PD | Wisconsin Parkinson Association

Improving Fine Motor Skills

May 1, 2021 Education, Exercise

A loss of fine motor skills is a common symptom of neurologic conditions. Try these creative ways to improve dexterity or adapt to changes.

Eight years ago, Schuetz’s creative passions were threatened when he was diagnosed with Parkinson’s disease and began experiencing worsening tremors in his right hand. Eventually his writing diminished, as did the beautiful lettering he once was so proud of. The loss was a wake-up call, says the 66-year-old resident of Timonium, MD.

“I have a lot to lose if I let this disease take away my hand dexterity,” says Schuetz. “Not only the sense of feeling productive, but a bit of my identity, too. It’s important to keep my hand skills up to par.”

Decreased Dexterity

Parkinson’s disease, with its tremors, freezing, and stiffness, is not the only neurologic condition that can cause hand and finger difficulties like Schuetz’s. For people with essential tremor, the shaking worsens with activity. Those with multiple sclerosis (MS) often experience lack of coordination and hand weakness. Dystonia, a movement disorder that causes uncontrollable muscle contractions, can result in twisted posture and cramping, which can affect hand dexterity. Neuropathies may cause numbness and weakness. And about eight out of 10 stroke survivors experience weakness on one side of the body, including the hand, according to a 2014 study in the Journal of Neuroengineering and Rehabilitation.

For people with MS, trouble with dexterity can happen at any stage of the disease, says Michael J. Olek, DO, associate professor of neurology at the Touro University Nevada College of Osteopathic Medicine in Henderson, NV. “Patients may have trouble with handwriting, using keyboards, and preparing meals.”

Dearth of Studies

Research on how to improve fine motor skills affected by neurologic disorders is minimal, especially compared with research on aerobic exercise, says Lisa M. Shulman, MD, FAAN, distinguished professor in Parkinson’s disease and movement disorders at the University of Maryland School of Medicine.

Patients often worry more about improving their walking and balance and less about improving dexterity, Dr. Shulman says. “I think that’s because there are many workarounds for weak hands.” For example, people with poor fine motor skills can buy clothing with fewer buttons and zippers and shoes with easy fasteners, she says. They can also pick up prepared meals so they don’t have to cook.

Still, it’s important to focus on dexterity, Dr. Shulman says. She and patients like Schuetz offer the following advice for retaining dexterity or adjusting to its loss.

8 Ways To Address Dexterity

Talk to your doctor. Patients are more likely to tell their doctors about problems with walking than loss of dexterity, says Dr. Shulman. “What I’ve observed is that patients who exercise are almost always using their larger muscles, especially in the lower body, when using a treadmill or stationary bike, which preserves lower body function. Meanwhile, their fine motor dexterity disproportionately worsens.” She encourages all patients to inform their neurologists and health care team about any loss of fine motor skills and ask for help in improving and maintaining function.
Work with an occupational therapist. Physical therapy and speech therapy are more commonly part of a treatment plan than occupational therapy, says Dr. Shulman. “It’s important that neurologists encourage more patients to engage in occupational therapy.” It helps enhance independence, productivity, and safety in all activities related to personal care, leisure, and employment, says Kathy Zackowski, PhD, OTR, senior director of patient management, care, and rehabilitation research at the National Multiple Sclerosis Society.
Consider writing aids. For many people, the simple task of signing a check or restaurant bill or writing a to-do list becomes problematic. To make writing easier, use a pen grip or fatter pens, advises Rick Schrader, 64, a former software salesman in Herndon, VA, who has hereditary ATTR amyloidosis, a rare condition that affects his nerves and hand mobility. His hands get cold easily and lose sensation, but he still balances his business checkbooks every Saturday. “I don’t write fast anymore, but if I take my time I can still write clearly.”
Write mindfully. Writing quickly and unthinkingly may result in small, cramped handwriting and tightness in your hand, said Dr. Zackowski. “Try not to rush your writing, and switch to print instead of cursive. Using lined paper provides a guide and forces you to use bigger letters, which helps keep writing more legible.” She adds that using a computer keyboard may be easier if you don’t mind typing. And for those who are used to typing but now find it difficult, many keyboard modifications are available, including a key guard that helps users press the key they want without accidentally pressing other keys.
Use adaptive devices. For assistance when getting dressed, you can use reaching aids, button hooks, zipper pulls, Velcro shoe fasteners, or shoe horns, says Dr. Zackowski. To help with cooking and navigating the kitchen, she recommends tools such as nonskid placemats, utensils with oversized or angled handles, and rocking T knives, which cut food using a rocking motion. In the bathroom, Dr. Zackowski suggests getting a shower chair and a nonskid bath mat and installing grab bars. For grooming, Schrader uses an electric toothbrush and razor. Others may want to install a hands-free hairdryer on the wall or vanity.
Try different utensils. Poor dexterity can make eating with a fork difficult, says Kathy Villella, who has primary progressive MS. Whenever she eats in a restaurant, Villella orders food such as ravioli that is easy to pick up with a spoon. John Martin, 82, of Independence, MO, who was diagnosed with essential tremor in 2008, uses weighted spoons and knives and eats with his left hand because his right hand is more affected by tremors.
Keep fit. Staying active is the key to maintaining function and dexterity, says Carolee J. Winstein, PhD, PT, director of the motor behavior and neurorehabilitation laboratory at the University of Southern California in Los Angeles. “Work with your doctor and therapists to find a fitness and exercise plan that will help you maintain function in your hands and fingers.” Schuetz practices yoga, which he says helps him maintain strength and dexterity in his arms and hands.
Improve fine motor skills. To keep his fingers flexible and loose, Schuetz kneads therapy putty, a thick Play-Doh-like paste that varies in pliability from easy to hard. In addition to practicing yoga and kneading therapy putty, Schuetz continues to draw and paint. He says gripping the pencils and paintbrushes strengthens his fingers.

