Life

For Caregivers: Respite for Two

Adult day care centers provide a break (respite) to the caregiver while providing health services, therapeutic services and social activities for people with Alzheimer’s disease and related dementia, chronic illnesses, traumatic brain injuries, developmental disabilities and other problems that increase their care needs.

Some adult day care centers are dementia specific, providing services exclusively to that population. Other centers serve the broader population.

One difference between traditional adult respite, both group and in-home care, and adult day care is that adult day centers not only provide respite to family caregivers but also therapeutic care for cognitively and physically impaired older adults.

Benefits of Adult Day Care

Adult day care allows caregivers to continue working outside the home, receive help with the physical care of a loved one, avoid the guilt of placing a loved one in institutional care, and have respite from what can be a “24/7” responsibility.

The caregiver’s loved one can also benefit from adult day care. He or she is able to remain at home with family but does not require 24-hour care from the primary caregiver. Adult day care participants also have an opportunity to interact socially with peers, share in stimulating activities, receive physical or speech therapy if needed, and receive assistance with the activities of daily living with dignity.

Contact the National Adult Day Services Association for a set of guidelines for adult day service programs. The U.S. Administration on Aging Eldercare Locator can also direct you to adult day care centers in your area. Ultimately, word of mouth is often one of the best ways of finding quality adult day care.

How Do I Choose an Adult Day Care Center?

  • Conduct an individual needs assessment before admission to determine your loved one’s abilities and needs
  • Is there an active program that meets his or her daily social, recreational, and rehabilitative needs?
  • Does the center develop an individualized treatment plan for participants and monitor it regularly, adjusting the plan as necessary?
  • Are there referrals to other needed community services?
  • Are clear criteria for service and guidelines for termination established based on the person’s functional status?
  • Is a full range of in-house services offered, such as personal care, transportation, meals, health screening and monitoring, educational programs, counseling and rehabilitative services?
  • Does the center provide a safe, secure environment?
  • Are the volunteers qualified and well-trained?
  • Does the center adhere to or exceed existing state and national standards and guidelines.

Article from Today’s Caregiver.

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Parkinson’s & Driving Safety

The topic of driving can be a sensitive subject for folks with Parkinson’s disease (PD) and their care partners. Fortunately, just because one has a PD diagnosis does NOT necessarily mean that the freedom to drive needs to be taken away. There are many people with PD who continue to drive safely, years after they have been diagnosed.

However, we know that PD progresses over time. Symptoms change. Medications may be added and others stopped. Side effects from medications can change. New health problems may arise that make controlling PD more difficult. Because of these things, driving safety is an issue that requires re-evaluation from time to time. Independence and safety are priorities that should both be honored, while recognizing that sometimes modifications may need to be considered.

Things to consider when deciding whether to drive
Driving plays an important role in an individual’s sense of independence, personal control, and self-reliance, so giving up driving can be very difficult. People living with PD should consider the following questions when deciding whether or not to drive:

  • How is my vision? Can I see well at night? Can I distinguish colors, such as in traffic lights?
  • Would I be putting my passenger (friend or loved one) at risk?
  • How fast is my reaction time? Could I safely avoid a surprise obstacle in the road?
  • Has anyone (friend or family member) commented negatively on my ability to drive?
  • Can I handle multiple activities at the same time (whether driving or not)?
  • Can I effectively and quickly turn the wheel or step on the brake with enough strength?
  • Do my medications for PD (or other conditions) cause side effects like sleepiness, dizziness, blurred vision, or confusion?

These are understandable and important questions to be considered, but often people struggle with how to discuss the issue with loved ones or care partners. Sharing concerns or observations with a trusted friend or family member might be a good place to start.

In some cases, speaking with a doctor or professional, such as an occupational therapist, might be helpful. The American Occupational Therapy Association maintains a searchable database to help locate a Driving Rehabilitation Specialist so you or a family member may receive an assessment (https://www.aota.org/Practice/ Productive-Aging/Driving/driving-specialistsdirectory-search.aspx).

Driver Rehabilitation Specialists work with people of all ages and abilities, evaluating, training, and exploring alternative transportation solutions. Another tool for rating driving ability is offered by AAA at https://seniordriving.aaa.com/evaluate-yourdriving-ability/self-rating-tool/. Local rehabilitation hospitals also sometimes offer assistance in driver evaluation and training.

When the time comes that a person with PD needs to give up driving, it is important to remember that there are options. Public transportation can be an option. Friends and family members are often happy to help, and it is important not to be afraid to ask. Also, look into special shuttle services through local organizations and community centers.

Socialization and staying active help manage Parkinson’s symptoms. You don’t have to stay home once you are no longer driving.

 

Article from February 2020 issue of Dallas Area Parkinsonism Society newsletter.

