In this video, Susan H. Fox, MB ChB, MRCP(UK), PhD discusses the importance of lifestyle in dealing with PD, emphasizing the importance of sleep and exercise.
WPA’s revamped Mission Statement
In order to realign WPA’s Mission Statement with our goals and program offerings, our Board of Directors recently revamped the statement:
Providing hope, community, support, and resources for people with Parkinson’s and their loved ones.
This new mission statement truly shows what WPA is able to provide for YOU. We are a broad and diverse organization, providing you with what you need as you navigate life with Parkinson’s – whether it’s your own Parkinson’s, or that of a loved one.
This new mission statement is flexible and broad, and doesn’t focus on any particular program or service we offer. We are constantly seeking opportunities to expand and broaden how we connect with people with Parkinson’s, caregivers, medical professionals, and more.
Finally, this new mission statement is brief and easy to remember. When someone new connects with WPA, we want to be able to easily share with them our place in this community!
Understanding Parkinson Disease Psychosis
If you are the caregiver of someone with Parkinson’s disease (PD), you are likely well aware of the common motor symptoms associated with the condition, like tremors. However, you may not be aware that non-motor symptoms (those unrelated to physical movement), such as psychosis, commonly develop as the disease progresses. These symptoms should not be overlooked.
What is Parkinson’s Disease Psychosis?
As PD progresses, up to 40 percent of the approximately one million Americans living with the illness will develop psychotic symptoms, primarily hallucinations, but also delusions. These symptoms can be an indication of Parkinson’s disease psychosis (PDP), but unfortunately, many patients are not diagnosed. Sometimes, the symptoms of PDP are misdiagnosed as a co-morbid condition. Other times, patients and their families may not be comfortable sharing the symptoms with their physician team.
What Causes PDP?
Though definitions can vary, the term psychosis generally means “loss of reality testing.” Psychotic symptoms may be brought on by infections, typically bladder or pneumonia, but are often caused by medications. These are usually the ones used in treating PD, but other medications, particularly narcotic pain medications and many of the drugs used to treat an overactive bladder, may cause symptoms as well. When infections have been ruled out and no other medication has been identified as causing the psychosis, then the most likely culprits are the PD medications. It’s also possible that PDP might be a naturally occurring complication as the disease progresses.
There are a couple of things to keep in mind here. One is that the symptoms may begin even though PD medications have been constant over several months, or even years. The problem may not necessarily be triggered by an increase in PD medications. The reason that a stable medication regimen can begin causing hallucinations is that the PD is always progressing, making patients more sensitive to possible drug side effects. The second principle to keep in mind is that it may not be one drug that is the cause, but the combination of all the PD medications.
Hallucinations
Many PD patients have occasional, or not so occasional, symptoms that are often seen in people who lose their ability to separate reality from fantasy. These are most commonly hallucinations, which are false perceptions in one of our special senses (vision, hearing, taste and touch). For example, it’s quite common for patients to report seeing other people, often children, who are sitting or standing in the room, ignoring them. Another commonly cited experience is that a patient who is watching TV or reading a book notices two strangers sitting on a sofa talking to each other, but they make no noise. The patient talks to them, and they ignore him. When he gets up to approach them, they disappear. A few days later, this happens again, and after one or two episodes, the patient no longer pays attention or tries to contact them. These types of hallucinations tend to occur more at night than during the day and are usually the same each time.
Some of the images may be entertaining, but usually are just a little bit annoying. The hallucinations may look real, appear to be black and white, fuzzy or sharp and sometimes, the people may look somewhat odd, like cartoons.
Auditory hallucinations, or hearing things that are not there, are about half as common as visual hallucinations, and they tend to be less distinct than the visual hallucinations. Patients may hear a radio in another room, a party going on across the street or voices talking in the hallway. Less common are tactile hallucinations (e.g., feeling things on the skin), olfactory (e.g., smelling an aroma not detectable to others) and taste hallucinations.
Other Types of Hallucinations
In addition to persistent or repeated visual hallucinations, a PD patient might also see a fleeting image out of the corner of their eyes, like a cat or a shadow passing by, but when they turn to look, there isn’t anything there. Sometimes they see slight flashes of light, which are very much like reflections off their eyeglasses.
Another type of experience is called a “presence hallucination,” which is not really a hallucination. With a presence hallucination, patients have a strong feeling of another person, or an animal, being behind them or to the side, but when they turn around, there isn’t anything. This feeling usually isn’t scary, as the patient doesn’t feel they’re about to be attacked. However, this is a strong feeling – something most people have experienced on occasion – but in this case, it’s experienced more frequently and more strongly.
Delusions
Delusions are false, irrational beliefs. In PDP, delusions are more bothersome, but less common. Also, in PDP, the delusions tend to be fairly similar from one patient to the next and are usually paranoid in nature. For example, a patient might be positive that his spouse has been attacked and is in need of assistance. Or, a spouse may be irrationally convinced that their partner is committing adultery.
