Tag Archives: alzheimer’s

Wedded into a whole new world

Just five years into their marriage, Legates Frank and Janie Carney faced a challenge that is more likely to befall couples who have been together for decades.

At the age of 73, Frank, co-founder of Pizza Hut and a Papa John’s franchisee, began to suffer memory lapses that couldn’t be explained by the stress of his business. At first, his doctor thought a new prescription might have been responsible and, when Frank stopped taking the drug for three months, everything seemed to have returned to normal.

Then, the lapses resumed and eventually the Carneys would hear the dreaded words, “Alzheimer’s disease,” setting them on a path of sorrow that has deepened their Catholic faith.

Series of ‘shorts’

“People think with this disease that everything just shuts off . . . [but] it’s not like a light switch,” said Janie in describing the progression of Alzheimer’s. “It’s a series of shorts. At every step of the journey, you get some strength, then the bottom drops out and you have to adjust and compensate for the lesser state so it’s not like a constant slide down. If you understood what’s going on scientifically in the brain, it’s those interruptions in the neurotransmitters that continually become more frequent.”

When the Carneys, members of the Wichita, Kansas, Legatus Chapter, initially were given a diagnosis of cognitive impairment, they contacted a well-known clinic recommended by Frank’s physician. But after waiting three months for an appointment, they encountered a nine-hour delay caused by an airport closure at their destination and returned home.

At that point, Janie said, “I was in search of something – anything, and I remembered Health network with Legatus.” The Health network membership benefit provides a “concierge service” giving Legates and their families access to top medical facilities. Ten days after contacting the service, Janie said, “We had 24 appointments at the Mayo Clinic. In four days, they had screened everything they could possibly screen with Frank. And we started a relationship.” Besides learning about clinical trials of drugs, the contact with Mayo put Janie on a track to study her husband’s disease and she became relentless in her pursuit of learning about it. By the time the Carneys sought to get Frank in a compassionate-use study of Bryostatin-1, under the supervision of the U.S. Food and Drug Administration, Janie had amassed stacks of information that allowed her to advocate for him.

Improvement and shared purpose

After 13 months on Bryostatin-1 beginning in May, 2014, Frank improved to the point that he and Janie were able to resume some of their normal activities, including dining outside his care facility and occasional trips to the grocery store. Before that, he had been nearly mute and weakened to the point that Janie had to hold his arm when he walked. However, the trial ended when Janie was forced to find a new care facility that would not allow continued participation in the study.

Nonetheless, Janie knows her husband would be grateful that the trial could eventually help someone else. In an interview with the Wichita Eagle, she explained that his purpose in life was never what someone could do for him, but what he could do for others. Although that was a long-held philosophy, when the Carneys joined Legatus, attending their first meeting four days after their wedding, it added another dimension by immersing Frank in his Catholic faith. After 30 years as a lapsed Catholic, Janie said her husband had returned to the Church before they married, and Legatus allowed him to experience the spirituality he had not been able to enjoy since high school. “It was the greatest gift we could have had as a couple.”

As Frank’s caregiver, Janie has tried to live his commitment to others as well as their shared faith. She visits him daily at his care facility, where she has developed relationships with the staff and other residents. “What’s funny is they’ve become my family.”

Support, separation and activism

That sense of family among those with the shared purpose of caring for people with Alzheimer’s can be especially important because, Janie said, “It’s a disease that separates you. It separates family members who don’t understand, feel inadequate, or are hurt because the world isn’t giving them what they wanted so they don’t participate . . . It’s the difference between being in the world and of the world. When you’re of the world, you want everything to be the way you want it to be and so when your expectations fall short, you feel like you don’t have to participate.”

Additionally, Janie has become a legislative activist for a state bill allowing the use of videography in nursing homes, an effort that led to her appointment in 2018 to the Kansas Alzheimer’s Disease Plan Working Group for Public Policy. And, as part of her advocacy, she has written a memoir aimed at caregivers focusing on the spiritual aspect of partnership.

“Honestly,” she said, “I would never have imagined that my life would have turned in this direction. But I do it because this is exactly what Frank would have done if the roles were reversed. I do it as a Legate because ‘to those who have been given much, much will be required.’ More importantly, I do it in respect of Frank’s own words, ‘I have been given a great deal of opportunity in my life and the only way to reciprocate opportunity is with responsibility.’”