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Doctors Prescribing Music Therapy

Music has proven time and again to be an important component of human culture. From its ceremonial origin to modern medical usage for personal motivation, concentration, and shifting mood, music is a powerful balm for the human soul. Though traditional “music therapy” encompasses a specific set of practices, the broader use of music as a therapeutic tool can be seen nowadays as doctors are found recommending music for a wide variety of conditions.

1. Music Helps Control Blood Pressure and Heart-Related Disorders

According to The Cardiovascular Society of Great Britain, listening to certain music with a repetitive rhythm for least ten seconds can lead to a decrease in blood pressure and a reduced heart rate. Certain classical compositions, if matched with human body’s rhythm, can be therapeutically used to keep the heart under control. The Oxford University study states, “listening to music with a repeated 10-second rhythm coincided with a fall in blood pressure, reducing the heart rate” and thus can be used for overcoming hypertension.

2. Listening and Playing Music Helps Treat Stress and Depression

When it comes to the human brain, music is one of the best medicines. A study at McGill University in Canada revealed that listening to agreeable music encourages the production of beneficial brain chemicals, specifically the “feel good” hormone known as dopamine. Dopamine happens to be an integral part of brain’s pleasure-enhancing system. As a result, music leads to great feeling of joy and bliss.

It’s not only listening to music that has a positive effect on stress and depression. The Namm Foundation has compiled a comprehensive list of benefits of playing music, which includes reducing stress on both the emotional level and the molecular level. Additionally, studies have shown that adults who play music produce higher levels of Human Growth Hormone (HgH), which according to Web MD, is a necessary hormone for regulating body composition, body fluids, muscle and bone growth, sugar and fat metabolism, and possibly heart function.

For more on how music can be composed to benefit the brain, read about States of Consciousness and Brainwave Entrainment.

3. Music Therapy Helps Treat Alzheimer’s Disease

Music therapy has worked wonders on patients suffering from Alzheimer’s disease. With Alzheimer’s, people lose their capacity to have interactions and carry on with interactive communications. According to studies done in partnership with the Alzheimer’s Foundation of America, “When used appropriately, music can shift mood, manage stress-induced agitation, stimulate positive interactions, facilitate cognitive function, and coordinate motor movements.”

4. Studying Music Boosts Academic Achievement in High Schoolers

Early exposure to music increases the plasticity of brain helping to motivate the human brain’s capacity in such a way that it responds readily to learning, changing and growing. “UCLA professor James S. Catterall analyzed the academic achievement of 6,500 low-income students. He found that, by the time these students were in the 10th grade, 41.4% of those who had taken arts courses scored in the top half on standardized tests, contrasted with only 25% of those who had minimal arts experience. The arts students also were better readers and watched less television.” This goes to show that in the formative stages of life, kids who study music do much better in school.

5. Playing Guitar (and Other Instruments) Aids in Treating PTSD

The U.S. Department of Veterans Affairs shared a study in which veterans experiencing Post Traumatic Stress Disorder (PTSD) experienced relief by learning to play guitar. The organization responsible for providing guitars, Guitars For Vets “enhances the lives of ailing and injured military Veterans by providing them free guitars and music instruction.” Playing music for recovery from PTSD resembles traditional music therapy, in which patients are encouraged to make music as part of their healing process. Guitar is not the only instrument that can help PTSD. In fact, Operation We Are Here has an extensive list of Therapeutic Music Opportunities For Military Veterans.

6. Studying Music Boosts Brain Development in Young Children

research-based study undertaken at the University of Liverpool in the field of neuroscience has light to shed on the beneficial effects of early exposure to music. According to the findings, even half an hour of musical training is sufficient to increase the flow of blood in the brain’s left hemisphere, resulting in higher levels of early childhood development.

The Portland Chamber Orchestra shares, “Playing a musical instrument involves multiple components of the central (brain and spinal cord) and peripheral (nerves outside the brain and spinal cord) nervous systems.  As a musician plays an instrument, motor systems in the brain control both gross and fine movements needed to produce sound.  The sound is processed by auditory circuitry, which in turn can adjust signaling by the motor control centers.  In addition, sensory information from the fingers, hands and arms is sent to the brain for processing.  If the musician is reading music, visual information is sent to the brain for processing and interpreting commands for the motor centers.  And of course, the brain processes emotional responses to the music as well!”

7. Music Education Helps Children Improve Reading Skills

Journal Psychology of Music reports that “Children exposed to a multi-year program of music tuition involving training in increasingly complex rhythmic, tonal, and practical skills display superior cognitive performance in reading skills compared with their non-musically trained peers.” In the initial stages of learning and development, music arouses auditory, emotional, cognitive and visual responses in a child. Music also aids a child’s kinesthetic development. According to the research-supported evidence, a song facilitates language learning far more effectively than speech.