Susan’s Story
Sadly, after a 20-year battle with PD, Susan’s father, Gary, passed away in April 2014 at the age of 74. Because Susan resides in Las Vegas, her mother, Marjorie, was her father’s primary caregiver in Iowa. Susan stayed actively involved by providing her mom with emotional support, particularly in later years when her father developed PDP.
Susan and her mother believe that Gary’s PDP started after a hospital stay resulted in changes to his medication doses. At that time, Gary began to experience strange and disturbing delusions, often in relation to his wife’s safety. For example, on several occasions, he called the police, convinced that “weirdos” had entered the house to sexually assault Marjorie. He once even drove himself to the police station to report the perceived crime. Also disturbing, Gary would see kittens frolicking and then get upset when he thought he saw them die because he “forgot” to feed them. Other hallucinations included seeing strangers in his bed or with him in the shower. Despite telling Gary that his visions were not real, Susan and Marjorie often could not convince him of the truth.
Susan’s mother was emotionally exhausted and stressed from caring for Gary, whom she had been married to for 48 years. The idea of seeking more help for him was overwhelming, given the time she already gave to physical therapy and day-to-day care. Her life already revolved around Gary’s illness. Susan tried to encourage her mother to speak to her physicians about Gary’s visions, but her mother was embarrassed. On the other hand, both also wished the physicians had asked if these symptoms were occurring.
PDP’s Impact on Caregivers
As Susan’s story demonstrates, PDP is difficult for both the patient and their caregivers, particularly because it is impossible to convince someone who is experiencing delusions regarding the truth of their circumstances. Logic does not penetrate.
In fact, accusations of spousal infidelity are often the “last straw” and when caregivers find caring for their loved one too overwhelming. One of the major problems in dealing with PDP is that the patient and the family often try to hide the problem – the patient for fear of being thought “crazy” and the caregiver due to embarrassment. The reality is that when a PD patient has psychotic symptoms, his or her mental abilities will be otherwise normal. The patient may not be disoriented, can still balance their checkbook and recall everything they’re supposed to know. When hallucinations or delusions occur, the treating doctor should be notified. No irreversible harm will occur if treatment is delayed, but it is unlikely the problem will go away on its own.
Treating PDP
Hallucinations don’t always need to be treated. If these symptoms often don’t bother the patient, then they don’t need immediate attention, but they should always be monitored. Yet, hallucinations also indicate toxicity, hence PD medications cannot be increased without worsening of the hallucinations, and therefore, physicians may limit treatment. When the psychotic symptoms require treatment, the doctor may first reduce PD medications, and when these cannot be further reduced, they may prescribe something else.
Support Your Loved One and Yourself
PDP is also associated with increased caregiver stress and burden, nursing home placement and increased morbidity and mortality. But, your loved one is certainly not alone in living with PDP, and an effective management plan can improve the complication. Seek out the support that he or she needs, but also make sure that you are getting the emotional care you personally need in order to be an effective advocate for your loved one.
10 Tips for a ‘Common Sense Approach’ to Life With a Chronic Illness
While living with a chronic illness can be challenging, there are ways that you can make life easier and live a happy and fulfilling life. Establishing good habits and routines takes time, but as Gunnar Esiason points out in his blog Own It, there are some “common sense approaches” to living life with a chronic illness that everyone can find useful.
Follow Directions
It’s tempting to cut corners sometimes, especially if you’re running late or tired, but taking medications and therapies as prescribed and for the required amount of time will prevent you from becoming sick. Skipping meds or only partially doing therapies, not cleaning or maintaining equipment may save you a little bit of time in the short run, but may result in you becoming sick.
Designate a First Responder
Designate a person (or persons) who you can rely on to know what to do if you have a medical emergency. This can be a member of your family, a colleague, or a friend. Make sure they know how to respond to any exacerbations you may experience.
Be Organized
Keep any medications, equipment or paperwork that has to do with your health condition in good order. If you need to take medications at different times of the day, set reminders on your cellphone. Keep all paperwork in an organized folder so everything you need is easily found. Use weekly pill boxes to keep a week’s supply of meds ready. Ensure all equipment is cleaned after use so it’s ready for the next time.
Use Trusted Sources for Information
Dr. Google is notoriously wrong, as are most of your well-meaning colleagues and friends. Use trusted sources for information regarding your chronic illness. Non-profit organizations are great places to find accurate and up-to-date information. Your health care team is also a phone call away if you have any questions that need to be answered.
Get the Most Out of Your Appointments
Often, particularly when you’re first diagnosed, there is a lot of information to process. Taking notes when you meet your health care team will help you to remember all that you’ve been told. Also, preparing a list of questions before you go to your appointments will ensure that you don’t forget anything important while you’re there. Take a friend or family member along for support — they’ll often think of things you may miss.
