Home Sections Archive by category Business of Aging (Page 2)

Business of Aging

Business of Aging Sections

Sight Restoration

Dr. John Papale says most patients who undergo cataract-removal surgery see a more than 95% restoration of vision.

Dr. John Papale says most patients who undergo cataract-removal surgery see a more than 95% restoration of vision.

As the population ages, eye problems will become an increasingly large healthcare issue for society. Fortunately, modern science and new surgical techniques are bringing improved vision — and better quality of life — to those suffering from a number of common ailments.

Several months ago during a routine eye exam, Louise Pugliano was told that she had cataracts in both eyes. The 84-year-old doesn’t drive at night and had no symptoms, but had worn glasses or contact lenses for more than 20 years, and agreed to have cataract-removal surgery.

The first procedure took place Jan. 8, and the second was done Jan. 23, and they were not only painless, but the Springfield woman was thrilled to find she no longer needs prescription eyewear.

“I’m so glad I did this; I had a great experience and wonderful results: I don’t need glasses anymore and can read the small print in the newspaper,” Pugliano said, adding that she had complete faith in her surgeon, Dr. John Papale of Papale Eye Center in Springfield.

Her diagnosed condition, treatment, and response to it are all typical of what’s happening within the broad realm of eye care today — as the population ages, more people are being diagnosed with problems, but modern science has created solutions, many of which are truly life-altering.

Papale told BusinessWest that cataract removal is the most commonly performed surgery in the U.S., and more than 3 million people have the procedure done every year. The 20-minute outpatient operation corrects vision and eliminates troublesome symptoms that affect many seniors, such as seeing halos or being bothered by the glare of oncoming headlights when driving at night.

“Most people have more than a 95% restoration of vision, assuming there are no other problems such as glaucoma and macular degeneration,” Papale said, as he spoke about conditions that affect aging eyes.

Indeed, they are common. The Mayo Clinic reports that about half of all 65-year-old Americans have some degree of cataract formation, and more than 30 million Americans are expected to develop them by 2020. In addition, more than 6.5 million Americans age 65 and older have a severe visual impairment, and rates of severe vision loss are expected to double by 2030.

Dr. Camille Guzek-Latka, an optometrist at Chicopee Eyecare, P.C., says many people use over-the-counter glasses to avoid getting an eye exam. “But the exam is important; we not only evaluate the need for glasses, we look for evidence of eye disease because, as people age, their risk of developing a problem increases.”

Annual eye exams are critical for people over the age of 60 because eye disease can cause irreversible blindness and there may be no symptoms until it reaches an advanced stage.

Dr. Andrew Jusko says an eye exam is needed to detect glaucoma, as there are no symptoms in the early or middle stages.

Dr. Andrew Jusko says an eye exam is needed to detect glaucoma, as there are no symptoms in the early or middle stages.

Although some people don’t have vision coverage on their insurance plan, Eye Care America has provided free exams to almost 2 million eligible seniors (visit www.aao.org), and health-insurance plans cover the cost if a minor medical problem is uncovered, which usually happens as people get older.

“It’s important to protect against damaging eye diseases; people are living longer today and want to maintain full visual functionality through the end of their lives,” said surgeon Dr. Andrew Jusko of Eyesight and Surgery Associates in Springfield and East Longmeadow.

Papale agrees. “The eye is our most important sense: 25% of all input to the brain comes from the eye and nerve endings,” he noted.

For this issue and its focus on the business of aging, BusinessWest examines problems that affect aging eyes and what can be done to prevent and correct them.

Cause, Effect, and Treatment

The lens of the eye consists of a flexible jelly that begins to stiffen as people enter their 30s and 40s. The condition is called presbyopia, and most people need reading glasses to compensate for the fact that their eyes can no longer shift focus easily.

“Many people in their 40s and 50s get by with over-the-counter reading glasses, but by the time they reach their 50s or 60s they usually don’t work well,” Jusko said, adding that early stages of other diseases such as diabetes or hypertension can be seen in the eyes during an exam.

Cataracts cause the lens to change from crystal clear to cloudy, and typically develop as people age. They don’t harm the eye but do affect vision, and surgery to correct the problem involves replacing the aging lens with an artificial one.

In the past, eye drops were always needed for a few weeks following the procedure, but Guzek-Latka said a newer approach is often used today called ‘dropless cataract surgery,’ which occurs when the surgeon injects a combination of antibiotics and steroids into the eye at the time of the procedure to reduce the need for drops after it.

“The surgery is safe and wonderful; it can restore sight, reduce the risk of falling, and people are thrilled with the results,” she noted, adding that, although cataracts are related to aging, prolonged use of steroids for conditions such as asthma can cause them to develop earlier.

Cataracts are a change that occurs as the eye ages, but glaucoma is an age-related disease that causes blindness as the peripheral or side vision is lost.

“It’s called the silent thief of sight because the vision loss occurs slowly and painlessly,” Guzek-Latka said, adding that the condition is linked to a buildup of pressure inside the eye, but it can take many years for the vision loss to occur.

The disease can start in the 40s, but risk increases with age. “People cannot tell if the pressure inside their eye is normal, so they can be going blind and not know it,” Papale told BusinessWest, noting that, since glaucoma frequently only affects one eye, the other eye compensates for it so the person doesn’t realize what is happening.

As a result, it’s critical to catch the disease before irreversible damage is done. “An eye exam will show whether the pressure is normal and if the optic nerves appear abnormal,” Jusko said.

Some forms of glaucoma can be cured, and treatment ranges from surgical procedures to prescription eye drops that control pressure inside the eye.

Jusko often uses eye stents during surgery, which are small devices implanted in the drainage area of the eye to help reduce the need for future medication.

“The average age for glaucoma is the 70s, which is about the same age that people need cataract surgery,” he said, noting that stents can also be used during that procedure.

Age-related macular degeneration, or AMD, is one of the most serious eye diseases and the leading cause of blindness in seniors. “The macula is the part of the retina that gives you the sharp vision you need to read, drive, and recognize faces,” Papale said.

More than 2 million Americans are afflicted with some form of the disease, and that number is expected to more than double to 5.4 million by 2050 due to the aging population.

“It’s the leading cause of irreversible vision loss in people age 50 and older, and treatment for it is limited,” Guzek-Latka said.

“There are usually no symptoms in the early stages, but the disease can be seen when the pupil is dilated during an eye exam,” she continued, adding that, as the disease progresses, it causes distortion in the central vision. “People can still see things on the side, but they can’t read, and faces often appear as dark gray areas. Most people think blindness means total blackness, but it’s very rare not to be able to see any light.”

The cause of AMD is unknown, but it’s important for people to be aware of risk factors. Smoking doubles the risk of macular degeneration, it tends to run in families, women are more likely to develop it than men, and it is more common among Caucasians than African-Americans, Hispanics, and other races.

“People might be able to reduce their risk of macular degeneration or slow the progression by making healthy choices such as regular exercise, maintaining normal blood pressure, quitting smoking, and eating a healthy diet rich in green, leafy vegetables and fish,” Guzek-Latka said.

The disease is divided into two categories — wet macular degeneration and dry macular degeneration. Although there are no symptoms associated with early dry macular degeneration, the vision becomes distorted over time, and once function is lost, it cannot be restored.

However, further damage may be prevented with special vitamins formulated for the eye. “But we don’t recommend taking them unless the person has been diagnosed with macular degeneration,” Jusko said, noting that studies show no definitive or preventive benefits for people without the disease.

Wet macular degeneration is caused by the growth of abnormal blood vessels under the macula that are fragile and prone to bleeding.

“The bleeding is not visible because the macula is in the back of the eye,” Papale said, adding that the dry form of the disease can progress to the wet type.

Treatment includes injections of medicine that block the growth of abnormal blood vessels and can lead to some improvement.

“It won’t cure the disease, but it’s definitely an advance; 10 years ago, there was less hope for people with wet macular degeneration then there is today,” Guzek-Latka said.

She added that FDA approval was granted for an implantable device in 2010 that is used at the end stages of the disease. It’s the size of a pea and magnifies images onto the retina.

“But it’s only used as a last resort. It will not restore vision, but might allow someone to identify faces, even if they are not clear,” she said.

Diabetes is another disease that affects the eyes. According to the National Eye Institute, 40% of Americans over age 40 have some degree of diabetic retinopathy, and one of every 12 people with diabetes in this age group has advanced, vision-threatening retinopathy.

That’s a condition that results when small blood vessels in the retina leak blood or other fluids that cause progressive damage to the retina, which is the light-sensitive lining at the back of the eye.

“Once someone is diagnosed with diabetes, they need yearly eye exams to detect it,” Jusko said.

Treatment ranges from the use of lasers to injections and surgical procedures, and primary-care physicians usually work closely with the person to ensure their blood-sugar levels and blood pressure are under control.

Hope for the Future

Dry eye is another condition that can affect people of any age, but is more prevalent in elders and post-menopausal women. It results from inadequate tear production and causes burning, stinging, itching, or the feeling that sand is in the eyes.

It can be alleviated with over-the-counter lubricating drops, fish-oil supplements, and vitamin C. But dry eye that is moderate or severe can cause damage, so people whose symptoms aren’t helped with over-the-counter remedies should see their eye doctor.

There is no doubt that eyesight is affected as people age, but there are things everyone can do to help to prevent disease. Eyes need good blood circulation and oxygen intake, and since both are stimulated by regular exercise, it ranks high on the list.

People should also do their best to maintain normal blood pressure and cholesterol levels, and wear sunglasses that block ultraviolet light.

But getting an annual eye exam is the most important measure anyone can take to preserve vision.

“Eyesight is our most important sense,” said Guzek-Latka. “We rely on it for so many things, and having good vision is a driving factor in people’s well-being as they age.”

Business of Aging Sections

The Write Stuff

By Gina Barry, Esq.

Gina Barry

By Gina M. Barry, Esq.

It should come as no surprise that the general population of the U.S. is aging. According to the Administration for Community Living, which was created by the U.S. Department of Health and Human Services, people who were age 65 or older represented 14.5% of the population in 2014, and that number is expected to grow to 21.7% of the population by 2040.

When aging, most people would prefer to have a plan in place to ensure that their needs and goals will be met, even if they are incapacitated or pass away. While many people believe they do not have enough money to need an estate plan, the need for an estate plan is not solely related to the amount of one’s wealth.

