weak, or frail, or incompetent now, even when there is no outward evidence of this. Note: Disabled people get this vibe from their functioning peers 24-7.
2. Disbelief on their part, either bundled with suspicion that you're faking it, or just general inacceptance of your DX. Note: Disabled people get this vibe from their functioning peers 24-7, as well.
3. A kind of mourning every time you encounter them, like they are afraid for your life and gush with more than their typical positivity because, maybe, they think you are inches away from dying even though, truth be told, you might actually feel a lot better now than when you first told them about your diagnosis. Note: Disabled people ALSO get THIS vibe from their functioning peers 24-7.
4. Forgetfulness. You are moving on. They may or may not think you are sick, or cured. They have simply forgotten this is something you deal with 24-7 because it is an invisible illness. Disabled people with invisible symptoms also totally understand this challenge. 

Number 1 is my reason Number 1 for not telling my boss and coworkers and contemporaries in my career field. They like me, they think I'm good at what I do. They believe in me. This is no small thing. It means that, not only do I have a job that pays decently, and a career that I really love and am challenged by, but I have their faith in me as an additional reason to get up every day and keep going. I believe in myself because they believe in me (and it works in reverse as well).

I was thinking about this today because I had a meeting with some of my cohorts, and one of them (I'll call him "Joe") in particular has set his sights on grooming me for a bigger role in this organization we are developing. Part of me is all "Awesome, I have a great opportunity here not only for my career but to work with people who share my passion doing things that make the world a better place!" And then, part of me is all "But what happens if my MS progresses and all this faith Joe has placed in me will be wasted if I then have to bow out of commitments because I am too sick to fulfill my duties?" And then, yet another part of me is all "But if I tell Joe now, it might mean he stops having so much faith in me and begins to believe I am weak, or frail, or incompetent" (see point #1 above).

While it bothers me that my family is sometimes guilty of point #4 (above), that is a separate recurring concern in the workplace, that regardless of the truth, Joe might still expect me to take on challenging tasks that I might not be up for, forgetting I have some limitations because MS is so utterly invisible for me. Then I would have to bring it up to Joe, again and again, like my family, so that they could realign their expectations. You know, I don't want to be that kind of cohort in the professional realm. I only want Joe to know and trust and respect me for my ideas and hard work and heart. I don't want or need sympathy from him.

So when I left to go to this meeting this morning, I was thinking, Hmmm, maybe I should just tell Joe my secret after the group meeting, a secret which burns a hole in my conscience like money burns a hole in one's pocket. And I practiced how I would break it to him, and felt good knowing he would keep mum. I know he has placed a lot of trust in me in my role in this developing project, and I don't think he would reveal my secret to anyone else in the field.

And then we had our meeting and I ROCKED IT OUT. I was articulate, my ideas were smart and accepted by people much smarter than I am, and they all thanked me for my particular contribution of awesomeness (which is in tracking communications for the team).

So I didn't say a word to Joe. Why should I? What would I gain except that the hole in my conscience would stop burning? Regret can burn a hole in one's soul, too, and today I felt like it would be a mistake to say anything, that it might even lead me to a whole boatload of regret.

I don't know about you, but I don't think living with regret is a better substitute for carrying a secret which, if not revealed, may never negatively impact anybody else in any meaningful way.

But it's still hard to carry around and I'm so grateful that I have so many friends and family in my life who are great about listening and inquiring and showing their support and not treating me like a leper for it!

As for points #2 and #3, I've had some experience with both... Disbelief among peers in specific circles that I've had to leave because my involvement there was more or less optional and the stress level was more than I wanted to manage then or now or ever. I don't think I have run across anyone who thinks I'm faking it, though I hear these horror stories from fellow MSers all the time. And I've had a couple of friends who responded immediately to news of my diagnosis with tears and fear and horror. It's sweet of them, and I love them for caring so much. But every time I see them, I can tell they are wondering how much time I have left. My neuro said the odds, of me living out my life actively and to the extent of my assumed nonMS life expectancy, are overwhelmingly in my favor, and I've shared that with these friends who I think of (archly, and only to myself) as loving undertakers. My hope is that time will ease their fears and they will see that hope is the real engineer behind everything I do.

Just a quick note: most MSers are advised by legal counsel to not reveal their condition during a job interview and to be very judicious about sharing that information with coworkers or your boss if you are diagnosed while actively employed, especially if you do not show outward signs of mobility issues or other deficits that could impact your job performance. However, once hired, some employers have HR departments that WILL ask ALL of their incoming employees specific questions about preexisting health conditions (hospitals are one such kind of employer) because they need this information in order to serve everyone's needs for job accommodations etc. Still, HR is forbidden from sharing this information with your boss or direct supervisors or coworkers thanks to the ADA and, to some extent, HIPAA privacy laws. Suffice it to say, HR knows about my condition, but when I told them, all they asked was whether I needed any devices to perform my job, and then, because it's a medical employer, they were caring enough to ask me how I was doing. When I told them I was taking (and tolerating) my meds and feeling great and shared the positive notes my neuro had regarding my prognosis, that was the end of the conversation.

If you are an MSer and you struggle with disclosing your condition, especially in your work environment, because you fear for your job security, you can check out all kinds of resources through the National Multiple Sclerosis Society. The article, "Should I Tell?", is quite instructive and while it reveals how complex it is to be an MSer in the workforce, there are lawyers at the national and state levels who can help you decide how to move forward with revealing a new diagnosis at your current job or how to answer touchy questions about your health during the process of landing a new job.

National MS Awareness Month || What NOT to say to an MSer

National MS Awareness Month || Welcome to MS: Here's a map, but don't expect to know where you're headed

Here's an interesting graphic I found which shows how progression (from the left) can potentially lead to the ultimate disabling symptom of MS: death.

It's a complicated map for sure, of what could be waiting for anyone with MS. Aye, there's the rub, the words "could be." You see, there's no certainty that the progression diagrammed here will lead anyone to that fatal end game on the right, nor is there any certainty that they won't. All of us MSers are doing everything we can imagine or accept to halt the progression of this disease, but just take a look at all the side trips we may or may not have to endure along the way. This is part of the madness that comes of having MS, the not knowing from one day to the next how we're going to wake up. Functional? Foggy? Falling down? How far can any of us plan in advance? Or maybe the question really should be, how gifted must we be in graciously backing out of commitments and obligations? Because of all the other things that are uncertain, there's one thing for sure: all the best laid plans o' mice and men are not going to matter one iota if we wake up one day unable to move, to see or to think.

I consider myself fortunate, somewhere stuck in transit between the minimal and moderate impairment tracks, as I have tremor, bowel, fatigue and cognition issues, but mostly I'm focused on managing my symptoms at work, refining relationships with those in my support systems, and working with my DMTs to prevent future relapses. It's pretty much all I can do to keep up with my roles as mother, wife, daughter and employee while trying to outlast the war inside my body. Still, I'm nowhere close to the right side of the MS subway map. Now there's a bright side!