Multiple Sclerosis

Wahls Elimination Diet vs Swank Diet: Which Is the More Effective Treatment for MS Related Fatigue? Ms. Lab Rat jumps into the maze.

Some Background (faithful readers can skip to paragraph 5):

As my faithful readers know, I am a machine with faulty wiring. Multiple Sclerosis has somehow managed to convince my T-cells to attack the insulation that surrounds the nerves conducting all the information my body needs to function optimally. This insulation is called myelin, and my myelin is ratty with scars. (Multiple sclerosis=many scars.)

When I got the diagnosis, I refused to accept my fate. I tried the first medication I was offered. And when that didn’t work, I tried a second. And when that didn’t work, I entered a clinical study of a new medication, one, I was told, that really made a difference. But as will happen 50% of the time with clinical studies, it turned out I was assigned to the control group. I didn’t get the new medication. I got a placebo. And I got more scars.

I not only tried new medications, I tried new doctors. (I moved around a lot, at first, so that part could not be helped.) When my fourth neurologist gave me the dour news that I was doing very badly, and could expect to do worse, and then much worse until I died, well, I switched to a cheerier doctor. Who gave me the same dire news, but with a big smile. I dumped her, too. Instead I found a brilliant researcher, Bibiana Bielekova. Researchers are always looking for better ways to do things. So am I.

Long story short, I talked Dr. Bielekova into letting me try an off-label drug that worked with the immune system, rather than fight it. Daclizumab works by boosting the population of Natural Killer Cells, which function like the good cops in the Wild West of my immune system; the Natural Killer Cells keep the rouge T-Cells, or bad cops, at bay. Daclizumab worked. The T-Cells stopped attacking my myelin. Eventually, the National Institutes of Health (NIH) funded a study of Daclizumab. I was lucky enough to join the safety arm of the study, so I was assured a constant supply of Daclizumab. In the last ten years, this medication has been so effective, the T-cells have only once managed to create a new scar. Earlier this year, the FDA apporved Daclizumab under the name Zinbryta. On the day I injected my last dose of free study medication, I was accepted into a new clinical trial.

Faithful readers, jump in here:

Finding a drug that stabilized my MS only solved half of my problem. While my T-cells have stopped chewing on the fatty myelin that insulates my nerves, the many scars created by years of insatiable gobbling still interrupt the signals of my central nervous system. I have to cope with fatigue, pain, lack of coordination and balance, and a digestive system that’s out to lunch. Oh yes, and a brain that continues to shrink. You would think, then, that a person as proactive as I am would have immediately acted when I saw a very convincing TED Talk by a smart researcher who overcame an even worse case of MS than mine. Like me, Dr. Terry Wahls took the latest greatest MS medication. And like me, her MS only got worse. Dr. Wahls soon found herself confined to a tilt-recline wheelchair. Unlike me, Dr. Wahls is a physician. She read the latest medical research about diseases in which brains shrink. She read studies in which animal brains had been protected from shrinkage using fish oil, creatine, and co-enzyme Q-10. She started taking human proportioned dosages of these substances, and started getting better. This was her first round of self-experimentation. Slowly but surely, she tweaked her diet to include and exclude certain nutrients and ultimately found herself out of the wheelchair, biking to a full day of work as a doctor, and, of course, promoting the diet that saved her. She managed to get the Multiple Sclerosis Society to chip in 1 million dollars to fund a scientific study to compare her diet with the Swank Diet, one that has been  found to help people with MS for decades. I, who was somehow too intimidated years ago to follow the Wahls Protocol, have now agreed to be part of this study, which is going to be a much more onerous and complicated option than simply buying her book and following along. How much more onerous and complicated? I’ll share the details in my next post. But strange as it is, a Lab Rat is a Lab Rat. I would rather experiment on my diet in a study as a contribution to the greater public knowledge than to simply tinker with the diet on my own.

How about you? Have you ever participated in a clincial trial? Would you?

 

 

Decisions, Decisions

Last Friday, I had a simple decision before me: ziplining or kayaking?

My friend Elaine and I had agreed to go ziplining—oh, two Octobers ago, and somehow our plan kept getting put off. We were on the verge of letting yet another bright autumn slip away with no zip. Neither of us wanted to be the first to admit that we are no longer in the market for thrill seeking, that a sedate afternoon of kayaking is now more our style; thus the question of which activity to pursue was still dangling by a text message thread as I entered my optician’s office for my annual exam.

I wasn’t all that keen on keeping the appointment—I already had a lifetime supply of contact lenses. This is how old I am: I am so old, I remember when “soft” lenses were not yet a thing; when contact lenses were suffocating brittle little plates. A ripped contact lens meant penury, for in those days one contact lens cost far more than today’s one year supply of soft “disposables.”

As the oldest of three, then four, severely myopic children in a family with little or no disposable income, I would have been astonished to learn civilization would eventually produce disposable contact lenses. To this day, I find the concept offensive. Why throw out a perfectly viable technological miracle?

We children wore our contacts until the lenses cracked, or until our prescriptions worsened, whichever came first. As such events occurred with horrific regularity, our severely myopic family of five, then six, was a winning lottery ticket for our local optician. I couldn’t help but resent our optician’s relative wealth. And feel deep personal shame every time I let the family finances down…again…while contributing to that mustachioed man’s vacation fund.