Not surrendering

Dr. Martin Bednar, a Providence, R.I., Legate and neurosurgeon who focuses on Alzheimer’s disease therapies in his work with Takeda Pharmaceuticals, said he admires Janie’s perseverance in the face of a disease that has become one of those Americans most fear. Yet, he continued, despite its devastating effects, he has seen amazing responses to Alzheimer’s, even from people he would have expected to break down. “They haven’t surrendered to the disease, but they have surrendered to the Lord . . . It’s not like they’re looking to be an example, but they are. They’re just living examples everyday of grace in action.”

His advice for those faced with an Alzheimer’s diagnosis, he said, is to take advantage of specialists, support groups, and the resources of the Alzheimer’s Association. Secondly, he said, “Get involved, try to understand the disease, stay positive, and don’t give up because the research and medical communities are not giving up and they’re spending billions of dollars to fight this . . . The more you understand about the disease the less you feel like you’re shadowboxing against an invisible enemy.” Finally, Bednar recommends prayer. “Continue to develop your relationship with the Lord . . . Surrender to the Lord and be a spiritual warrior.”

Redemptive work

Indeed, Janie’s response to Frank’s disease has reflected much of that advice. Clearly, said Fr. John Sherlock, acting chaplain of the Legatus Wichita Chapter, she has found solace in her Catholic faith.

As she came to terms with her own limitations, he said, she developed an inner strength and a vision that deepened into an ability to accept God’s will. “And she saw some redemptive value in the sickness itself. She did not deny the sorrow. She did not deny the hurt. She did not deny the curtailing of her ideals in the marriage, but rather she saw in it a way to unite herself with the sufferings of the Lord and saw that there is a value to these sufferings – a redemptive value that could be applied to herself, her husband, other people, the family.”

JUDY ROBERTS is a Legatus magazine staff writer.

Protecting ‘power’ to the brain can fend off Alzheimer’s

For the first time in history, non-infectious chronic diseases (cancer, heart disease, diabetes and dementia) have replaced infectious diseases in the majority of deaths worldwide.

In the U.S., Alzheimer’s disease (AD) is second only to cancer as the most feared diagnosis. Alzheimer’s is a cruel disease; symptoms progress over a decade, slowly and relentlessly robbing people of their memories, ability to think, and remain independent. No one has ever survived Alzheimer’s disease and the current available treatments have very modest benefits. Sixteen million American caregiving families and friends last year accounted for $232 billion in free care during 18.4 billion hours.

The greatest risk factor for developing AD is age. AD affects 10 percent of people over 65 years, and 45 percent over 85 years. Nearly 50 million people worldwide have AD, and this number is expected to nearly triple over the next 30 years, due to the world’s aging population.

Sobering news, but there is hope.

Through current brain imaging capabilities and blood and spinal fluid testing, we know that AD typically starts ‘silently’ in midlife with the slow accumulation of two proteins — amyloid and tau— decades before the mildest symptoms appear. Disease gradually progresses to subtle memory problems and then worsens to involve additional thinking skill (reasoning, judgment, attention, and language). When these symptoms reduce a person’s ability to perform everyday activities, a diagnosis of Alzheimer’s “dementia” is made. Patients with AD often have a second form of dementia (vascular, Lewy body, etc.).

Treatment – medical and practical

What about treatment? First, there are non- modifiable risk factors, such as advancing age and genetic risk factors, such as a protein called ApoE4. About one-fourth of the population carries this protein, and people with one or two copies of ApoE4 have a threefold and twelvefold, respectively, increased risk of AD. Gene therapy advances may make it possible to either “silence” or alter ApoE4.

Modifiable risk factors include cardiovascular disease (e.g., diabetes, high blood pressure, heart disease) and social and cognitive disengagement. A healthy heart helps to maintain a healthy brain, and an active mind increases resilience to AD. Eating a healthy diet, avoiding mid-life weight gain, not smoking, modestly drinking alcohol, regularly exercising (even walking!), treating diabetes, high cholesterol and high blood pressure if diagnosed, maintaining strong social ties with your friends and family (don’t be too busy to visit, call, or e-mail), and keeping mentally active (reading, seeking challenging mental tasks, being the ‘eternal student’!) could reduce the cases of Alzheimer’s disease worldwide by as much as a third! The Alzheimer’s Association is a great first resource for those interested in learning more: https://www.alz.org.