Schuetz also makes rings out of spoons, a hobby he started in the 1970s. Today, it provides another way to stay physically and creatively engaged. He hopes to move beyond rings into small bronze sculptures of yoga poses. “I want to bring together my two main interests—art and yoga—and keep my hands busy and happy.”

Article from Brain & Life Magazine.

Spinal Cord Stimulation as PD therapy

May 1, 2021 Research

A new study finds that spinal cord stimulation could represent an alternate therapy for people with Parkinson’s disease that is resistant to conventional treatments. The researchers claim that this emerging technology may help decrease pain and improve mobility.

Close to 1 million people may be living with Parkinson’s disease in the United States. This long-term degenerative disorder results from damage to nerve cells in the brain that produce dopamine.

As the symptoms of Parkinson’s develop, a person may first experience a tremor in one hand and stiffness elsewhere in the body. The four key symptoms are:

a tremor
stiffness or tightness in the arms, legs, or elsewhere in the body
slowed movement and difficulty initiating and coordinating movement — possibly presenting as a loss of facial expression or a slow, stuttering walk
difficulty with fine movements, such as doing up buttons

Ultimately, a person experiences problems maintaining balance, and some people with Parkinson’s also develop dementia. Certain people only develop motor symptoms and others have cognitive symptoms, and doctors are still unsure why this is.

Some people refer to dopamine as the “feel-good” hormone or chemical messenger. It has various roles, including in movement coordination, and it is an active player in the brain’s reward system.

Most people with Parkinson’s also develop at least one nonmotor symptom. The most common of these are sleep disturbances, a loss of smell, pain, constipation, and excessive sweating.

People may also experience anxiety and neuropsychiatric symptoms, such as depression, apathy, or psychosis.

This wide array of symptoms can affect relationships and cause people with Parkinson’s to have lower self-worth and lose their sense of identity.

While the cause of Parkinson’s remains unknown, prescription treatments for dopamine deficiency and deep brain stimulation (DBS) are the gold-standard approaches.

But dopamine treatment can cause side effects, such as dyskinesias, involuntary twisting movements of the body. These usually diminish as the drug wears off. Other adverse effects include gastrointestinal disturbances, hallucinations, anxiety, and muscle fatigue.

Meanwhile, DBS can cause brain bleeding, infection, and seizures.

Given the urgent need for treatments that alleviate Parkinson’s symptoms with minimal risks, a group of researchers has now investigated an alternate approach: spinal cord stimulation. They have published their findings in the journal Bioelectronic Medicine.

Assessing an alternate therapy

The researchers set out to determine whether spinal cord stimulation could be a singular therapy for Parkinson’s disease and a salvage therapy, in people for whom DBS is increasingly ineffective.

The study included 15 participants, with a mean age of 74 years. On average, they had received the diagnosis of Parkinson’s disease 17 years earlier.

Eight had undergone DBS previously, and the others had only received medication, including pain relievers, as Parkinson’s treatment.

All experienced chronic pain that was resistant to pain relief medication and changes in their treatment for the disease. When a particular nerve was involved, drugs called nerve blocks had been ineffective.

Once the study had begun, electrodes were surgically implanted under the participants’ skin near their spines.

The participants could choose to receive mild electric currents in three stimulation modes: continuous tonic stimulation, continuous burst stimulation, or a cycling mode with burst stimulation, which provided stimulation for 10–15 seconds at a time, separated by pauses of 15–30 seconds.

The researchers observed that the 15 patients experienced “significant improvement” after using the spinal cord stimulator device.

Based on the visual analog scale of pain intensity — the seven patients who had never received DBS experienced a 57% reduction, on average. For those who had received DBS in the past, the average reduction in pain intensity was 61%.

In addition, the researchers found that participants who opted for the cycling mode experienced, on average, a 67% reduction pain, using the same scale. By comparison, those who chose continuous burst stimulation had, on average, a 48% reduction in their pain scores.

Of the 15 patients, 11 had been able to complete a 10-meter walk before and after the study. After the stimulation, eight people (73%) in this group showed an average improvement of 12% during their 10-meter walks. The researchers used these walks to assess the participants’ mobility and gait.

They also used a “timed up-and-go” test to measure how long it takes a person to get up from a chair, walk 3 meters, turn around, walk back to the chair, and sit down. Among the 11 participants who completed this test, seven (64%) showed improvement in their completion times.

The patients who chose a continuous burst pattern had an 18% improvement in their timed up-and-go scores. However, those who chose the cycling mode had a 7% worsening in these scores.

