Saturday, September 26, 2009

Us and Them

Multiple Sclerosis strikes each of its victims differently. Some patients suffer from cognitive difficulties, others from muscle weakness and spasticity, and yet others from severe fatigue. Most patients put up with their own peculiar blend of Multiple Sclerosis symptoms . One thing we all have in common, though, is that we are no longer "well". We have been set apart by disease, we are separated from the main, and instead have become members of an exclusive club that none of us wanted to join.

Most of us are diagnosed while our symptoms are still fairly mild, and for a while, we can pass as "well", our new club membership hidden from general view. But as the disease progresses it becomes unmistakably clear that something is wrong. We are no longer just like everybody else, dealing with the usual day-to-day crap that life hands out indiscriminately. Breakups, money troubles, deaths in the family; hell, we're all in that together. But when struck with illness, and particularly with an illness like MS that advertises its presence like a highway billboard, we become something different. We become the "other", and many people begin to treat us as such.

Like our symptoms, the change that we see in how others interact with us is subtle at first, almost imperceptible, but becomes more obvious as the illness continues to unmask itself. The disease not only wreaks havoc on us internally, physically and emotionally, but externally as well, as it changes our relationship with the world and the people who populate it.

As patients progress from invisibly ill to visibly disabled, many express dismay at how diminished they feel by the crass and thoughtless actions of others. There's one important thing to keep in mind when confronted with such situations, three little words that very succinctly sum up the whole of mankind: People are idiots. That goes for everybody, me included. I can easily look back over my life and recall countless instances of my own sheer idiocy.

I fully remember, back when I was well, becoming incensed at the wheelchair bound person who had the nerve to want to board the bus I was riding to work on. Their utter disregard for my schedule required the driver to get up out of his seat, walk to the back of the bus, operate the wheelchair lift, secure the disabled person in place, walk back to the front of the bus, and finally get us moving again. Dammit, that gimp made me late for work! I was fuming. Yes indeed, I was, am, and always will be an idiot. And so will everybody else in the world.

This is not to excuse people for their insensitivity, but rather is an attempt to understand them. Truly, most of them know not what they do. Generally, people are so wrapped up in their own lives that they give very little thought to those around them, disabled or not. If they do take a moment to ponder us, we serve primarily as a frightening reminder of their own frailty. When they treat us like we are somehow made less by our disabilities, or as if being in a wheelchair somehow implies that we are mentally feeble, or if they simply act with utter indifference to our difficulties, most often their attitudes and actions have no real malice behind them. They are just doing what human beings do, each of them experiencing their own version of reality, featuring themselves as the center of the universe.

I find the best defense against this plague of solipsism is a good offense. Speak up, develop a style, let your humanity shout from the rooftops. When out and about doing the Wheelchair Kamikaze thing, I'm usually wearing a fedora, and have my cobra head cane attached quite visibly to my chair. I drive the thing with a boyish abandon, refusing to allow the wheelchair to turn me into a shrinking violet. Quite the opposite, actually, I'm much more rambunctious now than when I got around on two feet. Very often, I also have a big honking camera rigged to the chair, which usually grabs people's attention. Flourishes like this seem to remind people that there is a human being in that mechanical contraption, and one that might even be interesting to talk to, if you can catch up to him.

Dealing with friends and family can be a much more complicated matter. Those with whom we share affection can be almost as traumatized by our illnesses as we are. This trauma can show itself in many different ways, most of them unpleasant, and some quite troubling. They run the gamut from doting and over attentiveness to the severing of ties and the ending of long-standing relationships.

