Multiple Sclerosis:
An Owner's Manual

After finishing one novel and several short stories and essays, Frank Caceres is well into writing his second novel. "The brain cells I've lost were the ones I wasn't using anyway," he quips.
Reprinted from PN December 2001

Under no circumstances will I ever refer to MS as Master Sclerosis!

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I was born and raised in New York City. I was a pretty smart kid and achieved good grades in elementary and high school. However, my attitude blew away with the "revolution" attitude of the sixties, and I graduated from college with a two-point-nothing (barely a "C" average). I moved to Florida right after my separation from the army in 1971.

My 50th birthday present, in 1996, was a diagnosis of multiple sclerosis (MS), and things haven't been quite the same since. I returned to school and earned a master of arts degree in vocational education with a 4.0 (straight A's) and was inducted into Phi Kappa Phi, a national honor society. I also began writing?a dream I had held since college. I have written a novel and am well into writing the second.

Having a chronic condition has given me cause to reassess my life. I am constantly reminded of a small dog I had when I was a boy. This little fellow, a mutt, was missing a hind leg. Yet, he ran, barked, and wagged his tail happily as though having three legs was a natural condition. Even as a kid I was struck by the ease with which this "dumb" animal was able to cope with the catastrophic loss of a limb.

In a real sense, I've had to rebalance myself and learn to walk on three legs as well. My cane isn't a crutch; it has become part of me, a third leg. So are my wheelchair and scooter.

How It Works

The body's central nervous system (CNS) is remarkably complicated. A thin membrane known as the "blood-brain barrier" is designed to prevent anything other than oxygen from passing from the blood supply through to the gray matter. The CNS's primary components are coated with a fatty protein called myelin, which acts as an insulator, not unlike that found around electrical wires.

In multiple sclerosis (MS), the immune system's attacking elements penetrate the blood-brain barrier and destroy some of the myelin, leaving nerve cells exposed and unprotected. Recent studies prove that some of the nerve axons, which aid in conducting neurological signals, eventually die. Neurological impulses then "short circuit" on their way to various muscle groups (commonly the limbs), causing them to malfunction. The resulting damaged areas are sclera, or scars. The name multiple sclerosis is, therefore, derived from the numerous injured sites throughout the CNS.

Thus ends the American Medical Association's (AMA's) explanation of MS.

As an end-user, however, my perspective is considerably different. For me the acronym "MS" has a variety of meanings, based on practical experience. I call it Mister Sclerosis, as I've been forced to maintain a grudging respect for the unwanted intruder. Statistically, more women contract the disease than men do, and I suppose that to them the name Ms. Sclerosis is more appropriate. Due to its predictably unpredictable nature, it can also be called Mystery Sclerosis. Under absolutely no circumstances, however, will I ever refer to it as Master Sclerosis.

My Treatment

While no known cure exists (I emphasize "known" because I like to think there is a cure out there somewhere, waiting for the right Nobel Prize candidate to find it), several treatments are available. The best you can hope to derive from any of these treatments is the slowing of disease progression.

For almost five years I have been taking one of these treatments (Avonex), administered through a needle long enough to harpoon the Loch Ness monster; I am convinced the drug has succeeded in facilitating daily life for me. But MS isn't called a progressive disease for nothing.

During a recent visit, my neurologist told me I have officially reached the "secondary progressive" phase of the disease, which thrilled me beyond wordseveryone likes to get a promotion. He said he wanted to start me on an additional treatment, which had just been approved by the almighty FDA for "worsening MS."

Novantrone, a form of chemotherapy administered to people with certain types of leukemia and prostate cancer, has been found to destroy some of the immune system's ability to function, thereby reducing its likelihood of inflicting further damage to the CNS. Not wanting to pass up on an opportunity to help myself, I agreed to take the treatment.

One of the many perks and benefits of MS is brain atrophy. In my case, I think the brain cells I've lost were the ones I wasn't using anyway. Therefore, I studied this medication prior to taking my first treatment. The term "chemotherapy" carries some frightening baggage, especially for people who are uninformed.

My research, conducted primarily via the Internet, revealed some fascinating facts. Novantrone is a bluish-purple liquid administered intravenously. Its primary danger is its toxicity to the heart. Too much of this medication over a lifetime can lead to congestive heart failurehow charming. Its immediate and less damaging side effects include nausea and vomiting, weakness, hair loss, and a purpling of the whites of the eyes.

I could hardly wait for my first treatment. Blinded in one eye from optic neuritis, a 1996 Thanksgiving gift from Mister Sclerosis, I could already hear a parody of the 1950s tune as I became transformed into the "one-eyed, bald-headed, puking purple people-eater."

It's difficult to describe the myriad thoughts that ran through my mind as I watched this ghoulish-looking liquid being pumped into my veins. For a moment, I could have sworn I saw the Dow Chemical logo floating in it. Something in me felt a sense of revulsion as if I were being injected with radioactive, industrial-strength, toxic, hazardous waste material.

As it turned out, it really wasn't so bad. My stomach felt a bit queasy for a few days, as if I had eaten day-old road kill. But I never actually felt nauseated or even came close to launching my lunch. I had taken a visual inventory of my hair prior to the treatment, and I seem to have retained most, if not all, of it. And the whites of my eyes have remained just that.

You Gotta Have Hope

One treatment is not enough to make any sort of judgment as to its efficacy (more medico-speak), but I'm hopeful Novantrone will produce some good results. Research studies that led to its approval as a therapy for MS showed an improvement in some of the subjects' overall disability.

An objective measurement called the Expanded Disability Status Scale (EDSS) has been developed to determine the level of impairment caused by MS. The range begins at zero, indicating normal neurological function, and ends at ten, death by MSproof that being a perfect "10" isn't always a good thing. I guesstimate I'm at around a six on this scale, making it my life's work not to reach the top of it. Research study subjects purportedly lowered their EDSS scores by a point.

I'll continue to take these chemotherapy treatments once every three months for approximately two and a half years, at which time the accumulated toxicity levels come dangerously close to damaging my heart. Like the "10," this is something I'd rather avoid.

I don't expect I'll ever be able to leap tall buildings with a single bound, but I hope to see some improvement in my physical strength and endurance. At present, I couldn't leap a squatting ant in three attempts.

The future holds only hope. I have a realistic understanding of my present condition and pray it will not worsen to the point of burdening my family. I stubbornly value my self-sufficiency, with the welcome aid of my beautiful wife and kids, not to mention several canes, a wheelchair, and an electric scooter. But I thrive in the knowledge that I can still rise each morning under my own steam and work, write, and enjoy life.

Frank Caceres is a PVA member, holds a master of arts in vocational education, and works for a local county government. "I wrote this article in the hope that it might bring smiles of encouragement to otherwise distraught faces," he explains.


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Multiple Sclerosis:
An Owner's Manual


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