Margaret Chico-Eddy (left) cheers on Mandy Jordan, of Sissonville, and her dog Jojo as they cross the finish line in the fifth annual Fox Trot for Parkinson’s Research in Charleston Saturday morning.
In a life filled with obstacles and triumphs, running the fifth annual Fox Trot for Parkinson’s Research was a breeze for its founder George Manahan.
Runners take off during the fifth-annual Fox Trot for Parkinson’s Research in Charleston Saturday morning. More than 450 people participated in this year’s event, according to event organizers.
“It was great, especially because the weather cooperated with us,” said Manahan, who was diagnosed with Parkinson’s disease seven years ago. “And this year, I think people were more interested in giving more.”
Saturday’s Fox Trot, a 5k race and walk in Charleston, built on previous years’ momentum by raising roughly $50,000 total to benefit the Michael J. Fox Foundation and its goal to find a cure for Parkinson’s disease. Around 500 people participated in the event, Manahan said.
Luke Ellis finished the race in first place with a time of 18:30 during this year’s Fox Trot for Parkinson’s Research.
The race began at the Capitol Market, where participants worked their way through downtown before reaching its halfway point at the state Capitol Complex, and then coming back to the market for the finish.Luke Ellis came in first with a time of 18:30.2. Seth Conner finished second with a time of 20:34.6. Logan Hostuttler finished third with a time of 21:07.8.
The Fox Trot was held in conjunction with the Capitol Market Green Chili Shootout, one of the nation’s largest green-only chili events.
Manahan said Charleston’s awareness of Parkinson’s and its challenges has seen a jump since the inception of Fox Trot and the Charleston Parkinson’s Support Group, which he also founded.
Parkinson’s disease is a chronic and progressive disorder that affects movement. Symptoms range from a mild tremor to physical incapacitation.
Nearly one million people live with Parkinson’s in the U.S., according to the Parkinson’s Disease Foundation. Its cause is unknown.
Manahan, who is also president of the Charleston-based public relations firm The Manahan Group, said living with Parkinson’s is by no means easy. But the success of Fox Trot and the support group has given him hope and motivation to keep fighting for a cure.
“If you give up, you lose,” he said. “You’ve got to keep going.”
Reach Max Garland at max.garland@wvgazettemail.com, 304-348-4886 or follow @MaxGarlandTypes on Twitter.
NSW Nationals senator John 'Wacka' Williams has revealed he was diagnosed with Parkinson's Disease last year.
NSW Nationals Senator John 'Wacka' Williams has revealed he was diagnosed with Parkinson's Disease last year.
All too often we hear of high profile over-60s being diagnosed with Parkinson’s Disease.
This time around a Turnbull Government senator has revealed he has the incurable disease.
NSW Nationals senator John ‘Wacka’ Williams was diagnosed with Parkinson’s Disease last year.
He told the ABC that his doctor has given him the all clear to serve out his term as a senator, which ends in 2019.
Senator Williams decided to reveal his diagnosis because he was “sick” of people asking him why he wasn’t walking so well.
“So I thought, ‘Look, I’d put it out in the public arena, so then [I] can let people know, and get on with my life’,” he told the ABC.
“I had a long and lengthy chat to my wife Nancy about this a couple of nights ago and thought, ‘People are asking me what’s wrong, they’re asking my brother, they’re asking my wife, why isn’t he moving as well as he should be?'”
The 62-year-old, who was first elected to the Senate in 2007, doesn’t want people to treat him any different as a result of his diagnosis.
“Just treat me as normal, because I am basically normal except for the movements in my body,” he said.
Parkinson’s cannot be cured, but the effects can be managed with medication.
Former Balbriggan mayor, Frank Snowe talks to John Manning about living with Parkinson's and why he's decided to parachute from an aeroplane
Former Balbriggan Mayor Frank Snowe is preparing to do a parachute jump in Perth
A former Mayor of Balbriggan is preparing to parachute from a plane at the age of 65 to raise money and awareness for Parkinson's disease, a condition he was diagnosed with 16 months ago.
Frank Snowe is a well known former Balbriggan town councillor and wore the town's mayoral chain for a year as the Cathaoirleach of that council but for the last couple of years, Frank has been waging a private battle with Parkinson's disease and now he wants to help other people with the same condition.
Frank has found a lack of information and support in the area for people suffering with Parkinson's with the nearest support groups for the condition meeting as far away as Dundalk and Malahide. The former Balbriggan mayor now wants to set up a new support group serving people affected by Parkinson's in Balbriggan and Drogheda, and any point in between.
To that end, he's decided to raise some cash and publicity for his new mission by jumping out of a plane in Australia along with his granddaughter.
When we meet, Frank who was always know for his one-liners, joked about the adventure, saying: 'Well, I decided if I'm shaking all the time, I might as well have a good reason to shake.'