As explained below, a basic estate plan is comprised of four legal documents and is quite simple to establish.

Last Will and Testament

A will directs the disposition of the probate estate. The probate estate consists of assets held in the decedent’s name alone that do not have a beneficiary designated. When a person passes away without a will, their estate will be distributed as directed by the Commonwealth’s intestacy law, which may not be as they would have desired.

A common misconception is that a will is not needed if every asset is jointly owned or has a designated beneficiary. Of course, there must be a surviving joint owner for this plan to work. If both owners pass away simultaneously in a common accident, the estate will need to be probated, as there will be no surviving joint owner.

A will is also necessary in order to designate a personal representative, who will carry out the estate. The personal representative will gather the probate assets, pay valid debts, and make distribution of the estate to the beneficiaries as set forth in the will. Further, if the decedent leaves behind minor children, a guardian can be designated in the will to take custody of these children.

Likewise, a trust can be established in a will that would provide ongoing protection for minor children — or possibly for other beneficiaries who should not receive their inheritance outright, usually due to spendthrift concerns. When there is no will in place, the power and ability to make these designations and to direct the disposition of property is forfeited.

Healthcare Proxy

A healthcare proxy is a document that designates a healthcare agent, who would make healthcare decisions in the event of incapacity of the principal (person signing the proxy). The healthcare agent would step into the shoes of the principal and make decisions as they would if they were able. For example, they may decide whether a certain medication should be taken, whether a certain medical procedure should be done, or whether there should be an admission or discharge from a medical facility.

 

While many people believe they do not have enough money to need an estate plan, the need for an estate plan is not solely related to the amount of one’s wealth.”

 

‘Living will’ language is normally included within the healthcare proxy. The living-will language addresses end-of-life decisions and generally sets forth that the principal does not want extraordinary medical procedures used to keep them alive when there is no likelihood of recovery. This can be a difficult decision to carry out; therefore, care should be taken to name someone who would be able to honor that decision. Individuals who have an advanced illness may choose to establish medical orders for life-sustaining treatment (MOLST) in addition to a healthcare proxy.

A MOLST is a medical order form completed by a patient and their physician that relays instructions about a patient’s care, including stating which treatment should be given or otherwise withheld. A MOLST would eliminate the need for living-will language in a proxy, but the best practice would be to reference it in the proxy.

Durable Power of Attorney

A durable power of attorney is a document that designates someone to make financial decisions. This document is usually in full force and effect when it is signed, but it is expected that it will not be used unless you are unable to handle your own financial affairs. It is also possible to grant a springing power that does not take effect until incapacity arises.


Rehabilitation Facilities in Western Mass.


The power of attorney is a very powerful document that is as broad as the powers granted within it. It gives authority to the designated person to handle all financial decisions, not just pay bills. In most cases, the person named will be authorized to handle real estate, life insurance, retirement accounts, other investment accounts, bank accounts, and any other matters involving money.  As such, the person chosen to serve in this capacity should be someone with financial savvy who can be trusted without reservation.

Homestead Declaration

The homestead declaration, once properly recorded in the Registry of Deeds, declares a principal residence to be a homestead. The homestead declaration protects the equity in the primary residence up to $500,000 from attachment, seizure, execution on judgment, levy, or sale for the payment of debts.

In some cases, such as advanced age or disability, the equity protection can be up to $1 million. If a homestead declaration is not recorded, there is an automatic $125,000 of equity protection.  In addition to some other specific exceptions, a homestead declaration will not protect the real estate from nursing-home costs or tax liens.

Conclusion

With these four documents, most people can help their family members or trusted companions avoid expensive and painful legal hassles related to their ongoing care and their estate.

Individuals with more complicated estates may require different or additional documents to fully protect their interests and their beneficiaries, but for the majority of people, an estate plan is only four documents away.

Gina M. Barry is a partner with the law firm Bacon Wilson, P.C. She is a member of the National Assoc. of Elder Law Attorneys, the Estate Planning Council, and the Western Mass. Elder Care Professionals Assoc. She concentrates her practice in the areas of estate and asset protection planning, probate administration and litigation, guardianships, conservatorships, and residential real estate; (413) 781-0560; [email protected]

Business of Aging Sections

A Transformation in Care

The living room at the Sosin Center for Rehabilitation

The living room at the Sosin Center for Rehabilitation, like other areas of the facility, are meant to
evoke a home-like feel for residents preparing to return to their own homes.

When JGS Lifecare launched the strategic plan five years ago that would become Project Transformation, the goal was to, well, transform the organization’s entire range of senior services to reflect 21st-century ideas about delivering care in a resident-centric way. The Sosin Center for Rehabilitation, the highlight of the project’s first phase, is a good example, employing the burgeoning Green House philosophy, a model aimed at making residents feel at home while achieving the independence they need to return to their own homes.

The hallways in the Sosin Center for Rehabilitation are wide, allowing for freedom of movement for multiple individuals going about the business of regaining their independence.

The bedrooms, as BusinessWest observed on a recent tour, are simple but elegant, with mounted flat-screen TVs and adorned with paintings created by local artists. The bathrooms are large, well-appointed, and completely accessible to people with ambulatory challenges, and the spacious common living room is bathed in natural light.

Martin Baicker

Martin Baicker says the Green House model has been proven to improve rehab outcomes and reduce rehospitalization rates.

“When we show people the Sosin Center, it speaks for itself,” said Susan Halpern, vice president of Philanthropy for JGS Lifecare, which opened the Sosin Center to short-term residents this month. “It’s the kind of environment where you’d want your loved ones to be cared for.”

The facility is named after George Sosin, a JGS volunteer, family member, former resident, and supporter who left $3 million dollars to JGS Lifecare in support of the center, the largest contribution received in JGS’s 104-year history. It contains two households, each designed to accommodate 12 short-stay residents. All 24 rooms are private, with full baths, and each home has a shared living room, dining room, den, kitchen, and porch, which provides seasonal access to the outdoors.

JGS unveiled the Sosin Center and the neighboring Michael’s Café — which connects the short-term rehab facility with the Leavitt Family Jewish Home, the organization’s nursing home — as part of phase 1 of Project Transformation, a multi-pronged endeavor to, well, transform JGS’ many senior-care elements into facilities that truly reflect 21-st century healthcare.

Notably, JGS Lifecare partnered with the Green House Project to implement a small-house model of care at the Sosin Center that is slowly becoming recognized throughout the industry for its success in reducing medication use and rehospitalizations, while affording greater socialization and interaction with caregivers.

Martin Baicker, president and CEO of JGS Lifecare, noted that more than 64% of all short-stay residents at JGS are successfully discharged to the community, which is more than 10% above the national average, but he expects the percentage to rise further at the Sosin Center.

The Green House model extends well beyond aesthetics, Baicker said, encompassing a three-pronged philosophy — real home, meaningful life, and empowered staff.

The first element is an effort to make short-term residents feel at home, not on some institutionalized schedule. “You wake when you want, go to sleep when you want — and it also looks like your home, architecturally,” he said.

Meaningful life means giving people choices in their day, and the small number of units allows residents to build strong relationships with the staff, he went on. “They feel a real sense of engagement.”

As for empowered staff, this might be the most important element of all, Baicker noted. Typically, he noted, an organizational chart extends from the top down, but here, it’s a series of concentric circles with the resident at the center, and the certified nursing assistants representing the second circle. “They provide personal care, cooking, laundry, light housekeeping, activities — and this is given by the same person spending an awful lot of time with the resident, getting to know them.”

Susan Kline and Stephen Krevalin

Susan Kline and Stephen Krevalin are co-chairing the $11 million capital campaign for Project Transformation.

The CNAs are supported by nurses; physical, speech, and occupational therapists; and perhaps a doctor, but still essentially make the day-to-day decisions about how the house is run, he explained. “That is totally, radically different than running a traditional nursing home.”

Person-centered Care

Of course, the Sosin Center isn’t a nursing home, which is why Halpern is happy that short-term rehab residents at JGS are no longer sharing space at Leavitt. “It’s not beneficial for someone to come in for rehabilitation and cohabitate with people in long-term care. They’re here short-term, getting ready to go home.”

Baicker agreed. “People in short-term rehab don’t want to feel like they’re in a nursing home.”

The Green House philosophy represents a stark change in the way the healthcare industry traditionally frames short-term rehab, Halpern added. “It’s person-centered care. You empower the residents to make decisions about how to model their daily lives and routines — when they get up, what food they eat. They have more say in their actual caregiving.”

Baicker said the outcomes of the Green House model have been impressive at other facilities that utilize it. Patients tend to need less medication, eat more food — because the scents of meals being prepared where they live activates their appetite — and engage in life in a more dynamic way, since they’re constantly engaged with the staff. “All those things combine to improve outcomes.”

Much of the rehabilitation incorporates activities residents will conduct once they’re back at home, from reaching shelves and preparing food to washing and bathing, said Susan Kline, who is co-chairing the $11 million capital campaign for Project Transformation with Stephen Krevalin. Both are longtime volunteers with the JGS Lifecare organization and former chairs of its board of directors.

Most Sosin residents will come from hospitals, but some from other settings, and while a small number may wind up in nursing homes, that’s rare; the idea is to prepare individuals to return to their homes and independence.

“The outcomes have proven to be much more successful in this setting than what occurs in other areas,” Kline added.

When Baicker came on board in 2012, JGS was already busy strategizing for the series of changes that would eventually become Project Transformation, including planned improvements to short-term rehabilitation and assisted living, as well as a revamp of the adult day health program to better serve a growing population of seniors in the early stages of dementia.

JGS Lifecare building committee members Frank Colaccino and Jeff Grodsky

JGS Lifecare building committee members Frank Colaccino and Jeff Grodsky unveil the Sosin Center for Rehabilitation at the facility’s recent ribbon-cutting ceremony.

But he was one of the first in the organization to promote the Green House model, and when the board responded positively, team members started paying visits to other facilities that had incorporated it, from Mary’s Meadow in Holyoke to the Leonard Florence Center for Living in Chelsea.

“The board did their due diligence and decided this is the way we’re going to move,” he said. “And, ultimately, we want to expand this model to the long-term portion of the nursing home.” Indeed phase 2 of Project Transformation will turn to modernizing two 40-bed wings of the Leavitt Family Jewish Home in the Green House model.