Have Faith in Yourself
You may think that the journey you’re about to embark on will be too difficult or that you won’t be able to keep up with the treatments. Have faith in yourself — you are stronger than you realize. In the beginning, there will be many changes, but life will soon settle into a new normal and you’ll be surprised at how well you’re handling things.
Ask for Help
Don’t be too afraid or too proud to ask for help. Family and friends will want to help you out in any way they can, just as you would if the roles were reversed. Focus on your health and staying well, and allow others to do things for you. If you require financial aid or help to procure necessary equipment, non-profit organizations are a great place to start. Local volunteer groups can offer caregiving help as well as help around the house and garden.
Don’t Let Negative Feelings Get You Down
Feeling angry, frustrated, sad, or disappointed are all extremely normal reactions to a chronic illness, but you’ll need to work through these feelings and push them to one side. Focus your energy on getting well and try to be positive about your treatment.
Be Adaptable
It’s likely that you won’t be able to live your life exactly as you did before. Depending on the severity and type of chronic illness you have, you may find that you simply can’t do as much as you used to. Be more selective with your calendar so you have more energy and enthusiasm to enjoy each activity and event. Ditch bad lifestyle habits that could make your chronic illness worse, and try to embrace new healthy ones instead. Learn that it’s OK to say no to people — your health comes first and they should be able to accept that.
Laugh
Laughter is great medicine. It won’t cure your chronic illness, but it will make living life with it more fun. Take time to do the things you enjoy and that give you pleasure, spend time with people who make you happy and take joy wherever you can find it.
Dancing can reverse the signs of aging in the brain
As we grow older we suffer a decline in mental and physical fitness, which can be made worse by conditions like Parkinson’s disease. A new study, published in the open-access journal Frontiers in Human Neuroscience, shows that older people who routinely partake in physical exercise can reverse the signs of aging in the brain, and dancing has the most profound effect.
“Exercise has the beneficial effect of slowing down or even counteracting age-related decline in mental and physical capacity,” says Dr Kathrin Rehfeld, lead author of the study, based at the German center for Neurodegenerative Diseases, Magdeburg, Germany. “In this study, we show that two different types of physical exercise (dancing and endurance training) both increase the area of the brain that declines with age. In comparison, it was only dancing that lead to noticeable behavioral changes in terms of improved balance.”
Elderly volunteers, with an average age of 68, were recruited to the study and assigned either an eighteen-month weekly course of learning dance routines, or endurance and flexibility training. Both groups showed an increase in the hippocampus region of the brain. This is important because this area can be prone to age-related decline and is affected by diseases like Alzheimer’s. It also plays a key role in memory and learning, as well as keeping one’s balance.
While previous research has shown that physical exercise can combat age-related brain decline, it is not known if one type of exercise can be better than another. To assess this, the exercise routines given to the volunteers differed. The traditional fitness training program conducted mainly repetitive exercises, such as cycling or Nordic walking, but the dance group were challenged with something new each week.
Dr Rehfeld explains, “We tried to provide our seniors in the dance group with constantly changing dance routines of different genres (Jazz, Square, Latin-American and Line Dance). Steps, arm-patterns, formations, speed and rhythms were changed every second week to keep them in a constant learning process. The most challenging aspect for them was to recall the routines under the pressure of time and without any cues from the instructor.”
These extra challenges are thought to account for the noticeable difference in balance displayed by those participants in dancing group. Dr Rehfeld and her colleagues are building on this research to trial new fitness programs that have the potential of maximizing anti-aging effects on the brain.
“Right now, we are evaluating a new system called “Jymmin” (jamming and gymnastic). This is a sensor-based system which generates sounds (melodies, rhythm) based on physical activity. We know that dementia patients react strongly when listening to music. We want to combine the promising aspects of physical activity and active music making in a feasibility study with dementia patients.”
Dr Rehfeld concludes with advice that could get us up out of our seats and dancing to our favorite beat.
“I believe that everybody would like to live an independent and healthy life, for as long as possible. Physical activity is one of the lifestyle factors that can contribute to this, counteracting several risk factors and slowing down age-related decline. I think dancing is a powerful tool to set new challenges for body and mind, especially in older age.”
This study falls into a broader collection of research investigating the cognitive and neural effects of physical and cognitive activity across the lifespan.
Backup Plans: When a family caregiver dies before their patient
When Kristen Beatty lost her mother suddenly in 2012, her grief was complicated by another challenge: how to care for her 74-year-old father, who has Alzheimer’s disease. He’d been diagnosed 10 years earlier, and over the years her mother had become more than his caregiver: She was his gatekeeper, maintaining the privacy her retired Navy officer husband desired.
“We didn’t know where our mom kept any of the information that might help us in taking care of our dad. We honestly didn’t know how advanced the disease was and how paranoid and sleepless and restless he could be,” says Beatty, who lives in Centennial, CO. “All of those things were a revelation to us. Our mom had done such a good job managing it all.”
