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

Business of Aging

Business of Aging Sections

Passing Interest

It’s hardly news that America’s Internet and smartphone culture has transformed the way people live.

But not everyone knows they’re also changing the way people die — or, more specifically, how they plan for death and the often-difficult process of transferring key information, end-of-life wishes, and even treasured memories to their loved ones.

cakeTake Cake, for instance. This free online platform helps people determine and share their end-of-life wishes. Similar to the popular dating app Tinder, Cake outlines and organizes these wishes by presenting users with a number of questions on which they can swipe yes or no. Based on the answers, the app creates a profile divided into four categories — legacy, health, legal/financial, and funeral — each of them accompanied by action steps one could take to carry out those wishes.

“Each and every one of us should have a say in how we live our lives, from beginning to end (and even beyond),” the Boston-based Cake creators note. “Gift your loved ones with the information of what you would want, and how you want to be remembered.”

For many people, they note, thinking about the end of life isn’t a morbid activity, but can be a motivating factor to live life to the fullest. “It can put things in perspective and give you and your loved ones more peace of mind. It is a very considerate act to let your loved ones know what you would want. You can go at your own pace, and plan as much as feels right to you.”

Even folks with a will can benefit from such a service, the company notes, because many aspects of end-of-life planning — right down to the food one would want served at one’s funeral — are typically not be covered in that document.

“Additionally, medical preferences can be difficult to think through,” they go on. “Cake helps uncover your values so you can be clearer on your preferences, and so that your loved ones can be clear on them too.”

Plenty of Options

But Cake is far from the only player on this unique scene, which mixes some time-honored concepts with a decidedly 21st-century twist. Here are some of the others.

everplansEverplans, in some ways similar to Cake, is a digital vault for a person’s end-of-life plans, described as “a complete archive of everything your loved ones will need should something happen to you.” The app allows users to securely store wills, passwords, funeral wishes, and more in a shareable vault. Documents may include anything from wills, trusts, and insurance policies to bill-payment schedules, advance directives and do-not-rescuscitate orders, as well as final wishes and funeral preferences.

Users begin by taking a short assessment survey to see how much planning they’ve already done, how much else they need to do. Based on that information, the service, which costs $75 per year, creates a to-do checklist and helps prioritize that list. The user then assigns specific ‘deputies’ for the plan, so loved ones can find everything neatly in one place.

mydirectivesMore of an emergency-care tool than an strictly an end-of-life plan, MyDirectives allows people to speak for themselves — digitally. Users populate their ‘medical ID’ with date such as their health information and end-of-life plans. This allows doctors to have access to this information right from a patient’s iPhone lock screen.

The four basic parts to this free service are ‘My Decisions,’ which outlines care preferences, values, and treatment goals; ‘My Thoughts,’ which uses messages, video posts, music, and photos to help caregivers know more about the patient; ‘My Healthcare Agents,’ which outlines who represents the patient during a health crisis when he or she can’t communicate; and ‘My Circle,’ which keeps key contact information in one place.

principled-heartThe creator of Principled Heart, a certified financial planner, said his goal was to help answer a common question: where do we keep all our planning documents and information — and how will my loved ones know what to do? His site encourages people to keep only what is necessary, including passwords (or instructions on where to find them) for financial accounts, social media, and other accounts. Other features include instructions for pet care, key contacts, and space to upload up to 60 documents.

Three specified people are required to validate the account owner’s death, and then the site, which costs $45 a year for up to one gigabyte of storage, will provide access to all the information stored inside.

afterstepsAfterSteps, created by a Harvard Business School student, also requires the names of three verifiers, who will be notified in the event of the user’s death and will get access to all information stored on the site, which includes wills and other legal forms, passwords and instructions for digital accounts, funeral-arrangement wishes, and other data. It costs $60 a year or $299 for life.

Most services of this sort are recent developments, but a few have a longer history. DocuBank was created in 1993 as a registry to give members 24-hour access to their advance directives. More than 200,000 members have used the service ($55 per year) since then, and DocuBank has added new features, including an online vault called SAFE that provides a place for members to store files. The site’s latest ‘Digital Executor’ feature allows members to designate one person who will be able to access all of their online files once they’ve presented proof of the member’s death or permanent incapacity.