Construction of the 24,000-square-foot Sosin Center and the adjoining kosher café began in June 2015, and both were dedicated at a ceremony last month shortly before their official opening.

The café is dedicated to the memory of the late Michael Frankel, who was an outspoken advocate for Project Transformation, Halpern said. “Naming the café in his honor is a permanent tribute not only to Frankel’s extraordinary commitment to the care of our elders at the highest standards, but also his vision for JGS Lifecare for generations to come.”

Krevalin hopes the café serves as a “beacon for the community,” noting that it connects the nursing home and the Sosin Center and is not only an ideal meal spot for residents, families, and staff, but for the public as well. “We’re hoping the community supports it.”

Ahead of the Curve

Project Transformation is far from the first time JGS leadership has moved away from traditional, stale facility design, Halpern said. As far back as the 1990s, the organization was renovating the nursing home and designing the Ruth’s House assisted-living facility to be more homelike and less institutional. “It’s all about making people feel comfortable in the environment where they’re living. The nursing home was built at a time when nursing homes were like hospitals, with nurses’ stations.”

Twenty years ago, a shift to a more home-like setting was still an innovative idea in healthcare, Baicker said. “You can’t underestimate the forward thinking of the leaders of this organization, making the common areas and dining areas less institutional. This [Project Transformation] is the continued evolution of that.”

“And believe me,” Kline added, “we’re already thinking about what’s next.”

Ruth’s House underwent some improvements as part of phase 1 as well, and phase 2, in addition to modernizing the nursing home according to the Green House model, will relocate and expand Wernick Adult Day Health Care to include a specialized Alzheimer’s program.

All this takes money — both phases were initially budgeted at $20 million but could eventually approach $23 million, Krevalin said — and more than 150 supporters have already contributed some $8.5 million to the capital campaign, which had an initial goal of $9 million but will be extended to $11 million.

“The initial response is heartening. It shows that many donors already understand the impact that our new facilities will have on the quality of life of our elders and others we serve,” Krevalin said. “Once people see Project Transformation, they will understand its impact, and they will want to be part of it.”

Joseph Bednar can be reached at [email protected]

Business of Aging Sections

Finders, Keepers

pileofjunkhoardingartWhen Bec Belofsky married Lee Shuer, she had no idea he had hoarding disorder.

When they met, he was living in an apartment with roommates, and she didn’t know most of the items in it, which included a ‘museum room’ filled with a seemingly endless number of things, belonged to him.

But within a short period of time, every surface in the married couple’s apartment was covered. In fact, although they could barely get through the apartment — and she had bruises from bumping into things — he continued to bring home ‘treasures’ on a daily basis. “I had a feeling of dread every time I heard the sound of his key in the lock,” she recalled.

Shuer told BusinessWest he also had a storage unit that was full and a collectibles booth in South Deerfield, but never sold much.  “I couldn’t let go of anything, so I had everything priced for more than it was worth,” he said.

Anyone has who watched TV shows depicting people who hoard might think there was little hope for Shuer or the marriage, but today much of the couple’s Easthampton home is immaculate, he has been in recovery for 11 years, and they have made it their mission to help other people with what they refer to as “excessive finding and keeping,” because the word ‘hoarder’ leads to feelings of shame and guilt.

They have appeared on many national and international TV and radio shows, including CBS Sunday Morning and Voice of America, and travel the world educating therapists, government officials, relatives of people who hoard, as well as hoarders themselves about what it takes to successfully overcome the disorder.

They want the public to know that television shows that portray interventions with people who hoard are extreme and not representative of the majority of people with the problem. In addition, tactics that include forcing the person to make quick decisions about untold numbers of items, accompanied by threats from family members, can be devastating and lead to a return of the behavior after their space is free of clutter.

“There are kinder, gentler, more effective approaches to the problem,” Shuer said. “Telling someone to stop collecting things is like putting a warning on cigarettes. You have to have the motivation to stop, but once it becomes internalized, people find the strength of purpose they need.”

home-office-before-fix

Lee Shuer

Top: before Lee Shuer overcame hoarding disorder, his home office was unusable. At left: today, his home office is well-organized and contains only items that are truly important to him.

He has worked with individuals, groups, and institutions ranging from Stanford University and Smith College to the Institute for Challenging Disorganization through the couple’s business, Mutual Support Consulting, and has created a program called WRAP for Reducing Clutter, which is a wellness and recovery plan.

Shuer also works with researcher Randy Frost, who co-authored the book Buried in Treasures: Help for Compulsive Acquiring, Saving, and Hoarding, to create The Facilitator’s Manual for the Buried in Treasures Workshop, as well as another workbook designed to help people with the problem.

Frost says the reason it is so difficult for people with hoarding disorder to relinquish possessions is that everything they save has real significance to them. In some cases, such as a journalist who collects newspapers, the collection is a concrete embodiment of their professional identification.

“So getting rid of them makes the person feel as if they are losing that piece of themselves,” said Frost, professor of Psychology at Smith College. “We don’t really know what the underlying cause is, although it is clearly an attachment issue, and there is some indication it is related to early life experiences.”

Jane Laskey, a psychotherapist from Holyoke Medical Center’s Behavioral Health Outpatient Center, has had clients with hoarding disorder, and each one of their situations has been unique. “In many cases, hoarding is a symptom; it’s something people do to protect themselves from feelings that are very scary or painful, including sadness, anger, or hopelessness that often originated in childhood,” she explained.

For this issue’s focus on health, BusinessWest explores the type of thinking connected with hoarding and offers advice from these experts to help people with an overabundance of possessions regain control of their lives.

Making Progress

Shuer’s love for tangible items began when he was about 4 years old and began asking neighbors if they had anything old they didn’t need. His parents allowed him to keep many of the things he was given, including old tools he really liked.

“I was socially awkward as I was growing up, and these things gave me comfort and something to talk about with other people,” he said, adding that, although he had a wonderful family, he often felt lonely because he was a social outcast at school. “I was looking for myself in the stuff I collected.”

For example, he’d always wanted to learn to play a musical instrument, and by the time he was married, he had collected far too many of them.

Today, Shuer tells people who hoard that “letting go doesn’t mean giving up a dream. You can come back to it, but you need to keep your eyes on the real prize.”

His own recovery began 11 years ago when Belofsky-Shuer heard of a study on hoarding that was being conducted by Dr. David Tolin, co-author of Buried in Treasures.

“We have developed treatments for the disorder that work fairly well, but they don’t work for everyone,” Frost said, noting that research continues to help people with hoarding disorder.

At the time, Shuer was working as a mental-health counselor for ServiceNet in Northampton and had served on the Western Mass. Hoarding Task Force for about a year. No one at work knew he had the problem, but in time he admitted to it publicly.

“I had to help others overcome the stigma,” he said, adding that he also received a grant to lead a peer-support group based on Frost’s book. After using principles outlined in the tome himself, Shuer began leading the group and meeting with Frost weekly, and they developed the facilitator guide to help others.

“By that time, I had learned enough to help myself and share what works,” he said. “What takes place in the Buried in Treasures groups is not therapy; it’s an action-oriented plan that helps people take concrete steps to alleviate clutter.”

Still, his wife struggled for years with her own issues caused by his problem. Although Belofsky Shuer has a degree in psychology from Smith and had some academic knowledge gleaned from one of Frost’s classes, she felt isolated and alone.

“The stuff Lee collected was so important to him that it put a real strain on our marriage,” she said. “I felt helpless in our home and insignificant; the things that made up my identity were buried under all of his things.”

Lee Shuer and Bec Belofsky-Shuer

Lee Shuer and Bec Belofsky-Shuer want others to know that TV shows about people with hoarding disorder do not present realistic ways to overcome the problem.

She added that most people don’t know there is help available that works. “Research only began in the ’90s, and TV shows that show forced cleanouts don’t work. But finding the motivation to change and learning why people become so attached to things and challenging their beliefs can make a real difference.”

However, the couple stressed that it’s not an all-or-nothing proposition; getting support from others online, through counseling, or in a support group with peers, which offers the best chance at success, can slowly lead to change.

Shuer said the disorder reflects an abnormal attachment to items that can stem from positive qualities that spiral out of control. For example, a person may feel they are archiving family treasures, don’t want to get rid of printed information they believe may prove valuable in the future, or be overly concerned about recycling things in a proper manner.

“There are emotional and cognitive aspects to decision making when it comes to letting go of things,” Belofsky Shuer explained, adding that the workbook outlines steps for decision making and is available free through their website, www.mutual-support.com.

“We encourage people to start small and focus on clearing one square foot at a time,” Shuer said.

Anyone whose problem hasn’t reached an extreme level can also begin by focusing on sorting through one type of item at a time: they could gather all the books in their home, put them in one place, then begin going through them.

“They need to remember they can get many of them at the library if they want to read them again,” Shuer told BusinessWest.

It’s critically important, Belofsky Shuer added, for family members to take care of themselves during the process. “I completely lost my identity and had a lot of anger and resentment when our home was filled with his possessions,” she said, noting that counseling allowed her to be supportive and restored her sense of self while her husband slowly worked toward their shared goals.

Course of Treatment

Studies have shown that people who hoard have suffered more trauma than the normal population, but only half have undergone a very difficult trauma.

“Trauma is not the underlying issue, but there is a lot of co-morbidity, and the biggest one is depression. More than half of hoarders suffer from it,” Frost said. “It isn’t clear that depression causes the problem, but it can make it worse.”

Laskey added that accumulating things can give people a feeling of control or enhanced self-esteem. She treated one woman with a very poor self-image that stemmed from her childhood who kept buying new clothing, even though she had never worn most of what she already owned.

“Buying gave her hope and a momentary feeling that included excitement and anticipation,” Laskey said, adding that the woman envisioned feeling attractive and confident wearing the new clothing, and lacked the confidence to think of other behaviors that could improve her self-esteem.

She suggests using stalling techniques before bringing anything new home, which can be something as simple as taking a walk.

“The problem is that the brain gets stuck like a record in a groove, and the need to have something becomes an automatic way of thinking,” Laskey said, explaining that, in some cases, the person can learn to be an “impartial spectator” by detaching from their feelings and trying to judge an item the way a friend might view it.

Indeed, asking a close friend for support can be beneficial, but it’s critical for that person to respect boundaries.