Beatty and her brother dug through filing cabinets in their parents’ home in Aurora, CO, and searched their mother’s cell phone contacts to come up with a list of their father’s doctors. They searched for a list of computer passwords so they could do things like cancel their parents’ vacation timeshare and see which bills were set to pay automatically. They had to find people who provided services like lawn care and snow removal. They had to hire paid help to come to their father’s home every day.
“We didn’t know where to go or what to do, and we were calling everyone and anyone for help,” Beatty recalls.
UNNATURAL ORDER
More than 65 million people—about 30 percent of the population—currently provide full- or part-time care for a friend or family member, according to 2009 figures from the National Alliance for Caregiving. But that number is inexact and could be much higher, says Lisa Winstel, chief operating officer of the Caregiver Action Network, a national nonprofit organization that provides resources for an estimated 90 million family caregivers. And as the nation ages, the number of caregivers will increase.
In the natural order of life, caregivers aren’t supposed to die before patients. From the outside, the relationships are viewed as one healthy person taking care of another person who is chronically ill, disabled, or aging. The focus is on the patient’s needs, which is why the sudden death of a caretaker can be so devastating for families and patients—even though it’s well known that many caregivers tend to neglect their own physical and mental health, sometimes fatally. In fact, spousal caregivers ages 69 to 96 have a 63 percent higher mortality rate than noncaregivers in the same age group, according to the Family Caregiver Alliance.
Dig deeper and the statistics are even more concerning, says Winstel. In a survey conducted by the Family Caregiver Alliance, more than one in 10 family caregivers reported that caregiving had caused their physical health to deteriorate. Almost 72 percent of family caregivers said they don’t see their own doctors as often as they should, and 55 percent said they skip their own medical appointments.
Still, many families are caught off guard when designated caregivers die. Because caregivers focus on the needs of others, they may not have created their own advance directive or living will. They may never have considered what would happen to their loved ones if they, the healthy ones, became incapacitated.
CAUGHT UNPREPARED
“We see families fall into disarray when tragedy strikes and a lot of things aren’t pre-planned,” says David Y. Hwang, MD, assistant professor of neurology in the division of neurocritical care and emergency neurology at the Yale School of Medicine in New Haven, CT. “Dad’s the one who knew all Mom’s medications, all Mom’s doctors, Mom’s medical history. Families basically take it for granted that Dad knew what Mom needed. It’s really tough for them to focus as they try to deal with the shock of what’s happened.”
THINK AHEAD
Doctors and advocacy organizations are now urging caregivers and their families to think ahead and put careful plans in place in advance of the worst-case scenario. Organizations like the National Caregivers Library and the Alzheimer’s Association offer online tools to guide caregivers through the legal, financial, and medical plans that need to be made.
“When I’m talking to a family and the spouse is the primary caretaker, I’ll say, ‘That’s great, but who’s the backup?’ That person needs to have power of attorney for legal or financial issues and be able to answer health care questions and make decisions,” says Ruth Drew, director of Family and Information Services for the Alzheimer’s Association’s national office in Chicago. “That person has to know where everything is: the will or the trust, the bank accounts, the insurance policies. You want to have these conversations when everyone’s fine.”
For added security, assign more than one family member as a backup, advises Maisha Robinson, MD, assistant professor of neurology at the Mayo Clinic in Jacksonville, FL. “List at least two family members or loved ones on the health care surrogate and living will forms,” she advises. If, for example, the spouse is the only person listed on the advance directive and the spouse dies before the patient, the next of kin will be legally responsible for making medical decisions, a determination that is made according to individual state statutes, Dr. Robinson explains. “It is far better for patients to designate alternate health care surrogates and decision-makers; this will significantly reduce confusion if and when medical decisions need to be made for patients.”
While families may have made informal emergency plans—a son will take care of his dad if the mom dies, a daughter will manage the affairs of her mother if the father dies—writing things down and shoring up support from all involved is crucial, Drew says.
She also recommends families consult a lawyer, ideally one specializing in elder care and planning. Some are taken by surprise when they learn the costs of nursing homes and care facilities. They may be equally surprised when they learn which costs are covered by insurance, if there is any, and what steps they need to take to receive government assistance.
“Even when everybody in the family has the best intentions, they don’t always agree on what the right thing to do is,” Drew says. “If one person has been given power of attorney and makes a decision others in the family don’t agree with, that can have major negative repercussions.”
BE PROACTIVE
After seeing some of his patients unsettled by the death of caregivers, Jason H. Karlawish, MD, professor of medicine in the geriatrics division at the University of Pennsylvania’s Perelman School of Medicine, decided to change the way he talks to patients. During an initial visit, he’ll find out if patients have authorized anyone to make decisions for them if they become incapacitated. Once he determines who the primary caretaker is, he’ll encourage families to make backup plans, especially if the caregiver is a spouse.
“I’ve seen patients thrown into unsettling family situations where the spouse dies and the adult children can’t agree on who is caregiver number one and number two,” he says. “After enough of those experiences, I’m more and more sensitive to it, and I’ve become proactive.”