While many of the results seem promising, it is important to note that spinal cord stimulation carries some risks and may cause complications, including bleeding at the site of insertion.

The researchers also acknowledge that their study design had a limitation: They were unable to determine whether the improvements in scores stemmed from the stimulation itself or the resulting decrease in pain, which allowed for more mobility.

The team of researchers, based in the U.S. and Japan, observe:

“Spinal cord stimulation is an emerging technology that can potentially be utilized to treat both the motor and nonmotor symptoms, such as pain, that patients with Parkinson’s disease deal with on a daily basis.”

Another limitation involved the fact that the patients did not receive the spinal cord stimulators in the exact same location, due to differences in how their pain presented. Also, not every patient was able to return and complete the mobility tests, which reduced the already small sample size.

In addition, this small study did not include a control group, so some changes in pain scores could result from a placebo effect.

This research should thus be regarded as a proof-of-concept study. Further evaluation in larger trials is needed.

Finally, some researchers involved in this study have disclosed potential conflicts of interests due to affiliations with medical device companies and pharmaceutical companies, including Medtronic, Abbott, Boston Scientific, Kyowa Kirin, Boehringer Ingelheim, AbbVie, and FP Pharmaceutical.

Article from Medical News Today.

Best Workout for Brain Health

May 1, 2021 Exercise

We know that exercise is stellar for brain health, and a good sweat can even help generate new neurons in the hippocampus—aka, the brain region associated with memory, learning, and emotions. But when it comes to the different types of movement—running, squats, yoga, et al.—does one workout reign supreme?

Of course, any type of movement that gets your blood flowing is brain-healthy—we like to say here at mbg, the healthiest exercise for you is the one you love. But if neurologists Dean Sherzai, M.D., and Ayesha Sherzai, M.D., had to pick a favorite? Well, it would be stairs.

The best exercise for brain health, according to the Sherzais.

In terms of growing BDNF (brain-derived neurotrophic factor), a molecule that can actually grow brain cells, “leg strength is by far the most important,” notes Dean. In fact, research shows that using the legs, particularly in weight-bearing exercise, sends signals to the brain that are crucial for producing healthy neural cells. Another 2015 study showed that out of 324 healthy older women, those with stronger leg power had fewer brain changes associated with cognitive aging after 10 years. “It’s almost like bigger legs, bigger brain,” Ayesha adds.

So what, specifically, makes stairs so sublime? Well, not only do they target leg strength (a nod to the research mentioned above), but there’s also an aerobic component to it. Many experts believe aerobic (read: cardio) exercise is the best for your brain since it increases your heart rate, which means it pumps more oxygen to your body and brain. “I think [stairs] may be one of the healthiest exercises that I can think of,” Dean says.

How long should you climb stairs?

You may be thinking: How long should I climb stairs to reap these benefits? According to the Sherzais, any amount that gets your blood pumping is great for brain health—so the specific time may vary depending on your personal workout habits.

Of course, you can calculate just how much your heart rate increases (with wearable monitors and the like), but in case you don’t have that tech on hand, Ayesha recommends noticing when you’re out of breath. “As soon as you feel that you have difficulty finishing a sentence, you’re panting, and you’re breaking a sweat, I think that’s a great place to be,” she notes. “That’s a great place where your BDNFs are flushing your body.”

Although, if you do choose to climb stairs (without a machine, we should add), be super careful trotting down: “There’s more damage to the menisci and the ligaments going down,” Dean notes. So be gentle during your reps.

The takeaway.

While the Sherzais love a good stair workout for brain health, just remember that the “healthiest” exercise is the one you love—because that means you’ll stick to it consistently. If that happens to be a nonaerobic exercise, like yoga, so be it! You can certainly find some research to tout its positive effects on the brain, too.

Article from Mind Body Green.

March 2021 Activity Calendar

March 9, 2021 Community Outreach, Exercise, Life

Check out this activity calendar to keep yourself active and engaged this month!

Stress Linked to Harsher Parkinson’s Symptoms, but Mindfulness May Help

March 1, 2021 Life, Research

People with Parkinson’s disease experience more stress than those without this disease, and high stress levels associate with a worsening of symptoms, research based on a patient survey reported.

Mindfulness, a practice of maintaining a heightened state of awareness of thoughts and feelings, may help to lower stress in people with Parkinson’s, especially anxiety and depressive feelings, it also reported.

These findings were in the study “Stress and mindfulness in Parkinson’s disease – a survey in 5000 patients,” published in npj Parkinson’s Disease.

A team led by researchers in the Netherlands sent out a survey through The Michael J. Fox Foundation’s Fox Insight program. The survey asked a variety of questions about stress, Parkinson’s, and related factors.

Survey answers were returned by 5,000 patients and by 1,292 controls, mostly relatives, spouses, or friends of patients who did not have Parkinson’s. Patients’ mean age was 67.3, their average disease duration was 5.9 years, and 48.6% were women. Among controls, the mean age was 60.8 years, and 78.0% were women.

Most survey respondents (93%) were white, and most (82.6%) lived in the U.S. Of note, not all survey respondents answered every question; the researchers analyzed data that were available.

Analyses demonstrated that perceived stress was generally higher in people with Parkinson’s than in controls. This effect was also “much larger for men than for women,” the researchers wrote.

