PD

Educating the Educated About Parkinson’s Disease

This column appeared in Parkinson’s News Today.

I went to the dermatologist yesterday for a skin check. Those of us who have Parkinson’s disease (PD) should make a habit of getting a yearly check because our condition increases the odds of getting skin cancer. The Mayo Clinic reported that patients with Parkinson’s “were roughly four times likelier to have had a history of melanoma than those without Parkinson’s, and people with melanoma had a fourfold higher risk of developing Parkinson’s.”

So, I had an appointment with the dermatologist. After a thorough body check and five biopsies, I was free to leave. The nurse stayed back with me after the doctor left because I struggled to move. She asked when I was diagnosed with Parkinson’s. After I answered “2004,” she replied, “Isn’t that young for Parkinson’s?” Not as young as when the symptoms began 10 years before that, I wanted to answer.

She followed that question with another: “Did it run in my family?”
No.
“Not even one relative?”
No.
“Are you sure?”
Yes.

While I dressed and walked out to where my husband waited in the car, I shook terribly. That’s something I hadn’t done in quite a while. I was sure it was the combination of numbing five different areas with an intrusive needle and the anxious feeling that came over me with the news that spots could be cancerous. However, what caught me almost more off guard was the nurse’s questioning.

I guess what surprised me is how uninformed so many still are.

I have spoken to groups about my 20-year journey with Parkinson’s disease. I write about it on my blog. I am open about it with others. I have written articles for several different publications. I am a PD advocate. I know a lot about the disease. I just figure others do, too. What surprised me most about her questions was that she worked for a dermatologist who should be very familiar with PD since the disease can highly affect the skin.

As patients, our job is far from finished.

As long as we live with PD, we are responsible for getting information about this disease out to everyone we can, as best we can. Not just to newbies in the patient club, but also those in the medical fields. Perhaps the patients and caregivers should hold a conference for medical professionals instead of the opposite. After all, we are living PD day to day, feeling it moment by moment. As my movement disability specialist once told me, “You patients are the experts. The doctors take their cue from you.”

If that is true then we need to be proactive with the hand we’re dealt. We must educate those around us, whether they’re a patient, nurse, caregiver, doctor, dental hygienist, or medical transporter. It’s going to take a whole lot more than answering the question of whether Parkinson’s disease is hereditary — it was obvious to me the nurse wasn’t buying my answers.

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Exercise can improve non-motor symptoms of Parkinson’s disease

Exercise has potential to improve non-motor as well as motor symptoms of Parkinson’s disease (PD), including cognitive function, report investigators in a review published in the Journal of Parkinson’s Disease.

PD is a slowly progressive disorder that affects movement, muscle control, and balance. While traditionally regarded as a movement disorder, it is now known to be a heterogeneous multisystem disorder — in recognition of the significant impact that non-motor symptoms have on the quality of life of individuals affected by PD. It is widely acknowledged that physical exercise improves motor symptoms such as tremor, gait disturbances, and postural instability. However, the effect of exercise on non-motor symptoms in PD, especially cognitive function, is less clear.

The number of older people with and without PD that experience cognitive impairment is steadily increasing worldwide. It is associated not only with a substantial rise in healthcare costs, but also affects the quality of life of both patients and relatives or carers. Up to 57% of patients suffering from PD develop mild cognitive impairment within five years of their initial diagnosis, and if they survive more than ten years, the majority will eventually develop dementia. The underlying neurophysiological mechanisms for cognitive decline in PD are not completely understood, but an accumulation of amyloid plaques, mitochondrial dysfunction, and neurotransmitter changes are all suggested to contribute.

A comprehensive literature review was conducted by investigators from the Institute of Movement and Neurosciences, German Sport University, Cologne, Germany, and the VasoActive Research Group, School of Health and Sport Sciences, University of the Sunshine Coast, Queensland, Australia. The studies reviewed included investigations of the effects of coordination exercise, resistance exercise, and aerobic exercise on domain-specific cognitive function in patients with PD. “Physical exercise is generally associated with increased cognitive function in older adults, but the effects in individuals suffering from PD are not known,” explained lead investigator Tim Stuckenschneider, MA.

The researchers identified relevant studies published before March 2018. There were 11 studies included with a combined total of over five hundred patients with PD with a disease severity from stages 1 to 4 on the Hoehn & Yahr scale, which is used to describe the symptom progression of PD. In four studies, positive effects of exercise on cognition (memory, executive function, and global cognitive function) were shown with no negative effect of exercise on any cognitive domain. Furthermore, disease severity was generally improved by exercise interventions.