“If the person with the problem says they only want to spend 10 minutes going through things, don’t push them to do another five minutes,” Laskey said. “Let them set the ground rules and praise any progress they make. Hoarding is like an addiction which becomes a habit, and habits are really hard to break.”

Frost says three elements are critical to attaining lasting success. The first is controlling acquisition, and addressing the reasons why the person feels compelled to collect things.

“People see something they want, seek things out at yard sales, or find something while they are driving on trash day. Acquiring it is an impulsive behavior. When they find something they like, they get a high that is almost like an addiction; many people have told us it gives them joy in life when they find a new object to bring home,” he explained. “Their attention becomes so narrowly focused that they don’t think about whether they have the money to buy it, room to keep it in, or whether they already have a dozen of the same items at home.”

Treatment involves bringing conscious control into the decision-making process, but won’t work unless something else is substituted that gives the person an equal sense of pleasure.

Frost’s book Buried in Treasures contains a tear-out page with questions people can ask themselves to help them decide whether they should acquire a new item, and includes room for questions appropriate for individual situations that can be generated during therapy sessions or with a peer-support group.

The second key element in successful treatment is treating the overpowering urge and belief the person has that they must have something they see and desire.

“The urge is overpowering, but they have to learn to tolerate it, which is done by creating a hierarchy of situations in which they practice walking away from an item without buying it,” Frost said.

After acquisition and impulsive behavior are under control, the person then needs to pare down their existing trove of belongings.

“We work on changing the nature of the person’s attachments to things so it’s easier to get rid of them,” Frost noted, explaining that people often fear they will become depressed and unable to stop thinking about an item they get rid of, will never be able to find the same type of thing again, will lose an important connection to someone in their life, or will be responsible for harm coming to the object.

“So, we turn them into scientists whose goal is to discover whether their beliefs are true,” Frost said, noting that some clients get rid of one item, then keep track of what their life is like afterward.

“Some feel they will be anxious forever and won’t be able to stand it,” he told BusinessWest, explaining that putting long-held beliefs to the test is difficult for anyone to do.

Shuer said it was an epiphany to realize he could get rid of something and not miss it. “I thought, ‘If I can let go of one thing, maybe I can let go of others.’ The idea brought me a sense of joy and relief that I thought I could only get from acquiring things,” he said, cautioning that, when people begin weeding through their belongings, they should start with items that don’t have strong emotional meaning.

The third key element in successful treatment is learning organizational skills. People who hoard are taught how to create filing systems as well as ways to organize items that are important, as many lack knowledge in this area.

New Outlook

Today, whenever Shuer is tempted to bring home anything new, he asks himself whether he has a place for it, whether he can afford it, and what his wife will think.

“These questions are reality checks that have become automatic for me. I am less impulsive and have moved towards a long-term vision for acquiring things that fits in with my physical space,” he said.

His success has resulted in a new life mission and a better marriage.

“We are happy now,” Shuer said. “When you are living with too much stuff, you can never relax; you feel you should always be working to reduce it. But now that we are liberated from clutter mentally and physically, we have the time and freedom to have fun and help others.”

Indeed, the hope of finding peace of mind, improving relationships, and having time to enjoy life are real treasures that can motivate ‘finders and keepers’ to seek — and work toward — lasting change.

Business of Aging Sections

Difficult Decisions

Dr. Richard Alexander says screening for prostate cancer has become controversial

Dr. Richard Alexander says screening for prostate cancer has become controversial, but at least one study shows it extends longevity in people with the disease.

While much of what is known about prostate cancer is fact — including the fact that 99% of the men diagnosed with the most common forms of the disease will survive more than five years after diagnosis — there is still a good deal of conjecture. That’s especially true when it comes to screening for the malady.

One in seven men will be diagnosed with prostate cancer at some point in their lifetime.

“It’s a complicated disease, and a lot of issues surround it; doctors have devoted their entire careers to one subset of prostate cancer,” said Dr. Adam Tyson, a urologist at Urology Group of Western New England in Springfield.

Although it’s the second-most-common cancer in men and the second-leading cause of cancer deaths (skin and lung cancer, respectively, are number one), routine testing for the disease, which typically has no symptoms until it advances to the lymph nodes and bones, has become very controversial.

Screening involves a digital rectal exam and a simple blood test that measures the level of prostate-specific antigen, or PSA, which is a protein shed into the blood by the prostate gland that becomes elevated when cancer is present.

But in 2012, the U.S. Preventive Services Task Force declared that PSA testing should be abandoned. The reason is twofold: many men with elevated levels of PSA and an abnormal digital rectal exam have had biopsies that turned out to be negative, which caused unnecessary stress and did more harm than good; and arguments have been presented about whether routine testing increases survival rates.

Dr. Richard Alexander, a urologist at Baystate Medical Practices – Greenfield Urology, says a randomized study that followed a group of American men for 10 years found no difference in survival rates in men that were screened versus those not screened for the disease. But the problem with the study was that 70% of the men assigned not to be screened did indeed get screened outside of the study.

Dr. Adam Tyson says most prostate cancers are non-aggressive

Dr. Adam Tyson says most prostate cancers are non-aggressive, so the doctor and patient have to work together to figure out the best way to treat the disease, which depends on a number of factors.

In contrast, a very large European study conducted in many countries showed routine screening did lead to an increase in overall survival.

“It is not an easy thing to determine, and the results were astonishing,” Alexander said, noting that prostate cancer is found most commonly in men age and 60 older who often have two or more other diseases as well due to their advancing age, among other factors.

It can only be diagnosed by a biopsy of the prostate, which is done in a doctor’s office through the rectum using ultrasound guidance.

Alexander noted that an elevated PSA level increases the chance that cancer could be present, but it can be elevated by other factors that range from an enlarged prostate to inflammation of the prostate gland.

Neither the digital rectal exam or PSA level is a perfect test, but the American Urological Assoc. feels screening can be valuable for men between the ages of 55 and 70, especially if they are at high risk for the disease due to a family history, as it has a strong genetic component.

“I don’t think all men should be tested. But at age 50, they should have a conversation with their doctor about it, and if they ask for my recommendation, I tell them to get it done,” Tyson said, explaining that, since it is often a slow-growing cancer, it doesn’t make sense to test men over the age of 75.

“A lot of the cancers are non-aggressive and may or may not catch up with people, so the question is how to find men with aggressive cancer and treat them. Many men get biopsies who don’t need them, but if they don’t, the only other time the cancer will be found is in the late stages. And although most men with prostate cancer are more likely to die with it, rather than from the disease, there are still 26,000 men who die every year from it, and if it doesn’t kill you, it can keep you from being able to urinate, or spread to the bones and lead to fractures.”

He noted that a biopsy can be recommended with an abnormal PSA or abnormal exam.

“Often, the PSA will be repeated to confirm accuracy if it is elevated. But depending on many factors, a urologist may recommend a biopsy with a single abnormal PSA or an abnormal digital rectal exam,” he continued, explaining that, although prostate cancer is rarely found in men under the age of 40, he has seen it in men in their 50s with some degree of frequency.

Personal Decisions

The American Cancer Society says about 180,890 new cases of prostate cancer will be detected this year, and about 26,120 deaths will result from it. However, if it is caught in the early stages, it is treatable, and 2 million men who are alive today are prostate-cancer survivors. In fact, 99% of men with the most common types of prostate cancer will survive more than five years after diagnosis, and when the disease is localized to the prostate or just nearby, which occurs 90% of the time, the prognosis is even better; almost 100% will live at least five years.

But there is a great deal of fear surrounding the disease as well as myths associated with it, including the perception that prostate-cancer surgery means an end to a man’s sex life.

“When I tell someone they have cancer, that word is almost always the only thing they hear during our first conversation,” Tyson said. “It’s a life-changing event, so people with the disease need to work closely with their doctors.”

Alexander says men have choices about what will happen to them, but they need to have a clear understanding of the issue before making any decisions.

“People are terrified of the word ‘cancer,’” he said. “But many men can live with prostate cancer their entire life, while in others it progresses, and although there is no way to accurately predict the future, predictions have become more accurate than they were in the past.

“I encourage men to be aware of their options and make informed decisions,” he continued, adding he frequently hears horror stories from men who had a relative with the disease. Their initial instinct is to base their decisions on anecdotal evidence about what happened to that person, but decisions need to be made carefully, and both he and Tyson believe in seeking second and even third opinions after a cancer diagnosis.

“There is a risk in doing anything, but there is also a risk in doing nothing,” Alexander noted.

Symptoms that occur when the disease has advanced include problems with urination, loss of appetite, weight loss, and metastatic disease, which is the name given to a cancer when it has spread to the lymph nodes or bones.

But the disease has different stages as well as grades, which refers to how the cells in the biopsy look under the microscope and can indicate whether the cancer is likely to progress.

There are four treatment options available today: radical surgery, radiation therapy, hormone therapy, and active surveillance, which can include additional biopsies every year or several years. The age of the patient and their overall health and willingness to be treated help determine what choice is best. But they all have their own risks.

“A radical prostatectomy removes the entire prostate and attached glands, and the main risk is urinary incontinence and erectile dysfunction,” Alexander said, adding that the surgery is done if the cancer is still confined to the prostate, and the success rate is high. As to side effects, although most men have some incontinence following surgery, few are left with a permanent problem.

Radiation therapy can be done with machines over a period of weeks, and side effects include more frequent urination, burns to the bladder or rectum, and erectile dysfunction. The therapy can also be delivered by implanting radioactive seeds into the prostate. The radioactivity is gone within a year, but the metal seeds remain. The procedure requires anesthesia and takes about an hour.

“But not everyone is a good candidate for the seeds,” Alexander said, adding that whether someone is a candidate depends on the stage of the disease and how likely it is that the cancer will spread.

Hormonal therapy is reserved for more advanced cases, but this treatment has come a long way: decades ago, it involved removing the testicles, while today it is administered through injections. Possible side effects include hot flashes, muscle loss, fatigue, and loss of bone density.

“In some cases, hormonal therapy is combined with radiation,” Tyson said, noting that is usually done only in the case of advanced disease.

And although some treatments do cause erectile dysfunction, the problem has been mitigated by drugs such as Viagra and Cialis, which can improve the quality of a man’s life.