Parkinson’s patients also scored higher than controls on measurements of anxiety and depression, and lower on dispositional mindfulness (a trait that allows a person to be aware of the present moment, even during ordinary tasks). These differences were all independent of age or sex.

Among patients, higher stress scores associated with worse symptoms for all symptoms assessed (including sleeping problems, depression, involuntary movement, and slowness of movement.)

The symptom most affected by stress was tremor: 81.8% of patients reported a worsening in tremor during periods of stress.

“It should be noted, however, that PD [Parkinson’s disease] patients may perceive externally observable symptoms such as tremor more easily than slowness of movement or muscle stiffness, which could (partly) explain the difference between tremor and other motor symptoms,” the researchers wrote.

Patients who reported higher stress levels were also found to be more likely to report lower scores related to quality of life, self-compassion, and dispositional mindfulness. Stressed patients were also more likely to show high scores related to rumination (continuously thinking about the same thoughts, which are often sad or dark).

In free-text portions of the survey, patients commonly stated that stress worsened their cognitive and communication difficulties, and heightened emotional symptoms like anxiety.

Physical exercise was the most commonly reported stress-reducing strategy in the survey, mentioned by 83.1% of patients. Other frequent approaches to lessen stress included religion, music, art, reading, taking anti-anxiety or antidepressant medication, and looking for social support (e.g., talking to a friend).

Over a third (38.7%) of Parkinson’s patients reported practicing mindfulness — which involves focusing on the present moment, rather than fixating on the past or worrying about the future.

Of note, patients who were mindfulness users reported significantly higher dispositional mindfulness, and also higher perceptions of stress and anxiety. The researchers noted that it is difficult to tease out cause-and-effect relationships from this data. For example, people who are more stressed might be more likely to seek out mindfulness, or mindfulness practitioners may be more in touch with feelings of stress or anxiety and so recognize them to a greater degree.

Mindfulness also was associated with less severe symptoms across all motor and nonmotor symptoms measured.

“Patients perceived a positive effect of mindfulness on their symptoms,” the researchers wrote.

“Highest effects were seen for depression and anxiety, for which, respectively, 60.2% and 64.7% noticed improvement,” they added.

About half of mindfulness users (53.2%) practiced this technique once a week or more, while over a fifth (21.5%) practiced mindfulness once a month or less. Broadly, individuals who practiced mindfulness more frequently reported a greater easing of their symptoms, but consistent benefits were seen among all mindfulness users regardless of frequency.

The researchers speculated that, even when people aren’t actively practicing mindfulness, they may incorporate it into their lives more informally, through subtle changes to lifestyle or thought patterns.

These findings “[support] the idea that mindfulness is effective in reducing PD symptoms,” the researchers wrote, though they again noted they could not determine cause-and-effect from these data. Rather, “people for whom mindfulness is most effective might consequently practice it more.”

The researchers called for further studies, particularly in larger and more diverse groups, to better understand the effects of stress on Parkinson’s patients, as well as the potential benefits of practicing mindfulness.

“The significant beneficial effects that patients experienced from self-management strategies such as mindfulness and physical exercise encourages future trials into the clinical effects and underlying mechanisms of these therapies,” they concluded.

February 2021 Activity Calendar

February 1, 2021 Community Outreach, Exercise, Life

Check out this activity calendar to keep yourself active and engaged this month!

Why do people with Parkinson’s develop addictive behaviours?

September 1, 2020 Awareness, Life, Research

In the latest in Parkinson’s Life’s ‘Ask the expert’ series, psychiatrist and neuroscientist Dr Philip Mosley explains how behavioural addictions can affect the lives of people with Parkinson’s – and shares how a recent study used a virtual casino to find out more about the condition.

What causes some people with Parkinson’s to develop impulsive and compulsive behaviours?

That’s a complex question. From a biological standpoint, dopaminergic medication seems to act on the brains of people with Parkinson’s to bias risky decision-making and reinforce sensation-seeking behaviour, even if it comes at great personal cost.

As well as being involved in the regulation of movement, dopamine is an important ‘teaching signal’ in the brain that helps us to learn from negative and positive experiences, so that our future behaviour is ‘optimal’ for our environment.

The theory is that dopamine from Parkinson’s medication imbalances this signalling in certain regions of the brain and causes a ‘better than expected’ teaching signal – so that rewards are more rewarding and losses are less painful. Only some of the people who take dopaminergic medication develop these compulsive behaviours, so we believe there is something about the specific pattern of degeneration in the brains of those that do that makes them at higher risk.

Why is it important for scientists to understand why some people with the condition develop compulsive behaviours – and others don’t?

If we can unravel why a problem occurs, or at least explain some of the variability, then we can deliver more accurate and personalised information to people with Parkinson’s who are making decisions about the risks and benefits of their treatment.

If we understand who is at higher risk, we can also develop personalised management plans that take into account this vulnerability profile – whether that be choice of drug, the timing of follow up, the provision of external psychological support and how much the family are involved in oversight of the treatment plan.

Can you tell us how these behaviours can impact the lives of people who experience them?

Common behaviours I talk to my patients about include pathological gambling, compulsive spending, binge eating, hypersexuality and becoming excessively involved in hobbies or pastimes to the exclusion of all other interests.