I’ve never quite outgrown that shame, or my indignation when suddenly little slips of plastic went from being worth hundreds of dollars each to being sold in 365-packs for way cheaper. There has never been an intermediate stage of cheap single serve contact lenses…except in my medicine cabinet. I still wear my contacts until they rip or until my prescription becomes obsolete. I keep reaching what I think must be the outer limits of nearsightedness—a -10 on what I assumed had to be a scale of -1 to -10—only to learn in subsequent visits to subsequent opticians that there are further negative integers.

Last Friday, I hit a new low: -13. And that wasn’t the bad news.

The bad news was that the flashing lights I’d sensed as coming from behind my left eyeball weren’t some silly commonplace symptom of my multiple sclerosis, as I’d assumed. The optician referred to those flashing lights as an “event” that signaled my retina was maybe thirty days from detaching. She then recommended I get an appointment thirty days out, though I should see her earlier, if “a dark curtain falls across your vision. Or an array of floaters.”

I made the appointment to be polite; I was already thinking of consulting a specialist. There had to be a more proactive approach.

I refused to enter “detached retina” on Google. Instead, I texted my husband about the problem, figuring he’d Google for me, and spare me the worst. He texted, Don’t stand on your head. Stay away from roller coasters.

Excellent! The zip-line vs. kayak decision was made for me! No zip-line.

This retina crisis was wonderful. Clarifying. I would put my affairs in order. Pronto.

Another decision—vote early or vote on Election Day?—resolved. I would vote first thing the next morning.

The future is…more and more problematic.

For months now, I’ve been looking forward to driving up to Iowa City to participate in an exciting study funded by the MS Society which will compare two popular diets to treat MS-related fatigue. I’ve been fascinated by the possibility that MS can be treatable through diet, but I’ve always been hesitant to go all-out. Joining the study is going to force me to be one hundred percent compliant, while also being a force for the greater good.

And while participation in the study has been reason enough for visiting Iowa City, I’ve also been planning to stick around town the following day for a ceremony to honor James Alan McPherson, a brilliant writer and compassionate teacher of mine from the Iowa Writer’s Workshop. Other writers I love and esteem and/or have read will be traveling from around the country to gather in his honor. I’ve been reading his work all week, revisiting some of the very themes I remember him bringing up in workshop, to little avail. Most of us students weren’t yet well equipped to respond. I, for one, was too young at the time, too narrowly focused. Which is why I’ve appreciated his words being frozen in time in his essays, waiting patiently for decades for me to finally grow up.

While I’ve lost my chance to ever talk to Jim again about Spartans vs. Athenians, I’m happy to say that at least I did have a chance to reconnect with him five years ago, at an Iowa Writer’s Workshop Seventy Fifth Anniversary Reunion. He had been sitting alone in a crowded room; unrecognizable in that he was thoroughly unacknowledged. I sat and talked with him a long time, comparing notes on living with chronic pain and chronic illness. When I left him, I didn’t expect he’d make it another five years; I don’t think he was expecting that, either. The ceremony for him will be a vast and profound validation. It will be something to see. I’ve wanted one of us to get to see it.

So I went to a retina specialist. While I carry that old grudge against opticians, I have all the respect in the world for ophthalmologists. I’d expected an ophthalmologist would be proactive, would have some sort of plan to prevent a “dark curtain” or “an array of floaters” from falling across my vision. Surely, a retina specialist wouldn’t keep me in suspense for thirty days.

The retina specialist saw me promptly. He took a very fancy picture of my eye. That was service. He said I should make an appointment to see him in thirty days, or to call him immediately , if  “a dark curtain falls across your vision. Or an array of floaters.”

I had to admit it. The optician wasn’t so far off.

But this guy is better. He has to be. He told me he can fix the problem. He told me that if I get to him early enough in the trauma, he can fix the problem in his office. But if I get there later? He can fix it in the OR.

I already knew from my husband’s Google foray that those OR surgeries take weeks to recover from.

It seemed to me, then, that it was a good thing I lived a mere ten minute walk from his office.

“So,” I ventured, “I like to travel. Do you think it’s a good idea to travel right now?”

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The specialist answered soundly, “Travel.”

I went ahead and made an appointment with him for thirty days out.

Yesterday, I packed my bags for a three day trip to Iowa City. It was a gray day; perfect for my light sensitive eyes. I made it seventy miles before I started seeing floaters, squiggly little lines wafting across the gray sky. I wondered, how many floaters constitute “an array?”

I still had four hundred miles to go. There was so much waiting for me at the other of this trip. People I haven’t seen in five years, in twenty years. People I’ve been eager to meet. But the only person I was thinking of was my husband. How awful it would be for him to get a phone call asking for a rescue. Or worse, a phone call from a far-away hospital.

I had to make an uncomfortable decision.

I could keep driving, keep asking myself, every few miles or so, is this an array?

Or I could turn around.

It wasn’t a difficult decision, after all.

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Once A Lab Rat, Always a Lab Rat

The NIH study that has nurtured me since 2010 is over. The day I’ve been anticipating with measured trepidation has finally arrived. A few hours ago, I took the last of the vials of free medication from the NIH out of my refrigerator, and injected.

If the drug had not passed the FDA approval process, this would have been a very sad day. But it did pass. The fruition of the study is available commercially as Zinbryta. Dr. Z., my neurologist, has already set in motion a smooth transition for me; I’ll be the first of his MS patients to purchase Zinbryta. I won’t have to miss a dose of the drug that has given me my life back.