I've seen several of those closest to me show themselves to be almost entirely unable to deal with my encroaching disability. One of my oldest and dearest friends, with whom I've shared some of my most guarded thoughts and feelings, as well as an almost comical mutual hypochondria, and who helped me through years of emotional ups and downs, was simply incapable of maintaining our relationship once I got sick. My illness simply scared the living crap out of her. If it could happen to me, it could happen to her, too, and I think that this reality was just too much to handle. It's now been several years since we last spoke, and honestly, I don't hold it against her. I know this person well enough to understand that this seeming disregard actually speaks to just how deeply she cared about me. She simply couldn't bear to watch me wither. Although, if she reads this, as I suspect she might, I'll say this: pick up the damn phone the next time I call, or I just might get angry. Stop being silly. I'm the same me that I always was, and I promise, over the phone you won't be able to see my MS...

I've seen similar responses in several very close family members, as well. On the phone, things are great, the same as they ever were, but in person there is a visible unease, an awkwardness over compensated for by false joviality and babbling happy talk. Again, I try my best to understand that this is an expression of the heartbreak they feel over my getting sick.

When I first started experiencing real difficulty walking, and was unsteady even with a cane, I watched one family member’s blood drain from his face as he watched me struggle, and I thought for a moment that he actually might pass out. Now, it's high time he get over it, and learn to deal with the new, unimproved me, but folks in general don't deal well with change. When that change involves somebody they love very deeply suffering from a horrendous and progressively crippling illness, their brains kick into denial mode, and some are simply not strong enough to force acceptance.

I am blessed to have several folks in my life who treat me just like the same old jackass I ever was. When I'm with them in the wheelchair, the only difference between then and now is that I suddenly seem to have gotten a few feet shorter. I'm still the target of their barbs and wisecracks, and they're still the target of mine. Once they understood it was okay, they've joined me in joking about my predicament. After all, the whole thing is simply too absurd to not joke about. Me, in a wheelchair? Zooming around like a crazy person, wearing a vintage fedora, accompanied by a wooden snake complete with fangs and forked tongue? Rolling around, taking pictures from my new and somewhat unique vantage point, and videotaping my near collisions with objects both animate and inanimate, great and small? You've got to admit, it's kind of funny. It gets less funny the more disabled I become, but still, when I stop being able to laugh at myself, that's when it's time to check out...

I've found that the people I have the most trouble coming to terms with are old friends that know nothing of my illness, who have tried to reconnect. In this age of Google and Facebook it's very easy for people who long ago drifted out of your life to find you and try to reestablish connections. For some reason, I find that I have some sort of an aversion to this kind of thing. Although many who have tried to reconnect are people that I've thought of often and who I'd really like to know again, I find myself unable to breach the MS hurdle.

I know this is strange, since I certainly make no secret of my MS (as is evidenced by this blog), but I've yet to respond to anyone from my past who isn't aware of my illness when they've tried to "friend" me on Facebook. It's gotten to the point where I'm practically Facebook phobic, and usually avoid the site.

Many of these folks are people who knew me in my 20s and early 30s, when I was young, reckless, and living a very bohemian lifestyle. In some ways, I think I'd rather them just remember me as I was, forever young. Thing is, now that I'm older and wiser, and having dealt with this freaking illness, I might actually be able to be of some benefit to them, if only to serve as an example of why they should live their life to the fullest each and every day. Still, I can't quite get myself to respond. Even as I write this, it sounds foolish, because I actually miss many of these people, and would likely very much enjoy having them back in my life.

As I said before, I have only one explanation. Just like everybody else, I am unquestionably an idiot. A complicated, disabled idiot, but an idiot nonetheless...

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Wednesday, September 23, 2009

The Blog Slog (Stuff I've Been Reading)...

Visual artsImage via Wikipedia

There are an incredible (and overwhelming) amount of blogs out there on the Internet. Their quality varies from absolutely brilliant to pure crap, with the majority of them unfortunately tending to fall on the pure crap side of the spectrum. That said, there is a thankfully large pool of insightful, informative, and entertaining bloggers out there putting up great stuff on the so-called blogosphere.

I must stop here just to say that I passionately hate the word "blogosphere". It sounds like something that would inadvertently come out of your nose. If people are going to insist on inventing new words all the time, the least they could do is invent pleasant sounding ones . There's enough ugliness in the world without making up stuff that only adds to the ugly.

