We recently sat down with Andrea Williams from Milwaukee Radio Group. Gary Garland, WPA’s executive director, and Anna Warren, who lives with Parkinson’s, were featured.
Take a listen here:
WPC Launches Dual Language Webinar Series
The World Parkinson Coalition is headed to Spain for the 6th World Parkinson Congress from June 7-10, 2022. In order to help prepare delegates who live with Parkinson’s or care for someone with Parkinson’s, they are launching the first ever WPC dual language webinar series in English and Spanish. Each topic covered is a topic that people with Parkinson’s have identified in survey data that they want or need more information to better understand and to be able to make more informed decisions around treatment options.
We want our community members to live their best possible lives, but also to be able to articulately speak about Parkinson’s. The more they know about this disease, the better they can explain their needs to their healthcare team and better educate their families and communities.
Each set of webinars will use bi-lingual Parkinson’s experts. These experts will present and take questions in two webinars back to back. The first webinar will be in English. Once this session ends, they will take a short break and then will give the same talk in Spanish. We believe that it’s important for people to hear about their disease and treatment options in their native language directly from the experts.
6 Ways to Be a Great Long-Distance Caregiver
At some point, you may end up being a caregiver for one of your senior loved ones. Whether your parent or your grandparent needs your assistance, you might be wondering if you can fulfill this role without moving them into your home or relocating to be closer to them. Today, it is easy to be a long-distance caregiver for a loved one who is still able to maintain a certain degree of independence but may have limited mobility or need someone to keep them on track with their medication schedule and regular doctor’s appointments.
Of course, some seniors with conditions like dementia or Alzheimer’s will need daily, in-home care, but for seniors with conditions like Parkinson’s, support from a long-distance caregiver can be extremely helpful. If you are about to take on long-distance caregiving responsibilities, here are a few tips to help you fulfill your loved one’s needs while living in another city or state.
Navigating Medicare
If you are becoming a long-distance caregiver for your senior loved one, it’s crucial for you to understand the Medicare system. You and your loved one should be aware that Medicare has an Annual Election Period from October 15 through December 7. If your loved one needs to make changes to their Medicare plan, this is the only time of year that they can do it, so make sure that you are prepared with all of the necessary paperwork before by mid-October. This checklist should include their Medicare card, their previous medical bills, and other documents.
Both you and your loved one should also discuss options for long-term care in an assisted living facility if it becomes necessary. Since Medicare does not cover extended stays in assisted living facilities, you should familiarize yourself with Medicaid and what kind of coverage your loved one would be eligible for.
Are you concerned that your loved one will not be able to advocate for their own healthcare needs in the future? Talk to them about naming a trusted relative as power of attorney.
Schedule Regular Check-Ins
Even if you have to travel to see your loved one, it’s important to visit them on a regular basis so that you can see how they’re doing. Yes, you can call them or video chat with them a few times each week to get an idea of how things are going, but when you spend time with them in person, you’ll be able to get a read on how they’re really feeling. If you can’t see them as often as you would like, ask another family member to check in on them sometimes.
Assist With Home Modifications
Although your loved one may be perfectly capable of managing most of their own daily tasks, they may not be able to move around their home as easily as they did in the past. For example, a senior who recently had a hip replacement might be unable to walk up the stairs, while someone with Parkinson’s may feel more comfortable bathing with a shower chair.
If you think that your loved one would benefit from certain home modifications, recommend a reputable contractor. This will give you peace of mind when you’re not physically around to help them.
Medical Alert System
A medical alert system is a must for any long-distance caregiver and their loved one. It will notify you if your loved one needs immediate medical attention.
According to PCMag, seniors can choose from several varieties of medical alert systems, including wearable devices like bracelets or necklaces, fitness trackers, cellular alert systems, and more. Choose one that works for your loved one’s lifestyle.
Digital Pill Dispenser
Many seniors take some kind of medication to manage a chronic medical condition. Whether your loved one takes medication for Parkinson’s or high cholesterol, you should make it a point to ensure that they are taking their pills on time.
You may want to set up a digital pill dispenser for your loved one. A digital pill dispenser will notify you when your loved one takes their medication, so you can get in touch with them if they forget. According to GlobalRPh, seniors who use these dispensers are more likely to take their medications as prescribed. If they frequently forget to take their medication, you can ask their doctor for help to remedy the situation.
Hire a House Call Service
Yes, you’ll want to stop by and visit your loved one when you have the chance. But what if they need medical attention, and you’re not there to assist them? Or what if they have a doctor’s appointment scheduled, but they’re not able to drive safely?
Hiring a house call service can fill in the gaps when you’re not around. On house calls, doctors can provide many beneficial services, and your loved one can receive care in the comfort of their own home.
Whether you are moving in with a loved one to help them or handling these responsibilities from afar, becoming a caregiver can be challenging. Thankfully, the technology we have today makes it possible to look out for your senior loved one’s best interests, even when you can’t see them every day.
Claire Wentz is a contributor to Caring from Afar. For more information, visit caringfromafar.com.
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.
‘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.”
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.”
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.”
Turn, stop, then sit: A research-based guide for Parkinson’s patients
Tel Aviv University team studies why patients with Parkinson’s disease have difficulty transitioning from walking to sitting, leading to greater instability and falls
Parkinson’s Awareness Posterboards
In addition to TV, RADIO, PODCASTS, we also had BILLBOARDS around southeastern Wisconsin, and POSTERBOARDS at 34 gyms, clinics and YMCAs across the state!
We also received official proclamations declaring April as Parkinson Awareness Month from Governor Evers, and the mayors of Milwaukee, Madison, La Cross, Wausau and Appleton.
Recent Comments