So today, then, marks the happy ending to my life as a Lab Rat?

Not so fast.

Today marks the closing of one chapter. And the opening of another.

This morning I received a phone call from a research assistant named Brianna. She asked me ten easy questions designed to provoke pleasant answers, such as, “Today is Tuesday, September 15, 2016” and, “Barack Obama is the President of the United States.” At the end of this quiz, I found myself qualified to be a Lab Rat in the MS Diet Study.

As any faithful reader of this blog knows, I am very interested in the role of diet in the management of MS. I’ve been intrigued by the Wahls Diet since seeing Dr. Wahl’s TED talk; I couldn’t help but be impressed that she has managed to eat her way out of a reclining wheelchair and back to full time medical practice.

This study will randomly assign me to either the Wahls Diet or the Swank Diet. As it happens, I am comfortable with both. Dr. Z. has met many people with MS leading active, healthy lives on the Swank diet. It will be a win for me either way.

I don’t have to ditch Zinbryta to participate.

Could a lab rat be any luckier?

Another fun perk of this study: I will be traveling to Iowa City, home of the Iowa Writer’s Workshop, where I got my MFA in fiction, and, come to think of it, my MS diagnosis. This Lab Rat will be traveling full circle.

I do hope you will follow Ms. Lab Rat to my next maze in Iowa City. I won’t be able to blog about which MS Diet I am assigned to, because the researchers must be blind.

I am so very grateful, above all, to my husband, who likes our current diet very much, but is willing to give an MS diet a try.

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Reality Check

Early this morning, Dr. Z. said softly, “You have a very severe case of MS.” Dr. Z. is the most dapper neurologist in town. He was wearing yellow wool pants and a pastel striped tie and fancy orange loafers, the kind with the little pinholes. I’d dressed up in a floral dress and a purple scarf and a white summer sweater with pearly buttons. My hair was back behind a perky blue and white polka dot hair-band. The healthy façade was futile. We were looking at the MRI scans of the brain behind the hairband.

I couldn’t help but notice his use of present tense. I always say, “I used to have a severe case of MS.” Because my multiple sclerosis has been fairly well controlled since I first went an earlier formulation of the drug that is now being released as Zinbryta. I am able to live a full life; I do meaningful work, I exercise, I spend lots of time with friends and family.

“You have scores of lesions throughout your brain, and significant brain atrophy.”

It wasn’t news that I had a lot of brain lesions. For over two decades, MRI’s have revealed those lesions festooned throughout my brain with the all the density and regularity of Christmas tree lights.

But brain atrophy?

No neurologist had ever said the word, “atrophy.” Most doctors have emphasized the positive—how I present in person rather than how I present via MRI. I’m used to hearing, “You look great!” from neurologists and lay people alike.

Please don’t conclude that Dr. Z. was being negative. He wasn’t. He was being honest. Because I’d forced him.

What kind of patient goes on experimental drugs? The kind of patient who likes to experiment. And since Zinbryta is officially on the market, and I am no longer taking it for research, I’ve been restless to see what new way I could approach my disease.

I’d been telling Dr. Z. about how once, while at the NIH in Baltimore, I’d met another MS patient who’d also been on the original formulation of Zinbryta, way back in the days when it was delivered monthly through IV infusion instead of through a slender needle. As we two lab rats hung out by the MRI machines, we’d compared notes on the two formulations, and had agreed that while both versions of the medication were effective in stopping the progression of the disease, the earlier version had felt like it had shrunk the MS activity to insignificance.

Now I wanted to know, was there any chance Dr. Z. could prescribe the infusion?

There was not.

I then asked about the diametric opposite treatment extreme; some people I admired were treating their MS with diet and exercise alone. I have a great diet and exercise regime; was it possible that my lifestyle was responsible for my apparent good health? Could I possibly experiment with a medication vacation, once my supply of Zinbryta ran out?

And that’s when Dr. Z. said gently, “You don’t have any brain left to experiment with.”

Sometimes the truth hurts, at least for a moment. But in my experience, the truth is always more manageable than any lie. I thanked him. It was actually comforting to hear confirmation of what I feel, and conceal, every day. That every day I perform a thousand little miracles just to make it through.

Did I cry? Yes. In the elevator, a little. And one big sob in the car. But I was calm through the appointment.

Dr. Z. observed that medications alone were never sufficient for MS treatment. The patients he’d had on the best medication available to him still got MS relapses if they continued to make poor lifestyle choices.

We agreed that I had to stick to good lifestyle choices…and to the good medication that has worked for me thus far. I have (present tense) a very severe case of MS. Thanks to Zinbryta, I also have the luxury to expect that the next time I see him will be for a follow up appointment in three months, and not in a state of emergency during the MS relapse I can’t afford to endure.

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Rerun: The Cold Keeps the Riff Raff Out

I probably should not admit this; under certain circumstances, I do give up. I give up on big things. Things I love. Things that define me to myself. A few months ago, I gave up on swimming at the YMCA.

Swimming is one of the few cardio-vascular exercises still open to me; as I explained in an earlier entry, I have to avoid raising my body temperature. Any time I get too hot, my multiple sclerosis symptoms rear their ugly heads. It gets kind of tricky to keep fit while also keeping cool. Exercise isn’t about keeping cool; exercise is about burning calories. “Feel the burn;” that’s the mantra. Problem is, when I feel the burn, it means I’m about to go down.