Come to think of it, the word "blog" is pretty unattractive on its own, even without adding "osphere" to it. Blog. It has the resonance of a racial slur. If somebody called me a "blogger" 10 years ago, I would have had no idea what they were talking about, but I probably would have punched them...

Anyway, back to the point of this post. I thought I'd share some of the blogs I've been reading lately, most of which are MS related. I don't mean to "dis" (another horrible modern term) any blogs I neglect to mention, because I know many of my readers have blogs, most of them very good blogs, and their exclusion from this list is not meant in any way to be disparaging. This is just kind of an off-the-cuff, "what have you been reading lately" list, just a perusal of some of the sites that have been gracing my computer screen these days...

  • Healing Through Multiple Sclerosis-I find this site to be mesmerizing. It's the work of a visual artist named Cathy, who lives in New Mexico and chronicles her emotional, spiritual, philosophical, and physical struggles with Multiple Sclerosis. Cathy manages to integrate her visual artwork with her words in a riveting, graceful synthesis, and the site often comes together like an illustrated prose poem. Quite often, this blog has a subtle beauty that is breathtaking...
  • Enjoying the Ride-this is a new site, the work of a fellow PPMSer named Mitch, who recently stopped working due to his increasing disability. He gives a very compelling account of his journey through the world of MS, and the wrecking ball effect the disease has had on his life. He's definitely not one for self-pity, but thinly disguised beneath his veneer of logic and analysis beats a very courageous heart. He has an ibot wheelchair, an incredible contraption which I'm sure is capable of some unbelievable Wheelchair Kamikaze hijinks. His site includes videos and photos, and I'm really looking forward to seeing how it develops.
  • Nourish: Living, Laughing, Whining-a very funny woman named Marie writes this blog, which is an often hysterical account of her daily struggles with MS and the world at large. I appreciate Marie's keen sense of the absurd, and her ability to mix the pathos, anguish, complexity, and ultimate delight of this crazy existence into paragraphs that make me laugh out loud.
  • Access Denied-a very honest and artful blog put together by Herrad, an MS patient living in Amsterdam. She always puts up lots of great eye candy, and her posts are literate and personal. Her husband Richie also has a blog, A Place to Scream, where he vents the frustrations of loving someone who has a dread disease. I feel very simpatico with Herrad and Richie's taste in music, art, and poetry...
  • Narrative Junkie-this one doesn't have anything to do with MS, but is a great resource for links and reviews regarding books, movies, quality television ( yes, it does exist), and music. The blog's creator, Jon, is a talented and intelligent writer who is always a pleasure to read, and who links to lots of funny and/or thought-provoking stuff. This site is always good for a ponder and a giggle. Highly recommended.

Well, that's it for now. Happy reading...

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Friday, September 18, 2009

I Guess Men Really Are Imbeciles...

DivorceImage by jcoterhals via Flickr

You see it portrayed in movies and on TV sitcoms all the time. Most men are jerks, insensitive clods who care only about themselves. It's always been my experience that women can be just as vile as men, but the results of a recent study seems to disprove that observation, at least in terms of how the two genders react when their life partners are struck with chronic illness.

Researchers from Washington University, in Seattle, found that "A man is seven times as likely to leave his wife when she becomes seriously ill as a woman is to abandon her husband". Sheesh, let's hear it for the boys...

The study looked at a number of different serious illnesses, including MS. In the 23 divorces studied that occurred when one member of the couple was diagnosed with MS, 22 involved the wife getting sick. Now, I know that MS strikes women in greater numbers than men, but certainly not in a 22:1 ratio. Similar numbers were found in couples dealing with the other serious illnesses looked at in the study as well.

Without a doubt, chronic illness puts tremendous stress on relationships. The stricken partner is suddenly faced with being put into a position of dependence, a position which many people are completely unaccustomed to, and emotionally ill-equipped to handle. On top of having to deal with a loss of independence, the sick person also has to deal with the shock and trauma of being sick. It's a double whammy.