“The way a man urinates after any treatment will shift, and since the nerves and blood vessels involved in an erection are attached to the back of the prostate, any treatment will affect it. Sometimes there is only an occasional weakening, but most men will need medications to regain potency,” Tyson explained.

The final option for men with cancer is to do nothing other than be followed closely, and this choice is becoming more popular in cases where the disease is considered low-risk. “We are finding that prostate cancer can often be watched for years and never progress,” Alexander said, adding that hundreds of thousands of men who have the disease may never know about it.

Final Recommendations

Despite conflicting opinions, Alexander believes men with abnormal PSA levels should have biopsies. “I would rather know I had the disease and make a decision not to have any treatment than not know I have it,” he said, adding that the decision is an individual one, and although in most cases prostate cancer is slow-growing, that’s not always the case, as evidenced by the number of deaths from it each year.

Advances in the field have been made, such as robotic surgery, which is less invasive, involves less blood loss, and allows men to recover more quickly than they did before it was invented.

“When people hear the word ‘cancer,’ they go into panic mode, but it’s important to understand the nature of the cancer because every cancer has its own way of behaving,” Tyson said. “Most prostate cancers do not spread rapidly and are non-aggressive, so the doctor and patient have to work together to figure out what is right for the patient. There is no single right answer; some people absolutely need treatment, and in others, it is less clear.”

Indeed, there is a lot of choice involved in the matter, but the first step — which is to get tested — is something every man should consider and talk to his doctor about.

Business of Aging Sections

Lighting a Path

 

pathlightSPRINGFIELD — In a time of change for what, until recently, was known as the Assoc. for Community Living, the organization’s passion and innovative spirit will remain constants, its executive director says.

But it needed a name change, Ruth Banta went on, one that underscores the scope of the services it has provided to people with intellectual disabilities in the community — from youth through the senior years — since 1952.

That new name is Pathlight.

“What we’re hoping with the new name is that people will associate it with the breadth of the services that we offer,” she said. “When people hear that a service is a Pathlight program, we want them to know that means it is a caring, high-quality service backed by high-level expertise.”

Banta also announced that, in continuing the organization’s innovative spirit, Pathlight has partnered with Valley Venture Mentors (VVM) to offer the Pathlight Challenge. The two organizations have put out a national call to startup entrepreneurs to develop technology aimed at increasing independence for people with intellectual disabilities.

It’s expected that at least two proposals from startups will be accepted by Pathlight. Those entrepreneurs will be enrolled in Valley Venture Mentors’ four-month, intensive Accelerator Program in January.

“It’s a great partnership,” Banta said. “We’re tying our history of innovation and our passion for the people that we serve to entrepreneurs’ passion for innovation and breaking barriers.”

Paul Silva, chief innovation officer at Valley Venture Mentors, said what’s key in the Pathlight Challenge is that startups will have access to people in the populations they are hoping to serve as they produce their innovations.

“Interfacing with stakeholders is normally hard to do,” he said. “We have created a way in which companies that are worthy can get the access they need. If they want to develop something for parents, Pathlight can connect them to parents. If they want to gain access to staff, we can connect them to staff. This will allow them to troubleshoot problems as early as possible and allow their ideas to evolve more quickly. Pathlight is giving these startups a chance to be more competitive and, thus, more likely to survive.”

New Era

Formerly vice president of administration and chief financial officer at the organization that serves people with disabilities across Western Mass. from infancy through end of life, Banta said the name change to Pathlight was part of a rebranding that began last fall as a means of solidifying the agency’s persona and outlining its key values.

“Our mission is to help people on their own unique journey to experience the life they want to live,” she noted. “We weren’t being literal when we chose the new name, but we hope that it conveys that we shine a light on those journeys.”

Banta is excited about the partnership with Valley Venture Mentors, as it highlights the organization’s long-standing history of innovation. She noted that Pathlight’s history of advances dates back to its roots. “We were the first to open a community residence for people with disabilities and the first to create a shared living model for families.”

Now, she added, “we’re looking at how we serve the Millennial population of people with developmental disabilities and autism and looking at how technology can give these young adults the independence that they and their families want for them.”

The Pathlight Challenge is especially seeking solutions to issues regarding health, safety, and transportation.

“Transportation is often a big hindrance to the people we serve in terms of getting to jobs and recreational opportunities,” Banta said. “We’re looking to see how technology can offer assistance there.”

Silva said he is excited about the national call for proposals that will now be launched via both organizations’ databases and online connections. The selection process will continue through October.

The Accelerator Program is a four-month, intensive program held over one long weekend a month, offering startups connections to subject-matter experts, investors, and highly engaged and collaborative peers. Those competing in the program can win up to $50,000 in grants to develop their business or product.

The Pathlight fellows will graduate from the Accelerator Program in May, when they will also unveil their new technology, Silva said.

“To our knowledge, this challenge is the first of its kind,” he added. “There are hundreds of accelerator programs in this country running every year, but I haven’t run across any that are focused on assistive technology. Assistive technology is a new focus.”

One he and Banta — and plenty of clients — hope will continue to light a path to greater independence.

Business of Aging Sections

Shock to the System

DBS treatment

From left, Dr. Octavian Adam, Dr. Mohamad Khaled, and Paul and Kathie Schafer discuss the results of Paul’s recent DBS treatment at a recent press conference.

Paul Schafer’s wife likens it to “something out of Star Wars,” but it’s firmly in the realm of real-world science, and it holds the potential to change countless lives. It’s called deep brain stimulation, and for Schafer, who suffers from essential tremor, as well as many Parkinson’s disease patients, this treatment — now available at Baystate Medical Center — has opened a door to enjoying the activities of daily life most people take for granted.

Paul Schafer pressed a button on a small, handheld device, and started to shake.

The tremors were subtle at first, but within seconds his hands were shaking uncontrollably. When he picked up a plastic cup, the doctors sitting with him were grateful it was empty. When they handed him a pen to write his name, the scrawl couldn’t even be recognized as letters, let alone anything intelligible.

That was his life before his recent brain surgery, one of the first of its kind in the region. But when he pressed that button again — not without difficulty — the shaking stopped, and he was able, once again, to perform those simple activities.

That’s his life now.

“It changed my whole life,” said Schafer, 74, while sitting with his wife, Kathie, and the Baystate Medical Center doctors who facilitated that change. “All the mundane things you do every day, I wasn’t able to do without help — drink coffee out of a mug, brush my teeth, comb my hair, button my shirt … all the stuff everyone takes for granted. It was too challenging to do those things before the surgery.”

The procedure is known as deep brain stimulation, and it helps people like Schafer — who suffers from a common neurological movement disorder called essential tremor — as well as patients with Parkinson’s disease, dystonia, and obsessive-compulsive disorder, a chance at a normal life.

It changed my whole life. All the mundane things you do every day, I wasn’t able to do without help — drink coffee out of a mug, brush my teeth, comb my hair, button my shirt … all the stuff everyone takes for granted. It was too challenging to do those things before the surgery.”

The tremors caused by such conditions can be debilitating. But DBS, performed successfully — as Baystate neurosurgeon Dr. Mohamad Khaled did for Schafer — is opening up a dramatic new door to quality of life for potentially millions of sufferers.

The surgery — which involves drilling a small hole into the skull, under local sedation, and inserting electrical wires into the area of the brain where circuit errors are causing the tremors — may also hold potential in areas ranging from Alzheimer’s disease to severe depression, but those frontiers are still being studied.


Go HERE for a list of Skilled Nursing/PT Facilities in Western Mass.


The U.S. Food and Drug Administration approved the treatment for essential tremors and Parkinson’s in 1997, and it’s now recommended for patients with severe symptoms that don’t respond to medication anymore, or when the response isn’t sufficient, said Baystate neurologist Dr. Octavian Adam.

“Paul had symptoms for 15 years, and took a number of medications with some response; then the symptoms progressed and really affected his life in a negative way,” he went on. “He had difficulty using his hands — writing, holding a cup of coffee without spilling it, using a fork and knife to eat, brushing his teeth.”

Because the medications weren’t working anymore, the Schafers saw DBS as, well, a no-brainer.

“Dr. Adam was suggested by Paul’s previous neurologist, who said there may be something else we could look into,” said Kathie Schafer. “When we walked out of the building, we sat in the car, looked at each other, gave a big sigh, smiled, and said, ‘it looks like there’s a way — a better way of life.’ I think that was how we thought about the entire procedure.”

Finding the Sweet Spot

According to the National Parkinson Foundation, deep brain stimulation has proven to be an effective treatment for that disease’s symptoms, such as tremor, rigidity, stiffness, slowed movement, and walking problems, as well as similar symptoms present in essential tremor.

DBS does not damage healthy brain tissue by destroying nerve cells, the foundation noted. Instead, it uses a surgically implanted, battery-operated medical device called a neurostimulator to deliver electrical stimulation to targeted areas in the brain that control movement, blocking the abnormal nerve signals that cause tremors.

Dr. Octavian Adam, left, and Dr. Mohamad Khaled

Dr. Octavian Adam, left, and Dr. Mohamad Khaled say not everyone with tremors is a candidate for DBS, but those who are typically find the results dramatic.

The DBS system consists of three components: the ‘lead,’ an electrode — a thin, insulated wire — inserted through a small opening in the skull and implanted in the brain; another insulated wire passed under the skin of the head, neck, and shoulder, connecting the lead to the neurostimulator; and the neurostimulator itself, a sort of battery pack implanted under the skin, usually near the collarbone.

In the first phase of the procedure — called phase zero, because it doesn’t involve surgery — the neurosurgeon uses MRI or CT scanning to identify the area of the brain where the electrical nerve signals generate the tremors.

Phase one, as the next step is known, involves implanting the electrodes in the brain while the patient is under sedation. When the patient wakes up, Khaled asks him to point a laser at a target on the wall. As the doctor adjusts the electrical wires to target the appropriate circuit in the brain, the patient’s shaking hand slowly begins to stop shaking so that the laser is directly pointed in one location. That’s when Khaled knows he’s found the ‘sweet spot’ for the electrodes, and the patient suddenly is nearly cured of the tremors.

“The circuitry is in disarray, so you sort of shut that circuit down,” he explained. “Sometimes it’s like a radio dial — you need to dial it up or tune it down.”

