The Naked Monk

Archive for the ‘Multiple Sclerosis’ Category

My wife Caroline’s lived with multiple sclerosis (MS) for eighteen years now. Canada has one of the worst MS rates in the world — 240 cases per 100,000 people when 30 cases is already high. A few drug treatments have been introduced over the years, more to the satisfaction of the pharmaceutical companies than of patients. They work a bit, some of the time, for some people, aren’t very pleasant, and are a far cry from being a cure. In fact, much of the medical literature around MS still centers on diagnosing it; even that can take months.

So when Paolo Zamboni, a vascular surgeon working in Ferrara Italy, announced a drug-free MS treatment and wonderful anecdotal cures, the MS world sat up. He reported that he’d found veins in the the necks of many MS patients to be constricted, as a result of which blood was unable to sufficiently drain from the brain. After widening these veins with temporary angioplasty, and sometimes stents (which are left behind), patients announced dramatic relief.  Zamboni called the condition Chronic Cerebrospinal Venous Insufficiency (CCSVI) and suggested that the reflux of blood caused a harmful build-up of iron in the brain, eventually producing lesions and MS symptoms.
 
This explanation leaves doctors with more questions than answers. For example, is the iron accumulation found by Dr. Zamboni a secondary effect or a cause? The issue of increased iron deposits in inflammatory sites has been under review for the last decade, and still is. Also, a follow-up study in Buffalo found less clear-cut results than those in Italy, including the existence of constricted veins in non-MS sufferers, and the lack of any constriction in a good portion of those with MS.

Many MS patients want the procedure now, feeling they can’t wait another five years while their body advances to a point of no-return. They’re antsy, upset with bureaucracy, foot dragging and doctors afraid of upsetting the pharmaceuticals. They want funding for standardized CCSVI screening and treatment now. Some are flying to Poland, where the procedure is available for $10,000.

So, worldwide, groups like MS Liberation in Canada are organising fundraisers, walks, talks etc. to raise awareness and work together to spur CCSVI testing, treatment and research. There’ll be a walk/protest on Parliament Hill for CCSVI action on Wednesday, May 5, 2010 at 1:00pm – 3:00pm Ottawa. Look here. At least, you can sign this petition to the Canadian Government to Support Zamboni’s Liberation Procedure for MS patients.

Nevertheless, the MS Society (Canada) has freed up funds with alacrity and is inviting proposals for studies ahead of its usual annual deadlines. Successful applicants will be announced in mid-June. Each project grant is worth $200,000. Altogether the society is contributing four to five million dollars for collaborative, multi-institution studies, some of them in conjunction with US researchers.

Doctors are paid to be skeptical, but they must be excited too. After all, if you were a neurologist with about half of your patients suffering from MS, wouldn’t you enjoy being able to give them some good news for once? Still, researchers are firm that clinical trails are best way forward because they:
a) provide appropriate safeguards; including ethical approval & consent
b) provide appropriate protocols for information that flows from the patients’ reponse in a way that provides the answers that will refine both diagnostic and treatment methods.

In 1848, Ryan Fleish related MS to vascular problems. Almost a century later in 1939, when anticoagulants were discovered, they were widely given to MS patients for 20 years — until the first randomized clinical trials established that the treatment was ineffective.

CCSVI also suggests that MS arises from a vascular problem, though in the venous rather than the arterial system. What’s apparent so far is that if the azygos vein is constricted, angioplasty (expanding it from the inside with a balloon) is effective because the vein remains open. If the constriction is in the jugular, however, the vein quickly collapses again. Stents can be inserted, but the procedure is now less straightforward and carries risk: stents sometimes migrate, even into the heart. Research so far also suggests that the procedure is of no benefit to those suffering from primary or secondary progressive MS — only those with the relapse-remitting form of the disease. Caroline’s prognosis is borderline, still relapse-remitting in some ways but progressive in others.

There are also difficulties differentiating the response rate. Evaluating results is difficult since the only way to find out is to ask patients; they’re inclined to find hope in the smallest relief — that’s the placebo effect — so their reports are considered unreliable.