The other member of the couple is suddenly burdened with the responsibilities of being the "caregiver", and sometimes I think that they have it harder than those of us who are ill. The caregiver may not have to deal with being physically ill themselves, but their lives have equally been thrown into turmoil. For both parties, the future once imagined, once dreamed of, has abruptly been snatched away. It's a raw deal, all around.

While women, I think, naturally tend to be more nurturing, most men have a well developed flight or fight response, something that's stuck with us since the days when people lived in caves. I've witnessed this phenomenon in action, when a close friend's longtime girlfriend developed a chronic illness. He fought hard along side her for quite some time , but gradually, over the course of a few years, the struggle simply became too much, he sunk into a deep depression, and finally ended the relationship. Given the circumstances, I couldn't condone his actions, but neither could I condemn him. I've wondered though, if the situation had been reversed, would his girlfriend have left him?

In my own marriage, my wife has served as a constant source of strength, hope, and inspiration, and has never let the gravity of the situation deflate her relentless optimism. I was diagnosed with progressive MS almost exactly one year after we were married, and I don't think anybody would have blamed her if she'd decided that this just wasn't what she signed up for. It's testament to the strength of her of character and the quality of her soul that she's stuck by me as the disease has relentlessly taken its toll.

The 6 1/2 years since my diagnosis have been a never-ending and often grueling series of doctor’s appointments, medical testing, and failed treatments, none of which has been pleasant or easy. Yet there is Karen, always by my side, somehow managing to keep me laughing at myself, at the world, and at the absurdity of the whole situation. Really, what could be more absurd than me, half crippled and zipping around in a wheelchair? Of course, there have been moments of despair, but together we have fought through them. Alone, I can't honestly say that I would have had the strength to persevere...

I'm sure many other women would've flown the coop, and certainly there are men who are slavishly committed to their sick wives. It just goes to show how important it is to choose the right person with whom to share your love.

In my years of belonging to various Internet MS communities, I've encountered countless people of both sexes who were abandoned by their spouses or lovers. Oftentimes, it seems the heartbreak of the lost relationship has caused more suffering than the disease itself. And yes, it does seem that most of those who have lost their partners are women.

So, I tip my hat to all the ladies out there who show us on a daily basis the real meaning of strength, through the power of example. And guys, I think we might learn a thing or two about loyalty and fortitude from those who in less enlightened times were called the "weaker sex"...

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Monday, September 14, 2009

Jim Carroll, RIP

Jim Carroll, poet/ex-junkie/basketball player/punk rock icon, died last Friday of a heart attack at age 60.

I'm not much one for heroes, but when I was a young man Jim Carroll seemed to me the epitome of decadent cool, the embodiment of a synthesis of brooding dark intellect and street credibility that made me want to be him. I was far from alone in this aspiration, there were seemingly hordes of us back then, clad in tight jeans and black leather jackets, who saw in Jim Carroll the perfection of imperfection, and who carefully nurtured our own inner Jims.

I blew off my last ever class at Boston University when a good friend pulled me out of the classroom to inform me that Jim Carroll was giving a reading down the block. Without hesitation, I left the last gasp of my formal education behind to join a sweaty crowd packed into a small room listening to Jim Carroll read from his latest collection of prose poems. I couldn't have picked a better way to end my undergraduate studies; it beat the hell out of sitting through one last session of "Alternative Methods of Telecommunications".

I suppose it's true that we don't actually mourn for the dead, but for the piece of ourselves that dies with them.

Regardless, we mourn...

Saturday, September 12, 2009

Don't Believe Everything That You Read

Unless you read it here, of course...

As somebody who keeps a close eye on MS related news, literally each and every day I come across news articles and press releases touting some amazing new medical breakthrough or groundbreaking drug therapy that promises to smite the MS beast. These bits of news are quickly gobbled up by the various Internet MS message boards, and generate all kinds of excited chatter in the virtual MS world.