These behaviours can be absolutely devastating. I have met people who have gambled away their life savings, lost their marriage or been prosecuted for actions they have performed whilst under the influence of these medications. There is often an ethical quandary to navigate: people generally know their behaviour is ‘wrong’ but feel compelled to continue to act in this manner despite being intellectually aware of the potential ramifications.

Stigma prevents people from seeking help and acknowledging their difficulties, which only serves to prolong these problems and magnify the fallout. My personal approach is to encourage a non-judgemental atmosphere in which people feel comfortable enough to talk freely without fear of embarrassment.

Can you tell us about how you used a virtual casino in your research?

The aim of our research was to understand more about why some people with Parkinson’s are vulnerable to developing these impulsive and compulsive behaviours. We hypothesised that brain structure, which varies between different people, was a key factor in determining whether or not compulsive behaviours would follow after people received dopaminergic medication.

We took a group of 57 people with Parkinson’s on dopaminergic medication and focused on two brain networks thought to be crucial for decision-making: a network for ‘choosing’ the best course of action and a network for ‘stopping’ inappropriate actions. We used an advanced method of brain imaging which allowed us to visualise the structure of connections between the different brain regions involved in these circuits.

Alongside the brain imaging, we created a virtual casino for our participants. We measured their level of impulsive behaviours through their tendency to place high bets, switch between slot machines and accept “double or nothing” gambles. We then compared behaviour in the virtual casino to the connectivity of the ‘choosing’ and ‘stopping’ networks, to see if there was an association.

The virtual casino was developed by a team of amazing collaborators at the Translational Neuromodeling Unit, in Zurich Switzerland, led by Professor Klaas Enno Stephan. Much of the research into impulsivity and compulsivity in people with Parkinson’s is carried out using pen-and-paper tests or else quite rarefied paradigms that don’t have much relevance to ‘real life’. We felt that our casino would simulate an environment with greater overlap and relevance to the problems experienced by our patients. In Australia, slot machines (known as ‘poker machines’ to Australians) are a huge public health concern with high levels of problem gambling throughout the community, and so it seemed appropriate to adopt this model.

What did you discover?

For the most part, the greater the strength of the ‘choosing’ network and the weaker the strength of the ‘stopping’ network, the more impulsive participants were – that is, they had a greater tendency to behave recklessly in the casino environment by placing large bets, trying lots of different poker machines and making ‘double or nothing’ gambles.

Of our 57 participants, 17 developed clinically significant compulsive behaviours problems during clinical follow up. These participants could be differentiated when we examined the interaction of brain structure, medication dosage and betting behaviour in the virtual casino.

In other words, the real-world environment of the virtual casino, which simulated one aspect of compulsive behaviour, allowed us to unpick the relationship between brain structure and dopaminergic medication to identify those who developed behavioural addictions.

Compulsive participants expressed impulsive gambling behaviour in the virtual casino, as we would have predicted. However, their brain structures suggested they would be conservative (that is, they had a weaker ‘choosing’ network and a stronger ‘stopping’ network). The size of the dose of dopaminergic medication didn’t appear to influence reckless behaviour in these individuals. This suggests the neurodegeneration associated with Parkinson’s prompts a difference in the way the brain works in these people with addiction.

Do you have any advice for people with Parkinson’s who experience compulsive behaviours?

Don’t despair – you can recover from these problems. Talk to your neurologist, your family doctor, or a psychiatrist who knows about Parkinson’s. Recruit your family or close friends, if you can, as part of your support network, and draw on the experience of those in your local support groups, if you feel comfortable sharing some information about what you are going through.

Article from ParkinsonsLife.eu.

Hiring Home Services or Repairs During COVID-19

September 1, 2020 Caregivers, Life

CDC offers the following tips for staying safe and slowing the spread of COVID-19 while scheduling services or repairs inside the home. This may include installation and repair of plumbing, electrical, heating, or air conditioning systems; painting; or cleaning services.

In general, the closer and longer you interact with others, the higher the risk of COVID-19 spread. Limiting close face-to-face contact and staying at least 6 feet away from other people is the best way to reduce the risk of COVID-19 infection, along with wearing masks and practicing everyday preventive actions. Before welcoming service providers into your home, consider these tips to help keep you, your family, and the service provider safe during in-home services or repairs:

Before the visit

Check with your local health department to see if there is a stay-at-home order in your state or local community that restricts non-essential activities or services. If a stay-at-home order is in effect in your community, consider if the service request is essential or if it can be delayed.
If you or someone in your home has COVID-19, has symptoms consistent with COVID-19, or has been in close contact with someone who has COVID-19, wait to schedule non-emergency services that require entry into your home until it is safe to be around others.
If you or someone in your home is at higher risk for severe illness from COVID-19, such as older adults or those with underlying medical conditions, consider not being inside the home during the service, or find someone else who can be in the home instead.
Do as much of the pre-service consultation as possible before the service provider arrives, to reduce the amount of time the service provider spends inside your home. For example, discuss the details of the service request on the phone or by email, and send pictures ahead of time.
Discuss any COVID-19 precautions the service provider is taking, including the use of masks for the duration of the service visit, any pre-screening procedures (such as temperature checks) and using the restroom during the service call.

