You can’t easily get your hands on Motley Crüe’s Spector electric bass guitar. In rock music, it’s a unique instrument.
Twelve of them were made for bassist Nikki Sixx and they were not for sale to anyone outside the band for years afterward.
One showed up on display in Hyderabad, India at the Hard Rock Cafe.
Alan Charney made the basses custom for Sixx, while Kramer Guitars owned Spector from 1985 to 1991. Larger than most guitars, Charney modified the famous Spector NS-2™bass into Spector’s “X”™ body shape.
Crafted from special woods, Sixx sold only a few of the basses over the years, known among fans as Spector Birds. He let the last one go for about $12,000 in 2003, according to PJ Rubal, Vice President of Spector, which far outlived Kramer. Nikki’s remaining Spector basses stay out of sight in storage. The whereabouts of a 13th Spector Bird are not certain.
Charney Made Famous Guitars
Over time, Charney crafted many other styles of guitars for Spector. Sting performed on an NS-2 bass guitar Alan made. Now displayed in the Rock and Roll Hall of Fame (NS-2 #669), Sting used the guitar for the 1983-84 Synchronicty tour by the band “The Police,” Rubal said. Bass players for Chicago, and Kiss also used Alan’s guitars.
Charney developed techniques for the manufacture of the NS-2. “Alan was a remarkable craftsman,” said Rubal. From the mid 1970s to 1991 he helped Stuart Spector build a brand now played by rockers such as Bruce Springsteen, Nickelback, and Judas Priest.”
Charney’s New Career Serving the Chemically Sensitive
Now in his 60s and living in Deerfield Park, Florida, Alan works with his wife, Joyce, on another endeavor that appeals to sensibilities that began emerging in the 80s.
Alan’s Florida business focuses on people and their relationship to the earth. With compassion, he provides accommodations for patients sensitive to chemical exposures, or who want to limit their exposure to chemicals.
A five unit hotel, the Natural Place, offers rooms free of pesticides, artificial fabrics, fragrances, perfumes, oil based paints, smoke and other substances that might trigger an allergic reaction for a guest. Guests have been coming since it opened in 1992.
One cancer doctor, several medical students, nurses, and a few cancer patients have stayed at the hotel. But the majority of the Charney’s guests are people who easily react to chemicals.
At the hotel, a charcoal building filtration system clears chlorine from all water in the rooms, including that in the showers and the toilets. Air filters clean irritants from the air. Guests sleep on formaldehyde free mattresses. Linens are washed in products like Seventh Generation laundry soap.
When the sheets are new, Joyce soaks them in baking soda, vinegar and water, then washes them 20 times to remove chemicals added during manufacture.
Guests adhere to strict rules: no pets, no smoking, no perfume, no scented lotions, soap, shampoo or hair spray. The hotel routinely uses products like peroxide, vinegar and baking soda to keep rooms clean. Boric acid keeps insects out of the rooms.
Other MCS Dwellings
The hotel is one of a very few in the country, Alan said. Six private rentals are also available in a complex in Melbourne, Florida. Those sensitive to chemicals can obtain space in a Dallas complex of 18 condos and in a facility in Seagoville. A third complex of cottages is planned for a more rural community 30 miles south of Dallas in Bristol.
For at least a decade, in a suburb of Portland, Oregon, nine units have rented in a private complex for the chemically sensitive.
A small number of public housing units built for people with chemical sensitivities operate in San Rafael, Calif., and near Snowflake, Ariz., which lies between Ft. Apache Indian Reservation and Winslow.
Diane Ensign developed the first of an intended community of private houses for sale to this special population on land north of Tucson. At least three other lots exist on her available land. She hopes to attract buyers who need the kind of houses she wants built, she said.
Experience With MCS Prompts Housing Startups
Personal contact with those suffering from MCS sometimes prompts business startups. The Charneys developed their small Florida hotel after Joyce developed MCS and tests confirmed multiple allergies. Her medical problems surfaced after working in a Manhattan building that exposed her to perfume, and gases from carpeting and furniture in her office, her husband Alan said.