The e-mail inboxes of MS patients are often filled with notes sent by well-meaning family members and friends, breathlessly announcing these findings. Now, there's nothing wrong with hope and optimism, as we'd be doomed without them, but it's important that patients learn to keep things in perspective, if only just to keep from suffering repeated disappointments.

The truth of the matter is that most of the breakthroughs generating these headlines amount to far less than meets the eye. Just today, there is news about a group of scientists who have identified two genes that seem to be vital in determining the severity of MS. Reading a little bit deeper, though, reveals that this discovery was made on mice, and the genes in question are mouse genes. I like mice as much as the next guy (as long as they stay the hell out of my house), but the simple fact is that MICE DON'T GET MS.

== Summary == g...Scientists induce mice to get diseases that kind of resemble MS (most often, an allergic reaction called EAE), and then test all kinds of things on these mice to see if they'll affect the phony MS that the mice have been given. Quite often, the drugs and therapies being tested prove to have a dramatic effect on the mouse MS imposter. So often, in fact, that I've come to believe that staring intently at a stricken mouse, or talking lovingly to it, will cure it of this MS pretender (note to self: get some mice, make them gimpy, apply for MS research grant, tell mice that you love them, schedule press conference). Unfortunately, the same benefits rarely carry over to humans, because, as I mentioned before, MICE DON'T GET MS.

Another flavor of MS news item that often creates a frenzy are early-stage drug trial results, typically released by the pharmaceutical company developing the drug in question. In order to meet FDA approval, experimental drugs must go through a three stage trial process. Each of these phases are usually double blinded, placebo-controlled trials, in which one group of patients is given the actual test drug, and the other a placebo. The trial process generally takes about 8 to 10 years.

Very often, the results of successful early Phase 1 or Phase 2 trials are loudly announced to the world, setting off a wave of excitement among MS patients starving for optimistic news. Tellingly, these announcements are usually found in the financial or business pages of newspapers or Internet news sites. Why is that, you might ask? The answer is simple, but somewhat disheartening. The primary motivation behind the release of such results is not to give MS patients hope that they can hang their hats on, but rather to pump up stock prices (in the case of the big public pharmaceutical companies) or generate investor cash (in the case of smaller, startup firms). Very early in my MS career, my neurologist, Dr. Big Brain, warned me to not take any of these reports too seriously, as the primary motivation behind them is financial.

One must never forget that the pharmaceutical business is a mega-industry in this country, and that the fortunes, both literally and figuratively, of pharmaceutical company executives rise and fall with the stock prices of the companies they run. In fact, as public companies, the big pharmaceutical companies are mandated to place the interests of their stockholders before the interests of the patients taking the drugs they produce. These companies must generate ever-increasing profits, or risk the calamity of falling stock prices.

There have been recent revelations of pharmaceutical companies burying unfavorable trial results data, and sometimes even misrepresenting such data (in other words, lying about it). Even when data is not actually misrepresented, the methods used to statistically analyze it can influence the favorability of the data one way or another. Naturally, drug companies choose to analyze the data in the fashion most favorable to the outcomes they desire, but very often, this does not result in the most accurate assessment of a drug's effectiveness and/or risk to patients. Unfortunately, the reported results of these giant shell games often toy with the emotions of desperately ill patients hungering for a little good news.

All in all, it's best to take much of the news generated about MS with several grains of salt. Between mice that don't get MS, and the financial wheelings and dealings of the pharmaceutical industry, much of the information out there just isn't very reliable. Don't get me wrong, I believe that there are great strides being made in battling the disease, but if even one quarter of the positive news reported about MS were true, the illness would have been cured years ago...

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Tuesday, September 8, 2009

Wow! Researchers Find That MS Has Negative Impact on Career Prospects!

Harvard University

Image via Wikipedia

This just in: a groundbreaking research study has found that "multiple sclerosis (MS) delivers a massive blow to your job prospects as well as your health".