The investigators concluded that all modes of exercise are associated with improved cognitive function in individuals with PD, however, no clear picture of which exercise mode is most effective emerged as they may influence cognitive function differently. Aerobic exercise tended to improve memory best, but different forms of exercises such as treadmill training or stationary bike training may have different effects, although both are considered aerobic exercise. Future studies are needed that directly compare the effects of different exercise modes, as the number of high-quality research projects is still limited.

“The potential of exercise to improve motor and non-motor symptoms is promising and may help to decelerate disease progression in individuals affected by PD,” observed Stuckenschneider. “Exercise therapy needs to be, and often already is, an essential part of therapy in individuals with PD. However, it is mostly used to treat motor symptoms. As part of a holistic therapy, the potential of exercise to maintain or improve non-motor symptoms such as cognitive function in individuals with PD needs to be acknowledged, and the most effective treatment options need to be defined. This will not only help practitioners to recommend specific exercise programs, but also ultimately improve the quality of life of the individual. Our work shows that ‘exercise is medicine’ and should routinely be recommended for people with PD to help combat both the physical and cognitive challenges of the disease.”

Article from ScienceDaily.com.

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Manganese and Parkinson’s: Mechanism may explain link

New research, published in the journal Science Signaling, details the mechanism through which exposure to manganese can trigger protein misfolding in the brain — which may, in turn, lead to Parkinson’s-like symptoms. The findings may enable an earlier diagnosis of the neurological condition.
Manganese is an essential nutrient present in “legumes, pineapples, beans, nuts, tea, and grains.”

In the human body, manganese aids blood sugar regulation, bone formation, and immunity.

However, exposure to excessive levels of manganese may trigger Parkinson’s-like neurological symptoms. Manganese builds up in the basal ganglia area of the brain.

Researchers have known about these links between manganese and Parkinson’s for decades, but new research helps elucidate the mechanisms behind these associations.

Anumantha Kanthasamy, the Linda Lloyd Endowed Chair of Neurotoxicology at Iowa State University in Ames, led the new research.

Manganese helps transfer a faulty protein

Parkinson’s disease is characterized by clumps formed by misfolded alpha-synuclein protein. These protein aggregates are toxic to neurons.

Kanthasamy and colleagues set out to investigate how these misfolding proteins might interact with manganese to trigger the progression of Parkinson’s.

To do so, they examined data from mice and blood serum samples collected from eight welders. As a group, welders have a higher risk of prolonged manganese exposure. The research also examined a control group of 10 people.

The analyses revealed that welders with exposure to manganese had higher levels of misfolded alpha-synuclein, which puts them at a higher risk of Parkinson’s.

Additional cell culture tests showed that misfolded alpha-synuclein was secreted through small vesicles called exosomes into the extracellular space. In other words, the vesicles enabled the proteins to travel from cell to cell and further spread the misfolded protein.

The scientists also isolated alpha-synuclein-containing exosomes from alpha-synuclein-expressing cells that had exposure to manganese and delivered them to a brain area in the mice called the corpus striatum. This induced Parkinson’s-like symptoms in the mice.

Manganese seemed to accelerate the “cell-to-cell transmission” of alpha-synuclein, which, in turn, led to neurotoxicity. Kanthasamy and colleagues explain:

Together, these results indicate that [manganese] exposure promotes [alpha-synuclein] secretion in exosomal vesicles, which subsequently evokes proinflammatory and neurodegenerative responses in both cell culture and animal models.”

“[W]e identified a possible mechanism involving the exosome-mediated, cell-to-cell transmission of [alpha-synuclein] during exposure to the environmental neurotoxicant,” write the authors.

Findings may lead to earlier detection

According to the National Institutes of Health (NIH), around 50,000 individuals in the United States receive a diagnosis of Parkinson’s each year, and 500,000 people currently live with the condition.

Though the condition does not yet have a cure, diagnosing it earlier may prevent irreversible brain damage and help accelerate human clinical trials of new drugs.

The results that Kanthasamy and colleagues have just published may help scientists devise a new diagnostic test for Parkinson’s that could detect the disease much earlier on. The results may also help scientists test how effective new Parkinson’s drugs are.

“As the disease advances, it’s harder to slow it down with treatments,” Kanthasamy says. He adds: “Earlier detection, perhaps by testing for misfolded alpha-synuclein, can lead to better outcomes for patients. Such a test might also indicate whether someone is at risk before the onset of the disease.”