8. Listening To Music Helps Improve Sleep

According to The Center for Cardiovascular Disease in China, listening to music before and during sleep greatly aids people who suffer from chronic sleep disorders. This “music-assisted relaxation” can be used to treat both acute and chronic sleep disorders which include everything from stress and anxiety to insomnia.

9. Playing Didgeridoo Helps Treat Sleep Apnea

 

A study published in the British Medical Journal shows that people suffering from sleep apnea can find relief by practicing the Australian wind-instrument known as the didgeridoo. Patients who played the didgeridoo for an average of 30-minutes per day, 6 days per week, saw significant increases in their quality of sleep and decreases in daytime tiredness after a minimum period of 3-months of practice. Dr. Jordan Stern of BlueSleep says, “The treatment of sleep apnea is quite challenging because there is not a single treatment that works well for every patient. The didgeridoo has been used to treat sleep apnea and it has been shown to be effective in part because of strengthening of the pharyngeal muscles, which means the muscles of the throat, as well as the muscles of the tongue.”

Article from DidgeProject.com.

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Your Parkinson’s tremor printed in 3D

Parkinson’s Life talk to two of the creatives behind ‘Printed by Parkinson’s’, a Berlin-based art collection that saw 3D printers ‘affected’ with the data of six people with Parkinson’s in order to replicate their individual tremors – and visualise the everyday difficulties facing people with the condition


A team of creatives from Berlin, Germany, are combining art, technology and Parkinson’s in an innovative new fundraising project.

As part of the project, organisers asked six people living with Parkinson’s to choose an object that they found difficult to use due to their symptoms. The team then used kinetic and neurological data to create a 3D printer which mirrored their personal Parkinson’s symptoms, and printed each object in bronze – creating art that reflects their struggles with the condition.

We spoke to Reiner Gorissen and Marlon von Franquemont, the two creatives behind the fundraiser.

Hello, thanks for talking to Parkinson’s Life. What’s your story and your connection to Parkinson’s?

Hi, I’m Reinier Gorissen and this is Marlon von Franquemont. We’re creatives who work at INNOCEAN Berlin. We produce advertising campaigns for global brands, but also try to find projects that could help important causes.

We started the ‘Printed by Parkinson’s’ project after a colleague had two family members diagnosed with Parkinson’s. We realised that, like most people, we didn’t know anything about the condition – and we wanted to change that.

How did you come up for the concept of ‘Printed by Parkinson’s’?

R.G: While planning, we learned about the Parkinson’s research projects conducted by Charité, one of Europe’s biggest university hospitals, and decided to put our minds together to support them.

We wanted to create a concept that would educate people about Parkinson’s and support the research at the same time. When we brought the ‘Printed by Parkinson’s’ idea to Charité, they instantly embraced it.

Who worked on this project with you? 

M.V.F: The project brings the medical, tech and art world together. It was overwhelming to see how all involved parties embraced our initiative and worked long hours to make it happen.

Charité involved their patients by recording their data, production company MediaMonks was responsible for the 3D printing and the project’s website and creative content agency Cosmopola produced the photography and film material. As the initiator of the project, INNOCEAN Berlin created all marketing-related assets and organised the exhibition.

How was the data used to create the 3D models?

R.G: First, we recorded the kinetic and neurological data of the participants using electroencephalography (EEG) systems – which monitor electrical activity in the brain – and accelerometers at Charité.

The production company MediaMonks then turned the data into algorithms, devising one for each participant.

After a long period of testing, we managed to 3D print the objects selected by each patient while the printer was affected by their personal Parkinson’s data.

Why did you settle on 3D printing over more traditional art forms?

R.G: Parkinson’s is a very complex condition and most people don’t know how significant the impact of it is on people’s lives. By using technology and art, we were able to break through the clutter and also engage younger audiences. The art objects instantly give people an idea how Parkinson’s affects lives – and invite people to learn the stories behind the objects.

Why did you think using seemingly simple, everyday objects would make an impact on those outside of the Parkinson’s community?

M.V.F: We believed that the collection would be most impactful if each object portrayed a personal story. That’s why we asked participants to name an object that represented a job, hobby or activity that was affected by the onset of their Parkinson’s.

Most people outside the Parkinson’s community don’t know much about the condition. They often think it only affects older people and don’t know that Parkinson’s has more than 40 symptoms. The ‘Printed by Parkinson’s’ collection visualises the daily struggles that people have with simple tasks like using a pen or a camera.

How was the collection received by the general public, the participants involved – and by people with Parkinson’s? 

M.V.F: The response has been great from all directions. The collection was shared on medical, tech and art platforms all around the world and was broadcasted on multiple TV channels in several different languages.