I’ve found all sorts of ways to work around this hitch. I can use the weight machines at the gym; I simply lift the lightest increments. I walk over to the water fountain after each machine, and take a drink to avoid overheating. Then I go on to the next machine; perform my repetitions. Rinse. Repeat. My system works. I do get toned. I don’t get overheated. There is just one flaw. I do get bored.

I am not about getting bored. I am all about joy. Did I say exercise is about burning calories? That’s a boring way to look at it. Exercise, at its best, is about celebrating the body, at its best. Exercise is an act of joy.

For me, the most joyous form of exercise is swimming. My husband calls me a mermaid, because even on those days when I cannot walk, when I cannot put one foot in front of the other, I can still swim. Being in the water levels the playing field. The water exempts me from negotiating my balance. It exempts me from gravity. I know why the dolphin grins.

After all this waxing rhapsodic over swimming, you would think that nothing would stand in the way of me and a swimming pool. Let me introduce you to the women of the YMCA locker room. Gentlemen, avert your eyes.

My first impediment was an aging Southern Belle, who introduced herself by stating, “You’re not from around here, are you.” She asked me for my name, and my birthplace. I told her I was born in the Bronx.

The Southern Belle stiffened. I added, I thought helpfully, “Bronx, New York.”

“Oh, I guess that’s all right.”

A few visits later, The Southern Belle grilled me again about my birthplace. The first time she’d asked, she’d been poolside, looming over me as I backstroked. The second time, I had just stepped out of the shower in the locker room. The Southern Belle apparently felt very comfortable in the locker room. As she was asking me about my birthplace, she was languidly applying her hairdryer to her billowy private parts. Startled, I averted my eyes. I towel dried and dressed as quickly as possible. The hairdryer droned on. I could not help but notice as I passed The Southern Belle on my way out that she was still aiming her hairdryer where the wind should not blow. I checked the clock on the wall. Eleven thirty.

Let me tell you something about the daytime YMCA regulars. They are creatures of habit. I am not, and can never be, a creature of habit. I am not, and can never be, a “regular.” I am a creature with brain shrinkage. I could not be tethered to a schedule, even if I wanted one. When I plan, MS laughs.

This YMCA regular was getting in my way. I figured she couldn’t possibly linger at the YMCA all day. The Southern Belle had to eat. By the looks of her, The Southern Belle had to eat quite a lot. She would likely take a break for lunch. I would no longer go to the Y in the morning. I would go instead at noon.

This plan was brilliant. I encountered The Southern Belle on her way out. We were both fully dressed. She may not have recognized me; she didn’t ask me where I was born. I changed and showered unmolested by her questions; and arrived at the pool—with all the other lunchtime swimmers.

I waited for a free lane. One swimmer was gracious enough to offer to share his lane. I accepted.

I like to lose myself when I swim; I’m pretty sure I’m not unique in that regard. I knew what he was giving up. I tried my best to be a good neighbor; to keep to one side, to keep a pool length between us. All that neighborliness was exhausting. The man was a shark. He never stopped moving. I often outlast fast swimmers. I figured, if I just held out, I’d eventually have the lane to myself. Then I noticed the waiting swimmers still poolside. Not a chance.

Maybe going to the YMCA at noon was not such a brilliant idea, after all. I remained undeterred. I could always go in the early afternoons.

Little did I know I would encounter an even more terrifying locker room adversary; an adversary who could get into my head. I feel almost guilty introducing her to you, because she’ll get into your head, too.

But maybe she needs no introduction; chances are, you already know a version of her. Perhaps you are a version of her. She is The Suburban Soccer Mom. All she does is judge. And judge. And judge.

Oh yes, and one other thing; The Suburban Soccer Mom never shuts up.

My first early afternoon swim went…swimmingly. I’d had a lane to myself. I could shut out awareness of all the other swimmers, but better still, I could shut out all my own thoughts. Swimming is my moving meditation. My mantra is simple…I count as I stroke. One. Two. Three. Breathe.

I headed to the locker room showers, dripping and peaceful. And then I heard a strident female voice.

“He’s says the kids should be there to have fun. I’m sorry, but if my daughter were winning a game every once in a while she’d have a lot more fun. Correct me if I’m wrong. Is there something not-fun about winning? Isn’t winning the point? Am I wrong, here? Am I wrong?”

A second, softer voice responded eagerly; a voice so soft I couldn’t hear a pandering word.

I stepped in a shower and turned on the water, hoping to drown The Suburban Soccer Mom out. I tried to regain the calm I’d felt after forty-five minutes of laps, of forming no words in my head besides “one, two, three.” I lingered in the shower a bit longer than usual, giving the Suburban Soccer Mom ample opportunity to exhaust her case against her daughter’s fun-loving/fun-destroying soccer coach.

As it happened, by the time I was done with my shower, The Suburban Soccer Mom was done lambasting her daughter’s soccer coach. She’d moved on to lambasting her father-in-law.

“He expects me to feel sorry for him because he just had back surgery. Why should I? It’s his own damn fault he needed the surgery. He’s too damn fat. His spine couldn’t take it. No surprise there. He should have gone on a diet. He should have gotten off his fat ass and exercised. Instead he runs to a doctor. You want to know the real problem with health care costs in this country? People are too damn lazy. They’re too damn lazy and they’re too damn fat. They overeat, and then they transfer the burden to the rest of us.”