An engineer from Mesa moved near Snowflake, Ariz. in 1988, starting a refuge for the chemically sensitive. A year earlier, chemical exposures at a research and development facility where he worked disabled him.
Thirty one people with MCS or electrical hypersensitivity now live in an area east of Snowflake. They all moved there. At $500 to $1000 an acre, land was cheap and expansive, the engineer said. Lots typically span 40 acres. The area is so remote, no local TV or radio stations exist in the area. Cell towers are so sparse, calls to drivers using mobile phones often drop. Bare grazing land stretches for miles, few people live there, and no commercial farming or industry operate nearby .
Residents came from many backgrounds. The list includes former teachers, engineers, secretaries, a broker, a heavy equipment operator, a cab driver, a lawyer, a military officer, a civil servant, a CPA, a chef, and several people with Ph.D.s.
Snowflake Offers Refuge From Toxic World
More than two decades later, people with environmental illness continue to look to Snowflake for a safer place to live. The county government supports some of the needs of those afflicted with the problem. State government also helps. The Arizona Department of Housing provided funding to build four wheelchair accessible houses for low income people with environmental disabilities in Snowflake. A nonprofit organization manages the houses.
Cooperation binds together the Snowflake residents who battle environmental illness. When new neighbors arrive, some of those with private houses let them park their small trailers on their land, the engineer said. Others take newcomers into their homes until they can construct their own. Newcomers welcome the aid: some residents are disabled on limited incomes.
Residents take inspiration from those who move to Snowflake and get better.
A former floor broker with the Chicago Board Options Exchange resides near Snowflake. Before he arrived, he came into contact with chemicals in a Chicago suburb and resorted to sleeping with an oxygen tank at night, the New York Times reported. Now, he only needs the oxygen one season of the year, a neighbor said.
Those residents too ill to travel to see a doctor sometimes speak with specialist physicians over Skype.
Community members with technical skills, and with construction expertise and experience help new neighbors. They identify building materials and methods that avoid plastics, paints, glues and finishes common to home building, the engineer said. Some early homes used foil backed drywall, sealed off air coming into the house, and closed off electrical boxes. Plaster, rather than paint covered over foil on walls in some homes.
Later innovations introduced one mil foil laminated to wallboard. Sometimes homeowners coated this with a homemade clay paint. Others installed ceramic tile on floors and walls, using a special adhesive.
The extra development help from neighbors produced homes with specifications far beyond those of “green” dwellings.
An Accessible House
Susan Molloy’s wheelchair accessible house features sealed bare concrete floors, wide doorways, and unpainted foil faced sheetrock walls and ceilings. Since moving to Snowflake in 1994, she says she’s gotten better and rarely needs her wheelchair at home. Ms. Molloy welcomes visitors who are reasonably careful about avoiding use of personal and laundry products before they arrive.
These days, she asks visitors to turn off their cell phones to avoid exposing her to radio frequency fields (EMF), an issue of ongoing research and debate.
Others with MCS also report developing sensitivity to electrical and magnetic fields, according to the engineer. About half those in Snowflake with environmental illness don’t use television sets. Those less sensitive to EMF rely on satellite receivers. Other residents watch DVDs on carefully selected small portable DVD players. These devices present fewer EMF problems, but users move back from the devices when they use them.
One longtime Snowflake homeowner watches movies on a special rear projection screen, turning on the closed captions option. To keep up with the news, he relies on the Internet.
In a quest for safety, some Snowflake homeowners are asking the regional utility company and the state Corporation Commission to allow them to keep their conventional analog power meters. They want to avoid being switched to new “smart meters” that raise EMF issues. The Snowflake residents are not alone in such efforts. In the last two years, people in two areas of California sought bans on installations of the meters for health reasons.