We also received great feedback from those who took part. On top of that, others showed interest in sharing their story – and we hope it inspires more people to be open about their condition as people must keep sharing their story to make the public aware of the condition.

How much money has been raised so far from sales?

R.G: We have received multiple bids, but unfortunately can’t reveal the digits. Let’s just say we’re very proud of the offers – all of which will go towards research at Charité.

Do you have any plans for further Parkinson’s-related art projects or campaigns?

M.V.F: Definitely. In fact, there are some projects on the way already. Hopefully we’ll be able to share them with you soon.

Printed by Parkinsons's

Reiner Gorissen (left) and Marlon von Franquemont (right), the creatives behind ‘Printed by Parkinson’s’.

This collection was exhibited at gallery Alte Münze, in Berlin for one week in July 2019. For more information on the project, please visit the ‘Printed by Parkinson’s’ website.
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“Poor Me”? Or “Lucky Me!”

Laurie Prochnow is a recruiter and a business owner in Wausau. She was diagnosed with Parkinson’s 6 years ago, and she launched a PD Support Group in Wausau in early 2019.

Together with her company, Management Recruiters, Laurie put together a couple of great videos sharing some of the lessons she has learned over the last several years of having Parkinson’s.

 

 

 

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Why some Parkinson’s patients develop harmful addictive behaviours

A QIMR Berghofer study has discovered how the medications given to people with Parkinson’s disease cause some patients to develop addictive behaviours such as problem gambling, binge eating, hypersexuality and excessive shopping.

Medicines that increase dopamine levels in the brain are the cornerstone of treatment for symptoms of Parkinson’s disease. This neurodegenerative disorder damages nerve cells that produce dopamine in the deep structures of the brain.

QIMR Berghofer Medical Research Institute lead researcher and St Andrews Hospital neuropsychiatrist Dr. Phil Mosley said while dopamine replacement therapy was effective for most people diagnosed with Parkinson’s disease, about one in six people treated with the medication developed impulse-control behaviours, such as gambling.

“We found people who developed these addictive behaviours differed in the way their  interacted with dopamine-containing medication, which gave rise to the impulsive behaviour,” Dr. Mosley said.

“None of these people had a history of addictive behaviours before diagnosis and only developed them after they began treatment with dopamine-replacement medications.

“There is currently no way of predicting which individuals are at risk of these terrible side-effects.”

More than 80,000 Australians are living with Parkinson’s disease, with most people diagnosed after the age of 65, although about 20 percent are of working age, according to Parkinson’s Australia.

Dr. Mosley said the study recruited 57 people with Parkinson’s disease from St Andrews War Memorial Hospital in Brisbane, in collaboration with neurologist Professor Peter Silburn.

“We used an advanced method of brain imaging, called diffusion MRI, to reconstruct the connections between different regions of the brain, akin to developing an individualised brain “wiring” diagram for each person in the study,” Dr. Mosley said.

“We asked our participants to gamble in a virtual casino, which gave us a readout of impulsive and risk-taking behaviour in real time.

“By combining data from brain imaging, behaviour in the virtual casino, and the effect of dopamine-replacement medication, we were able to identify people who were susceptible to impulse-control behaviours.

“More broadly, we found a clear link between the strength of the connections in the brain, within circuits that we think are crucial for making decisions and suppressing impulses, and impulsive behaviour, even in people without clinically-significant impulse-control behaviours.”

Dr. Mosley said the study findings indicated that brain imaging and computer-based testing could be used in the future to determine which individuals were at risk of developing these harmful behaviours when treated with dopamine-replacement drugs.

“These disorders are often a second blow to people and their families living with Parkinson’s disease. Some individuals suffer financial problems or relationship breakdowns because of these harmful behaviours,” he said.

“We could offer targeted education to at-risk individuals, or adapt their treatment regimen to minimise the potential harms from these therapies.”

The study’s co-author Professor Michael Breakspear said the findings could also have implications for other psychiatric conditions that are marked by impulsivity, such as ADHD, alcohol and drug addiction.

Article from MedicalXpress.

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‘It is not hopeless’: Parkinson’s disease doesn’t stop Austin duo from making popular art

One day, Verna Earl Hamilton Grice discovered she could not walk up the driveway.

That was the first sign.

Later, she felt tremors on one side of her body.

Ten years ago, she was diagnosed with Parkinson’s disease.

That’s when she stopped painting.

“I got tired,” Verna, 88, says. “I didn’t do it for 10 years. It’s labor intensive. Susan kept on.”

That would be her daughter Susan Grice, 63, who shares Verna’s zeal for making art.

“She focused instead on trying to figure out the illness,” Susan says of her mother. “She went to support groups such as Power for Parkinson’s. They promote exercise.”