Dr. Karlawish often finds that family members have different perceptions of a patient’s needs, sometimes because they have different levels of information about the patient’s illness. Why can’t she live alone? Why can’t she go to adult day care? “I hear how children fight over what to do,” he says. “Don’t wait for a problem [to make these plans].”
During conversations with patients, Dr. Karlawish will ask what they plan to do if their primary caregiver dies. Who will they turn to? Then he’ll suggest they contact that far-away sibling or close friend and ensure he or she is on the same page.
“As physicians, we’re not trained to think deeply about social structure and family beyond the immediate needs of the patients. But you have to think about that, especially with Alzheimer’s disease,” Dr. Karlawish says. “It’s about engaging and empowering families.”
SHARE THE LOAD
Some caregivers resist these conversations. Penelope D. Zeifert, PhD, clinical professor in neurology and neurological sciences at Stanford University School of Medicine in Palo Alto, CA, recently met with a patient in her eighties who has memory problems. The woman cares for her husband around the clock and told Dr. Zeifert that she didn’t want to go to great lengths to find the cause of her own problems.
“She was anxious and said, ‘No, I don’t want any feedback,’” Dr. Zeifert says. “She has a son, but I don’t think he has any clue that she’s having difficulty. People often try to protect their family members.”
Ann Emiko Igarashi Boylan, 66, has Parkinson’s disease. William, her husband of 39 years, is now in his 80s and has heart problems. Recently, Boylan has made a point to include their two adult sons in their health care journey. Currently, the California couple acts as caregivers to one another as needed, like when William had a heart valve replacement operation.
“We have to deal with the idea of aging in partnership,” says Boylan, who is also an advocate for the Parkinson’s Foundation, representing the New York–based nonprofit at events and educating others about the disease. “We have think in terms of what’s going to happen down the road.”
GET ORGANIZED
Boylan maintains a health journal for the two of them because “even if the dosage is on the bottle, it’s good to have it all in one place,” she says. They’ve also talked about selling their home and downsizing while still staying within a quick drive of their sons’ homes. Each has an advance directive and a living trust.
“These documents speed up treatment and describe the kind of care you’d like to receive if you get into a situation where you can’t communicate,” she says. “It can be as simple as ‘I want to be able to look out and see nature,’ or ‘I want people to visit me and talk or pray or play certain kinds of music.’ I don’t like to have an oxygen mask covering my full face, so I wrote that down, too.”
In many ways, Boylan says, she feels healthier now than she has in years. Her tremors seem to be under control, she exercises regularly, and she enjoys going out with friends and reading. She has taken advantage of her stable health to take care of those “just in case” details that she might otherwise have avoided.
“It involves asking questions, a lot of what ifs, but it’s not a negative thing. I stay calm and work through it,” she says.
MAKE A PLAN
Kristen Beatty and her brother managed to resume care for their father after their mother’s death because their parents kept their medical records in filing cabinets and had a small black book listing all of their passwords. While they still had to search for information, there were easily identifiable places to start.
Beatty’s father is now living in an assisted care facility. The siblings have a strong relationship and have roughly divided their father’s ongoing care. She handles the health side of things, while her brother manages the money, bills, and investments. “We also have plans in place for ourselves so that if something happens to us, we don’t leave our families in a bind,” she says.
Beatty’s advice for other families: Have an end-of-life plan that includes everything from thoughts on “Do not resuscitate” orders to preferred funeral songs. Not everyone has to know the details at all times, she adds.
“You don’t have to read it or know it all, but have it all documented so you can pass it on,” she says. “It could be a website. It could be a manila envelope with medical papers. Just let someone know where it is.”
5 Ways to Prepare for the Worst
1. Plan ahead whenever possible. Involve all members of the patient’s support network. Make sure that advance directives, living wills and last wills, and other important documents are completed and kept in a known location. Be open, honest, and realistic about end-of-life wishes and goals.
2. Review current and projected finances. Look at living costs and assets, including existing insurance, to see what changes might be necessary to ensure care.
3. Have a plan, then create a backup plan. Hope for the best but prepare for the worst. That means knowing what your family will do if the primary caregiver dies before the patient.
4. Make use of free services online. Life Happens (http://lifehappens.org) is a nonprofit organization that provides information on insurance-related topics. The Alzheimer’s Association also has a tool at http://bit.ly/Alz-EndOfLife that guides users through important end-of-life issues.
5. If possible, work with a professional. Seek out an attorney, insurance agent, financial advisor, or elder care professional to help with the planning. Legal aid is available for those who can’t afford the cost of a private attorney.
Duopa device among newer treatments for Parkinson’s disease
Until August, Kern Jackson avoided going out in public.
Parkinson’s disease had progressed far enough that the levadopa pills he’d taken since 2008 weren’t as reliable to ease the symptom of his muscles freezing up. In the past two years, he had to take the medicine more frequently as it wore off quickly, leaving him unable to move.