However, the study authors also caution that their findings are still experimental, and that such a diagnostic test may not be available for years.

Article from Medical News Today.

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WPA Podcast

We recently launched a Podcast/Online Radio Show!

We will create a new episode every other week, and we’ll interview doctors, people with Parkinson’s, caregivers, therapists and more!

Listen to past issues here.

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12 of the best domestic tools for people with Parkinson’s

From attachable plate guards to ergonomically designed grabber tools, there are lots of products that make home living that little bit easier. We’ve put together a room-by-room roundup of some of the most useful items for people with Parkinson’s.


Kitchen

1. Plate guard

Plate guards can be subtly fitted onto ordinary plates to help those who can only eat with one hand or have an unsteady grip. The inward facing slopes helps with food collection and prevents spillages.

2. Tailor-made cutlery

Electronic stabilising handles are designed specifically to help people with hand tremors. The utensils are tailor-made to counteract the effect of tremors and have inbuilt sensors and motors to help combat tremors.

3. Kettle pouring stand

Making your morning ‘cuppa’ has never been easier with kettle tippers that helps users pour boiling water without lifting the kettle up – reducing the risk of spills. The frames handily wrap around your kettle, and are held in place with a secure Velcro strap.

Bathroom

4. Foam tubing

Sliding easily over popular household items such as hairbrushes and toothbrushes, foam tubing gives users a firmer grip – making everyday grooming easy and quick.

5. Electric razor

Parkinson’s symptoms like dyskinesia and tremors can make completing everyday tasks like shaving difficult or dangerous. An electric razor is one simple swap that can speed up a morning routine and avoid nips and cuts.

Living Room

6. Grabber tools

Ergonomically designed to mimic how a finger and thumb pick things up, hand grip grabber tools help users reach for things high or low, small or large around the house without stretching or bending.

7. Touch lamps

Touch table lamps help to avoid a struggle with tricky light switches. Simply touch the bases lightly to control the light output and reach the desired brightness, making it that bit easier when settling in for bed.

Bedroom

8. Reading rest

For those who find it hard to keep a book still, consider a reading rest for a more comfortable reading experience. Simply clip the book in and adjust the angle for when in bed or at a desk.

9. Button and zip hook

You can find many easy-to-use, low-cost hooks that help combat fiddly buttons and zips while dressing and undressing.

10. Elastic laces

Get out of the door quicker in the mornings by turning lace-up shoes into slip-ons. Elasticated laces eliminate the need to bend down and tie and untie shoes before leaving the house.

Study

11. RollerMouse

A wireless RollerMouse sits directly in front of the keyboard and the cursor can be moved by touching the rollerbars lightly. Users can switch control between hands when fatigue sets in – improving accuracy and increasing the amount of time spent online in comfort.

12. Keyguards

Keyguards are placed above the keys on a standard keyboard and stop people with hand tremors hitting unwanted keys whilst typing. While it slows down typing speed, it improves accuracy and comfort.

Article from Parkinson’s.eu.

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For Caregivers: Moving in with Family? Issues to Consider

Too often, the decision to move into a family member’s home is made when a crisis develops or as a last resort. Sudden illness or injury strikes and the family is left without a plan for long-term care for their loved one. Experts suggest that all families discuss the possibility of the need for long-term care, and the possibility of family members living together as a solution to the daily care situation. The following are some items to discuss with all members of the family before making such a move.

Accessibility

Is the home “elder friendly”? It is necessary to review the setup of the home, in terms of stairs, additional bedrooms, bathrooms and general safety issues. If home modifications are needed, they should be completed prior to the move.

Care

How much care will the relative require? Daytime supervision, medication management, meal preparation and entertainment are just a few examples of important issues to consider. Assess the level of assistance needed now and in the foreseeable future. If the relative is in poor health, who will be in charge of providing the care? Will other family members share in the caregiving duties? Establish basic rules and a care routine to help prevent conflicts and caregiver burnout.

Emotions

How do family members get along with each other? How are conflicts dealt with? All families have their share of problems and each family handles them differently. The loss of independence is difficult for anyone and reactions or behavior change is to be expected. It is important to be able to talk about how everyone is feeling and encourage the relative to continue with a life of their own. Communication skills, including active listening, are necessary in handling and resolving conflicts successfully.

Finances

How will the change in household expenses be handled? An increase in family size usually means an increase in family expenses. Will the relative contribute? Are there other family members who can help with financial support?

Responsibilities

What is expected of the relative? What responsibilities will they have for care of the home? If there is a separate apartment, will everyone dine together? What about family outings – will the relative always be included?