Verna: “I was just hanging on.”

Verna, a native of Lake Charles, La., nevertheless made significant progress. A return to painting has helped.

Susan: “Her doctor says she is in the top 1 percent of his patients.”

“I walk really well,” Verna says with a laugh. “If you walk well, they think you are OK. I have my ups and downs. My ups are longer than they were, because I am so busy painting these days. Just looking at the paint seems to help.”

In their airy home studio, Verna and Susan paint together on wood. They seal the paintings so they can be hung outdoors. Their subjects include images inspired by Old Masters, original ideas, nature and abstract arrangements.

As in the past, the mother-and-daughter team enjoys a steady demand for their output, which could be called garden art. They recently staged an exhibition that attracted more than 60 guests to their house and garden in Westover Hills.

“It makes me feel better, I noticed,” Verna says. “How did I start again? My dentist was going out of his way to be sweet to me — I hate going to the dentist — so I brought him one of my pictures. He loved the picture. He had to have two more. They hang in the dentist’s office for others to enjoy.”

“She came home and said, ‘Oh no. I’ve got to get painting. We’re back in business,’” Susan says. “Since then, we couldn’t stop.”

The Grice method

Susan and Verna make 24-by-24-inch paintings on 3/4-inch exterior plywood.

“It’s done directly on the wood,” Verna says. “We prime it and then seal it several times after painting.”

“It’s like making signs,” Susan says. “They last for years and years. We don’t tell the exact formula. It’s a secret. A carpenter friend makes the frames of cedar.”

Mother and daughter come to the project with similar artistic sensibilities.

Susan, former director of psychiatric nursing at Seton Shoal Creek, studied at the Glassell School of Art, the teaching institute of Houston’s Museum of Fine Arts.

As for Verna, she was artistic as a child in Louisiana. She painted a bit in high school. She followed that inclination to Mexico City, where she studied Spanish and art in 1948 and ’49.

“Diego Rivera and Frida Kahlo were very much around,” Verna says. “I remember seeing Diego’s mural at a hotel there.”

A child of the Depression, Verna did not expect much more from life than hard work.

Her father, Vernon Earl Hamilton, took whatever jobs he could land.

“I never knew what to say when they asked, ‘What does your Daddy do?’” Verna recalls. “There were so many things, since it was the Depression. I know he owned slot machines on the side. He put them in little bars around Lake Charles. He sold one to let me go to Mexico.”

Her mother, Ruth McLaughlin Grice, worked as a bookkeeper for an ice company.

“She went to work to get me braces,” Verna says. “Guess what? She was working till she retired. I never got my braces.”

Verna has one sister, Helen Ruth Garman, who at age 84 is a Ride Austin contract driver.

Even Verna’s Mexican adventure came with a practical work goal.

“I was hoping to get a job using my Spanish,” she says, “but couldn’t find one. So I worked for a construction company for a while, then went to Houston. That’s where I met my husband, a young lawyer named Harrison Marion Grice.”

The newlyweds settled down in southeastern Houston and raised three children: Susan, 63, Charles, 61, and Laurel, 54.

Verna did not stop working.

“I sold real estate for a while,” she says. “I was a bilingual secretary in Spain after my husband died and also a legal secretary. I worked for the National Treasury Employees Union and lived in Washington for eight years. I was marching with the union when the older President Bush tried to freeze employees’ salaries to pay down the national debt. I was arrested and handcuffed, stuffed into a paddy wagon and taken to jail. The one thing I remember is that the toilet in the jail is right out in the middle of the room. That’s punishment enough.”

The family moved to Austin’s Northwest Hills in Austin in 1975. She retired in 1996 as the assistant to her union’s president and purchased the Westover Hills home in 2001.

Why paint?

“I just got in the mood,” Verna says of her first adult painting 15 years ago. “I got bored with looking out at those bare fences around the patio. They needed some color. That’s when we started making groups of paintings.”

Susan started painting and selling art right after Verna started in 2004. They’ve sold more than 100 paintings, many of them at places that also sell architectural pieces or items for the garden.

Verna finds that Parkinson’s is only a partial barrier.

“With just about any disability, you can still paint,” Verna says. “If you find someone to help on some things, you can still enjoy the magic of painting.”

“You let me draw straight lines for you sometimes,” Susan interjects. “With her permission and very specific instructions, she will direct me to draw a line. It allows her to still paint, which is fantastic.”

Both Grices promote Power for Parkinson’s, the nonprofit support group that offers free exercise, dance and singing classes at locations in Austin, Round Rock, West Lake Hills and Lakeway.

“I started going when there were just a few things we could do there, and now there are hundreds of activities,” Verna says. “I swim laps. I play bocce ball. I boxed. I decided my body is not made for boxing. Age 88 is too old to dive into the mat.”