I had to pass The Suburban Soccer Mom on my way to my locker. I didn’t give her glance. I try to avoid looking directly at the other naked women, with the presumption they might extend the same courtesy to me. Even though I didn’t look at The Suburban Soccer Mom directly, there are things I can tell you for certain about her appearance. The Suburban Soccer Mom is blonde and trim, though perhaps no more trim than I am. I can also assure you she must appear perfectly, unassailably normal. She couldn’t possibly tolerate herself otherwise.

I could not help but look directly at The Suburban Soccer Mom soft-voiced companion; she was cowering in front of my locker. The soft-voiced companion was soft-bodied. Her eyes bulged out in terror at the sound of the word, fat.

Once again, I found myself changing into dry clothes as quickly as possible to make a speedy exit from the YMCA locker room. I pitied the The Suburban Soccer Mom for her malady; an unrelenting/unremitting chronic illness that was causing her to assume she is surrounded by inferiors. If only she’d leave off judging everyone, she could be a happier person. If only she was more like…me.

On subsequent visits I heard subsequent rants. When The Suburban Soccer Mom was in a good mood, she’d alternate her judgments of other people’s failings with reports of her own successes; the laps she’d swum, the triathlons she’d won. According to The Suburban Soccer Mom, the world would be a much better place if we would all be more…like her.

And that’s how I ran afoul of The Suburban Soccer Mom. One afternoon she happened to notice that I am not at all like her.

That particular afternoon, I was fighting against fatigue. Fatigue is one of the toughest elements to deal with in MS. It feels like a personal failure. The Suburban Soccer Mom in me told me to drive to the YMCA and do my laps, though The Henry’s Mom in me thought I should save my energy so I’d still have enough vigor to pick my son up from school, to snack with him, to talk with him, to walk the dog with him, and after all that, to make the family dinner. I compromised. I decided to still swim laps, but only for fifteen minutes.

As I stashed my street clothes in the locker room, I heard The Suburban Soccer Mom announcing to the assembled that she and her daughter would be going out for a jog. I happened to return from my fifteen-minute lap swim just as The Suburban Soccer Mom was announcing to those assembled that her daughter had just texted to cancel their jog. Oh, Sububran Soccer Mom’s daughter, wherever you are, I took the bullet for you that time. Your mother looked up from her cell phone, and found a target in me .

“Well, that was the shortest swim I’ve ever heard of.”

That was it. That’s all The Suburban Soccer Mom said. Yet I didn’t go back to the YMCA for two months. The next time I felt fatigue, I stayed home. And so on, for almost three months.

I shouldn’t bother to spend any more energy dissecting what is wrong with The Suburban Soccer Mom. I ought to figure out what the heck is wrong with me. I gave up something I loved to avoid someone I hated. Maybe I ought to do a little less hating. Maybe the prescription I’ve been writing for The Suburban Soccer Mom is prescription I ought be writing for myself.

I’ll have you know that on Friday I did return to the YMCA. There was a notice posted on the front door, regretfully announcing that though the lifeguard was on duty, the pool heater was broken.

Perfect. I learned a folk saying back in the days when I lived with the good, decent people of Minnesota. The cold keeps the riff-raff out. Sure enough, the pool was empty. I could swim in any lane that I pleased, for as long or as short a time as I pleased. Better yet, the locker room was empty, too.

I’ve got to go. The pool is only open another hour. I’ve got to get in my fifteen minutes of laps.

author’s note: On the drive home from a cold, solitary swim, I heard this thoughtful discussion about judging the judger on NPR. Listen and learn: http://www.npr.org/2011/01/10/132809627/concrete-ways-to-live-a-compassionate-life

For my review of “12 Steps to a Compassionate Life,” the book under discussion on NPR that day, connect to Goodreads http://www.goodreads.com/review/show/144053847