After a few weeks of healing, a second surgical procedure is completed to make the changes permanent.  The wires are attached to a device implanted in the chest, which is programmed to send electrical impulses to the brain, which block the signals causing the tremors.

Not everyone with essential tremor or Parkinson’s is a candidate for deep brain stimulation, Adam explained. The best candidates have suffered from tremors for a long time and failed to find relief through medications, and the tremors have to be severe enough to impact their daily life in a significant way. “If those conditions are met, we consider surgery to treat them.”

That said, only about 10% of patients with essential tremor are good candidates, and 20% of those with Parkinson’s, though the calculation with Parkinson’s is a bit more complex, requiring at least some positive response to medications and a lack of other conditions, such as dementia, cognitive issues, and severe depression.

About 100,000 patients worldwide have undergone DBS since 1997. Previously, the closest hospitals in the Northeast that offered it are in Boston to the east, Albany, N.Y. to the west, Burlington, Vt. to the north, and New Haven, Conn. to the south. “So we had a big hole in the middle,” Khaled said.

That’s important, Adam noted, because patients with essential tremor or Parkinson’s are often unable to drive and may not have access to transportation, and the procedure is more than the surgical visits; many appointments are necessary in advance of the actual surgery. “Having it here makes it available to a lot of patients who would not have access to it otherwise.”

In Schafer’s case, he had hit the wall with medications; there was nothing else he could try. Despite the risks possible with any surgery, “I was very positive about the whole procedure.”

Still, the risks were minimal, Adam explained. In any brain surgery, the risk of bleeding or stroke is about 2%, and the risk of infection between 3% and 5%. “That’s pretty low. Ninety-five percent of the time, nothing happens. And this does not carry any extra risk compared to other brain surgeries; in fact, there’s less. The level of invasiveness is less. The electrodes are thinner than a spaghetti noodle.”

Science, Not Fiction

Schafer was also, naturally, curious about how long DBS would prove effective. Khaled and Adam explained that early response is always the strongest, and over time — perhaps a decade or more — some of the effect may start wearing off. But the device settings can be fine-tuned to provide better coverage and more control.

Paul Schafer

Paul Schafer speaks to the media about how DBS has allowed him to perform routine tasks that had become impossible.

In a Parkinson’s patient, the surgery’s effectiveness lasts between six and 10 years on average, but that disease’s symptoms are not limited to tremors, and those other symptoms progress regardless of the surgery. “So the management changes a bit,” Khaled said, “but studies show that quality of life with surgery is better than for those without surgery — that is, for the right candidates.”

Schafer knew he was one of those success stories when, right after the electrode began delivering signals to his brain, doctors handed him a flashlight, which he slowly — and accurately — lifted up to his mouth like a glass.

“We had tears in our eyes,” he said. “I wouldn’t have been able to do that with one hand.”

He shuts the system down to sleep — “when I turn it off, it’s a whole different world,” he noted — but restarts it in the morning and feels the tremors subside. He compares the feeling, when the neurostimulator switches on, to the tingle of a Novocaine shot, only throughout his whole body.

Today, he and Kathie say they understood both the potential and the risks — and there was really never any question.

“Of course, it does get a little scary, the idea that Dr. Khaled would drill into my husband’s head, but it needed to be done,” she said. “If there was a chance Paul could have a better quality of life going forward, then we were both very willing to give this a try.”

She’s glad they did, saying they’ve felt “nothing but happiness and wonderful excitement” as Paul rediscovered the ability to perform the tasks of everyday life with no difficulty. “We just keep smiling. It’s not without its risks or challenges, but to us, it was like something out of Star Wars. It was a miracle.”

Paul, now able to live a relatively normal life, plans to start a support group for people with essential tremor. “There are a lot of people out there with what I have,” he said, knowing that he can both share his experiences with those who might qualify for the surgery and at least bring together those who don’t. But he hopes more people fall into the former category than the latter.

“This has changed my life,” he said. “I strongly advocate getting the surgery done if you qualify for it. It makes so much difference.”

Kathie agrees. “He has a wonderful sense of humor, and he’s always been able to accept what happened with him and take it humorously and have everyone relax around him. But I knew it bothered him,” she said.

After letting Khaled, as she put it, drill into her husband’s head, “it’s made him 10 to 15 years younger in his attitude because now he goes out fully, completely aware of the fact that he can do whatever he wants to do, whenever he wants to do it.”

Joseph Bednar can be reached at [email protected]

Business of Aging Sections

Parental Guidance Suggested

Natalie, a Springfield mother

Natalie, a Springfield mother, is one of two women featured on murals for the “You’re the Mom” campaign.

Here’s a whopper of a statistic: according to the Centers for Disease Control and Prevention, about one-third of U.S. kids eat fast food every day.

But they’re not, for the most part, buying it for themselves; parents are making those choices.

That’s the issue that “You’re the Mom,” a new public-health campaign launched by ChildObesity180 at Tufts University, seeks to address. The campaign offers an array of messaging through various media, with one goal: get mothers thinking about the nutritional choices they’re making for their kids, and hopefully make better ones.

“We’re looking to increase the supply of healthier menu options for kids and create more consumer demand for those options,” said Linda Harelick, director of operations and communications at ChildObesity180. “We have engaged the restaurant industry and restaurant brands, and we’ve learned that there have been changes to menu options. Things have gotten healthier in the fast-food setting.”

However, she went on, “parents aren’t always aware of it. They get into the habit of ordering the number 7, or have their kids order a couple items off the dollar menu. Nobody’s studying the menu. We want to make them aware there are healthier options to choose from.”

In short, she explained, “we want to celebrate moms for the people they are and the role they play in families and communities — and give them simple tips.”

Harelick knows the issue is a complicated one, especially in a city with many low-income families living in neighborhoods underserved by stores selling fresh produce and other healthy options — a problem echoed by Kristine Allard, vice president of development for Springfield-based early-education provider Square One.

We want to celebrate moms for the people they are and the role they play in families and communities — and give them simple tips.”

“Particularly here in Springfield, where so many neighborhoods struggle with being part of a food desert, we know it’s not always easy to access good, healthy choices, and some families make fast foods their only option,” Allard told BusinessWest.

For families on a budget — often living near the poverty line — a visit to a fast-food drive-thru is often an exercise in filling up their children quickly at little expense, she went on. “But if we can make changes to what they order — swapping water for soda, ordering apple slices instead of fries, downsizing, not supersizing — that can make a big difference.”

She’s under no illusion that fast food is the best option for kids, “but if we can make small changes — and, in the long term, they make smarter choices — we can help reduce childhood obesity. It just makes sense.”

Square One is among a number of local organizations, including Partners for a Healthier Community and Springfield Food Policy Council, that are partnering with ChildObesity180 on the campaign, which is being piloted in the City of Homes, with plans to roll it out nationally in 2017.

Harelick recognizes that too few parents are immune to the combined pressures of packed schedules and picky kids bombarded with marketing for less-healthy options. But she believes the “You’re the Mom” campaign can make a difference, one choice at a time.

The campaign includes billboards, radio spots, bus advertisements, a heavy social-media presence (its hub is yourethemom.org), and murals by artist Marka27 — at 1072 State St. and 461 Main St. — featuring real Springfield mothers and promoting the message, “you’re the mom; you make decisions about what your kids eat,” Harelick explained.

The issue is nothing new to Partners for a Healthier Community (PHC), which joined several other community organizations eight years ago to launch Live Well Springfield, a movement to promote physical activity in area youth and increase access to healthy foods, a two-pronged approach to slowing a trend that has seen childhood-obesity rates triple nationwide and locally over the past few decades.

“What Tufts is doing is implementing a communications campaign that is very specific to low-income families with children who frequently eat at fast-food restaurants,” said Jessica Collins, PHC president. “If you have to eat at McDonald’s, make a healthier choice for your kid. Don’t buy soda; get water or milk. Give up the fries and choose apple slices. It’s another strategy to educate parents.”

Menu of Programs

Since its inception, Harelick explained, Child Obesity180 has brought in public-health advocates, industry and government leaders, and other nonprofits to design, pilot, evaluate, and scale initiatives intended to reverse the trend of childhood obesity — a full 180 degrees, in other words — within one generation’s time.

“We have very aggressive goals,” she admitted.

To get there, the organization has taken a multi-pronged approach. Among its initiatives:

• Its Active Schools Acceleration Project aims to increase physical activity in U.S. schools by identifying innovative solutions and giving schools the tools and resources needed to replicate proven models. For example, the New Balance Foundation Billion Mile Race has challenged students to walk and run 1 billion miles. “Five thousand-plus schools are participating in the campaign, driving excitement and interest in walking and running programs,” Harelick said.

• The Healthy Kids Out of School initiative works with afterschool enrichment organizations, like Boy Scouts, Girl Scouts, 4H, and youth sports leagues, to promote three principles: drink right, move more, and snack smart.

“Kids are eating more junk food than they need and not moving as much as they should, even in youth sports,” she noted. “We found if we communicated these three simple principles, we could have an impact. It’s been very well-received by the CEOs of these organizations.

“What we have learned is, we have to tie into the organizations’ values and practices,” she went on. “Scouts are looking to develop future leaders, and to be a future leader, you have to develop a healthy lifestyle. We developed a special healthy-habits patch for Boy Scouts and Girl Scouts, and developed a short online training for sports coaches.”

• The Restaurant Initiative, which is where “You’re the Mom” fits in, takes a three-pronged approach to reduce excess calorie consumption when children eat at restaurants: Increase consumer demand for healthier children’s meals, inform restaurant-industry leaders of the positive outcomes of increasing healthy menu offerings, and continue to conduct and disseminate original research.

• Another effort, the Breakfast Initiative — which promoted a healthy school breakfast and evaluated its impact on several key measures for children, including obesity prevention — completed its work in 2014.

That’s an area Square One knows something about, said Allard, who noted that many of ChildObesity180’s programs fit well into Square One’s mission of promoting well-being in children — not just academically, but physically and emotionally as well.

Linda Harelick

Linda Harelick says restaurant menus have gotten healthier and nutrition labeling has improved, but parents aren’t always aware of these changes.

“We know that kids who are well-nourished do well in school, so helping in a campaign like this, helping moms make healthy choices for their kids, is very much in alignment with our mission,” she explained. “Teaching kids to read, write, and be ready for kindergarten and academic success are very important, but we know there are so many more pieces than simply handing them a book.