Ever since multiple sclerosis was first named, the disease has caused fear, disability and misery to countless millions of people; in recent years the incidence of the disease has grown rapidly. This possibility of a new treatment is the only slender thread of hope that’s ever been offered, so the overwhelming response is understandable. The down side, of course, is that if it leads nowhere, the fear and misery will be redoubled. Let’s keep our fingers crossed. We talked of going to Poland, but Caroline’s opted to wait for a thorough protocol to emerge, and then see where it leads. One thing’s for sure, if doctors can’t find any constricted veins, there’s nothing to be done anyway. The wait is agonizing.

Caroline finally go over her MS attack by undergoing a hefty prednisone treatment. She’s avoided it for eighteen years, but finally succumbed — read the fact-sheet on this synthetic hormone, and you’d avoid it too. Still, to her surprise, she liked it.

Doctor Lapierre, her neurologist, smiled wryly. “Everyone likes prednisone.”

The fact is, it made her feel normal. Yes, we blog philosophers raise our eyebrows at the slippery idea of ‘normal,’ and run off on tangents of relativity, but for Caroline it was tangible — she had energy. Guess what she did with it … tidied the garage shelves, organized her desk and took pleasure in the ability to do what the rest of us take for granted.

Now it’s worn off and, once again, her reaction’s not what you’d expect. A resigned shrug of the shoulders—ah well, it was good while it lasted—is not how she feels. In four short weeks her experience of normalcy became, well, normalized, and the return to a symptomatic life has hit her like a ton of bricks.

It’s easy to come up with logical solutions to these dilemmas, especially if you’re not the one suffering from it. Don’t worry darling, you’ll get used to it again — no, I don’t say that; my response is tougher. I bite my lip and remember that her experience is hers alone, that all I can do is sit with her through her sadness and take joy from her depth when she finds ways to cope.

In spite of her fear that this physical affliction is compromising our relationship, it’s her depth that I love above all, and that’s not going away because of the MS. If anything, it just gets deeper. How lucky am I? Also, how lucky are Caroline’s coaching clients? Her work is more than just a living, it’s a passion — something she excels at because of her experience, not in spite of it. We all have our afflictions, but we don’t have to be limited by them.

“Can you believe this Stephen? I’m moving in space. It’s mind-blowing.”

No, this isn’t a memory from some long-ago acid trip; it’s Caroline last night appreciating the fact that she can stand up and look around without falling over. For ten days she lay completely still in a dark bedroom while her world spun crazily around her. Finally, after refusing it for seventeen years, she agreed to a two-week megadose of prednisone. Her body’s beginning to work again—at the cost of some intense side-effects; still, she’s not complaining.

Over the years she’s also avoided the various cocktails put together by pharmaceutical companies. They may be approved for human consumption, but they’re barely more than experimental shots in the dark. Their effectiveness is measured in arcane statistics that spin meagre facts: they may help in some cases for some people—if the side effects don’t get you first. Researchers, pharma companies, patients and their loved ones have one thing in common—all they have to grasp at is straws. Welcome to the MS community.

I write this to help you see why a brand new take on MS has stirred up some pretty intense feelings. Dr. Paolo Zamboni from Ferrara, Italy, has associated multiple sclerosis with CCSVI (chronic cerebrospinal venous insufficiency)—a narrowing of veins in the neck. He says that simple angioplasty has significantly relieved the symptoms of sixty-five MS patients (abstract here). From a medical researcher’s point of view, that’s not a statistically convincing number; to make matters worse, Dr Zamboni is no neurologist—he’s a vascular surgeon.

Multiple sclerosis patients and their families are aching to believe in this, and the press has already trumpeted it as a cure. That’s a loaded word that didn’t come from Zamboni, but it has drawn considerable scorn on him. All he’s suggesting is that a routine, drug-free procedure might bring some relief to an incurable disease that affects millions. Neurologists around the world are advising caution. Fair enough, scepticism’s in the job description. However, when Dr Zamboni suggested in Ontario this week that there’d be no harm in patients finding out whether they’d even be candidates for surgery, Canadian doctors accused him of being “irresponsible.” Sounds pompous to me, but then I have issues with establishments.

Who ever thought there might be such a thing as the politics of hope? Some say you must have hope, but Caroline and I have learned from bitter experience that hope isn’t a free gift. The disappointment of misplaced hope more than negates its temporary advantages; the return to hopelessness is devastating. And yet, how do we not have hope?