During the visit

Do not allow service providers to enter your home if they seem sick or are showing symptoms of COVID-19.
Ask the service provider to wear a mask before entering your home and during the service visit. Also, you and other household members should wear a mask. Consider having clean, spare masks to offer to service providers if their cloth face covering becomes wet, contaminated or otherwise soiled during the service call.
Avoid physical greetings, for example, handshakes.
Minimize indoor conversations. All conversations with the service providers should take place outdoors, when possible, and physically distanced indoors, if necessary.
Maintain a distance of at least 6 feet from the service provider, and limit interactions between the service provider and other household members and pets.
During indoor services, take steps to maximize ventilation inside the home, such as turning on the air conditioner or opening windows in the area.

After the visit

If possible, use touchless payment options or pay over the phone to avoid touching money, a card, or a keypad. If you must handle money, a card, or use a keypad, wash your hands with soap and water for at least 20 seconds or use hand sanitizer with at least 60% alcohol after paying.
After the service is completed, clean and disinfect any surfaces in your home that may have been touched by the service provider.

Source CDC.gov

Diet, Nutrition, and Parkinson’s: What you Need to Know

July 1, 2020 Life, Research

Diet and nutrition have been found to play a crucial role in Parkinson’s. In a recent ‘Ending Parkinson’s Disease: Live’ webinar on Parkinson’s EU, Parkinson’s expert Dr Bastiaan Bloem, epidemiologist Dr Alberto Ascherio and Parkinson’s campaigner Omotola Thomas, considered how different foods can affect the risk of diagnosis, maintaining bowel health and more.

We share five key takeaways from their discussion.

1. Which foods can affect your risk of developing Parkinson’s?

Diet, said Dr Bloem, “is a really hot topic in the field of Parkinson’s”. Alongside exercise, diet and nutrition “are the big new kids on the block when it comes to improving symptoms, and perhaps, slowing down the progression of the disease.”

Dr Bloem and Dr Ascherio praised the Mediterranean diet, which varies by country and region, for its potential to lower the risk of developing Parkinson’s. The Mediterranean diet is generally high in vegetables, fruits, grains, healthy fats and fish, and is typically low in meat and dairy. Such a diet is rich in nutrients and antioxidants, making it “better than the traditional Western diet”, according to Dr Ascherio.

On the other hand, Dr Bloem theorised that “a lifetime of exposure to dairy” is associated with a higher risk of developing Parkinson’s, likely due to the pesticides ingested by cattle from contaminated grass.

Dr Ascherio added: “I don’t think that globally, dairy products are known to be a major cause of pesticide exposure. Dairy also has other effects like reducing the level of uric acid in blood, which we found to be related to a risk of Parkinson’s disease.”

2. Could you be malnourished if you have Parkinson’s?

While Dr Bloem pointed out that a regular diet should offer all the necessary nutrients, he did note that vitamin D and vitamin C can be exceptions. “Many people, particularly when you age and particularly when you’re a woman, are at risk of developing a vitamin D deficiency. There are fascinating anecdotal reports of people taking vitamin D and experiencing improved motor symptoms.”

Meanwhile, he explained, vitamin C supplements can help to prevent bladder infections in Parkinson’s patients by acidifying the urine. “Bladder infections can trigger a cascade that leads to worsening Parkinson’s symptoms.”

Dr Bloem also debunked the use of supplements like vitamin E, curcumin and Coenzyme Q190, which have been found to offer no benefits to people with Parkinson’s.

3. How can you maintain your bowel health?

Bowel problems are common in Parkinson’s patients, which Dr Bloem said can be alleviated by drinking a lot of water and eating a diet rich in fibres. People with Parkinson’s should see their general practitioner for laxatives only if all else fails. “The rule is you need to have bowel movements at least once every other day.”

Thomas added: “I have a three litre water bottle that I finish by the end of the day. It is a challenge, but I try to finish it. Because I struggle very greatly with constipation, I take three or four ounces of prune juice in the morning and that seems to help me.”

4. How should you take your Parkinson’s medication?

As food can interfere with the efficacy of levodopa medication, Dr Bloem recommended taking levodopa at least half an hour before or after a meal. In particular, he advised that protein intake be spread across the day.

“For most patients, taking your medication with a protein rich meal including dairy products and meat, can reduce gastrointestinal absorption of your levodopa. So, you need the proteins in order to keep up your muscle strength and avoid weight loss but try to spread the proteins over the day.”

Thomas acknowledged that this can be hard to do. She said: “I have a struggle spreading my proteins with my levodopa because I can’t take more than 15mg of levodopa at a time, so I’m taking it every two hours.

“That is one of those things whereby theoretically, I know what I’m supposed to do, but practically, I’m not able to.”

5. Should a dietician be part of your standard Parkinson’s care?

Yes, said Dr Bloem. “I think paying attention to the gut is part of routine clinical care at every consultation for people with Parkinson’s. Parkinson’s starts in the gut for many patients and slow bowel movements are very common, impacting the efficacy of your medication and appetite for food. It needs attention.”

While a Parkinson’s doctor or nurse can offer useful dietary advice, Dr Bloem himself recommends that his patients see a dietician at least once. “I think it’s part of standard care.”

View the webcast.