On the scientific front, there are many clinical trials to reduce levels of abnormal amyloid and tau proteins, as well as trials focusing on the brain’s immune system, neurotransmitters, and improving brain cell survival. Gene therapies and adult stem cell approaches will likely impact the future course of AD.

MARTIN M. BEDNAR, M.D., PH.D. is vice president, Neuroscience Therapeutic Area Unit, Takeda Pharmaceuticals and a fellow of the American Association of Neurological Surgeons. Throughout his pharmaceutical career, he has focused on Alzheimer’s disease therapies. Dr. Bednar is president of the Providence, RI Legatus chapter and a frequent author on the interrelationship of science and religion, embracing the sanctity of life from conception to natural death.

Kicking Pot To The Curb

Renowned Alzheimer’s researcher Dr. Vincent Fortanasce says marijuana use may lead to the disease

An estimated 200,000 people in the United States under age 65 are living with younger-onset Alzheimer’s disease. And hundreds of thousands more are coping with mild cognitive impairment, a precursor to Alzheimer’s and other dementias.

“It’s beyond epidemic proportions. There truly is a tidal wave of Alzheimer’s disease,” said Dr. Vincent Fortanasce, a clinical professor of neurology in Southern California who is also a renowned Catholic bioethicist, author and radio host.

Fortanasce, a member of Legatus’ San Juan Capistrano Chapter, for several years has studied Alzheimer’s disease, its underlying causes and treatments. Through his research, he believes there may be a link between chronic use of marijuana — especially when started at a young age — and Alzheimer’s.

Finding the link

Fortanasce notes that medical research shows chronic users of marijuana, in particular the kind with high quantities of THC, have reduced volume in the hippocampus, the region of the brain responsible for memory and learning. In Alzheimer’s disease, Fortanasce said, medical researchers have also noticed reduced hippocampus volume with increased B-amyloid plaques and neurofibrillary tangles.

Taking into account other factors, such as skyrocketing obesity rates and lack of exercise, Fortanasce argues that chronically smoking marijuana and consuming products laced with cannabis are harming the long-term mental health of millions of young Americans. He is trying to convince the American Academy of Neurology to conduct a major survey to see if people diagnosed with dementia have also smoked marijuana.

“And if we find out — especially for people under 65 — that 50% of them were smoking pot, that’s a huge indication that marijuana is responsible for Alzheimer’s disease,” said Fortanasce, who was a leading figure in the fight last year to defeat a California ballot initiative to legalize recreational marijuana.

Voters in California chose to legalize recreational pot, as did their counterparts in several other states last November, raising the total number of states that permit recreational or medical marijuana to 28.

The marijuana lobby has been active in recent years in pushing ballot measures to decriminalize small amounts of marijuana, or to legalize medical marijuana and fully recreational pot, which is now legal in eight states and the District of Columbia.

The Marijuana Policy Project, a nonprofit that supports legalization, boasts on its website that it is “devoting significant resources” to ending marijuana prohibition in eight more states in 2017 — and that it’s lobbying and building coalitions across the country to regulate marijuana like alcohol.

Moral issue

In addition to the money and organizing efforts driving the legalization campaigns, Fortanasce said widespread ignorance has enabled the marijuana lobby to obfuscate the issue. While marijuana may have some medicinal properties (cannabidiol in pot, for example, can help decrease nausea and be used to treat seizures), Fortanasce noted that there are already medications on the market that are far more efficacious than marijuana.

“It takes the average drug about 10 years to get on the market — an anti-inflammatory, simple drugs like aspirin,” Fortanasce said. “You have 10 years of painstaking research, averaging $1 billion spent by pharmaceutical companies. Before they can give it to people, it’ll have to pass between three and five stages of scrutiny.”

“Marijuana has not had to go through any of these stages,” Fortanasce said, “and the question is why?”

Father Michael Orsi, who serves on the board of directors at St. Matthew’s House, which runs a drug recovery program in Naples, Fla., said the drug lobby has been successful because of wealthy donors and advertising that suggests that legalizing medical marijuana is a matter of compassion.