Verna does not paint to inspire others, but she’s gratified it might do so.

“I just want people to know that, at 88, you can still have some fun and enjoy life,” Verna says. “A lot of people with Parkinson’s think that this is the end. But you can slow it down. You realize how important your brain is. Don’t get me wrong. It’s a bear of a disease. But it is not hopeless. There are lots of things you can do. Do it, try it — and get creative with it.”

Click HERE to view the artwork. Article from Austin360.com.

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Holiday Help: Relieving Caregivers’ Stress

Who doesn’t feel overwhelmed sometimes by the bustle of the holiday season? Add to that the responsibility of caring for a frail elderly loved one, and burnout is simply a concept waiting to become reality. But wait. If you’re one of the millions of households providing care for a family member or friend, there is hope. Stress doesn’t have to take the starring role in your family festivities this year.

If you’re like the increasing number of Americans who are trying to offer a sense of dignity to your parent(s), include them in seasonal events and help them stay in their own home, safety is your number one priority.

Most accidents happen at home in unsupervised situations. This season, enlist the help of older children or a spouse, playing games with (Great) Grandma and (Great) Grandpa while you change beds, do the laundry and other chores. Instead of decorating to the hilt, keep holiday décor simple. Eliminate the need for extension cords on the floor and “declutter” your notion of decoration: use colorful paper garlands strung high instead of breakable objects placed within reach. Remove anything a child or a frail elderly person may stumble over. Replace candles with bright centerpieces of fruit or flowers. Keep candy to an absolute minimum to prevent sugar highs and lows.

With the emphasis on “good cheer” during the month of December, the options are many. But don’t wear yourself out trying to make the holidays “happen” for everyone. If you don’t get yourself in a situation where you “overdo” you’ll be more alert to hazards—even emotional ones. Holidays bring emotions to the surface because they hold the most intense memories for your loved ones, and some may not be pleasant. You may find that tears fall for no apparent reason, or that a frail elderly parent suddenly seems gruff or annoyed just when you think everything is fine. Sometimes, the emotional stress of the season makes a frail aging parent seem distant, just when you want to draw them close. We never know what precipitates these reactions; we only have to deal with them. That’s not an easy task, but first and foremost, a caregiver must keep her own emotional balance.Set a few guidelines as to what you expect from yourself. From the very start, set your intention to be positive during the holidays, and to respond with calmness to upsetting scenarios. Sure, things may come to the boiling point at times, but the resolve not to react in like manner will bring the most effective results. People don’t intend to be grumpy, distant or to give you a hard time. These behaviors may simply be a way of asking for help. The best way to give it is by remaining patient, offering consistent encouragement, and setting safe boundaries.

You cannot make everyone happy at all times, but you can take responsibility for your own emotional highs and lows. Preserve a few moments each day all for yourself. Take a half-hour break while your children entertain the frail elderly with Christmas music from the 30s, 40s and 50s or interview their grandparents about favorite holiday memories. You might enlist the services of a home-help organization to do some of the household chores while you go grocery shopping or simply take a walk. Professional caregivers can also help alert you to signs of stress or special needs that you might not recognize on a day-to-day basis, curtailing accidents or emotional spills.

Keep in mind that a frail person may tire more easily during the holiday season, need more sleep as the days grow shorter, and also need their own “space.” Ask for their help; ask them to let you know what they need and how they want to celebrate. Their answers may surprise you. Above all, an older frail person may crave our respect and our admiration. When we praise the good things they’ve accomplished in life, make certain they know that we appreciate their legacy, and tell them we’re happy they’re with us, things will be a lot easier. If they seem only to complain more, well, just grease the wheel with a little praise for yourself. Send positive messages to yourself out loud and mix in a few more affirmations for them.

The holidays are a great time to slow down instead of speed up. Think about all the things you can let remain undone instead of all the things you need to do. Give yourself a challenge to match the tempo of your frail elderly relatives or friends, and see if you don’t enjoy the season more. And after all, isn’t that what the holiday season is all about?

Article from Today’s Caregiver.

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Scientists identify early signs of Parkinson’s disease years before symptoms develop

Scientists at King’s College London have identified the earliest signs of Parkinson’s disease in the brain up to 20 years before patients present with any symptoms. The findings challenge what had so far been understood about the disease and could lead to new screening tools for identifying high-risk patients and new treatment approaches, although larger studies and more affordable scans would be needed first.

Brain scans of high-risk patients showed a loss of serotonin function before movement disorders developed. The serotonin system regulates mood, sleep and movement.

Parkinson’s is the second most common neurological condition and affects about 145,000 people in the UK. The main symptoms are movement problems such as shaking and tremors, cognitive disorders, depression, and difficulty sleeping, but the disease is known to establish itself in the brain long before symptoms appear and a diagnosis is made.