Explaining how the skydive idea came about, he said: 'The idea came from my granddaughter. My son-in-law in Australia did a sky jump about three years ago and his daughter, my granddaughter wanted to do it with him but she was only 10 or 11 but you had to be at least 12 to legally do it.
'So, she was over here on holidays in September and I told her I was going over there (to Australia) and she said to me, well are we going to do the sky jump because I promised her when she was 12 that we could do it.
'So, I said OK, never really thinking we would do it until I got a phone call a couple of weeks ago and Emma (Frank's granddaughter) said she can't wait for me to go over so we can jump out of a plane - so we're going for it.'
Since being diagnosed in November of 2015 with Parkinson's, Frank has found access to information and support difficult. He said: 'I've been a little disappointed with how Parkinson's is dealt with here. You are told by a doctor you have Parkinson's and maybe you can't see a specialist for 12 or 15 months so what do you do? You look up Google or whatever because there's nothing else there for you. In fairness, to the Parkinson's Association of Ireland, they do their best and I wouldn't knock them at all but they haven't really got the funding they need.'
That is why, the money raised by Frank's sky dive will help establish a local support group with the help of the association.
Frank explained: 'I put two and two together and decided that along with doing the jump in Australia, I would do some fundraising for Parkinson's and see if I could possibly help anybody else in the area in Drogheda or in Balbriggan who have Parkinson's and set up something locally and link in with the association.'
The former Balbriggan Mayor believes there is a lot of ignorance among the general population about what living with Parkinson's involves and he is anxious to explain how the condition affects his daily life. One of the most difficult challenges he has faced in dealing with the condition is its impact on his mental and emotional health.
He explained: 'Every week I go to a certain pub in Balbriggan and meet two pals of mine. To be honest, it's not out of choice - I'm sent out.
'One of the things about Parkinson's is that you become a bit antisocial. My missus insists I go down and when I get down there, I do enjoy it but the thoughts of going out and meeting people kills me. I don't know why.'
Frank added that before he was diagnosed: 'I had mood swings and terrible depression without any reason to feel depressed - I would sit at the window and just stare into space and people would come to visit and tell me I was in bad form and what's wrong with me and I'd say 'nothing'.'
The difficult with the condition is that it is hard to recognise in its early days until it physically manifests itself with the familiar tremors.
Frank explained: 'You are told you have Parkinson's when you develop tremors and there's no test for it up to that point but there are 10 early signs of it that you wouldn't know to look for unless you already suspected you had Parkinson's.
'In the early stages, I had gone some peculiar changes in the last couple of years and I couldn't understand what they were.
'I went from being a very outgoing sort of person who had no problem standing up in front of people and speaking publicly, to someone who wanted to sit at the back of the room and didn't want to be involved in anything.
'There were simple little signs like I had fallen a couple of times. Walking along, my right leg would stop all of a sudden and I would stumble.
'Personality-wise, I gave up golf after playing the game all my life since I was a kid and loving it - I just walked off the course one day and never went back and felt total apathy about it.'
Some of the physical impacts of the condition were first noticed by Frank's wife of more than 40 years. As the couple walked hand-in-hand, she noticed Frank's arm would sometimes stiffen. These and other clues eventually led to medical investigations and then a diagnosis.
Frank remembers receiving that initial diagnosis: 'She (the doctor) said: 'Frank, what did Doctor Google have to say about this?' And I told her: 'Dr Google said it's probably Parkinson's.' And she said: 'Unfortunately, I think Dr Google is right.'
The former Balbriggan town councillor said: 'It made sense of all the things that had been happening to me over the course of a couple of years and explained why I'd felt depressed and all of that so although it came as a shock, it also came as a relief that I wasn't going nuts and I was able to name it and then figure out what the hell I do about it.'
But it was after diagnosis, that Frank began to encounter problems with the system here and found a lack of information and support and lengthy waits to see a medical specialist.
He said: 'There was an appointment made for me to see a specialist in Beaumont in November of 2015 and I finally got to see the specialist in January of this year.'
Frank wants to make those early days of diagnosis a little easier for people in the Drogheda and Balbriggan area by providing a support network for people with the condition that not only provides the necessary information and support in those early stages but also provides continued support for people as the disease inevitably progresses.
In that mission, Frank has taken some inspiration from his nephew, Keith Duffy and his determined charity work for autism. Frank said: 'He gave me the idea to try to turn something bad into something positive and useful.'
He added: 'In a year's time I would like to see people who are out there and in the same boat as I am and have nobody to talk to about it, they have a place to go. Unless you have Parkinson's it is very difficult to describe what it is like and maybe we can help a few people.
'I've built up contacts over the years and I'm fairly good at organising things and know how to chair a meeting so maybe I can use some of those skills to help.'
Asked about his own attitude to the disease, he said determinedly: 'Live with it, get on with it and don't let it beat me - that's my attitude to it. But I know that is very hard to do.