Celebrating Life After Death

Many end-of-life planning apps are about more than financial and funeral arrangements; however, crossing over into the realm of preserving history and sharing memories.

safebeyondFor example, SafeBeyond ($48 to $96 per year) defines itself as a ‘legacy-management service.’ As such, this app allows users to keep record of their life story in the form of meaningful digital content. SafeBeyond’s distribution capabilities then allow for the future delivery of this content in the form of personalized messages accessible by specific loved ones – almost like emotional life insurance through which one can be remembered.

“Everyone’s life story is unique and constantly affected by change,” the creators write. “Our platform provides an innovative online and mobile-app solution for the easy and secure management of your life story and your meaningful digital content, with enhanced distribution capabilities for the future delivery of personalized messages and digital assets. You decide when, where, and with whom your messages and other digital assets will be shared.”

The app allows people to record text, audio, and video messages throughout their life and store them in a heavily encrypted ‘digital vault.’ Then, SafeBeyond will send messages on behalf of its clients for up to 25 years after they die. Many users choose to schedule those messages on birthdays or on the anniversary of their passing. After the user dies, their recipients are e-mailed a notification telling them to download the app so that they can, one day, receive a message from the grave.

eterniamMeanwhile, Eterniam provides a free, secure online locker for one’s personal digital assets, including photos, videos, and other documents, and then releases them after the user’s death to whomever he or she specifies. Rather than focus on death, the app encourages users to ‘celebrate life,’ and to capture moments and upload them to the cloud.

Bcelebrated ($20 yer year, $100 for a lifetime membership) enables members to create a multi-media website that will become their autobiographical memorial site when the time comes. They may share their story in words, images, and audio; write password-protected private messages for loved ones; and essentially leave a permanent site where friends and family can celebrate a life.

Members create password-protected private pages for loved ones, record their last wishes, and assign a charity to receive donations on their behalf. The service also sends automated notification e-mails at the time of a member’s death and provides a list of numbers for those who need to be called.

Finally, on a different, slightly more downbeat note, Life Countdown is a free app that asks users to pick the date they think they’ll live to, then sends notifications at random intervals about how much time they theoretically have left. The app, its creators say, has a philosophical bent: “to cultivate the contemplation of death.”

Some might feel that’s a worthy-enough goal. For those who want to do more than contemplate, but instead do some real planning about what they’ll leave behind, today’s online culture offers plenty of options.

Business of Aging Sections

Aging in Place

Suzanne McElroy

Suzanne McElroy says it’s important to match a family with the right caregiver to ensure there’s a comfort level on both sides.

As the Baby Boom generation continues to advance into the golden years, the demand for home care continues to rise, as families embrace a model that keeps seniors stay in their homes while helping them with everyday needs. That means the need for qualified caregivers is rising, too — and it’s not always easy to find them.

Home care is a far cry from, say, plumbing, Suzanne McElroy says. Sure, both careers require specialized skills, but not a lot of plumbers are turned away because they just don’t … feel right.

“I’ve often tried to compare this to other industries, and you can’t,” said McElroy, owner of Home Instead Senior Care in Springfield. “A plumber can come in and fix your pipes, and you don’t have to worry about what they look like or smell like, or how they talk; they just come in and fix your pipes. But I’ve had caregivers rejected for silly things, like a tattoo in the wrong place, or things I’m not legally able to consider, like age, race, or religion.”

Paul Hillsburg, owner and president of Amada Senior Care in West Springfield — who left financial services for a career in this fast-growing field — has observed similar difficulties matching caregivers to families, starting with his own life.

“I saw the challenges we had with my mom in finding qualified caregivers,” he said, noting that she utilized home care in the early stages of her dementia. “My dad fired the first seven. I realized that was an important part of providing care in the home — the personalities need to match. So we take a personalized care approach.”

After all, McElroy said, she has to consider things from the family’s perspective, and why they need a certain comfort level with someone who will be spending lots of time in the home. “It’s not like fixing pipes and leaving; they’re going to be staying and sitting with your mom.”

SEE: List of Home Care Options

The problem, both she and Hillsburg, noted, is that the challenge of making those matches, plus the surge of Baby Boomers into their senior years — around 10,000 are turning 65 every day, on average — are ratcheting up the pressure on home-care agencies to find and retain talent.

“More and more people want to stay at home, and hospitals are actually suggesting home care during discharge,” Hillsburg said. “People want to age in place, to be at home, where their family can come and visit, and where they feel more comfortable.”

Home-care services run the gamut from companionship and household help to assistance with ambulation and medical needs, and the popularity of this option continues to grow, creating worries that demand will eventually outstrip the number of qualified caregivers. That means competition among agencies, which are bringing myriad tools to bear with the goal of helping seniors live as independently as possible.