Avoid the feeling that the situation is permanent.

Start with a limited “trial period,” then review the situation. Once the move has been made to live together, it is very important for all family members to have continual open and honest communication with each other on all matters. Don’t hold in your feelings – both positive and negative feelings need to be shared.

If the health condition of the relative changes, and additional care is needed, it is crucial for the family to review the daily plan. If the situation requires help outside the family, there are a number of alternatives that the family and the relative can explore together. Make sure that the relative is included in decision making, if they are able. Some other options for care include: daily home health aide or homemaker care, which would also provide respite relief for family caregivers, home based community care programs, friends and neighbors, church outreach programs and dividing the care responsibilities among the family by rotating care, with the relative going to others’ homes, or by allowing other relatives to come into the home to provide the daily care.

Families who maintain open and honest communication and are willing to share in the financial and caregiver responsibilities for a needy relative can successfully reside together in the same home. Support can and should be a two-way street. Where better to get the daily support that we all need than from our family!

Article from Caregiver.com.

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Musician Dale Luedtke to play at WPA’s Holiday Reception

When Dale Luedtke retired from his job in IT at US Bank in October, he was looking forward to relaxing, enjoying more time with his family, and getting back to playing his guitar regularly. He started taking guitar lessons when he was ten years old, and then continued as a classical guitar major at the Wisconsin Conservatory of Music. He began performing in the early seventies, playing throughout the Midwest as a solo artist, and in several bands over the years.

After having some stiffness and tingling in his left arm and hand, Dale was diagnosed with Parkinson’s in spring 2017. “It was harder to play,” he said. “It would take three or four songs for my hand to loosen up and be comfortable playing.”

He took a break from playing after his diagnosis, but now that he’s retired, he’s picking up where he left off. While his stamina may not be quite what it was before Parkinson’s, his passion for music hasn’t diminished. He’s booking gigs at restaurants and bars in the area, and he’s looking to share his love for music with residents at some local assisted living communities as well.

You can hear Dale at WPA’s Annual Holiday Reception in Brookfield on December 5. Learn more about the Holiday Reception and register HERE.

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Irish entrepreneur uses technology to fight PD

Ciara Clancy is no ordinary entrepreneur, with her company Beats Medical far less concerned with making money than it is with helping people live with various neurological conditions.

At the age of just 29, Ciara Clancy’s work in helping people to live with the likes of Parkinson’s disease, Alzheimer’s, dyspraxia and the effects of stroke are unparalleled on the island of Ireland.

Speaking to host Tadhg Enright on this week’s The Architects of Business, in partnership with EY Entrepreneur Of The Year™, Ciara reveals the reason why she left behind her career as a physiotherapist.

A highly driven and passionate individual, Ciara wanted to create technology – based on Metronome Therapy, which helps Parkinson’s sufferers in particular – that would make it as easy for those living with these life-changing conditions to get around at home as it would be under medical supervision.

“I remember the exact moment that I decided I wanted to found Beats Medical,” Ciara – a 2016 finalist in the EY Entrepreneur Of The Year™ programme – reveals.

“A person with Parkinson’s disease was coming into me for this Metronome Therapy in a hospital, and he was 20 minutes late and I went out to find him stuck, frozen at the main entrance.

“And this was happening everywhere we went, every door he went through, and I knew that when he came into clinic he walked very well with Metronome Therapy but he’d go home and this would persist, and it was at that point I said I can’t go 20 years into my career and not try. I need to find a way to bring this treatment into the home.

“That’s when I decided to step out of my career as a physio and volunteer with a Parkinson’s charity to understand needs outside of the hospital. And really that’s how Beats Medical was born.”

Article from JOE.ie.

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Study Reveals Mechanisms Underlying Pain Processing in PD

Parkinson’s disease is a condition affecting the human brain that becomes worse over time. The most common symptoms are tremors, muscle spasms and movements that are much slower than normal; all of which decrease an individual’s quality of life. Although there is currently no cure, the brain structures involved in Parkinson’s disease are known. These are collectively termed the basal ganglia, and are often targeted to treat the symptoms of Parkinson’s disease. For example, electrically stimulating the subthalamic nucleus (STN), one part of the basal ganglia, reduces muscle tremors and stiffness.

