Finders, Keepers

When 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.”

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 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.

Difficult Decisions

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, 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.

Shock to the System

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 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 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]

A Sense of Motion

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 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 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.