The Right Choice?

McElroy, who has lectured many times on the topic of choosing a senior housing plan, outlined several considerations that families must discuss, including:

• Physical needs, including activities of daily living — from shopping, cleaning, cooking, and pet care to more intensive help with bathing, ambulating, and eating — and medical needs, which could arise from a sudden condition, such as a heart attack or stroke, or a more gradual condition that slowly needs more care, such as Alzheimer’s disease.

• Home maintenance. “If you’re living alone, your current home may become too difficult or too expensive to maintain,” she noted. “You may have health problems that make it hard to manage tasks such as housework and yard maintenance that you once took for granted.”

• Social and emotional needs. As people age, their social networks may change, with family and long-time friends no longer close by, and neighbors moving away or passing on. At the same time, they may no longer be able to drive and have no access to public transportation. The desire to be around a community of friends and take part in social activities may be paramount.

• Financial needs. “Modifying your home and long-term care can both be expensive, so balancing the care you need with where you want to live requires careful evaluation of your budget.”

The answers to these questions may very well point to assisted living as a better option than home care, but others may be able to age in place, accessing home-care services to better manage activities of daily living, while still enjoying the comfort and security of a residence they have lived in for years or decades.

Aging in place is a less effective senior-housing option once your mobility is limited. Being unable to leave your home frequently and socialize with others can lead to isolation, loneliness, and depression. So, even if you select to age in place today, it’s important to have a plan for the future when your needs may change and staying at home may no longer be the best option.”

“You may also be able to make home repairs or modifications to make your life easier and safer, such as installing a wheelchair ramp, bathtub railings, or emergency response system,” McElroy said.

Home care is a good option, then, for people who can access transportation; live in a safe neighborhood and in a home that can be modified to reflect changing physical needs; don’t have an overwhelming burden of home or yard maintenance; have physical or medical needs that don’t require a high or specialized level of care; and, perhaps most important, have a network of nearby family, friends, or neighbors.

“Aging in place is a less effective senior-housing option once your mobility is limited,” she added. “Being unable to leave your home frequently and socialize with others can lead to isolation, loneliness, and depression. So, even if you select to age in place today, it’s important to have a plan for the future when your needs may change and staying at home may no longer be the best option.”

Individuals and families who do choose home care, Hillsburg said, still have to overcome that initial reluctance to invite a stranger into their home.

“When I meet clients, I do my own personal assessment, trying to link their personalities with the personality of the caregiver,” he explained. “And when the caregiver goes to the family’s home for the first time, I meet them there and introduce them to the family, make sure there’s a comfort level there.”

Hillsburg said his company, part of a national network of Amada franchises, also performs extensive background screening — credit history, DMV records, criminal records, sex-offender registries — to ensure client safety, and also assists people trying to figure out how to pay for care, whether that’s a long-term care policy, veterans’ benefits, reverse mortgages, even life-insurance policies that can be sold back, swapping death benefits for current care.

Paul Hillsburg

Paul Hillsburg says the biggest challenge for home-care companies is finding and retaining quality caregivers in an increasingly competitive arena.

But to build a team of reliable caregivers at a time when the competition for talent is becoming fiercer by the month, a company has to make sure they’re paid well and happy in their jobs, he told BusinessWest.

“It’s a very, very competitive field. The biggest challenge going forward is going to be finding and retaining good, quality caregivers. That’s why we provide 20 hours of free training, or more, if they want it, to all our caregivers, and we pay them while they’re in that training,” he explained. “They want to be treated like a person and respected.”

Cost is still a major consideration for families, McElroy said, especially when agencies have to pay their caregivers competitively. While lower-income services are available through Medicaid and MassHealth, home care still isn’t within reach of everyone who needs it. “That’s only going to change in importance when enough people feel this pain, or the right people feel this pain.”

High-tech, High-touch

At the same time, Hillsburg said, home care continues to absorb technological advances that make it easier for families and companies to assess results, from an online portal Amada offers called Transparent — which allows families to see which duties a caregiver has performed — to a GPS system that lets the company know whether caregivers show up at the right place and time.

Meanwhile, the company’s Discharge Admissions Reduction Team (DART) works with care managers to negotiate transitions between hospital and home care with the goal of reducing hospital readmissions.

“The need for care is going to continue to increase for the next 30 years before we hit the end of the Baby Boom generation,” Hillsburg said by way of explaining the ways companies are honing their services to meet the needs of this population.