“I was taking pills every two hours, and during the night,” said Jackson, 70, a retired physician who lives in Medical Lake. “It would take 20 to 45 minutes to be effective, then I’d be moving normally for about an hour. It was hard to plan to do anything.”
So in August, Jackson chose to get a newer Duopa device through Dr. Jason Aldred, a neurologist at Northwest Neurological. The Spokane clinic partners with Inland Imaging, where patients go in for an outpatient procedure to make a small incision in the stomach wall and insert a tube in the small intestine.
The external Duopa device has a pump for continuous delivery via the tube of a levadopa gel, contained in a medication cartridge that patients reload once a day into the device.
According to Aldred, the Duopa device first became available in 2015 after U.S. Food & Drug Administration approval, and it’s among a couple of newer developments for Parkinson’s treatment. The clinic also is participating in two clinical research trials that are attempting to slow disease progression.
The day after his outpatient procedure, Jackson saw Aldred at Northwest Neurological to program the system’s medicine dosage. Clinic staff observed Jackson’s movements for a day during office hours to make sure the new system was syncing correctly for his ability to get around.
Jackson now wears the device in a belted pack around his waist, and he said it’s helped him be more active. He and his wife, Diana, have since traveled by airplane and walked on the Centennial Trail.
“I feel much more confident going somewhere,” Jackson said. “I just went to a men’s retreat in Idaho with my son-in-law, and things went well.”
Although estimates vary, about 1 million people in the U.S. live with the disease, according to the Parkinson’s Foundation. Symptoms include tremor, rigidity, extreme slowness of movement and impaired balance.
Levadopa, now used for more than 50 years to treat Parkinson’s, is often considered the most effective for treatment of motor symptoms.
“Levadopa is turned into dopamine in the brain and replaces dopamine,” Aldred said “That’s huge because dopamine is the natural chemical in the brain that’s low in Parkinson’s patients, so we literally have the ability to replace something that’s low to bring about remarkable improvement in movement, stiffness and tremor.
“However, it doesn’t slow the progression. It treats symptoms remarkably for years or decades. Parkinson’s progresses slowly, but it does progress, and it can cause horrible quality of life issues.”
The Duopa device is offered as a choice for some patients with moderate to advanced Parkinson’s if levadopa in a pill form becomes less reliable, Aldred said. Other patients might be candidates for deep brain stimulation, a therapy that’s been around since 1997, he said.
“As the disease advances for moderate to advanced Parkinson’s, the medicine kicks in and wears off,” said Aldred, adding that also long-term, the disease affects other nerves outside of the brain including in the stomach, so medicine is less effectively moved into the small intestine for absorption.
“We call it dose failure,” he said. “That’s actually a big problem; the medicine is sitting in the stomach and doesn’t move. With the Duopa device, the tube mechanically bypasses the stomach and goes into the small intestine, and the medicine is released physically past the stomach.”
Aldred said the Duopa device is new enough that, so far, just over 30 of its clinic patients have one.
“This is a very new treatment and largely people are slow to warm up to it,” he said, adding that some people might have a stigma about having a tube inserted, a procedure that’s sometimes associated with end-of-life issues.
The small amount of tubing that’s external is flexible, Aldred said, and it’s hidden often under clothing. It can be disconnect for up to two hours if needed.
However, Aldred said current treatments, including Duopa, only partially relieve symptoms, so the two research trials are attempting approaches that might slow or stop the disease’s progression.
Both trials are seeking to stem what is thought to damage cells in the brain that regulate behavior, cognition and movement. A main research focus is finding a way to stop or clear out Lewy bodies, which are abnormal aggregates of protein that develop inside nerve cells in Parkinson’s.
“We have some interesting, cutting-edge NIH, Michael J. Fox Foundation-affiliated clinical research trials,” Aldred said.
One is a vaccine trial using anti-bodies in an attempt that might prevent the spread of Lewy bodies in the brain. A second phase of that study started this month involving a handful of clinic patients.
The other trial will test Nilotinib, a FDA-approved medicine used in treatment for a form of leukemia, but with a fraction of the dose applied for patients with mild Parkinson’s.
“This is a medication that may enhance the clearing of Lewy Bodies from the brain that we think is destructive,” Aldred added.
“We’re trying to get to the point before it spreads,” he said. “That’s a novel way of treating Parkinson’s. These two trials if they’re proven to work, which they haven’t been yet, may be safe and effective ways to slow the disease progression or potentially halt the disease progression.”
There’s also a new device that came out this year for deep brain stimulation, Aldred said. “It was developed by St. Jude’s Medical (since acquired by Abbott). We can aim the electrical current more precisely in the brain to get better effect.”
The DBS treatment requires surgery to implant a wire with four electrodes that deliver an electrical current in the brain to regulate abnormal impulses and smooth out “on time” and “off time” experienced by patients as the impact of medication rises and falls.