View WPA’s “Ask the Expert” video on this topic with Michelle McDonagh, RD, Froedtert & Medical College of Wisconsin

Coronavirus and treatment for Parkinson’s

July 1, 2020 Awareness, Education, Life

What do we know about the relationship between coronavirus and Parkinson’s?

Joaquim Ferreira, neurologist, Portugal: There is still scarce information regarding many clinical aspects of this infection and its potential short- and long-term complications. We know that the majority of people with Parkinson’s are elderly, and age is a risk factor for the more severe forms of Covid-19. On the other hand, we recognise that patients might be affected indirectly by the lockdown physical restrictions, the psychological impacts and the compromised healthcare.

Miriam Parry, senior Parkinson’s Disease nurse specialist, UK: We do know that people with Parkinson’s are more prone to pneumonia and infections. Parkinson’s can cause respiratory issues for some people – if you have lived with Parkinson’s for a long time, you are more likely to have breathing and respiratory difficulties. This is why people with Parkinson’s are described as being at greater risk of severe illness if they get coronavirus. As such, their caregivers need to take precautions.

Rick Helmich, neurologist, the Netherlands: We know very little, but knowledge is rapidly increasing. Parkinson patients who develop Covid-19 seem to suffer from the same symptoms as other people and to approximately the same degree. However, patients who get sick from coronavirus may suffer from a worsening of their Parkinson symptoms. This is a well-known finding that also occurs when Parkinson patients develop other non-coronavirus infections. The current pandemic also has effects on Parkinson patients that are not so visible, such as increased stress levels and less physical exercise due to the social isolation measures.

How has the coronavirus crisis affected how you and your colleagues carry out your roles, and interact with patients?

Emma Edwards, Parkinson’s specialist nurse, UK: The coronavirus crisis has meant that our face-to-face appointments were stopped with immediate effect. We knew that telehealth technology was due to be implemented in our work area over a planned period of about seven months. When the crisis happened, that roll out took about seven days! In May, I started to see some patients again in their homes. Those allocated for this type of review were people that were running into problems with their Parkinson’s that we couldn’t resolve over the phone or via the virtual clinics.

Helmich: For a few months, I have been working mainly from home, and all my contacts with patients were through video-conferencing and by phone. It took some time to adjust, but I am actually very happy with how it turned out now. It is amazing how much you can see and discuss via a good video connection. On the other hand, more subtle things are better seen in real life, so I am happy that we are allowed to see more patients at our hospital in the next weeks.

Ferreira: The major implications of visit cancellations for patients that were hospitalised, or doing rehabilitation programmes as inpatients, should also be mentioned. This situation forced all health professionals to be involved in facilitating communication and minimising the consequences of not seeing family and friends.

How has the coronavirus crisis affected access to treatment for people with Parkinson’s?

Helmich: This is a topic that many patients are worried about: access to health care. Many Parkinson patients are treated by a whole team of professionals, including a neurologist, a Parkinson nurse, a physical therapist, and sometimes a psychiatrist, speech therapist, or occupational therapist. Access to these health care providers has been restricted by the isolation and social distancing measures. Not all people have good access to internet, and not all treatments can be given through video conferencing. So, I believe that the care for Parkinson patients has certainly suffered from the coronavirus pandemic.

Ferreira: The coronavirus pandemic severely affected the follow-up of people with Parkinson’s disease. The regular consultations were cancelled, making it more difficult or impossible the access to physicians and other health professionals. Pharmacological prescriptions were more difficult to obtain. Sessions of physiotherapy, speech therapy and other therapeutic interventions were cancelled, and physical activity and exercise was highly reduced for many patients. Many deep brain surgeries were deferred, and patients included in research studies and clinical trials saw their consultations being moved to phone contacts or videocalls.

Edwards: Face-to-face sessions such as our Parkinson’s exercise groups, have also been postponed but luckily the staff that ran those groups produced a brilliant DVD of the common exercises they undertook in class. These were distributed out to homes at the beginning of the outbreak and were warmly received by many people with Parkinson’s.

What actions should people with Parkinson’s take at the moment?

Ferreira: The most important recommendation for people with Parkinson’s and their close friends and family is to follow the general public health recommendations that apply to the elderly population. At the current stage of the pandemic, when governments are lowering the confinement measures, the most important message is to alert everybody that this pandemic is not over and the general measures that are being recommended for the general population should be followed strictly in the next months.

Parry: When you leave the house, for any reason, you should avoid busy spaces and keep a distance of around two meters from people you do not live with, while wearing a face mask. You should also continue to follow good hygiene practices, including handwashing, not sharing crockery and cutlery, wiping down surfaces, and not entering other people’s homes. You can ask your local pharmacist to deliver medication to your home address or ask family members or friends to help.

Edwards: I would really advocate for people, if they can, to exercise. It has proven benefits not just for physical health in Parkinson’s but for promoting good mental health. I’ve been really impressed with the exercise classes available online to people with Parkinson’s whilst the group classes have been postponed.

What should people with Parkinson’s do if they have hospital and GP appointments during this period?

Parry: If you’re in the UK, please call the GP’s practice and ask for further information and direction pending the reasons for the appointments. The GP practice will be able to advice you whether it is urgent or offer you a phone or video consultation. Routine hospital appointments have now changed to virtual clinics using phone and video link consultations.