Pain is another common symptom in Parkinson’s disease. Patients often report strange burning or stabbing sensations with no obvious physical cause. They are also likely to be more sensitive to painful stimuli and have a lower pain threshold than normal. This suggested that the brain circuits that allow us to perceive and process pain could be somehow involved in Parkinson’s disease. Indeed, stimulating the STN is known to relieve pain in Parkinson’s disease, as well as the muscle symptoms, but exactly how the STN might link up with the brain’s ‘pain network’ remains poorly understood. Pautrat et al. therefore set out to explore the connection between pain networks and the STN, and determine its potential role in Parkinson’s disease.

First, the electrical activity of nerve cells in the STN of rats was measured, which revealed that these cells do respond to mildly painful sensations. Experiments using dyes to label cells in both the STN and brain structures known to transmit painful signals showed that the STN was indeed directly linked to the brain’s pain network. Moreover, rats with a STN that did not work properly also responded abnormally to painful stimuli, confirming that the STN did indeed influence their perception of pain. Finally, Pautrat et al. repeated their measurements of electrical activity in the STN, this time using rats that lacked the same group of nerve cells affected in the basal ganglia of patients with Parkinson’s disease. Such rats are commonly used to model the disease in laboratory experiments. In these rats, the STN cells responded very strongly to painful stimuli, suggesting that problems with the STN could be causing some of the pain symptoms in Parkinson’s disease.

This work reveals a new role for the STN in controlling responses to pain, both in health and disease. Pautrat et al. hope that their results will inspire research into more effective treatments of nerve pain in both Parkinson’s disease and other neurodegenerative conditions.

To learn more about this work, visit elifesciences.org.

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Protein might become candidate for drug development

Researchers have modified the protein Nurr1 so that it can enter cells from the outside. Nurr1 deficiency may be one of the causes of Parkinson’s disease. Even though Nurr1 has been discussed as a potential target for the treatment of Parkinson’s disease, it is unusable in its normal form, as it cannot penetrate cells. A team from Ruhr-Universität Bochum and the US-American National Institutes of Health (NIH) deployed a bacterial import signal in order to deliver Nurr1 into cells. The researchers also demonstrated that the modified protein may have a positive effect on the survival of dopamine-producing nerve cells. They describe their results in the journal Molecular Neurobiology from 18 August 2018.

For the study, Dennis Paliga, Fabian Raudzus, Dr. Sebastian Neumann, and Professor Rolf Heumann from the work group Molecular Neurobiochemistry collaborated with Professor Stephen Leppla from the NIH.

Bacterial protein building block as import signal

Nurr1 is a transcription factor; this means the protein binds to DNA in the nucleus and regulates which genes get read and translated into proteins. Thereby, it controls many properties in cells that produce the neurotransmitter dopamine and that are affected in Parkinson’s disease. Dopamine withdrawal in certain brain regions is responsible for the slowness of movement that is associated with the disease.

Since the Nurr1 protein does not usually have the capability of entering cells and, therefore, cannot take effect in the nucleus, the researchers were searching for ways of furnishing the protein with an import signal. They found what they were looking for in bacteria and attached a fragment of a protein derived from Bacillus anthracis to Nurr1. In the bacterium, that protein ensures that the pathogen can infiltrate animal cells. “The fragment of bacterial protein that we used does not trigger diseases; it merely contains the command to transport something into the cell,” explains Rolf Heumann. Once the modified protein has been taken up by the cell, the bacterial protein building block is detached, and the Nurr1 protein can reach its target genes by using the cell’s endogenous nuclear import machinery.

Nurr1 has a positive effect on the key enzyme of dopamine synthesis

The researchers measured the effect of functional delivery of Nurr1 by monitoring the production of the enzyme tyrosine hydroxylase. That enzyme is a precursor in dopamine synthesis – a process that is disrupted in Parkinson’s patients. Cultured cells that were treated with modified Nurr1 produced more tyrosine hydroxylase than untreated cells. At the same time, they produced less Nur77 protein, which is involved in the regulation of programmed cell death.

Protein protects from the effects of neurotoxin

Moreover, the researchers tested the effect of modified Nurr1 on cultured cells that they treated with the neurotoxin 6-hydroxydopamine. It causes the dopamine-producing cells to die and is thus a model for Parkinson’s disease. Nurr1 inhibited the neurotoxin-induced degeneration of cells.

“We hope we can thus pave the way for new Parkinson’s therapy,” concludes Sebastian Neumann. “Still, our Nurr1 fusion protein can merely kick off the development of a new approach. Many steps still remain to be taken in order to clarify if the modified protein specifically reaches the right cells in the brain and how it could be applied.”

Article from Ruhr University Bochum.

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