“For many kids in our program,” she went on, “we provide two meals a day — breakfast, lunch, and two snacks — so we know they’re getting those meals with us, and we make sure they’re balanced and nutritious. But when they go home, they don’t always have those types of options. Access is the issue here, and budget is a challenge.”

Likewise, Partners for a Healthier Community, through the Live Well Springfield collective, has been trying to enhance school nutrition, from the preschool sector on up; make higher-quality foods, especially fruits and vegetables, more available in the city’s neighborhoods; and enhance urban agriculture and community gardens.

Live Well Springfield has also partnered with the city and the Pioneer Valley Planning Commission on improving area riverwalks, and has a hand in the city’s Complete Streets program, which is putting more sidewalks and bike lanes on streets. “People have to move around, basically,” Collins said. “That’s a national best practice cities are trying to do.”

Food for Thought

Harelick welcomes the partnerships with organizations like PHC and Square One. “We call ourselves a multi-sector organization,” she told BusinessWest. “We believe childhood obesity is an issue that can only be solved if everyone participates.”

In the case of “You’re the Mom,” which admittedly takes a narrow focus, “we saw an opportunity to address the issue of kids consuming excess calories in restaurants and at the same time improve the nutritional quality of selected meals,” said Christina Economos, director of ChildObesity180. “Moms have an enormous amount of influence on their kids, but sometimes they don’t feel that way. We want to support them and remind them that making small changes can add up to a meaningful difference in their children’s health.”

Harelick has significant experience in several sectors that are part of ChildObesity180. After an early career as a registered dietitian, practicing in clinical and research settings at Massachusetts General Hospital and Brigham & Women’s Hospital, she spent 17 years at Kraft Foods, overseeing strategic planning and marketing for iconic brands such as Maxwell House coffee and Post cereal. Upon leaving Kraft in 2008, she returned to academia to earn a doctorate in public health policy and management.

Having taken so many different views of the nutrition issue, Harelick is optimistic that her current organization’s goal — a full ‘180’ on childhood obesity — is within reach.

“We really believe that,” she said. “When we look at the problem of obesity, it seems very complex, but very interconnected. If you can influence one aspect of a child’s life, it has a wave effect on other aspects. And the more kids hear these messages, the greater the influence — it’s an echo effect.”

Beyond that, she said, “if we can impact culture in terms of the restaurant industry, convince them to offer lower-calorie foods, more nutritional quality, they’ll become societal norms for kids. It will become the norm to drink water on the basketball court, baseball field, or restaurant.”

Leaders at Square One — which, beyond its emphasis on healthy meals, offers an after-school physical fitness program called LAUNCH — say the work of ChildObesity180, and its new campaign, are effective complements to what’s already happening locally. “Our LAUNCH program is a health and wellness program for kids,” Allard said, “teaching them that fitness is fun, and that healthy eating can be fun and delicious.”

Just as Square One moves beyond talking about nutrition and fitness and actually provides opportunities for both, so Partners for a Healthier Community continues working toward greater access to healthy foods in the so-called ‘food deserts’ that tend to plague cities.

“The campaign bolsters work we’ve been doing locally, which is create access for families,” Collins said. “We have to start somewhere. It has to be both educating families to make the right decisions and also providing them access; if you just educate people, they’ll turn around and say, ‘but there’s no place to buy something healthy.’ That’s why the other strategies are so critical.”

Still, Harelick said, change begins with education, and she’s confident “You’re the Mom” will prove impactful enough to become a nationwide call.

“By delivering these messages and then reinforcing these practices at home,” she said, “we can really have a snowball effect.”

Joseph Bednar can be reached at [email protected]

Business of Aging Sections

A Sense of Motion

Dr. M. Zubair Kareem

Dr. M. Zubair Kareem says BPPV can be managed, but it is a permanent condition, and symptoms can reoccur at any time.

Some 90 million Americans will experience a sudden onset of dizziness at least once, and about 50% of those may have a condition called benign paroxysmal positional vertigo. While it’s a permanent malfunction, symptoms can be treated and managed, which is why doctors say it’s important to educate patients about the condition.

About four years ago, Jeanne Tardit got up one night and suddenly became so dizzy, she couldn’t make it to the bathroom.

“It was really scary. Everything was spinning, and I felt as if I had no control over my body,” the 86-year-old recalled. “It was something I couldn’t live with.”

Tardit numbers among an estimated 90 million Americans who will experience dizziness at least once in their lifetime. It can be frightening, and the causes can vary, so it’s important to get an accurate diagnosis.

About 50% of people, including Tardit, who experience a sudden onset of dizziness have a condition called benign paroxysmal positional vertigo, referred to as BPPV or BPV.

Dr. M. Zubair Kareem, vascular neurologist and medical director of Holyoke Medical Center’s award-winning stroke program, said the symptoms can be treated and managed, but once BPPV occurs, it can return, because it is a permanent mechanical malfunction of a part of the internal ear.

It is diagnosed by taking a good history and examining the patient; tests including a CT scan or MRI of the brain are not required. BVVP is not life-threatening or something that can be resolved with surgery or medication. However, many patients get quite nervous when an attack occurs, and sometimes require an anti-anxiety medicine at least for a short period of time.

“It’s important to educate people about what BPPV is and how it can be managed,” said Kareem, adding that, although most people associate only hearing with the ear, the organ also serves as sensor for the coordination system of the body. Since the head weighs 10 to15 pounds, people could fall forward due to the change in the center of gravity when the head bends forward, and the brain makes appropriate adjustments, which include causing the back of the neck muscles to stiffen. The inner ear is part of the body’s balance system and helps with that adjustment.

BPPV results in a false sense of motion, or vertigo, due to inaccurate signals sent to the brain, which result in dizziness or spinning that can be accompanied by nausea, loss of balance, and blurry vision due to rapid jerking movement of the eyes.

It does not make a person confused or cause any paralysis, disorientation, pain, or speech or language problem, but some patients experience significant anxiety, which can be disabling. Symptoms may vary in each person, and they are typically brought on by changing the position of the body or head position, and often occur when a person looks up, bends down, rolls over, or gets out of bed.

About 2% to 4% of people experience BPPV in their lifetime, and the Mayo Clinic reports it is the cause of approximately 50% of dizziness in the elderly population.

Caitlin Eckhoff

Caitlin Eckhoff demonstrates one of four sequential head positions used in the Epley maneuver, which was designed to reduce vertigo.

Although it can be extremely uncomfortable and disrupt a person’s work and social life, the problem is usually treatable and can be helped with specific, easy-to-learn exercises that patients do whenever a dizzy spell begins. Kareem, along with other doctors and physical therapists trained in vestibular rehabilation therapy, often teach their patients to do these exercises.

In addition, Kareem employs something called the Epley maneuver, which was developed by and named after Dr. John Epley in 1980 and consists of a series of carefully orchestrated head movements. However, for the Epley maneuver to be successful, it is important to have a precise diagnosis and know the exact location of the malfunction.

Kareem does not recommend this maneuver to patients of advanced age or with neck arthritis. Patients unable to do the day-to-day exercises themselves may benefit from sessions with a therapist trained to administer vestibular therapy and the Epley maneuver, which can help keep vertigo from reoccurring or at least minimize the symptoms.

Mechanical Problem

Kareem says understanding BPPV involves a brief lesson in physics, and he frequently provides one to his patients using a detailed diagram.

“Basically, we have sensors in each ear that can detect our head’s movement or position,” he explained. “It’s important for the brain to know where the head is in space.”

Each ear has three sensors in the shape of tiny, semicircular canals that are filled with a jelly-like substance. One end of each tube is dilated, and its floor is lined with tiny hair cells topped by thousands of minuscule calcium carbonate crystals that are suspended in the gel, like a cloud hovering over them. When a person moves his head to the side, the weight of the crystals creates a ripple in the jelly, which causes the hair cells to move and initiates nerve impulses that are passed along the vestibular nerve to the brain to tell it the head is moving. When the brain receives this signal, it sends commands to the eyes, muscles, and the rest of the body that allow the person to maintain balance.

The system works well when people are young, unless there is a trauma to the head, but once people reach age 50, a significant number develop a problem because some of the tiny crystals break off, become loose, and settle on the floor of one of the ear canals. If that happens and the person moves their head in a certain way, the floating crystals send a false signal to the brain, which it reads as motion even though there is none. Normal signals transmitted by the moving hair follicles are subtle, but Kareem says signals from loose crystals are very strong, and the result can be a sudden onset of severe dizziness.

“It usually happens when a person gets up in the middle of the night or upon waking,” he noted, adding that BPPV typically occurs in one canal of either ear, although in some cases it can occur in both ears.

The brain is able to counter the false signal within seconds or a minute, but the vertigo, which can be severe enough to make the person feel like they are about to fall, can cause acute anxiety that can continue long after the spinning feeling stops.

Obtaining an accurate diagnosis is critical because dizziness can be caused by a number of other things. Kareem says a diagnosis of BPPV involves taking the patient’s history and administering a test called the Dix-Hallpike maneuver, which involves moving the head in a position that causes vertigo. This test can help localize the problem, but it may not be positive in every patient with BPPV.

Although no one wants to be diagnosed with a condition that can’t be cured, the good news is that the exercise, combined with the Epley maneuver, can move the loose particles into a part of the ear where they stop causing symptoms, which resolves the problem, at least temporarily, for about 90% of people.

“Once people understand the problem and know that it is not a serious, life-threatening illness, they feel comfortable managing it. With the daily exercise regimen, they feel significantly better,” said Kareem.

Tardif’s physician sent her to Attain Therapy and Fitness in Wilbraham, where she received vestibular rehabilitation. Her vertigo went away after a few sessions, and when she had another dizzy spell 18 months ago, additional treatments resolved the problem again.

Quality of Life

Lisa Blain, a certified vestibular therapist at Weldon Rehabilitation Hospital in Springfield, says many people suffer with BPPV for years because they don’t know it can be remedied.

Lisa Blain

Lisa Blain says tiny floating particles in the ear canal can lead to sudden bouts of dizziness when their motion is misinterpreted by the brain.

“The people I see have often been treated with medication or tried other things that didn’t work, and restrict their activity level because they fear moving too much will cause them to become dizzy,” she told BusinessWest.

