MULTIPLE SCLEROSIS: Helping a friend escape its brutal clutches.... /by sylvia kronstadt

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MULTIPLE SCLEROSIS: Helping a friend escape its brutal clutches.... /by sylvia kronstadt
Fri, 08-09-2013 - 12:57pm
...and soar into the sky, freed from his ravaged body. 

    When I learned that my middle-aged, former high-school friend and debate partner was dying of multiple sclerosis -- alone in a dismal "disabled living" facility, after being bankrupted by the unconscionable cost of his medications -- I was grief-stricken. We all thought he had been essentially cured when we were in college. I called him and begged him to let me do something for him. His response was surprising and intriguing. I could help him, he said,  to "soar peacefully" into The Great Beyond, by giving him a massage, three times a week -- but not the conventional kind. He had been a practitioner of Transcendental Meditation since his late teens, and he wanted our sessions to incorporate an ancient spiritual dimension, as reflected in Ayurvedic medicine. He aspired, contrary to Dylan Thomas's advice, to "go gentle into that good night." I didn't think my emotions or skills were up to the challenge, but he persuaded me to try.

Steve's spiritual inspiration, Maharishi Mahesh Yogi

          I remembered the Steve I knew in high schoool very well: a stocky teenager with thick blond hair and glasses. He was always laughing, it seemed, unless someone was in distress. At those moments, he was the most compassionate person I knew.
    He was highly regarded at our school for his intellect and leadership qualities. Even so, I was very frustrated having him as a debate partner. He basically didn't do any work. I researched everything to death and had a neurotically exhaustive card file, which I hardly needed during tournaments because I had memorized everything.
    Still, there is no doubt that it was Steve who deserved the credit for our victories. I was the dutiful, scrupulous Miss Smarty Pants, who spewed facts and figures, probably in a rather robotic fashion. Loose and likable, Steve didn't need notes, or even data. He merely slaughtered our opponents -- and charmed the judges -- with logic, perspective and wit.

    Before Steve got the life-altering MS diagnosis, he was psychically wounded by his terrible acne, and he once told me that I was the only girl at school who was willing to look him straight in the face while speaking with him. 
(It was really bad.)      Everyone else  avoided eye contact -- some out of revulsion, he believed, others to spare him the discomfort of being scrutinized. He tried all sorts of treatments, some with terrible side effects, but the pustules flourished nevertheless. I tried to make him feel sexy, and I think I helped a little bit.
    I believe the humiliation of facing the world with his skin condition helped prepare him to cope with the indignities of MS.

A CRUEL ASSAULT ON THE BODY'S 'OPERATING SYSTEM'

    Multiple sclerosis, an autoimmune disease, devastates the lives of hundreds of thousands of Americans, and millions around the world. Like other autoimmune conditions, it is very difficult to diagnose, and it is exasperatingly unpredictable. Many of its symptoms mimic those of other illnesses, and patients often spend years going from one doctor to another before a positive diagnosis is obtained. 

    According to the MS Society, "MS symptoms result when (the body's) immune-system attack affects myelin, the protective insulation surrounding nerve fibers of the central nervous system (the brain and spinal cord). Myelin is destroyed and replaced by scars of hardened 'sclerotic' tissue. Some underlying nerve fibers are permanently severed. The damage appears in multiple places within the central nervous system. Myelin is often compared to insulating material around an electrical wire; loss of myelin interferes with the transmission of nerve signals." 
    Each patient faces his own unique trajectory of symptoms, which tend to come and go. It is exhausting and demoralizing to watch helplessly as your strength, energy, coordination, cognition, vision, speech and bodily functions are compromised. Some people also develop tremors, numbness and tingling, spasticity, loss of balance and sexual function, and frozen limbs. 

MS drug sales, in the billions of dollars.

    Of course, the pharmaceutical industry has turned MS into a fabulous financial windfall. As the table at the end of this post illustrates, the medications cost between $60,000 and $70,000 per year. Big Pharma is making billions of dollars worldwide on these products, which have limited effectiveness and considerable side effects. 
    A number of prominent people have been MS victims. Annette Funicello died earlier this year, after years in a wheelchair, and Richard Pryor succumbed in 2005. Ann Romney, Jack Osbourne, Montel Williams, Neil Cavuto, Richard Cohen (husband of Meredith Viera), two of the Osmond brothers, Joan Didion, Dean Singleton, Terri Garr and Donna Fargo are among dozens of well-known Americans who cope every day with the uncertainties and anguish of MS.

STEVE'S BAFFLING DESCENT
     Steve began having problems with blurred vision, impaired coordination and fatigue when we were competing in statewide debate meets in the mid-1960s. It was frightening to watch as he had these mysterious "spells." 
    Eventually, he was diagnosed with multiple sclerosis. All of us who regarded him as a wonderful friend grieved for him. It was heart-wrenching to stand by as this robust young man struggled to walk, speak, and even to feed himself when the illness flared.

