Keep Moving

April 29th, 2013 by Ms. Labrat No comments »

 

As my adorable niece has just demonstrated, moving is fun and hard work. Today I spent an hour on my home Pilates machine, going nowhere, in one sense, to reach my personal goal. It felt pretty good. Like gumming the rice paddle on the far side of the gleaming wood floor.

Thanks to my sister-in-law, Julia, for sharing this video. And to my sister Laura for buying me a Pilates machine, my favorite Christmas toy ever. It’s really useful, particularly for people who have trouble with balance. An Aero Pilates is as fun as swimming, and you don’t have to get wet.

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Extensions

February 22nd, 2013 by Ms. Labrat 2 comments »

I am stretched out on the floor beside my massive black lab mix, Jack. He’s sprawled across his foam dog bed, his long head resting on my right thigh as he sleeps off the anesthesia from this morning’s dental cleaning.
Neither one of us was keen on a cleaning.
Jack doesn’t like our neighborhood vet. It’s nothing personal; he’s just been suspicious of vets since the first one neutered him, and treats all subsequent vets as though he could be neutered again.
I like our neighborhood vet. But I was still skeptical when she proposed a dental cleaning. Jack is 11 years old. He weighs about 100 pounds. I’ve seen dog morality charts: the bigger the dog, the shorter the lifespan. At his age, at his weight, Jack should be prancing off the edge of that chart.
I don’t want to become one of those pet owners who goes on a spending binge fueled by mortality denial.
And yet.
I don’t want to be one of those owners who denies preventive health care to a perfectly healthy animal.
Our vet observed that Jack doesn’t walk like a dog on the verge of death. True enough. At age 11, he still likes to take long walks, preferably off leash in the park. He still likes to run after deer, even if the probability of his actually catching up to one is ever more laughable. He still likes to lead me uphill to the home of his friends, a pair of robust chocolate labs. It doesn’t matter that one of these labs has predeceased him. The other one is still alive and sniffing. There is always a chance that their owner, Joanne, will happen to turn into their driveway, and let us inside to play. This happened once, over a year ago. Those odds are good enough for Jack.
Our neighborhood vet wasn’t promising Jack would live forever. She just thought he looked healthy enough to last a few more good years. She said it all came down to lifestyle. All those walks were paying off. She implied the dental cleaning would pay off, too. I signed Jack up for the cleaning, knowing the procedure would cost over $300. Knowing my husband wouldn’t give the matter a moment’s hesitation.
Indeed, he did not.
The dog’s health wasn’t the big issue for him. He is more concerned with my health. I am down to one vial of MS medication. Once I inject that last 150 ml of DAC HYP , the effects will last another 28 days.
He asked, Did I have a plan?
I did not. Which isn’t really like me.
I’ve been waiting to see if the NIH (National Institutes of Health) study that supplies me with the drug will be extended. DAC HYP is the only drug that’s stabilized my MS. The FDA approved medications I’d taken before haven’t helped me. I’ve got very few options left.

Which must have been why yesterday I finally found myself turning to the books I knew I’d only open once I was feeling desperate; books that were lent to me, in good faith, by a friend of a friend, a woman who claims she’s “cured” her MS through crystals, and has the MRI’s to prove it. Part of me responds, crystals? Really? But if this friend of a friend is cured, and I am not, then the joke is on me, right?
I started to read.
I read that I ought to give up all but the scarcest servings of meat. I thought, I can do that. And then I remembered that I have done that. I was a vegetarian when I got my first my MS symptoms. So much for vegetarianism as a treatment for MS. I put down that book a second time.
It offends me, to my core, when people treat MS as a lifestyle choice. It is not a lifestyle choice. It is a disease.
Rather than research the healing powers of crystals, I emailed the NIH about the travel arrangements for my penultimate visit. And then I shut down my computer, turned off the ringer on my phone, and went off to yoga.
Because, you see, I do believe that lifestyle choices are necessary for good health. At the same time I adamantly do not believe lifestyle choices are sufficient to combat MS. Of all the things I do or have done to take care of myself: yoga, swimming, dog walking, weight lifting, and lately, lots of Pilates…I would recommend none in place of treatment with DAC HYP to a person with MS.
After a session of gentle yoga and a meal of delicious sushi, I opened my email. I was prepared to finalize a date that would mean missing the opening night of my son’s play, but I figured that was just the price I had to pay.
I got some good news about the travel arrangements. I would be flying down to Baltimore a week later than I’d expected. I would get to go to opening night, after all.
This made me happy. But the email contained news that made me happier still.
Elated, I took Jack out for a walk. He pulled me up the hill to his friends’ house. Guess what? Joanne pulled into her driveway. She invited us in. Jack reunited with the remaining chocolate lab, and his younger replacement companion. And while the dogs sniffed each other’s butts and wagged their tales and ran from room to room, I told Joanne my best good news.
The principal investigator of DAC HYP trial, Bibiana Bielekova, had managed to convince the drug manufacturer to extend access to DAC HYP to all of us who have had success with it, for another three years, which ought to be enough time for the FDA approval.
My dog Jack and I, we are lucky. This week, we’ve each been given an extension. I’m going to use my time to raise awareness of the limited options currently available to people with MS. My dog is going to spend his time making sure my husband and I take enough walks in the woods.