The DBS treatment and the Duopa device haven’t been studied head to head on whether one is more effective than the other, Aldred said.
“If someone has moderate cognitive issues, we’d never want to do DBS,” he said.
Alternatively, he added that the Duopa device might be a choice for some patients who aren’t comfortable with DBS.
“I tell patients this is a heavy diagnosis, but there is lot we can do, and one of the things is exercise, ” said Aldred, who encourages physical therapy and regular exercise to maintain better movement and quality of life.
Super foods: what to eat to help prevent anxiety in Parkinson’s
We know that people with Parkinson’s can often experience non-motor symptoms such as anxiety and panic disorders. However, there is evidence to suggest that a diet rich in certain nutrients can help alleviate some of these difficulties.
Iron-rich foods
Animal foods with a high iron value include beef, beef liver, pork, poultry, and seafood such as halibut, haddock, perch, salmon, tuna, clams, and oysters. These contain heme iron, which is found in animal meat and is more readily absorbed than plant-derived, non-heme iron. Too much iron can interfere with levodopa absorption, and because these foods are also high in protein, they can block levodopa. If you use levodopa, be sure to take it at least 30 minutes before eating these foods. Fish and seafood are good choices for people with Parkinson’s because they also contain brain-supportive omega-3 fatty acids.
Plant foods high in iron include soybeans, tofu, lentils, spinach, chard, garbanzo beans. These have the non-heme form of iron, which is less well absorbed than heme iron. Acidity helps boost iron absorption, so having lemon juice or vinegar salad dressing, or an orange, in the same meal with beans and leafy greens will help you get the most iron absorption from the plant food.
According to the Food and Nutrition Information Center of the United States Department for Agriculture (USDA), the Recommended Dietary Allowance (RDA) for iron is 8mg per day for men aged 19 and older, 18mg per day for women between the ages of 19 to 50, and 8mg per day for women aged 51 and older.
Food high in vitamin B6
Tuna, turkey, beef, chicken, salmon, sweet potato, potatoes, sunflower seeds, spinach and other dark leafy greens, and bananas are all good sources of vitamin B6. Tuna, beef, poultry, salmon, and spinach are good iron sources also, so these foods provide the benefit of both nutrients.
The RDA of vitamin B6 is 1.3mg for men between the ages of 14 to 50 and women between the ages of 19 to 50. Men above the age of 50 require 1.7mg, while women of the same age need 1.5mg.
Foods rich in vitamin D
There are few foods that contain vitamin D, and of these, salmon is by far the best – a salmon steak of 115g contains 128% of the RDA. Sardines, cow’s milk, tuna, egg yolks, and shiitake mushrooms have smaller but still important amounts. Salmon is a great food to eat two to three times weekly and it’s also a source of vitamin B6 and iron too. Sunlight is a very good source of vitamin D. When sunlight is available, exposing your face and arms for around 10 minutes a day will provide sufficient amounts.
The RDA for vitamin D for all adults between the ages of 19 to 70 years is 600 IU per day. For those above the age of 71 the RDA is 800 IU per day. If taking supplements choose the vitamin D3 form, which is more easily absorbed than the D2 form.
12 Medication Management Tips That May Save Your Life
What can be done to help older adults take medications safely? Take care to avoid some of the more common medication mistakes, such as taking drugs incorrectly or taking more than is prescribed. Pill dispensers, organizers and even reminder services can also be useful tools for some.
That being said, nothing substitutes for responsible caregiver advocacy and being proactive about the drugs we and our loved ones are taking.
Here are some other tips to keep in mind:
1. Ask your provider if the dosage is age-appropriate.
Because of the way our bodies metabolize various drugs as we get older, seniors can be more sensitive to some drugs and less sensitive to others. They are also more likely to experience adverse effects. Double-check with your doctor or pharmacist to ensure that the dosage on the prescription is age-appropriate, and ask if it’s advisable to start with a lower dose and taper upwards.
2. Be aware of medications deemed unsafe for seniors.
The Beers Criteria for Potentially Inappropriate Medication Use in Older Adults, put together by the American Geriatric Society, is a list of medications that older adults should avoid or use with caution. Some pose a higher risk of side effects or interactions, while others are simply less effective. For instance, commonly prescribed sedatives in the benzodiazepine category, like diazepam (Valium), are on the “avoid for certain conditions” list because older adults may be more sensitive to these drugs. Ask your pharmacist if any of your loved one’s medications are on the caution list, and whether you should be concerned.
3. Bring a medications list — or the medications themselves — to the doctor with you.
Take your list of prescription medications — a list of over-the-counter drugs and any herbal supplements you might be taking — and bring it to the doctor’s office with you, or to a pharmacist. The more information your provider has, the more accurately they can pinpoint any potential adverse effects or drug interactions.