Still, at the end of the day, McElroy said, families are most concerned with whether the caregiver increased their loved one’s quality of life. She recalled one client who requested someone versed in quilting, to help her thread needles and otherwise allow her to continue enjoying her favorite pastime.

“That’s the heart of what we’re doing. Yes, we’re helping them out of bed and into the shower, but if we can help someone live the live they want, that’s what’s driving the spirit of our business,” she explained. “It’s hospitality; it’s customer service. You have to love what you’re doing. You have to love the mission and love the work.”

After all, “whenever I have someone raving about a caregiver, it’s not because they came in for a few hours and got the job done; it’s because they made a difference in someone’s life,” McElroy said. “They can be doing the grossest thing ever, but when they leave, if the person takes their hand and says, ‘I don’t know what I would do without you,’ they’re flying. They can’t wait to go back.”

Joseph Bednar can be reached at [email protected]

Business of Aging Sections

A Matter of Time

Dr. Rajiv Padmanabhan

Dr. Rajiv Padmanabhan says the initial 911 call triggers a chain of events at the hospital that ensures everyone is in place to treat a stroke quickly when the patient arrives.

Everyone knows women who are fiercely independent and used to doing everything for themselves. Getting to the hospital after a stroke — or, more likely, getting a friend or loved one there — shouldn’t fall into that category.

“We stress to stroke patients that we want them to come to the hospital quickly,” said Patti Henault, coordinator of Stroke Programs at Mercy Medical Center. “Every minute someone is having a large stroke is a minute that is wasted, and a little part of your brain is going to be damaged. Basically, the quicker you get treatment, the better the outcome usually is. But to arrive as fast as possible, you should call EMS. People think an ambulance takes longer, but the thing is, EMS lets us know they’re coming, so we can get everything in place. That helps a lot.”

Once the patient calls 911, she explained, the ambulance crew is in contact with the hospital, so doctors and CT-scan technicians are in place the moment of arrival. “The first diagnostic test for stroke is do a CT scan, so we know what’s going on inside the brain,” Henault said. “It’s a quick test, but the faster we can do it, the faster we can know whether it’s something we can treat.”

Dr. Rajiv Padmanabhan, a neurologist with Baystate Health, said the system has an algorithm — a chain of command, if you will — for stroke response, and it begins with the EMS team.

“When they call into the hospital, we are on standby, with the CT scan and neurology team and the emergency room; we’re all aware that a patient with a stroke is coming on the ambulance,” he told BusinessWest. “The 911 call triggers the whole thing. They go straight to the CT scan, and we also look at pictures of the arteries.

“The most important lesson is to get them treated fast,” he went on. “Every minute, 1.9 million neurons are lost in the brain. The sooner we treat them, the better chance we have of getting blood supplied back to the brain, which is what we aim for. Once the patient calls 911, the likelihood of a good outcome increases. It sets up a chain of command, which notifies techs, the lab, pharmacy, and the ER. It triggers a chain of events that leads to faster delivery of care. 911 makes a difference.”

According to the American Stroke Assoc., stroke is the third-leading cause of death for women and the fifth-leading cause of death for men; each year, 55,000 more women have a stroke than men. And because women live longer on average than men, strokes often have a more negative impact on their lives. In fact, women are more likely than men to live alone when they have a stroke; require the services of a long-term healthcare facility after a stroke; and have a worse recovery overall.

But with proper management of risk factors, and a quick response when an event occurs, women, as well as men, have a better chance of decreasing mortality rates from stroke and boosting quality of life.

On the Clock

Once a stroke patient arrives at Mercy, Henault said, a consultation is conducted with a neurologist from Massachusetts General Hospital in Boston through that institution’s stroke telemedicine program. “They can see the patient, give directions, answer patient questions, they can even zoom close up on eyes and check the pupils. It’s pretty amazing. They can give us advice on how to treat the patient.”

Patti Henault

Patti Henault says many risk factors for stroke — like high blood pressure, obesity, and smoking — are manageable with lifestyle choices.

Mercy began using the Mass General service in January 2016 because they are always ready to consult. “The neurologists in our area are often with patients, and it’s difficult to stop what they’re doing. We decided we’d get quicker service with telemedicine. And it really has made an impact.”

About 85% of all strokes are ischemic, caused by a clot, while the rest are hemorrhagic strokes, which are treated differently. In the case of an ischemic stroke, the first line line of defense is the blood-thinning agent tPA (tissue plasminogen activator), known colloquially as a ‘clot buster.’