A second study in Buffalo NY has sort of corroborated some of Zamboni’s findings, though not as convincingly. The story continues to unfold, both up there in the medical establishment and down here in millions of MS-afflicted homes. I think if we’re going to call on anyone for restraint, it should be the press. Get the facts, stick to them and please, have a bit of respect and leave out the hype.

Meanwhile, we’ll just have to wait and see—and hope.

One morning this week Caroline woke up feeling dizzy and nauseous; she can hardly walk without toppling and barely has the energy to crawl out of bed. She has MS, so we assume it’s caused by one or more of the sclerotic plaques on her brain, brain stem and spinal cord. There’s nothing to do—no medication to take or any point in visiting the neurologist. He’s very kind, but just shrugs. We had a dinner invitation; I called and cancelled. For Caroline and me, this is ‘normal’ or, at least, one variety of it.

Everywhere I go, people stop and ask me how Caroline’s doing. Usually I say a polite, ‘fine, thank you.’ Sometimes I feel they really want to know, and I tell them what’s happening. They all agree on one thing: Caroline’s great—so brave, so inspiring. Some people even ask me how I‘m doing, which is nice. That’s when I appreciate my training as a monk—no, not the esoteric philosophy and cool tantric images but the acceptance that sometimes sooner or later, life brings something unwelcome. Thirty years of mindful reflection has prepped me for reality. Even though the most well-intentioned just don’t want to hear that, the truth is that sometimes—not often—I find Caroline in tears, pondering a slow and ignominious decline.

And then there’s me. When our initial friendship began to wax romantic she urged me to run for my life, lest I end up burdened with an invalid. How fair is it that I get stuck with someone who’s always sick, who can hardly go out and never knows if she’ll be able to do tomorrow what we plan today?

How fair? Well, it’s my choice. I get so much from Caroline; I consider myself a lucky man. That’s not my problem. However, my sense of helplessness is an issue. When I walk in on one of her rare depressions, I want to fix things, but I can’t. When she’s symptomatic I want to tell her that everything will work out fine, that the symptoms will go away and not come back, but I can’t. All I can do is listen as she explains what the plaques are doing—some of it invisible and weird—and hold her hand. Thank God—or Buddha or someone—I learned to accept, and especially how to listen. I can make meals, help her around the house and do her share of the chores, but she hates that. Nothing gets to her quite like the helplessness. Me too, though mine’s different.

Others assure her that ‘they’—the Hippocratic powers that be, I guess—will find a cure, that we ‘must keep up hope;’ or, they regail us with anecdotes of natural food diets, homeopathic cures and ayurvedic medicine. People are preternaturally unwilling to believe  that sometimes there’s nothing we can do. After countless promises of medical advance—and subsequent disappointment—we’re more sceptical than most, but they‘re inspiring examples of the human spirit; their solutions at least help them deal with our bad news.

The funny thing is, we’re really happy together. We live our restricted existence in the bright light of day, notwithstanding moments of gloom. Caroline bubbles with new ideas and projects; frankly, I have trouble keeping up with her—really, that’s not a platitude. Her sadness is a passing thing, and so’s mine. Life goes on. We recall that the oppression’s a passing mood, and don’t identify with it—not, at least until it ovewhelms us again. It happens. Then we follow its contours until we remember, this is something that’s happening to us. It’s not who we are. For a while it dominates, but then the ball’s back in our court, and we fit the MS in when we have time; it doesn’t control our every situation.

I was born asking awkward questions, and so was Caroline. We’ve both always second-guessed the things that everyone else takes for granted. That’s why we clicked, even though we’d grown very used to no one getting us. Somehow, for some reason, we’d been born under Socrates’ star and just believed that the unexamined life’s not worth living. Once we collided with each other, we found our union a magnet for other souls willing to question common sense and accepted truths. That’s when Quiet Mind Seminars was born. For me, who spent most of my life running from society, it’s a source of society I trust. For Caroline, who started out cripplingly shy (yes, really), it’s a spring board to her New Way Personal Life Coaching and a discovery that she’s got more to offer than she ever imagined.

Each of us took most of our lives to find our predestined professions. Now we’re there. Ahh! I’ve never been happier than with the brave souls who listen to my Quiet Mind Seminars, and Caroline’s perfectly at home, perfectly empowered, and unbelievably empowering as a personal life coach.

Life goes on. Thanks to you all for being part of it; it wouldn’t happen without you.