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Six Months

September 17th, 2012 by Ms. Labrat 21 comments »

I’ve got 6 months left on the NIH (National Institutes of Health) trial of DAC HYP. After that, I might not get further access to the drug that has kept the progress of my multiple sclerosis (MS) in check for the past 6 years.
I didn’t panic when I was told the money just wasn’t there to keep the trial participants on the drug. I probably should have. As my sister reminded me, “You think you’re doing OK, but that’s not you doing OK, that’s you on the drug.”
She’s right.
I know, because I get monthly reminders of me-off-the-drug. I can only inject DAC HYP once a month, but the effect usually seems to last only three weeks: the week preceding a fresh injection is a drag. Literally. I pretty much just drag my body around, propping it up until my next dose of DAC HYP, when the “real me” can take over again.
What will I do when there is no next injection?
I may be left dragging around a husk of myself until such time as the FDA approves the commercial release of DAC HYP. That process may take as long as two years.
How much damage can multiple sclerosis do in two years?
I can’t afford to find out. My central nervous system has undergone punishing damage already, from the many years I was on no drugs, followed by the many years I was on bad drugs.
Everyone I tell about the upcoming DAC HYP discontinuation has urged me to take another drug in its place. If I had thought there was a more effective drug out there, I wouldn’t be taking a trial drug, would I?
I’ve had plenty of disappointments with other MS drugs.
Some new ones have come out since I started my trial, and maybe those drugs will prove effective. Or maybe they’ll prove lethal. People have died on MS drugs. At times, my MS symptoms have been bad enough to make me indifferent to such a risk. The “real me”, the one on DAC HYP, doesn’t feel that desperate. We’ll see what happens when access to the “real me” runs out.
Somehow I’ve never envisioned a life after DAC HYP that would include sampling yet another MS medication. I’ve been hoping, I still hope, that I would live to switch out DAC HYP for the actual cure.
You see, I don’t want to medicate my MS. I want to vanquish it.
I’m not the only one. There is talk of an MS “cure.” It’s somewhat hyperbolic, but it’s also compelling. Dr. Wahls, a neurologist in Iowa City, used to suffer from a particularly aggressive form of MS that was rapidly debilitating and drove her into a reclining wheelchair. She fought back by eating every “brain food” she could think of, and by exercising as much as was physically possible. I wouldn’t say she is “cured” now, because I bet her lesions didn’t disappear, but she is certainly doing very well. She can stand for the duration of a TED talk. She is also biking to work, she is practicing medicine full-time, and she is starting a clinical trial to examine the effect of diet on MS. It could be, as she claims, that she has reversed a case of progressive multiple sclerosis. I hope so. Or it could be that she’s on the remitting cycle in a mislabeled case of relapsing remitting MS. I’ve ridden on the high of those cycles, myself, exercising like a fiend on my borrowed time. I’m sorry to say those times don’t last. I wish her the best. Especially since, in six months, the Wahls diet may turn out to be the best option I’ll have left.
But why wait six months?
I’ve been eating aggressively healthy brain food ever since I first heard of the Wahls diet, but now I will start eating healthier still. (This prospect terrifies my husband, who claims I already eat healthier than anyone he knows)
I am perfectly willing to trade DAC HYP for eight daily platefuls of kale, if that would help me. I am perfectly willing to lift weights, swim laps, and practice yoga with twice the intensity of my normal schedule. Indeed, how could it hurt? I can foresee only one downside to this course of action. I know I am perfectly capable of blaming myself for not trying hard enough if—or let’s face it, when—the disease strikes again.
Would blaming myself be so healthy? I don’t think so.
A number of good people have approached me to ask what I “do” to remain so healthy with MS. I say I exercise, I say I eat well, I say I do yoga. They tell me I have a “good attitude.” They tell me others, those sicker with MS, do not. That may just be oversimplifying things.
Here’s the deal: I’ve had access to a good drug. Others with MS have not. In six months, I will join their ranks. We’ll see if a mix of a “good attitude”, a good workout routine and good diet will be enough to see me through until DAC HYP goes on the market. I’m sure it’s all very necessary. I can only hope it will be sufficient.

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Airplane Reading

August 7th, 2012 by Ms. Labrat No comments »

The good editors of Airplane Reading have done me the honor of publishing my Open Letter to the Shamed Usurper of the Handicapped Stall. Gentle reader, please follow this link.

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Tonight I am limping

June 26th, 2012 by Ms. Labrat No comments »

Tonight I am limping, but that’s because this afternoon I swam for an hour. I wasn’t swimming in the ocean, but the Cincinnati sky was as blue as any ocean, and that alone made it all worthwhile.

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