4. Check on prescriber behavior in Prescriber Checkup.
Rather alarmingly, Medicare may not monitor prescription safety as effectively or as closely as we might like, as noted in a ProPublica report. “In 2010 alone, health-care professionals wrote more than 500,000 prescriptions for the drug [carisoprodol] to patients 65 and older,” says the report — a drug that was pulled from the European market in 2007 and is on the Beers caution list. If you have concerns about a provider, or if you simply want more information about the drugs prescribed in your area, check ProPublica’s online Prescriber Checkup tool.
5. Closely monitor medication compliance in the cognitively impaired.
If your loved one shows signs of confusion about their medications, or has been diagnosed with cognitive impairment, Alzheimer’s disease, or another form of dementia, do not allow them to manage or take their own medications. If they are simply having trouble tracking their medications, a reminder system may be helpful, but the situation is more serious if your loved one is cognitively impaired. Taking medications incorrectly can be harmful or fatal.
6. Create and maintain an up-to-date medication list.
American Nurse Today says, “keep an accurate list of all medications, including generic and brand names, dosages, dosing frequency and reason for taking the drug.” This can help reduce the risk of polypharmacy.
7. Get a second opinion if you are uncertain.
Not all providers are alike, and there are, unfortunately, some doctors who prescribe medications inappropriately, in excess, or for unapproved uses. If you are concerned about a prescription or a diagnosis, don’t be afraid to seek out a second opinion.
8. Know the side effect profile of your medications.
Knowing the potential side effects and interactions can help you stay alert to any health changes that may occur in response to a new medication or combination of medications. If you do notice health changes, contact a physician right away. Some side effects can mimic other health conditions, including dementia, so make sure to bring a list of your medications to every doctor visit. This will help the provider properly diagnose the problem — and help the patient avoid unnecessary or dangerous medications.
9. Make sure the pharmacy label says why you are taking the prescription.
This is particularly important for older adults who are taking multiple medications, to ensure that they know what each medication is for and how to take it properly. It can also help caregivers police whether their loved one is being given too many medications to treat the same issue, or whether a less scrupulous provider has prescribed a drug for a purpose it wasn’t intended to treat.
10. Minimize the number of providers and pharmacists you use.
Keeping the number of doctors and pharmacies to a minimum is better for you and better for the providers who must coordinate care. “The primary-care provider and specialists must maintain good communication with each other to prevent or minimize problems,” says American Nurse Today. They also advise people to “use only one pharmacy to obtain medications; this adds another level of review to help ensure appropriate dosage and reduce the risk of adverse drugs effects and interactions.”
11. Talk to the pharmacist and ask questions.
If you have any concerns at all about the combination of medications you or your loved one is taking, or how a new medication will affect you, ask your doctor or pharmacist. Learn about the potential dosage, proper storage, side effects and anything else that will help you take medications correctly. You should also talk to your provider if you are thinking of stopping a medication.
12. Tell your provider about any previous adverse drug effects.
This one might go without saying, but if you or your loved one has had a bad reaction to any medication in the past, let your doctor and pharmacist know.
Sleuth-ebrating the Holidays
This holiday season can also be a time to be a loving (but slightly nosey) detective. If you are traveling to visit your loved ones who may be in need of care, the holidays afford an ideal time to assess any changes in their health and well-being.
As any good detective knows, the first step is to follow the clues.
Clue One – Your loved one’s home:
- What condition is it in? Is it a clean, clutter free and safe environment?
- The kitchen is where you can find a lot of telling clues. Look for signs of spoiled food, or an excess of junk/convenience foods compared to the last visit. This may be a sign they have stopped cooking.
- Is the bathroom safe, with grab bars (if necessary) and slip proof mats? Are cords dangling dangerously near running water?
Clue Two – Your loved one’s behavior:
- How do they handle their medication regimen? Are they using expired medications?
- Is your loved one acting withdrawn, or making excuses not to participate?
- Are there noticeable changes to hearing, sight or speech?
- What is their balance like? Are stairs becoming an issue?
- Observe memory capabilities. A good way to check this is to see if a loved one is remembering to pay bills, or keep appointments.
- What are your loved one’s grooming habits like?
Once your detectiving is done and you have a clear picture of your loved one’s living situation, it is time to assess if you need to take further next steps in providing additional care for them.
- What services (appointments, shopping, banking, etc.) do they need access to on a regular basis?
- Is your loved one still able to drive? Don’t just take their word for it.
- What socialization opportunities exist in the community to help prevent isolation and depression?
- Is another family member or close friend living nearby and able to help?
- What local help is available?
Before making any big changes, it’s essential to talk (respectfully) with your loved one about what they see as their greatest needs. Discuss solutions, and then bring some options forward that may work for all involved.
While the holidays may be overwhelmed by gifts and gatherings, it’s also a great time for a long-distance caregiver to take the extra time to observe a loved one’s living situation and address any new needs. The gifts of love can be shared in many ways, even if not wrapped in a box and ribbon.
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