“If there is a problem like a clot blocking an artery or arteries are very narrowed because of artherosclerosis, we might be able to resume blood flow to the brain,” Henault said. “The idea is, if we can resume blood flow to the brain, the brain cells stop dying because they’re getting the nutrients and oxygen they need.”

For patients that require a more dramatic intervention than a clot buster, a cutting-edge device in use at Baystate known as the ‘stentriever’ can actually be inserted into the artery to remove the clot.

“We’ve incorporated that as part of the protocol,” Padmanabhan said. “We want to make sure we have the right tools, state-of-the-art tools, to respond 24/7/365 and get all patients to the right treatment immediately.”

He added that doctors are waiting on trials and studies examining whether such interventions may be employed more than seven hours after a stroke, which is considered the current limit. (Clot busters like tPA are typically administered no more than four and a half hours out). “Expanding the window might capture more big strokes before disability and death. We won’t get them all, but we can decrease mortality.”

The best medicine, of course, is not to have a stroke at all, and fortunately, most risk factors are lifestyle-related and can be managed in most people.

“High blood pressure is huge one,” Henault said. “A lot of people think high blood pressure is kind of harmless, but it’s insidious because it does damage to blood vessels every day, and if you have high blood pressure, it’s constantly wearing down the side of the blood vessel, and one crack can develop a blood clot because the body is trying to fix it.”

Other risk factors, she went on, include being overweight, lack of physical activity, and behaviors like smoking, excessive drinking, and drug abuse. “Our younger stroke victims, especially, tend to have some high-risk behavior such as that.”

Some stroke risks require medical intervention, such as atrial fibrillation, or irregular heartbeat, which increases an individual’s chance of developing blood clots. Many with this condition take blood thinners on a regular basis.

“The most important risk factors are hypertension, diabetes, high cholesterol, and obviously smoking,” Padmanabhan said. “Quitting smoking and controlling sugars are important for treating blood pressure. Sleep apnea also has a correlation, so if you feel foggy and tired all the time, check it out and make sure it’s treated. You don’t have to be obese or have a metabolic syndrome to have sleep apnea.”

Although it sounds simple, he added, regular doctor visits can go a long way toward preventing strokes, as will following the American Heart Assoc. guidelines to engage in 20 minutes of moderate exercise five times a week. “The important thing is knowing your numbers. You won’t get to your goals in a day.”

For recovering stroke patients without these risk factors, Padmanabhan said, Baystate’s stroke clinics in Springfield and Greenfield conduct diagnostic cardiac testing to try to determine a cause. But there’s no one way to rehab from a stroke, Henault added.

“No two people are the same. Every section of the brain controls different things, so everyone’s treatment after a stroke is different. Younger brains tend to recover more quickly.”

Different for Women

Each year, according to the American Stroke Assoc., stroke kills twice as many women as breast cancer. But the public tends to be less knowledgeable about the risk factors and don’t perceive themselves at risk for stroke.

In addition to the general risk factors like family history, high blood pressure, high cholesterol, diabetes, smoking, lack of exercise, and being overweight, women face some unique risk factors, including:

• Taking birth control pills. The greatest concern about using oral contraceptives is for women with additional risk factors, such as age, cigarette smoking, high blood pressure, or diabetes;

• Being pregnant. Stroke risk increases during a normal pregnancy due to natural changes in the body such as increased blood pressure and stress on the heart;

• Using hormone-replacement therapy, a combined hormone therapy of progestin and estrogen, to relieve menopausal symptoms; and

• Suffering from migraine headaches with aura. Migraines can increase a woman’s stroke risk two and a half times, and most people in the U.S. who suffer migraines are women.

Women may also report symptoms that are different from common stroke symptoms. These can include loss of consciousness or fainting; general weakness; difficulty or shortness of breath; confusion, unresponsiveness, or disorientation; sudden behavioral change; agitation; hallucinations; nausea or vomiting; pain; seizures; and hiccups. Because these are not typically recognized as stroke symptoms, treatment is often delayed.

Henault said men and women should at least know the FAST symptoms. That’s an acronym stroke-care professionals use to help people recognize the signs of a stroke. The letters stand for facial drooping, arm weakness, speech difficulties, and time — which is of the essence, so call 911 immediately.

“It sounds silly,” she said, “but little kids understand that, and sometimes they end up calling 911.”

It could be the most critical call they ever make, because it launches a chain of events at the hospital designed to save lives — and, more often than ever, does just that.

Joseph Bednar can be reached at [email protected]

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]