“It’s a real tragedy for society because it’s going to affect people who are using and not using marijuana — especially people who are going to be hurt while driving,” said Fr. Orsi. He last year spoke out against a medical marijuana ballot initiative in Florida. The initiative passed.

“The law is designed to legalize pot. Don’t let anyone be fooled that this is something done out of compassion,” said Fr. Orsi, who added that 99% of the clients in the St. Matthew’s House recovery program started smoking marijuana before becoming addicted to harder drugs like cocaine and heroin.

“There is a moral issue involved with anything that’s harmful to human beings,” Fr. Orsi said.

Death and addiction

There is no defined, specific Catholic teaching on cannabis. But Scripture, the Catechism of the Catholic Church and Church documents condemn drunkenness and recreational drug use that impair the mind and body. The Catechism describes the use of drugs, except on strictly therapeutic grounds, as a grave offense (#2291).

With those principles in mind, the nation’s Catholic bishops have frequently spoken out against marijuana-related ballot measures. In Massachusetts, where voters legalized recreational pot last November, Cardinal Sean P. O’Malley, the archbishop of Boston, held press events with elected officials and interfaith leaders to speak out against the initiative.

“There was real effort to get the word out, but unfortunately the voters didn’t go in that direction,” said James Driscoll, executive director of the Massachusetts Catholic Conference.

Driscoll highlighted several problematic aspects of marijuana legalization, noting that it is happening at the same time that a national opioid epidemic is ravaging communities across the country. He referenced scientific studies indicating marijuana use hampers brain development in youth and can be traced to increased rates of school dropouts and highway deaths in states like Colorado that have legalized recreational pot in recent years.

“The proof is in the pudding,” Driscoll said.

Fortanasce agrees with Driscoll, adding that marijuana promotes isolation and a decrease in socialization, making its users more apathetic and distracted. Noting the brain chemistry involved, Fortanasce also argues there is a direct association with the use of marijuana, pornography and violent video games.

“In marijuana the fear centers of the brain, the anxiety centers, are built up, while the cognitive center, the hippocampus, loses 20% of its volume,” Fortanasce said. “Therefore the sense of morality and self-control, motivation, is lost, as is what we call executive functioning, the ability to follow through. That is, you find these kids who are into marijuana aren’t very motivated.”

Arguing that the brains of chronic marijuana users resemble those of Alzheimer’s patients, Fortanasce believes heavy drug use could bring about “a perfect storm” for Alzheimer’s disease when combined with poor diet and other factors. He added that drug use can also hasten the onset of mental illness — or intensify it. And schizophrenia is a well-known example.

“Cannabis has not been clinically studied to the extent that is needed before approving its use in the general population,” Fortanasce explained. “The bottom line: Marijuana is dangerous. It’s not candy.”

BRIAN FRAGA is a Legatus magazine staff writer.

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Of Mind and Music

Jazz, art, and the French Quarter — some of the elements that make New Orleans one of America’s most beloved and unique cites — work together to provide a rich backdrop for Dr. Nicholas Bazan to explore the human impact on Alzheimer’s disease.

Legate Dr. Nicolas Bazan (left) and director Richie Adams on the set of Of Mind and Music

Legate Dr. Nicolas Bazan (left) and director Richie Adams on the set of Of Mind and Music

“I wanted to give a message of hope about this disease. Awareness yes, but hope at the same time,” said Bazan, a member of New Orleans’ Legatus chapter who is a renowned Neuroscience and published author.

Building awareness

Bazan, professor and director of the Neuroscience Center of Excellence at Louisiana State University Health New Orleans School of Medicine, in 2012 published his first novel, “Una Vida: A Fable of Music,” which has since been adapted into a feature film, Of Mind and Music.

Bazan co-wrote the screenplay with Richie Adams, the film’s director. The independent film has drawn praise from moviegoers and critics at various festivals and screenings since the movie was produced in 2014. The film was in limited release nationwide this spring and is now available on DVD and Blu-ray.

“The story is a tough subject matter, but we wanted to leave people inspired,” said Adams, who has worked on films like Mr. & Mrs. Smith and The Hunger Games.

“We knew that if the story was told against the backdrop of a city, rich and beautiful in history, and human beings helping human beings in times of need — regardless of race and socioeconomic status — that it would be a good thing for the film,” he said.