Studying the early stages of the disease to find treatment approaches with the potential to slow progression represents a huge challenge to researchers, who have so far linked the condition to reduced dopamine levels in the brain. Although no cure for the disease exists, current treatments are focused on controlling symptoms by restoring dopamine levels.

However, the current study shows that changes in the neurotransmitter serotonin occur very early in Parkinson’s disease. These changes could serve as an important early warning signal that a person is at risk.

Serotonin transporter proteins are the first to change in Parkinson’s disease

For the study, Politis and colleagues scanned the brains of 14 people in their 20s and 30s who have a rare genetic disorder that means they are almost certain to develop Parkinson’s once they reach their late forties or fifties.

Parkinson’s disease is characterized by a build-up of the protein α-synuclein in the brain. While the cause of this protein accumulation is usually unclear, genetic mutations are known to cause the problem in a minority of cases.

The subjects, who were all from remote villages in Greece and Italy, have rare autosomal dominant point mutations A53T in the α-synuclein (SNCA) gene. The SNCA mutation originates in villages located in the northern Peloponnese in Greece and is also found in people who moved to nearby areas in Italy.

Half the subjects had already been diagnosed with Parkinson’s, while the other half had not yet displayed any symptoms, making the group perfect for analyzing how the disease progresses.

“Given the known neurochemical changes in the serotonergic system and their association with symptoms of Parkinson’s disease, we hypothesised that carriers of the A53T SNCA mutation might show abnormalities in the serotonergic neurotransmitter system before the diagnosis of Parkinson’s disease, and that this pathology might be associated with measures of Parkinson’s burden,” write the team in the journal Lancet Neurology.

After flying the 14 participants to London for brain imaging and clinical assessment, Politis and team compared the subjects’ data with 65 patients with Parkinson’s disease of a non-genetic cause and 25 healthy individuals.

They found that the people who were destined to develop Parkinson’s had sharply reduced levels of serotonin, which controls many brain functions including mood, cognition, movement, wellbeing and even appetite.

The serotonin system started to malfunction in the subjects with Parkinson’s long before symptoms such as movement problems started to appear and before abnormalities in the dopamine system arose.

“Our findings provide evidence that molecular imaging of serotonin transporters could be used to visualize premotor pathology of Parkinson’s disease in vivo,” writes the team.

Further research ‘could change countless lives’

The brain scans took the form of PET scans, which are difficult to perform and expensive and the researchers say that further work to develop the technique is needed to make the imaging method simpler to carry out and more affordable for use as a screening tool.

Professor of medical imaging at University College London, Derek Hill, says that although the study provides valuable insights, it also has some limitations.

He points out that the results may not scale up to larger studies and that the highly specialised imaging method is limited to a very small number of research centers so could not yet be used to help diagnose patients or evaluate candidate treatments in large studies.

However, the research does suggest that trying to treat Parkinson’s at the earliest possible disease stage is likely to be the best approach to preventing the rising number of people whose lives are destroyed by this hideous disease, says Hill.

Research manager at the charity Parkinson’s UK, Dr Beckie Port, concludes: “Further research is needed to fully understand the importance of this discovery – but if it is able to unlock a tool to measure and monitor how Parkinson’s develops, it could change countless lives.”

Article from News Medical Life Sciences.

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A Wearable Device Is Changing the Way Clinicians Manage PD

A recently published study in Functional Neurology suggests that using data from an FDA-cleared watch-like device called the Personal KinetiGraph (PKG) provides an objective and more effective approach to assessing motor fluctuations in patients with Parkinson’s disease (PD) compared with patient-reported motor diaries.

“Motor fluctuations, including ‘wearing-off’ and dyskinesia, are associated with increased disease severity and disability, and PD patients experience decreased quality of life as their response to medical therapy becomes less predictable,” said Echo Tan, MD, a neurologist at Cedars-Sinai Medical Center and lead author on the publication. “Effectively managing motor fluctuations is complicated by the lack of objective assessment tools, leading patients and physicians to rely on direct observation in the clinic or patient reports, which may be unrevealing, incomplete and unreliable. The results of our study demonstrate that the fluctuation score calculated by the PKG system provides objective quantification of motor fluctuations.”

This may help improve the routine management of Parkinson’s patients and enable more objective assessments in clinical trials of Parkinson’s therapies, she said.

Tan told MD+DI the study revealed that the PKG system (developed by Global Kinetics) and the algorithms for calculating a fluctuator score can differentiate between non-dyskinetic and dyskinetic patients. The fluctuator score does not, however, have the sensitivity to detect mild wearing off because no prior study divided patients into more than a binary system. On the plus side, Tan said the PKG also can distinguish between exercise and dyskinesia on the graphical data obtained.