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Power Outage

Six days and six hours after Hurricane Irene blew out the power, a friend in Connecticut finally got her electricity back. She posted on Facebook that she’d started the dishwasher and the washing machine. She wrote: “I have to say it wasn’t entirely a negative experience. I’m actually happy to have experienced it.”
I have a hunch I know what she means. I’ve lived through a few power outages. They transform the humdrum household into an exotic locale, where previously automatic tasks require improvised solutions. With every reflexive, futile flip of a light switch, we are reminded of how much we ordinarily take for granted. We feel entitled to our electricity, darn it. And then we adjust. Instead of cursing the darkness, we light candles. We grill all the meat. We gather together. We entertain each other. We tell stories. We sleep deeply. The remaining food rots. The dirty clothes pile up. We understand the power company is working tirelessly to fix the problem. We wish they’d hurry the hell up. We understand it is useless to complain. We complain. We wish everyone else would quit complaining— we’re all in the same boat. We’re all in the same boat—and that’s kind of cozy. The power comes back again. We are oh so grateful for a good five to ten seconds. Then we scatter—one to load the washing machine, one to buy the milk, one to download distractions. Normal life resumes, with all its quotidian conveniences and isolations.
An attack of multiple sclerosis is also a power outage. The brain blows another fuse, and a function is lost, maybe for a few days, maybe for forever. A previously automatic task requires an improvised solution. I feel entitled to cross a room on my own two legs, darn it. And then I ask for assistance. I take my husband’s arm. My son pushes the wheelchair. The family draws closer together. We see ourselves as problem solvers. We wonder when the power will come back. We understand the pharmaceutical companies are working tirelessly to fix the problem. We wish they’d hurry the hell up. We understand it is useless to complain—we don’t know anyone in the same boat. We prepare ourselves to live this way forever. “This way” doesn’t stay this way for long. It gets better. We are oh so grateful. Or it gets worse. We adjust.
We never take my relative health for granted. No one understands the vast complexity of the central nervous system better than a person whose central nervous system is constantly on the fritz. The basement fuse box presents a laughably simplified metaphor. We are only dimly aware of the multitude of problems that could yet occur, and we are fully aware that such ignorance is bliss.
After our last multi-day power outage, I proposed that maybe our family could consider off-the-grid Sundays. By off-the-grid, I envisioned something sort of fuzzy and candlelit, nothing as hard-core as an unplugged refrigerator, although an unplugged stove, and the consequent necessity for Thai take-out, seemed perfectly reasonable to me. Needless to say, I was met with immediate opposition.
There’s no need to opt for hardship. Hardship will come to us. It’s too bad we can’t fully rejoice with every flip of an operative light switch, or with every synaptic leap in our central nervous system. But we can’t. If MS relapses have any benefit at all, it’s that I keep getting new chances to recover, whether fully or partly. I get to be aware of the health I’ve still got. It’s not often that I’m not in pain. I know, then, to celebrate its absence.

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Ask About Your Medication

Note from the Rat: The medication I refer to as “daclizumab” back in 2011 is expected to be marketed to the public as “Zinbryta.”

It is good to ask questions. Even when the answers aren’t always pleasant—especially when the answers aren’t pleasant.
No one likes to ask questions when things are going well. My first months on daclizumab went really well, so I didn’t bother to ask my nurse about the origin of the clear liquid dripping down the IV tube into my veins. Whatever it was, it was working. My multiple sclerosis symptoms were fading into the background. I couldn’t ask for more than that.
So I didn’t.
Month after month, I had the same nurse arrive at my home for infusions. We took to chatting. The heparin scandal came along, taking the lives of 81 Americans who had assumed—as I’d assumed—that nothing fatal could be lurking in a labeled medication. That month, the nurse told me it wasn’t necessary to flush my veins with heparin. I gave her the go-ahead to use it anyway. I didn’t want to mess with success. Eventually, though, I think we may have agreed to skip the heparin flush. Daclizumab kept on working, either way.
The January 2010 home infusion seemed no different than the others. Neither of us knew it would be our last. As usual, my blood pressure was low, as was my temperature—96.8. As usual, I had no troubling new symptoms to report. The drip itself never took all that long—maybe 15 minutes— and as usual, the nurse and I chatted those minutes away. The nurse mentioned she’d seen me lifting weights at the rec center while she’d been walking the track. I told her it would be OK to interrupt me the next time she saw me there. Neither of us could have guessed there wouldn’t be a next time.
I didn’t start to feel funny until the nurse was gathering her bags to leave. Even then, I didn’t feel funny enough to stop her. My temperature shot up during the interval between the thud of the front door and the clap of the screen door —the screen door hinge is on backward, which makes for a thirty second delay.
I headed straight for the couch, and caught a glimpse out the window of the nurse’s car pulling away. I lay down. Something wasn’t right. At that time in my life, it was unusual for me to lie down while the sun was still shining. I dragged myself off the couch and up the stairs to take my temperature. 98.8.
I wasn’t sure if I should call the nurse. Everybody knows 98.8 is not a fever. But 98.8 was two degrees higher than my temperature of just half an hour before. I was comfortable with that nurse. Even so, I didn’t want her to think I was a big baby. Or a hypochondriac. Or a fool. But then I got to wondering about the contents of that IV bag. Who was to say it wasn’t tainted, like the heparin a while back?
I swallowed my pride. I called the nurse and left a message.
It was a good thing I did.
The high temp resolved itself without any apparent consequence. I felt sheepish when the nurse returned my call that afternoon. But then I heard her news. I quit being sheepish, and shifted into high alert.
Apparently, after listening to my message, she’d called the pharmacist to ask about my drug.
“Guess what he told me? He said I just gave you the last of that medication. It’s been taken off the U.S. market.”
I asked if there’d been another safety scandal. She assured me there had not. “Someone’s bought the entire inventory.”
I wondered aloud, “When was anyone going to tell me?”
The nurse didn’t have an answer for that.
If I hadn’t gotten that little spike on my temperature, I could have easily gone another month without knowing I had to line up a new MS medication. I’d already gone through all the standard MS meds, with no positive results, which was why I was taking an off-label drug in the first place. I didn’t know what I would do without daclizumab. There wasn’t another drug out there I knew of.
There’s a happy ending to this little anecdote.
Yes, it’s true I didn’t get the answer I expected when I asked about my medication. But that unexpected answer motivated me to ask more questions. I managed to track down Bibi Bielekova, the neurologist and researcher who had first put me on daclizumab. She had a new gig at the NIH. I sent her an email on a Saturday, asking for her guidance. She replied almost immediately.
Once again, I didn’t get the answer I expected. Her email contained an offer I couldn’t refuse.
As it turned out, Dr. Bielekova was the one who had gathered all the remaining stock of daclizumab. She’d just negotiated a clinical trial for the next generation of daclizumab, called DAC HYP. She would be switching her patients who’d been on daclizumab long term to this new preparation. She wasn’t sure, but she thought she might have an opening to accommodate one more patient in the trial. My flights would be paid for. Then came the clincher, “The care at NIH, including the drug, is free.”
Now you know how I can afford to make all those trips to DC; I happened to ask the right question of the right person at precisely the right time. I’m going to try to make a habit of that.
My next entry will be a review of the formidable book, Dangerous Doses, written by Katherine Eban, another woman who isn’t afraid to ask questions about medications. The answers she’s uncovered may disturb you. Or they may just motivate you. Dangerous Doses has certainly motivated me. Our drugs are too important to remain a mystery.