Bazan said his novel and the film are meant to spread awareness of Alzheimer’s disease to a wider audience than scientific journals can typically reach.

“To write the novel took me two years,” Bazan explained. “It took a lot of thinking to come up with the characters that could connect with people.”

One of the main characters in Of Mind and Music is Dr. Alvaro Cruz (played by Portuguese actor Joaquim De Almeida), who is a renowned neuroscientist studying Alzheimer’s disease. In the story, Cruz is heartbroken and disillusioned because his elderly mother has died of Alzheimer’s while he was away at a lecture in Paris.

ofmind-1Bazan said Cruz’s experience is based in part on his own life. Bazan’s mother died at age 86 while he was at a conference in Japan. She did not die from Alzheimer’s disease, but Bazan said he felt guilt not being at his mother’s side when she died.

In the story, Cruz takes time off work to gather himself and reconnect with the love of music that he and his mother shared. In New Orleans’ French Quarter, Cruz hears the spellbinding voice of an elderly female street musician named Una Vida, played by actress Aunjanue L. Ellis.

After repeat visits to hear her sing, Cruz realizes that Una Vida is suffering from Alzheimer’s disease, and he knows her street-musician companions are not equipped to meet her needs. As he goes about trying to help her, taking her into his own home and helping her search for a long-lost son, Cruz is amazed to learn that music triggers Una Vida’s memory. When a song comes on from her past, or when she sings a tune, Una Vida’s Alzheimer’s seemingly fades away — at least until the song ends.

Bazan said scientific research has shown that music, for many Alzheimer’s patients, stimulates their cognitive ability.

“Some patients are without connection to the world, but by being connected with music, they can be reconnected with reality,” Bazan said.

The magic of music

Dr. Vincent Fortanasce

The reason why music stimulates a patient with Alzheimer’s disease is because music is stored in the brain’s cingulate gyrus, the least injured part of the brain in someone with Alzheimer’s, said Dr. Vincent Fortanasce, a renowned neurologist and bioethicist who is a member of Legatus’ San Juan Capistrano Chapter.

“Music is magical in saving and restoring memory,” said Fortanasce, who added that even patients with severe Alzheimer’s can remember and sing songs from their past because the neurons in the part of the brain that stores music are the last to be affected by the disease.

Actress Sharon Lawrence, who plays Cruz’s wife Angela in the film, said she had watched a documentary about music therapy for patients with Alzheimer’s shortly before she was offered the role.

“The idea of doing a narrative story about how music connects us back to ourselves, I was very open to the idea,” Lawrence said. “I thought, ‘What a great way to help continue the understanding of this.’”

Like many other members of the cast and crew, Lawrence has a personal connection to Alzheimer’s. Her grandmother died from the disease, as did the film’s lead actor Joaquim de Almeida’s mother. Adams, the director, said the film’s casting director was a caregiver for her father for 10 years until he died of the disease last year, and one of his wife’s grandparents has recently been diagnosed with Alzheimer’s.

“It’s a subject that I have had compassion for because I have seen not only the people who have the disease and their challenges, but also the families and caregivers who suffer,” said Lawrence, who for several years has been involved in fundraisers for Alzheimer’s research.

ofmind-2A message of hope

According to the Alzheimer’s Association, an estimated 5.4 million Americans are currently diagnosed with the disease, which is listed as the sixth-leading cause of death in the United States and the fifth-leading cause of death for people over age 65.

Bazan said there is no cure or any proven steps to prevent neurological diseases such as Alzheimer’s.

“With Alzheimer’s, there are a lot of black boxes in our understanding of what’s going on,” Bazan said. “That’s why we can’t be in denial and we need the resources to do the research.”

In the absence of a cure, Bazan said he wanted to give a message of hope to people who may be diagnosed with Alzheimer’s disease or have a loved one with the illness. Bazan said his Catholic faith informed him as he went about writing the novel and screenplay.

“I’m one of those people who don’t believe in luck and I don’t believe in serendipity,” Bazan said. “I’m one of those who believe that God gave us scientists the opportunity to do what we do. I try to follow God’s guidance in a way to bring hope to things and situations that we cannot yet sort out through scientific approaches.”