Well, you could knock me over with a feather. Really, you could, and that has nothing to do with this research finding. It's one of the reasons why I had to stop working 2 1/2 years ago.

Anyway, back to the study. After doing exhaustive research, Australian researchers have discovered that MS sufferers are more likely to leave work as a result of their disease than people suffering from other chronic illnesses.

Not to minimize the severity of other chronic illnesses, but is this really a surprise to anyone? Unless an MS patient is gainfully employed as a paperweight, there's a good chance the disease will eventually have a detrimental effect on their job performance. Between fatigue, cognitive difficulties, and mobility issues, MS isn't exactly the equivalent of an MBA from Harvard as far as career advancement goes...

Is this the kind of thing that MS research money should really be spent on? What's next, a study showing that "MS Patients Are Much More Likely to Visit a Neurologist"? Or how about "Wheelchair Bound MS Patients Spend Much of the Day Sitting".

Let me save the research world some hard work and money. I've done some non-MS related research of my own, and these are my findings:

  • Flying over the handlebars of a fast-moving bicycle has a positive impact on the necessity of stitches.
  • Mixing copious amounts of vodka, beer, and bourbon has a negative impact on the ability to not vomit.
  • Telling the state trooper who pulled you over for speeding that the reason you were going so fast is "because I was pressing really hard on the gas pedal" has a negative influence on the mood of the state trooper.
  • The amount of time spent dating pathological liars is directly proportional to the level of your desire to stick your head in a toilet.

Oh, and one piece of research that is MS related:

  • Having MS sucks.

Where do I sign up for some research funding?...

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Sunday, September 6, 2009

MS and Me: Laid Low by a Stogie

Four cigars of different brands (from top: H.

Image via Wikipedia

At its heart, MS is a thieving son of a bitch, a stone cold felon that pilfers from its victims with complete contempt and utter disregard. It takes both great and small, a kleptomaniac that steals everything from vital functionality to the simplest of pleasures. I'd never advocate for cruel and unusual punishment, but MS deserves to have its hands chopped off.

This past Wednesday night I got very little sleep, due to insomnia, an old friend from way back before Multiple Sclerosis muscled its way into my life. I maybe slept for two and half hours. Then the alarm went off, and I slowly pulled myself together and made ready to go to two doctors’ appointments. That might sound simple enough, but as anybody with advanced MS can tell you, even when fully rested, the effort of getting out of bed, dressed, and ready to venture out into the world can be exhausting enough to have you diving right back into bed. Nevertheless, I did some basic grooming, struggled into some clothes, and motored the wheelchair out onto the streets of the city. Happily, the weather outside was absolutely glorious.

First up was my primary care guy, a quick visit just to update him on all of info and insights that the NIH has gleaned from my trips down to Bethesda. My PCP is a truly decent human being, who's been a genuine ally throughout this whole MS ordeal, and I try my best to keep him apprised of all new developments. Then it was off to the pain doctor, just a few blocks away, to simply get a new prescription of pain meds that I take, ironically, to sleep. I had to wait a while to see the doctor, who was busy performing some kind of a procedure on a patient who I could hear screaming in the next room, but I got my prescriptions and was soon on my way.

Once outside, despite being exhausted, I decided to head down to the Hudson River, just because it was so incredibly nice out. I was out and about anyway, might as well take advantage of the day. Figured I could take some photos, and smoke a good cigar.

Yes, I do like the occasional stogie. I'm fully aware that cigars are vile and disgusting things, not to mention bad for you. But life would be unbearably dull devoid of all things that are vile and disgusting and bad for you, and MS prevents me from partaking in most of my old vile and disgusting pleasures. If you scratch just a little bit beneath my well studied Zen detachment and artistic pretensions, you'll find the makings of a cigar chomping, liquor swilling, poker playing good-for-nothing. I can't help it, I come by it naturally. It's genetic. My grandfather was a gangster (really).