Scientific examination of smart meter emissions shows that exposure levels are so low, it is difficult for scientists to understand how the devices could cause problems for humans. “Twenty year exposure to radiation from a smart meter is no greater than a single 30-minute cell phone call,” according to David H. Bailey, a retiree from Lawrence Berkeley National Laboratory in Berkeley, Calif. Standing within three feet of a smart meter when it broadcasts produces an EMF exposure 1100 times less than holding an active cell phone to one’s ear, Bailey has said.
Such realities underscore the unique issues surrounding the anti-smart meter effort in Snowflake, the ongoing efforts of special needs residents living there, and the importance of trying to understand and compassionately respond to their experiences.
Theirs is not always an easy struggle. “Physicians don’t ‘get’ this disease,” according to Christine Oliver, M.D., associate professor of clinical medicine at Harvard Medical School. For more than 20 years she’s treated MCS at Massachusetts General Hospital.
MCS “is not a psychogenic disease,” Dr. Oliver said. From her observations of patients she concluded that MCS is “a physical and physiologic disease.” (She was only asked to address issues about patients exposed to chemicals.)
In fact, many medical organizations do not recognize MCS as a disease. Critics say that studies performed on MCS patients often produce bewildering results. Adding to the complex picture: exposures to toxins are often at very low levels for MCS patients. Patients also respond to exposures in very different ways.
Scientific Investigation Of Environmental Illness
Ongoing studies are investigating the health status of patients with environmental illness, but scientists say much more work is needed.1 Genetic changes are among possibilities being explored. In 2004, scientists Stanley Caress and Anne Steinemann estimated that about 11 percent of Americans report unusual sensitivity to common chemicals, such as perfume, fresh paint, pesticides, and other oil-based substances. In a telephone survey of about 1,000 people,
The researchers found that 2.5 percent of the people surveyed reported being diagnosed with MCS.2 Caress was at the State University of West Georgia and Ms. Steinemann was at the Georgia Institute of Technology when the study was done.
Some scientists think environmental illness relates to difficulty handling stress. “One study reported a 65 percent incidence of current or past clinical depression, anxiety disorders, or somatoform disorders in subjects with this diagnosis compared with 28 percent” who did not have the disorder, the U.S. Environmental Protection Agency (EPA) reports. “Others, however, counter that the disorder itself may cause such problems, since those affected are no longer able to lead a normal life, or that these conditions stem from effects on the nervous system.”
The EPA cautions against quickly assigning a psychological cause for environmental illness. “A thorough workup is essential,” the EPA said. “Primary care givers should determine that the individual does not have an underlying physiological problem and should consider the value of consultation with allergists and other specialists.”3
Those with very challenging cases of MCS insist that they have a very real disease. “Most of the people with severe MCS have brain damage as evidenced by quantitative EEG, SPECT scans, and standard neuro-psychological testing,” a Snowflake resident said. “On top of this we often have a host of autoimmune diseases such as MS, COPD, Hashimoto’s Disease and Graves’ Disease.”
Patients mainly cope with their problems by avoiding further exposure to irritants. Physicians have few modalities to treat MDS, according to Dr. Oliver. In an interview, she said the most reliable approach to dealing with MDS is “avoidance of exposure”. To date, no effective medical treatment exists, she said.
Dr. Oliver also warned against using alternative medicine to treat symptoms.
Other physicians sometimes turn to an over the counter cough syrup and magnesium supplements to try to help patients. One drug that acts as an NMDA receptor antagonist, approved in 2003, is being considered for use by one American doctor.
Other scientists say they are developing still other approaches to treating the disease.
Mysteries of nature may account for some of the confusion about MCS. By introducing diversity into the gene pool, human beings react to substances in the environment in different ways.
“Canadian scientist Gail McKeown-Eyssen found that MCS patients had genetic differences in how they rid themselves of toxins.These variations occur in genes that help process organophosphate pesticides and organic solvents. People with two genes switched on ( a high expression), CYP2D6 and NAT2, are 18 times more likely to have MCS than those whose genes are switched off. Further research focused in on six potential genetic culprits involved in MCS.