Ferreira: During this crisis, health institutions in Portugal have changed their procedures in order to implement safety circuits for those who will need to attend their routine visits or need to go to the hospital in an urgent situation.

Edwards: I would imagine as we come out of the lockdown, clinical outpatient appointments in the UK will look very different to what people are used to. Certainly, in our area, personal protective equipment will be worn by staff and visiting patients are encouraged to wear face masks. If people with Parkinson’s need advice on managing their condition and are not sure when their next review will be, they should contact their local Parkinson’s service and ask for help. Be proactive!

How can people with Parkinson’s look after their mental wellbeing?

Ferreira: All health professionals that follow patients with Parkinson’s recognise that this has been a difficult time, not just for the patients but for all around them. The most important thing for the community is strengthening support and continuing care, keeping the links between patients, their families, caregivers and health professionals.

Helmich: This is different for everyone. Some of my patients even like certain aspects about the current situation, such as a reduction in workload, deadlines, or social obligations. In general, I think it is good to try to stay in touch with your loved ones. Find a new structure for your day that works for you and develop new exercise routines. There are many online events available for Parkinson patients, such as online dancing or singing classes. So, it might be worthwhile to have a look online to see what is out there or ask someone to help you do so. Don’t be afraid to speak about your worries or fears.

Edwards: Being able to connect with others has been a challenge during the lockdown, but as restrictions are eased, I really encourage people to meet others again, albeit in a safe way. For many during coronavirus, that has been via online forums like Zoom or having a socially distanced chat over the garden fence to family and friends. I’m also a massive advocate for mindfulness. It’s a way to be fully present, having an awareness of where we are and what we are doing and feeling, without being overwhelmed by what’s going on around us.

Parry: It is normal and expected to feel a range of emotions during this pandemic including fear, increased anxiety, anger and sadness. There is guidance on looking after mental wellbeing during this time from mental health charity Mind, as well as support on the Parkinson’s UK and Parkinson’s Foundation websites.

What is the advice for those living with a vulnerable person?

Parry: Visitors and people who provide care for those with Parkinson’s should protect them and reduce their risk by staying at home as much as possible. They should work from home, if they can, and limit contact with other people.

Ferreira: It is a good principle to assume that everybody who we are in contact with may be infected, even if they don’t present any suspected symptoms. No one can be sure that they are not infected or do not have a risk of infecting others. This is even more relevant for health professionals, caregivers, family members and those that have close contact with vulnerable populations.

Edwards: I knew from the moment I re-started my home visits that I had not fully been picking up the impact that the coronavirus and subsequent lockdown has had on care partners. It was harder to pick up the subtleties of care partner stress on the telephone or even on the telemedicine appointments. I’m certainly more mindful that we need to continue to address this area as digital medicine becomes more accessible for people with Parkinson’s and potentially less contact is had with partners or carers during these interactions.

Helmich: Be aware that vulnerable people are sometimes less able to cope with new or threatening situations. Be patient if your loved ones are anxious, worried, or experience a worsening of their symptoms.

Do you think the coronavirus crisis will have a long-term impact on people with Parkinson’s?

Ferreira: The limitations induced by the Covid-19 pandemic are here to stay and we need to be prepared to adapt for the next months.

Parry: The Covid-19 pandemic could potentially have a long-term impact on the physical and mental health of people with Parkinson’s, and many studies are currently taking place looking at the effect of this pandemic.

Edwards: I think lots of clinicians were hoping that we could eventually use technology in how we review our patients, and this crisis has pushed that to the forefront. I like being able to offer our patients a wider range of ways that they can access information and advice – from virtual clinics to wearing digital technology – but also being able to offer more traditional face-to-face home visits if needed.

Need to know

Emma Edwards: I’m a mental health nurse in the UK – however for the last 10 years I’ve worked as a Parkinson’s specialist nurse in the community. I had worked in a large rural area for many years, but more recently have moved to a post in a city. Due to the lockdown on clinical work environments, my dining room is currently my office!

Joaquim Ferreira: I am a neurologist mainly working in the field of Parkinson disease for the past 25 years. I am also professor of neurology and clinical pharmacology at the University of Lisbon, Portugal. More recently, I founded CNS, Campus Neurológico Sénior, which is a movement disorders centre focused on the multidisciplinary care and rehabilitation for Parkinson’s patients.

Miriam Parry: I work as senior Parkinson’s Disease nurse specialist (PDNS) at King’s College Hospital NHS, Parkinson’s Foundation Centre of Excellence in London, UK. My role is to provide a holistic approach to care and seamless service to people with Parkinson’s and their family and carers, providing ongoing support, educating and empowering patients to become experts in their condition. Above all, I aim to engage people with Parkinson’s with King’s rich research portfolio on offer, as without it we would not have the knowledge and the care pathways that we do.

Rick Helmich: I live in Nijmegen, the Netherlands and work as a neurologist and neuroscientist at the Radboud University Medical Centre. I specialise in Parkinson’s, and in my research at the Donders Institute, I use brain imaging to help understand symptoms and phenomena I see in my patients. Lately I’m intrigued by the effects of stress on patients with Parkinson’s, both the causes and the consequences.

Information from Parkinsonlife.eu.

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