So I headed down to the Hudson, along which the city has built a beautiful riverwalk/bike path/park, and found myself a nice little spot to light up and take in the view across the river. And that's just what I did, listening to some Afro Cuban All Stars tunes to complete my little feast for the senses. All was well, the cigar was as sweet as the music, and despite being tired, I staked out my own little claim on peace.

After savoring the smoke to its natural end, I set about taking some pictures. Soon, though, I was pounced on by a growing wave of nausea and an anvil crashing headache. I tried to ignore it, and then to fight through it, but the photos I was trying to take all sucked, and I was feeling worse by the second. MS was exacting its revenge. How dare I assert myself and claim some peace and pleasure. The beast would remind me just who was firmly at the controls. I started home, my internal monologue a stream of profanity whose target just couldn't give even the slightest damn.

Once back in my cage, I crawled from my chair to the bed and pretty much stayed there for the next 18 hours, trying to drown my miseries in the grip of sleep. MS dug deep into its bag of tricks, and hit me with all guns blazing, dishing out its full retinue of spasticity, spasms, weakness, and overall wretchedness. At last I slept, and after finally getting some rest, I got up and stared at the TV a bit, and then went back to bed. That one cigar wound up costing me the better part of two full days. I could hear my MS cackling maniacally, gaining strength from my weakness.

Damned disease, physical criminal, robber of all that's good. I'm generally slow to anger, but if MS took physical form in front of me, I'd use my good arm and leg to kick it straight in the nuts and claw its eyes out.

At least the disease served to remind me that anger is an energy, yet another vile and disgusting thing that's bad for you in large doses, but which every now and then, in the right spot, can do you world of good...

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Tuesday, September 1, 2009

More MS on the Internet

Diagram of neuron with arrows but no labels. M...Image via Wikipedia

Since my last entry updated a post I made several months ago, I figured I'd keep the trend going by updating yet another post I made several months back, which was titled "MS on the Internet". That post was made up of a list of Multiple Sclerosis related websites that I find useful, and it received a good response from WK readers.

Since then, I've come across several additional websites that I think are of value. Most of these sites aren't devoted strictly to Multiple Sclerosis, but offer a wealth of information on neurology and general healthcare, in addition to having sections specific to MS...

Can you tell I spend way too much time on the web? website is run by the American Academy of Neurology, and covers a wide range of neurologic disorders, including a section devoted to Multiple Sclerosis. It also has a "Find a Neurologist" tool, which users might find very helpful.

The Neurology Patient Pages-This site contains summaries of research studies from the journal Neurology, prepared especially for patients. Although not all of the studies are pertinent to Multiple Sclerosis, the summaries are a rich resource for information on all neurologic disorders.

Wellsphere-A general wellness information site, with lots of good material on nutrition and alternative and complementary therapies. The site hosts some educational and user-friendly patient communities, and has even named Wheelchair Kamikaze as one of their "Top Health Bloggers".

Patients Like Me-This is a unique website, which allows patients to set up their own profiles, and track the progression of their disease and the treatments that they undergo. Covering a wide range of conditions and diseases, this site allows users to "compare notes" with other patients who share similar experiences. The site also hosts some active patient forums.

The National Institute of Neurologic Disorders and Stroke-This is the official website of the NINDS, which is the arm of the National Institutes of Health responsible for all government-funded neurologic research. The site is a treasure trove of information on all neurological disorders, as well as info on clinical trials and patient resources. comprehensive registry of all federally and privately financed clinical trials conducted in the United States and worldwide. The listings include inclusion criteria as well as contact information for all of the trials. If you're interested in getting involved in a clinical trial, this is the place to look. The registry is easily searchable by disease and location.

MedlinePlus-A terrific site that includes information on the latest medical news, drugs and supplements, a medical dictionary, a medical encyclopedia, and a directory of physicians and hospitals. by physicians, the site offers a wide range of information and services, including a patient forum, and a section devoted to patient stories.

The Health Care Blog-An great site for commentary on healthcare issues and policy. Makes for some very interesting reading.

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