“The genetic studies of Eckart Schnakenberg and his colleagues in Germany are even more impressive because of the very high statistical significance his studies showed,” according to Martin L. Pall, Ph.D., professor emeritus of biochemistry and basic medical science, Washington State University in Pullman.”By studying genes that process chemicals in the body, these studies show that MCS is caused by exposure to chemicals,” Pall wrote in an e-mail.
Schnakenberg and his colleagues performed their work at the at the Institute for Pharmacogenetic and Genetic Disposition in Langenhagen.
Genetic research gives scientists a new lens through which to view MCS. Pall has said that “some have argued that MCS is a psychogenic illness, but this view is completely inconsistent with . . . diverse data on MCS . . . and the literature claiming psychogenesis of MCS is deeply flawed.”
The professor points to higher levels of nitric oxide and peroxynitrite (NO/ONOO-) as other factors that might be involved in MCS and several related conditions, including fibromyalgia, Gulf War syndrome, and chronic fatigue syndrome.
Pall has studied the mechanism of action of certain chemicals shown by others to cause MCS. The “main classes of chemicals that initiate MCS are . . . organic solvents and other sensory irritants. . . and three classes of pesticides,” he said. This theory seems to be reinforced by a 2001 study by Steven Reid and his colleagues that examined the rate of MCS among British Gulf War syndrome sufferers.
Reid found that veterans who had used personal pesticides during the second Gulf War were 12 times more likely to develop MCS. His team was at Guy’s, King’s and St. Thomas School of Medicine and Institute of Psychiatry in London. Those most afflicted got pesticide exposures through creams, sprays, flea collars, and contaminated clothing and bedding.
Skeptics question whether organic solvents and three classes of pesticides can actually be the cause of MCS, given the thousands of chemicals to which humans can be exposed. A scientist said that research shows that key genes process specific chemicals.
A Possible Model To Explain EMS Sensitivity
As for answering EMF critics, Pall posits that a “nitric oxide-peroxynitrite-oxidative stress pathway of action” may help explain why some MCS patients become exquisitely sensitive to EMF emissions. In a new paper published in June, Pall said that “pathophysiological responses to EMFs may be as a result of” this pathway.The paper describes “DNA single-strand breaks in cells” exposed to EMF. In a 2007 book, he wrote that “exposure to EMF has been reported to increase nitric oxide synthesis”.
His paper reviews 24 scientific studies that discuss EMF exposures that produce biological effects capable of being blocked with drugs that act as calcium channel blockers.
He gave highlights of his new paper in an internet posting. “What these and other studies show, is that EMF exposures act by partially depolarizing the electrical charge across the plasma membrane of cells, activating the VGCCs [voltage gated calcium channels] and it is the increased intracellular calcium levels that are responsible for the reaction to EMF exposure,” he wrote.
“These 24 studies implicate the VGCCs in responses to a variety of EMFs, including extremely low frequency EMFs such as 50 and 60 cycle fields produced by our alternating currents in our wiring, various microwave/radiofrequency EMFs and nanosecond electrical pulses,” he explained. “Static electrical fields also act via VGCCs, not surprisingly because they also influence the electrical charge across plasma membranes.”
This model of causality would shine light on the reported experience of some with MCS. A segment of the MCS patient population believes emissions from computer CPUs, microwave ovens, refrigerators, electric ovens and other home electronic devices can affect them and others.
While scientists investigate MCS and its mysteries, patients and the people who love them continue to take many actions. In Snowflake, and in other areas, they creatively respond to a challenge. Adaptation to illness helps humans survive.
Scientists in Denmark know that. In 2012 they began designing a study to investigate whether yoga practices like those advocated by Jon Kabat Zinn could help MCS patients cope with the stress that accompanies this diagnosis. Christian Riise Hauge and other researchers at The Danish Center for Chemical Sensitivities in Copenhagen announced the initiative. Results of their study are yet to be published.
Conducting mindfulness training sessions for MCS patients would also increase social interaction. “Patients are very isolated,” Dr. Oliver explained.
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