Riding the Tide

“Lies are what the world lives on, and those who can face the challenge of the truth and build their lives to accord are finally not many, but the very few.” -Joseph Campbell
When I first went on daclizumab, I was euphoric. After going through six neurologists, and three MS medications, I finally found a brilliant neurologist who had uncovered an off-label medication that appeared to actually work.
My husband remained unmoved. He girded himself for every outcome, including the possibility that the medication would fail.
I shared his neutrality. At first. But then daclizumab surpassed my expectations. I had wanted nothing more than a medication that would prevent further exacerbations. What I got was a medication that did all that and more. Suddenly, I felt…able. I was able to hike and swim and lift weights. So I did. I pushed my suddenly able body to astonishing new limits. I rode the wave. I soared. My husband stood steadfast, like a beacon on the shore. He appreciated my toned body, but he didn’t expect it to last.
Indeed, it didn’t last.
No body lasts.
Love lasts.
Years passed. My physical capabilities became less and less astonishing. I had very much enjoyed becoming super-fit. As my physical parameters kept shrinking, I kept pushing back. It was with great reluctance that I finally learned to stop wanting more of my body than it can deliver.
This week, my hard-won acceptance was put to the test. I would have to also learn to stop wanting more of my medication than it can deliver.
The moment of truth arrived on Tuesday. I finally received the news my husband has been girding against ever since I started taking daclizumab, shortly after Tysabri was pulled from the market in ‘05. In all that time, my MRI’s have always come back with no further lesions. I’ve been lucky.
I’ve kept up on the preliminary results of the daclizumab trials, and while they are impressive, I couldn’t help but notice there hasn’t been a 100% cessation of disease activity across the board. Something had to give.
Now finally, something has.
My latest MRI came back with one enhanced lesion.
Just one little lesion, located in the so-called “silent area.” My local neurologist doesn’t think one lesion would be worth attacking with steroids. (And I must say, I’m relieved.)
The news of the MRI didn’t shock me. It was almost a comfort. I already knew I wasn’t well. It actually felt good to have some confirmation that there was a reason, even if that reason was inconveniently screaming from the “silent area.”
Daclizumab has worked wonders for me. But it is what is. It’s a medication—the best I’ve ever taken. It is not a miracle. It is not a cure.
Daclizumab is fallible. Just like me. That doesn’t mean it’s a failure.
I’m glad I haven’t been afraid to hope. Hope did me no harm, after all. Yes, I was once euphoric, but with good reason. I’d been given a reprieve. When the facts changed, I didn’t break. I changed along with them.
It’s been a good ride.