“BPPV can be aggravating, irritating, and frightening, and a lot of people are unaware there is a treatment for it that works, but it’s important to have it correctly diagnosed,” she continued, mirroring Kareem’s statement and adding that different types of vestibular rehabilitation can be used for vertigo problems that result from concussions, stroke, or following long periods of immobilization.

She explained that the vestibular system, which is responsible for maintaining balance, consists of three parts: the central nervous system, the inner ear, and vision, which all need to communicate and work together seamlessly.

Blain advises people being treated for BPPV to bring someone with them and not plan on returning to work after a treatment because the Epley maneuver is designed to bring on dizziness, and the person may feel off balance after a session, even though the induced vertigo quickly passes. “It works well, but it can be uncomfortable in the short term,” she noted.

Caitlin Eckhoff, a physical therapist from Attain Therapy and Fitness who treated Tardif and specializes in vestibular rehabilitation, agrees, and says people often become anxious about the treatment.

She said it’s critically important for the therapist to know which ear and which canal is affected. “But 80% to 90% of patients have their symptoms resolved within two to six visits.”

Researchers do not know what causes the crystals in the ear to break off, and it can be difficult for people with BPPV to pinpoint what movements cause the onset of dizziness.

“For some, just going to the grocery store and moving their head around to find something on a shelf can cause a problem,” Eckhoff said, adding that doing exercises at home speeds the recovery process. “It’s a difficult issue for people, and a lot of people think they have to live with it. But it’s very rewarding to treat, as it’s the closest to an instant fix that I can offer someone.”

Indeed, in a day and age where people want problems resolved as quickly as possible, exercises and vestibular therapy can seemingly work small miracles.

Business of Aging Sections

Giving a Lift to Those Who Served

Jesus Pereira


Jesus Pereira founded Vet Air to enable veterans to “fly first class” to appointments at VA hospitals.

Dave Shields remembers that first flight being more than a little bumpy. And the plane’s cabin was even smaller than he’d imagined, and took a while to get used to.

Such sentiments, clearly not meant to convey dissatisfaction or disappointment, were to be expected, though. After all, while Shields was certainly no stranger to flying, his 21 years in the Air Force were mostly spent in and around the giant C-130 Hercules transport plane. In fact, the majority of his time serving in Vietnam was spent at Tan Son Nhut Air Base, just outside Saigon, training South Vietnamese crews in how to maintain the workhorse aircraft, which has now been in continuous use by the Air Force for more than 60 years.

It was his time in the service, which also included a lengthy stint at what is now Westover Air Reserve Base in Chicopee, that explains why Shields found himself in that tiny Cessna 172 just over a year ago. Well, that’s where the story starts.

As a veteran, Shields is entitled to receive care for service-related medical issues at the many Veterans Administration (VA) hospitals around the country (such as the one in Leeds) and healthcare providers affiliated with them, such as Yale-New Haven Hospital.

Diagnosed with cancer in his ear, Shields would eventually receive care at both the VA center in White River Junction, Vt., and Yale-New Haven. Getting to either place from his home in Greenfield, while certainly doable, was logistically difficult and quite time-consuming.

Or not, as things turned out, because of a unique nonprofit organization, based in Holyoke, that had just taken flight, quite literally. Called Vet Air, it recruits volunteer pilots to ferry vets like Shields to VA facilities along the Northeast corridor.

Jesus Pereira, founder, a veteran himself (Army Guard, with a 10-month deployment to Kuwait on his résumé), and one of those pilots, explains its basic mission and the many rewards for those who make it happen.

“These people served our country,” he explained. “This is something we can do for them to make things easier and less stressful for them and treat them like first-class, first-rate flyers. I love doing it, and all the pilots feel the same way.”

Pereira, who learned to fly at a tiny airfield in Turners Falls a dozen years ago, said that, to date, Vet Air is averaging maybe two or three flights per month, and has arranged maybe 60 in all. He has piloted roughly a quarter of them, and has taken Shields to several of his appointments.

He noted that, while the pilots are the ones who actually transport veterans to their respective destinations, it takes, well, an army of supporters, including area residents who support its various fund-raisers, to enable the agency to carry out its mission.

For this issue, BusinessWest took to the air with Pereira to gain some insight into Vet Air and its work, which is uplifting, in every sense of that word.

Plane Speaking

To call the flight from Northampton Airport to the even smaller field in Turner Falls a ‘short hop’ would be to greatly understate matters.

It’s 10 minutes door to door, or runway apron to runway apron, as the case may be. But Pereira, who flew BusinessWest to that small town just east of Greenfield to meet Shields — he was already doing some flying that Saturday afternoon and volunteered to do a little more — made the most of that time as he talked about Vet Air, its mission, and the challenges to meeting it.

Indeed, in between frequent bits of routine discourse with officials at both airports during the flights out and back, he explained that this agency is off to what all of those involved consider a very solid start.

Indeed, while only in business, if you will, for 18 months or so, Vet Air has already helped script a number of poignant success stories.

Jesus Pereira, left, with frequent passenger Dave Shields.

Jesus Pereira, left, with frequent passenger Dave Shields.

For example, there’s ‘Karen,’ an Army interrogator, who was severely injured when a prisoner she was questioning struck her with his handcuffs, breaking her jaw and causing damage to her eyes as well. Vet Air flew her to an appointment at a balance center, where she received specialized care in order to help her with her vision and balance.

Then, there’s Ben Bauman, a Marine from the Bay State who hadn’t been home to see his family in more than two years for personal and financial reasons; Vet Air took him on the last leg of an emotional journey home last Christmas.

To write such stories, Vet Air relies on volunteer pilots, said Pereira, noting that there is a small cadre of them who have made most of the flights to date, usually to the VA facilities in White River Junction and West Haven, Conn., although there have been other destinations as well.

There are three or four Western Mass. area pilots who take part, as well as a colorful individual from Maine who flies a pontoon-equipped plane nicknamed ‘the Moose,’ and handles a number of assignments in Northern New England.

“A lot of them do it because they have the time and means to just go flying,” he said. “But mostly they do it because they recognize the importance of what we’re doing and want to be part if it.”

In many cases, those being transported are veterans in the process of trying to determine if health matters are, indeed, service-related, he explained, adding that this process usually requires several visits to VA doctors, which explains why most Vet Air clients have used the service on multiple occasions.

Many of the servicemen and women who have found Vet Air are veterans of Desert Storm or post-9/11 campaigns in Iraq and Afghanistan, said Pereira, but some, like Shields, served in Vietnam.

Clients simply have to get to the airport closest to where they live, and Vet Air essentially takes it (or them, to be more precise) from there, he told BusinessWest, adding that it arranges ground transportation from the destination airport to the provider in question — usually in the form of a vehicle loaned by one of the airport’s fixed-base operators (FBOs).

There are certainly other means to take such vets to appointments at various providers, Pereira went on, adding that shuttles run between the VA hospitals to take individuals for specialized care at facilities where such services are provided.

“But taking the shuttle can often make a half-hour appointment take all or most of the day,” he explained, noting that a shuttle will make at least a few stops along its route to pick up additional veterans bound for the same destination. And it won’t return home until all those aboard are done with their respective visits.

A flight aboard the Cessna he usually pilots — it belongs to a friend, a flight instructor who lets him take it when he needs it  — can cut the trip down to an hour or two.

“We took a woman from White River Junction’s VA who had to go to the Traumatic Brain Injury Center on Long Island,” he noted, citing an example of Vet Air’s primary reason for being. “To drive from Northern Vermont to Long Island is quite a trip. Her appointment was six hours long, and to drive home after that — I don’t think most people could that, so now this becomes an overnight, with all those additional expenses.

“We flew her there and back the same day,” he went on, “and it cost them nothing.”

Soar Subject

This ability to chop several hours off a potentially day-killing visit caught the attention of Shields, whose first involvement with Vet Air centered on bringing it to the attention of other veterans, not securing a ride himself.

“I saw a quick news story about it on one of the local stations,” he explained, adding that his first reaction was to help create awareness. He did so by helping to secure the agency a presence at the annual camping and outdoor show at the Big E in the spring of 2015.

A few months later, though, Shields was diagnosed with cancer and had need for Vet Air himself.

He said there were other alternatives for getting him to the facilities where he was treated, but they involved far more time and logistics.

“This was the easiest way,” he explained. “The [VA] shuttle goes to West Haven, but it doesn’t go to Yale; with Vet Air, there was a courtesy car at the airport that took me right there. It’s a great service.”

Shields hasn’t had to dial Vet Air’s number in several months now, but the nonprofit isn’t far from his thoughts. In fact, he’s become an ardent supporter who has referred a number of veterans to the agency.

And it needs such assistance.

Indeed, as Pereira noted, it takes the help of many people to get that plane in the air and then get the client to the VA facility, said Vet Air’s founder, adding that, while the flyer’s time is donated, there are flight-related expenses — roughly $80 to $120 per hour in the air, depending on the plane used — that have to be covered.

There are other costs as well, he said, listing everything from the landing fees charged by some airports to the modest marketing efforts to bring attention to the agency.

Fortunately, Vet Air’s mission resonates with many individuals and businesses, he went on, citing, as just one example, the FBOs that will often donate a courtesy car, like the one Shields rode in, to get a veteran from the airport to a healthcare provider.

“Once they see what we’re doing and what the mission is, they want to be part of it,” he explained, adding that, moving forward, Vet Air needs more people to become part of its story.

The agency stages fund-raising events such as the recent Mother’s Day Bazaar at the Moose Lodge in Chicopee and a similar gathering coming up for Father’s Day, said Pereira, and also sells T-shirts bearing its logo on its website.

As awareness of the agency grows and need for its services escalates, fund-raising will become an ever-more-important focus, he explained, noting that those who want more information on the agency or wish to help can visit www.vetair.org.

Landing Lights

Like the plane Pereira was flying, Vet Air is certainly small in size as nonprofit agencies go, with a budget that extends to only five figures.

But it is having a big impact on the lives it has entered. That means everyone from the vets sitting in the back seat of that Cessna to the individual flying the Moose; from the families of those veterans to the individuals and related nonprofits who have helped make these flights possible.

Thanks to Pereira’s vision and the help of countless contributors, veterans in need of care are now flying first-class — even if the plane’s cabin is only four feet wide.

George O’Brien can be reached at [email protected]