The fact that the fluctuator score was not sensitive enough to detect mild wearing off did come as a surprise to the investigators, but the fluctuator score did show progressively increasing average score range between the four groups, Tan said.

During a BIOMEDevice Boston 2019 panel discussion, Teresa Prego, vice president of marketing and marketing development at the Melbourne, Australia-based company, said the integration of consumer wearables with wearables for chronic disease management has changed the delivery of care and where that care is delivered.

“If I look at the PKG-Watch, for example, in Australia where there are great geographic distances between people with Parkinson’s and a care provider. They are using this remotely,” Prego said. “So you’ll go and see your clinician, have an assessment, but then for the next year, there’s really no need to go into the clinic. You can make care decisions remotely. They’re wearing the vehicles to get that information to the clinician.”

“This implies that it is better at detecting moderate to severe fluctuations,” she said.

Most importantly, the device has changed the way Tan and her colleagues assess and monitor patients with Parkinson’s disease.

“The PKG system can provide additional information about fluctuations that a clinic visit and history can not reveal,” she said. “This is particularly useful for those patients who are not able to provide a good history – such as those with a language barrier or cognitive impairment. It can show true objective levodopa responsiveness, motor fluctuations, daytime somnolence, and medication compliance. “It can be an important triage mechanism for a referral to a movement disorder specialist, or for an advanced surgical therapy referral. It has provided another objective source of information for our clinicians in deciding how to change medical management. Patients also report that the medication reminder function on the device helps them with medication compliance, thereby also enhancing their motor function as well.”

Parkinson’s disease patients typically respond well to medical therapy in the first few years of their disease, but about 40% of the patient population develops fluctuations of response to levodopa and dyskinesia after four to six years of treatment. That percentage jumps to 70% after long-term treatment of nine years or more, according to Global Kinetics. The company said it developed the PKG system to address the lack of objective measurement tools for movement disorders and quantifies the kinematics of Parkinson’s symptoms, including tremor, bradykinesia, and dyskinesia. An algorithm translates the raw data from these assessments into a fluctuation score that can distinguish between patients with motor fluctuations and those without.

The study investigators correlated PKG fluctuator scores (FS) with clinical motor fluctuator profiles in a case-controlled cohort of the study that included 60 patients attending the Movement Disorders Clinic at Cedars-Sinai Medical Center in Los Angeles, CA. Of the 60 patients in the study, six had incomplete data and were excluded from analyses, the company noted.

Here are some key findings from the 54 subjects who completed a six-day PKG trial and completed a standardized motor diary:

  • Based on Wearing Off Questionnaire (WOQ9) and Movement Disorders Society-Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) Part IV scores patients were categorized based on the presence and extent of fluctuations, as follows:
    • Non-fluctuators (NF), N = 14
    • Early fluctuators (EF), N = 15
    • Moderate fluctuators (MF), N = 15
    • Troublesome fluctuators (TF), N = 10
  • The groups varied significantly in terms of disease duration, which was progressively longer with increasing severity of clinical fluctuation and PD dopamine medication measured as levodopa equivalent dose (LED).
  • LED was more than double in patients with troublesome fluctuations compared to those without fluctuations, while patients in the groups including early and moderate fluctuators reported equivalent daily dosages.
  • MDS-UPDRS score increased significantly with the severity of fluctuations, with the highest scores recorded in those with troublesome fluctuations.
  • Patients had a higher tendency to return the PKG than the motor diary (88% vs. 65%).
  • 50% of the patients in the troublesome fluctuator group were excluded due to incorrect diary completion.
  • Compliance with the motor diary improved with decreasing severity of fluctuations.
  • PKG fluctuation score significantly differentiated EF and TF (p = 0.01), as well as dyskinetic and non-dyskinetic subjects (p < 0.005). In contrast, motor diaries could not distinguish the four study groups on the basis of average OFF time, while average time with dyskinesia distinguished NF and MF but did not distinguish among all four groups.
  • PKG identified high levels of dyskinesia in patients who denied having dyskinesia.

The study authors conclude that the data support the use of the PKG fluctuation score as an objective tool for capturing and quantifying motor fluctuations as a mechanism for triaging PD patients. They also note that the PKG transcends language and cognitive barriers and time constraints in the clinic, which are challenges to obtaining accurate patient symptoms to effectively adjust PD treatment.

The main barrier to adoption for products like these is reimbursement, Prego noted.

“Capturing this data and utilizing the advent of these consumer technologies to help manage chronic disease, it’s pretty interesting,” she said. “I think that our traditional ways of reimbursing for medical care have not quite caught up to where the development of consumer wearables has taken us.”

Article from MD+DI.

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