    His symptoms were proceeding at an unusually alarming rate. When he came over to my house one afternoon for tea and fruit -- and my mother saw him struggling so poignantly to walk with two canes, his legs already terribly atrophied -- she dashed upstairs to get her famous "cure-it-all" card file. 

    Over the years, she had compiled thousands of alternative therapies -- herbal, homeopathic, folk medicine, ancient cures and exotic concoctions from dozens of cultures. (It all began when she rid herself of osteoarthritis in her thirties with a  "folk cure" of apple cider vinegar and honey in hot water. Soon, she was free of pain, and the condition never dared show its face again. "We don't need those crazy doctors!" she cried. They had told her she would be on daily pain killers for the rest of her life. If she had known how to flip the bird, she probably would have. She never even took an aspirin.) 

IT'S IN THE CARDS
    Whenever anything was wrong with any of us, she fetched her trusty card file and proceeded to prepare the recommended tea, poultice, steam infusion or edible cure that she said would make us "good as new" in no time. Her luxuriant herb garden was put to great use. Did it work? Yes it did. At least we thought so, and that seems to be what matters.
     I remember so clearly sitting at the dining room table with Steve and my mother on that beautiful autumn afternoon, while she read the citations she had collected for multiple sclerosis. I wrote them down as she did so. Steve was absolutely committed to this approach. Having been in the Transcendental movement for years, and being a believer in Ayurvedic medicine, he had refused conventional medical therapies, which he regarded as "poison." He was determined to allow his body to heal itself naturally, and that is what my mother was attempting to help him do.
Ayurvedic herbs for medicinal therapies.
   I have forgotten what the various therapies were, but Steve went straight up to the Indian shop, next to Bombay House Restaurant, and stocked up on the required herbs, oils and spices. 
    After only a few weeks, Steve's symptoms disappeared. He seemed perfectly healthy for more than 20 years. Steve sent my mom flowers on Mother's Day and on her birthday, and told everyone that she had "cured" him.
    It never occurred to us to regard it as a remission. We had no clue that some day it would surge back, more heinous than ever.

    After college and law school, Steve married a very attractive girl. They had three sons before they divorced 15 years later.

THE REALM OF ILLNESS AND SPIRIT
    Because I had moved to New York in 1971, I had seen Steve only occasionally in the intervening years. He was a lawyer with a prestigious downtown firm, and always seemed healthy and buoyant when we met for drinks on my semiannual visits home.
    So in the '90s, after I had moved back to Salt Lake City, I was shaken when I made my first visit to his quarters at the rather grim facility where he had moved when he got divorced. My dear, irrepressible friend was in a wheelchair, in a diaper and an undershirt. His limbs were atrophied from disuse and nerve damage. I knelt down to embrace him, and we both cried, although Steve began cracking jokes, through his tears, almost immediately. He was relentlessly upbeat. 
     Ever since high school, when he was so traumatized by acne, he had maintained a facade of jocularity and sociability, but I could always see the pain in his eyes. Now, despite his sincere spirituality, I could perceive a fear and helplessness -- as the end of his life loomed -- that were almost too much to bear. 
    Still, his priority was that no one should feel sorry for him. He made others the focus of attention. He resisted discussing his pain and the terrible limitations on his life. Several times a week, his longtime TM friends came over for long meditative sessions, some of which he characterized as miraculous, in that they were able to achieve such an overpowering sense of oneness with each other and the Universe.  He also managed, with great physical effort, to get himself dressed and into his handicap-enabled van several times a week, to take those of us who were close to him out for vegetarian meals and cheerful conversation.
The dynamics of disease as see through Ayeurvedic tradition.

    The odor in Steve's claustrophobic quarters was nauseating to my overly sensitive stomach, but it turned out that the worst of it came from a small pot of Ayurvedic massage oil that was warming on the hot plate. It was this thick, dark liquid that I would soon be purposefully smoothing all over him, from head to feet.
    Steve's living area consisted of one dimly lit room, with a kitchenette, bed and recliner chair, and a bathroom. The room was kept dark, contrary to Steve's sunny nature, because people with MS are particularly sensitive to heat. It was in considerable disarray, since Steve was unable to maintain it. He hadn't been able to sleep in the bed for some time, he told me, because he couldn't get out of it without assistance. So he slept in the recliner. He said he'd gotten used to it. How I wished he could be snuggled in bed, with soft, clean covers and a cozy pillow.
I never grew fond of  the massage oil's aroma. (at all)
MY MASSAGE STYLE: INEPT BUT HEARTFELT

    A few years earlier, I had tried to become trained in massage, because I wanted a counterpoint to my other work -- writing -- which was sedentary and cerebral. I longed for an outlet that involved touching people, rather than interrogating them, and relieving them, rather than exposing them. I didn't intend to accept any compensation for my work. I loved the idea of  being able to bestow, as a gift, the pleasure that massage can provide. I envisioned giving massages to friends and family and to people in nursing homes.
    I completed virtually all my training, but in the end, I didn't pursue it, for a number of reasons -- most of them having to do with the limitations of my back and hands. I also don't think I was very good at massage. I had begun with a strong sense that I would be a "natural." I had a feel for it -- a real urge to do it. It seemed to me that my decent talent as a ballerina might be relevant. It wasn't.
    I pressed Steve to hire someone who knew what she was doing -- this was too important to entrust to an clumsy amateur -- and he did decide to have a well-respected masseuse come in on alternate days. But he said it was a different thing entirely to have a friend working with you, who was keenly attuned to the emotional aspects of the process. 