Type A

Today a specialist asked me if I had a certain personality.
I may have responded with an arch look.
He rephrased the question. “How would you describe yourself? Your personality? ”
I knew where he was going with that line of questioning. He wanted me to confirm his at-a-glance hypothesis that I am a Type A personality. Apparently The Specialist subscribes to the popular theory that Type A personalities are more prone to autoimmune diseases like multiple sclerosis (MS.)
“Has anyone ever told you that you are a control freak?”
He has nothing to gain from this line of reasoning. Think about it. Of the two of us, who is more likely to have a Type A personality: the guy with the medical degree, or the gal with the MFA?
I countered, “I think that’s just blaming the victim.”
I don’t (necessarily) have a bad personality. I just have a bad disease.
The Specialist kept describing the Type A personality. “Do you set goals for yourself?”
“Sure I do. And maybe I’ll accomplish all of those goals in a day, and maybe I’ll only accomplish only one. Or none at all. My body has the final say.”
“So you’ve reached Acceptance.”
Acceptance. I didn’t know what The Specialist would think about that. Acceptance doesn’t carry much of a cachet among Type A personalities.
I ventured, “I don’t know if that’s good.”
Though of course, I do know that it’s good. In my case, Acceptance is reasonable. All my MRI’s in the past four years have come back showing no new lesions. It’s appropriate to reach Acceptance when you’re on a drug that actually works.
The Specialist was happy to hear about the efficacy of the drug, even though he couldn’t find “daclizumab” or “DAC HYP” on his portable information device. (I probably spelled it all wrong.) He seemed more frustrated that he couldn’t shoehorn my personality into his Type A hypothesis. He kept trying. He listed high achievers who had autoimmune diseases. Montel Williams’ MS. Michael J. Fox’s Parkinsons.
I could think of one other thing these guys had in common, besides autoimmune diseases. “These guys are both celebrities. You kind of have to be a high achiever to become a celebrity.”
Whereas, you absolutely don’t have to be a high achiever to become a patient with MS. It’s just not that simple. I know plenty of high achievers. And most of them are not celebrities. Most of them don’t have an autoimmune disease, either. Nor do they deserve one.
I don’t deserve one, either.
“Do you think you used to have a Type A personality, back before your diagnosis?”
Back before my diagnosis, I’d majored in philosophy. What kind of Type A personality would be stupid enough to major in a thing like that?
The kind of Type A personality who thought English majors weren’t thinking hard enough.
Fine.
Have it your way, Specialist.
He proposed, “Some people think meditation could be helpful for people with multiple sclerosis.”
So now he’s “some people.”
“Meditation could be helpful for anyone.”
Touché.
I’m not making a very good case for my being a Type other than A.
The Specialist is an Ear, Nose, Throat guy.
He finally got around to asking me to stick out my tongue.
“You know, thousands of years of Chinese medicine has taught them to diagnose an entire person with one glimpse of the tongue.”
Diagnose?
Or simplify?
I had my tongue sticking out, so I couldn’t reply. And anyway, I didn’t think of a good comeback until after I left the examining room. Here it is: “For hundreds of years, Gypsies have said they can see a person’s fate with one glimpse of the palm.” You don’t see me rushing out to consult any gypsy. I consulted my half-Chinese husband instead. My half-Chinese husband said my sharp tongue was one of the first qualities he loved about me.
So maybe there is a perk to being Type A, after all.
The Specialist had said, “Things happen for a reason.”
I agree with half of that statement. Things happen. But If you’re going to look for a reason, don’t stick your tongue out at a Chinese guy, and thrust your palm onto a gypsy’s lap. That’s just silly. None of us are so special we should waste our breath whining, “why me?”
I may have a strong personality, but I don’t think it’s so strong it could cause a disease.
While I was waiting for The Specialist, I was reading Population 485, a delightful book by a Michael Perry, a volunteer fireman. He writes, “We are creatures of myth, hungry for metaphor and allegory, but most of all, hungry for sense.”
Sometimes our hunger for sense has us gobbling up nonsense.
Perry writes, “Surely, we tell ourselves, we can’t die just because we hit a patch of pebbles on a curve.”
But as Perry clearly illustrates, we can and we do.
We identify with our problems, with our illness, with our fate, instead of detaching, and researching cause and effect.
I think I’ve figured out why I contracted MS. It had nothing to do with my personality, and everything to do with my intestinal parasites.
Surprised? So was I.
It’s a wild, random world. (Is this the observation of a Type A control freak?)
Namaste.

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The Answer

In the past few months, I’ve made the same complaint to every health care professional I meet. I report that my range of abilities is shrinking. That I don’t feel as fantastic as I used to back when I first went on daclizumab to treat the multiple sclerosis.
Year One on daclizumab, I was inspired to stretch myself to my physical limits. I was suddenly able to swim three hours a day. I could hike for an hour at a time. Every other day, I’d be off to the gym. Once a week, I’d attend an hour and half yoga class. Year One, I discovered I could stretch pretty far.
I am now in Year Four on daclizumab. I still stretch myself to my physical limits. But I tell you, those limits are not what they once were. Hike for an hour? I’m lucky to walk a few blocks. The funny thing is, I do feel lucky. But isn’t that also perverse? Shouldn’t I feel…outraged?
These days, if I decide to go to an hour and a half yoga class, that means I am implicitly deciding to write off any further physical activity for the remainder of my day. Which would be fine if I didn’t have a family. But I do have a family. My day is also my husband’s day, is also my son’s day, is also my dog’s day. My cat could care less if I walk or not, as long as I am still able pour his food. But the rest of my family is aversely affected if I overextend. They would probably prefer it if I would under-extend.
I wouldn’t want that. I’m not dead yet.
Every day becomes an experiment. I check in with my body more or less continually. If I don’t, my body checks in with me. More and more often, my body is saying, “Enough.” More and more often, I listen. I stop what I am doing. And I agree it is enough.
Is this acceptance? Or is it complacency?
I think there’s a difference. Acceptance is wonderful. But complacency is dangerous, particularly when you have a debilitating disease. You can mistake a medication for a cure. You can think you are doing enough, and by the time you find out you’re not, it’s too late.
Lately I’ve been wondering if daclizumab is doing enough.
I will whine to the nurses, or to the neurologists, “I feel like my physical range is shrinking.” I will speculate, “Maybe I don’t have Relapsing/Remitting MS anymore. Maybe I’m slipping into Secondary Progressive.”
No one can tell me. There’s no clear line to cross. What they can tell me is this: every MRI of my brain comes back showing no new lesions. How have I responded? I’ve asked to have an MRI taken of my spine. I want the whole story, even if it doesn’t have a happy ending. I don’t want to be living a lie. I want a clear answer to the question: why I do I feel I am in a long slow decline?
A very clear answer occurred to me just this afternoon. I was downtown, picking up a new pair of glasses, which happens to be my very first pair of bifocals. These glasses are totally and completely nerdy looking. It turns out my distance vision is -11.75. And all these years I thought the vision span only went to -10. It looks like the parameters for bad vision can stretch like the debt ceiling. Maybe the parameters for physical (dis)ability will stretch that way, too. And stretch. And stretch.
In the optician’s office, I thought of an explanation for this insidious phenomenon I’ve been experiencing. I am aging. That first year on daclizumab, I was still in my thirties. I’m not in my thirties any longer. Maybe the answer could be as simple as that.

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