Though subtle, faith is a consistent theme throughout the film. In one scene, Cruz lights a candle in a church for his mother. In a climactic moment, a cross is seen on a wall, which leaves the viewer with the impression that a character relied on faith to cope through a dark time in life.

“I think God has kind of had his hand upon this project from the very beginning,” said Adams, a Baton Rouge-based director who attends a Methodist Church. “I think God has his hand on all our lives, which gives me a huge amount of comfort.”

BRIAN FRAGA is a Legatus magazine staff writer.

Learn more: OfMindAndMusic.com

Caring for an elderly loved one

Healthnetwork’s Susan Locke offers advice for caring for an elderly loved one . . .

Thanks to the marvels of medical science, our parents are living longer than ever before. Adults over the age of 80 are the fastest-growing segment of the population. Most will spend years dependent on others for the most basic needs. That burden often falls on their baby boomer children.

If you find yourself in the role of caring for your parents or an elderly loved one, there are some things you can do to prepare for this endeavor.

• Prepare for the journey ahead. Taking on primary responsible for a parent affects not just you, but your spouse and your children. To lessen conflicts, engage your siblings in your plan as well.
• Try to look at concerns from your parent’s perspective. A huge concern for an aging parent is their loss of control. Be sure to make your parent feel that at least some aspect, even if minute, is under their control.
• Try to afford your parent his/her independence for as long as possible. Lack of independence can be very frightening for someone as they age. If possible, it’s better to gradually increase their level of care.
• Develop a management plan for their finances, including their bills and health plans.
• Keep up to date with their health issues.

In order for your parent to maintain the best health possible, it may be of benefit to have a geriatrics specialist become your parent’s primary care doctor. Although internists regularly care for elderly patients, geriatricians have a particular interest and expertise in the issues of the elderly, including many of the social concerns that can have significant effects on your family.

One of the most common concerns in an aging parent is memory loss. Some memory loss with aging is expected. When memory issues begin interfering with daily life and relationships, it may be a sign of Alzheimer’s disease or another type of dementia. Common symptoms of dementia include: recent memory loss, difficulty performing familiar tasks, problems with language, time and place disorientation, poor judgment, problems with abstract thinking, misplacing things, mood fluctuations, and loss of initiative.

Any of these symptoms should be reported to your parent’s physician. If your parent receives a diagnosis of Alzheimer’s disease, you may want to ask these questions of their physician:

• Why do you think it is Alzheimer’s disease and not something else?
• What stage of disease is my parent in now? How fast will the disease progress/what can I expect in the future?
• Can my parent live independently? How does Alzheimer’s disease impact the general health of my parent?
• What medications or other non-drug therapies are available and what are their side effects?
• What safeguards should I have in the home?
• Are there any clinical trials that might be helpful?

Caring for a parent with aging issues can be an emotionally exhausting experience. If you are the primary caregiver, you need to take care of yourself and maintain a strong support system.

Susan Locke, MD , is Healthnetwork Foundation’s Medical Director.


Special thanks

Thank you, Dr. Savage, for stopping by to see my dad again tonight. I appreciate your personal interest and attention. I can honestly say that your talk to him was the turning point thus far in his recovery. Your “bedside manner,” calm presence and reassuring demeanor meant more than the medicine you prescribed.

Rick Costello

For an old school Italian, it was your words and his confidence in you that “snapped him out of his daze” and allowed him to willingly accept your advice.

Thank you again for your professionalism and caring. It is obvious that you care for the patients and my dad is getting better because of it.

God bless you!

Rick Costello
President & C.O.O.
Spectrum Surgical Instruments Corporation
Cleveland Chapter of Legatus

The Anti-Alzheimer’s prescription

A Legatus member, Fortanasce is one of the world’s top Alzheimer’s experts . . .

anti-alzheimersThe anti-Alzheimer’s prescription: The science-proven plan to start at any age
Gotham, 2008. 352 pages, $26.00 hardcover

Alzheimer’s is rampant among older adults worldwide, and as baby boomers age, it promises to be the Great American Epidemic of the 21st century. Unlike other books in the category (which primarily focus on caring for an Alzheimer’s patient after diagnosis), this book presents a program to lower your risk by 70%. While science stumbles in finding a cure, physicians agree on one treatment: prevention. Making proper lifestyle choices can keep you healthy.

Order: Amazon, Barnes & Noble