For that hour, it was as if nothing else existed.

      So, for the next six months, he and I devised what he referred to as "a dance" of profound intimacy that he said would help him with "the journey" and "the transition." I can't think of anything I've ever done that gave me such a privileged role in someone's life. I was overwhelmed and humbled by the experience.       
    Nevertheless, I have to admit that it wasn't easy for me to dive into this task. I am squeamish. It is an inconvenient and unattractive flaw of mine. The sight of the open acne pustules all over Steve's back, and the swelling, and the peeling -- on top of the smell of that oil -- forced me to swallow hard several times to keep my stomach where it belonged. 
    Steve had recorded dozens of New Age musical selections to play during our sessions. They were beautiful, aching, soaring, light, deep instrumental works that seemed to choreograph my massage work for me. They succeeded in conveying the sensation that you were floating toward Heaven.


    I think both of us became immersed in the spell as I essentially plunged through him, propelled by herbal oil and emotion, trying to enliven his receding body: to relax it, to nourish it, to drain the toxins. It was kind of like swimming with the dolphins. Steve, because of his deep sense of connection to the Universe and his mystical aura of peace, had become otherworldly to me, like those seemingly wise, open-hearted ocean creatures.
    We lost track of time. We never spoke a word. We didn't "come to" until the music ended. I was wiped out, and he was exhilarated. He said that was to be expected: I had transmitted energy into him during the "touch therapy," he said. I hope that was true. I don't often feel that I am able to contribute very much, even those I care about the most.
    One night I got a call from the Veterans Administration Hospital, informing me that Steve was there in serious condition. I found him sitting up in bed, alone. He was flushed and smiling. His arms and legs, which had been so diminished all this time, were hugely swollen and wrapped in compression bandages. As always, he tried to keep it light, but I think he knew it was the end. It was hard to maintain eye contact, even as he queried me about my jogging and my flower garden. I wanted an honest conversation about what was really happening to him, but I didn't know what to say, or whether it was my right to steer our interaction in that way. I kissed him for the first and last time in more than 30 years of friendship.
    A few days later, he died. He was 48 years old.
    I don't go to funerals, but dozens of people who loved him -- many of them from high school -- attended the services. I am glad his life was honored. He was many things, but I regard him as dignified and heroic above everything else. He would undoubtedly ridicule me gently for making such an assessment.  
    I am very grateful that I had the honor of being his friend.

Farewell, dear Steven.

AT LEAST BIG PHARMA IS MAKING A KILLING:


Biogen Idec's (BIIB) new multiple sclerosis drug may drive the company's growth for years.
In early August of 2013, the company reported gains of 41% in Q1 and 26% in Q2.
Biogen that day also said sales of its new multiple sclerosis drug Tecfidera came to $192 million, vastly better than the $66 million most analysts had been expecting. That performance was the "holy mother of all launches," said ISI Group analyst Mark Schoenebaum. Now analysts are talking about $3.5 billion in annual Tecfidera sales by 2017. 

Current Cash Prices for a One-Month Supply of MS Medication

From Healthline.com 2013

Drug Name (Manufacturer)DoseWalmartWalgreen’s

1 month supply1 month supply Aubagio (Genzyme)14MG (30)(Pharmacist could not locate in database)$4,757.19 Avonex (Biogen Idec)Prefill 30MCG/0.5ML Kit$4,877.08$5,058.19 Betaseron (Bayer)0.3MG INJ (14)$5,154.54$5,809.69 Copaxone (Teva)20MG 1PK=30 INJ$5,507.32$6,000.09 Extavia (Bayer)0.3MG INJ (15)$4,430.46$5,589.99 Gilenya (Novartis)0.5MG CAP (28)$5,372.18$4,790.19 Novantrone*......... Rebif (Merck KGaA/Pfizer)44MCG/0.5SYG INJ (12)$5,150.54$5,304.49 Tecfidera (Biogen Idec)240 MG CAP (60)$5,139.01$5,320.09 Tysabri (Biogen Idec)300MG/15 INJ$5,418.62$5,629.49

*Administered by IV every 3 months and is prescribed in multi-dose vials. Single-month pricing information was unavailable.

In 2010, when Novartis won FDA approval of its much-anticipated, first-ever pill treatment for MS, Gilenya, the company set the price for the oral medication at $4,000 per month. At the time that price was 30 to 50 percent above that of other established DMDs. Other drug manufacturers soon responded with price increases to match, and prices have continued to soar.