'As time goes on I've got better at dealing with it and this parachute thing and the idea of setting up the group has given me a goal to reach for. It gives me a mission.'
To people who are newly diagnosed with Parkinson's, Frank has some simple but insightful advice. He said: 'If you are newly-diagnosed, I would say first, don't panic. Don't panic and don't keep it to yourself and don't be embarrassed about it.'
The former Mayor said that anyone interested in joining a new support group for people affected by Parkinson's disease from the Balbriggan and Drogheda area, you can contact him by email at franksnowe@gmail.com
If you want to donate to his skydive challenge, go to https://give.everydayhero.com/ie/frank-snowe-charity-sky-dive
INDIANAPOLIS -- A retired art teacher is using his passion for painting to fight his battle with Parkinson's disease.
“There’s just a lot of thoughts flowing through my brain, and if I don’t grab hold of them that thought could be gone,” said artist Wendell Lowe
Lowe was diagnosed with Parkinson’s disease and colon cancer in 2009, but he said his art and his family’s support helped him get through that troubling time.
“Took a break from teaching. Kinda crawled down a hole and took me a while to get back out,” said Lowe.
Lowe said his art used to look much different than it does now, but its effect is still the same.
“I taught art for 10 years, and I was able to see the difference art can make, just the calming effect of art,” said Lowe. “Before you know it, I’m not thinking about Parkinson’s.”
He said his work puts a face to the demons he’s facing inside – the ones behind his shakes and tremors.
And he hopes his art not only helps him fight the disease but hopefully, it can help others know they’re not alone in their struggle.
“That’s my new philosophy,” said Lowe. “Just enjoy the process and see what comes out.”
March 11, 2017 Steven T. DeKosky, MD; Sam Gandy, MD
Editorial
Over the past 3 decades, the focus on the molecular pathogenesis of Alzheimer disease (AD) has led to remarkable advances in our understanding of the emergence of symptoms and the course of the disease.
Biomarkers derived from growing knowledge of the pathobiology have enabled identification of amyloid plaques in both symptomatic and cognitively normal individuals, the latter potentially identifying a population at high risk for dementia. About 20 genes have been identified as being associated with increased or decreased risk for late-onset AD (LOAD). Most of these linked genes have been identified by genome-wide association studies and meta-analyses. Each new gene linked to LOAD fills in another gap in our understanding of AD pathogenesis and also serves as a new potential therapeutic opportunity.
Each of the 20 LOAD genes exerts only a small effect on risk. The exception is the apolipoprotein E (APOE) ε4 allele, identified by linkage studies to a site on chromosome 19 and characterized with studies showing binding of the amyloid-β (Aβ) peptide to cerebrospinal fluid proteins. Apolipoprotein E is by far the most prevalent and potent LOAD genetic risk factor yet discovered: each copy of APOE ε4 triples the risk for AD. Additional alleles conferring LOAD risk with anything approaching the power of the ε4 allele are not anticipated based on the prediction that any susceptibility of equal or greater power as compared with APOEε4 surely would have been identified by now.
Despite the advances in genetics and diagnostic markers, the variability in risk and the limited power of allelic risk candidates (beyond APOE ε4) have led increasingly to the conclusion that environmental factors and toxic exposures must also contribute significantly to the risk for developing LOAD. Some of these factors may well exert their actions via newly recognized pathways of DNA methylation and epigenetic modes of influence. The single most compelling piece of relevant data has emerged from the demonstration that monozygotic twins are usually discordant for AD and/or age at symptom onset, providing prima facie evidence for non-genetic modulators. Identification of the important environmental influences that modulate AD risk represents the next great frontier for discovery. Are there smoking guns to be found on this frontier? Is environmental smoke one of them?
At the present time, among the classic (i.e., exogenous) environmental factors, only head trauma has sufficiently robust data to qualify as a widely recognized and currently accepted risk. Polygenic and/or acquired risk factors associated with increased or diminished risk for AD include vascular and metabolic factors (i.e., body mass, blood cholesterol, and blood pressure), glucose homeostasis (i.e., blood glucose and insulin resistance), and exercise. Many of these risks are relevant less at the age at onset of LOAD and more relevant if they have been present in midlife.
The situation in AD contrasts with that in Parkinson disease, another neurodegenerative disorder. 1-Methyl-4-phenyl- 1, 2, 3, 6-tetrahydropyridineandcertain pesticides are now linked convincingly to the risk for Parkinson disease. Among the best known historical associations of environmental toxins with dementing disorders were cycads in Guamanianamyotrophic lateral sclerosis (amyotrophic lateral sclerosis–Parkinson disease complex) and aluminum in AD. However, each of these putative toxin-causing dementia hypotheses has been challenged and, at present, neither is generally accepted to be an authentic association.
The presence of early olfactory and entorhinal pathology in AD has led to speculation that an inhaled agent might be implicated in initiating the disease given (1) the exposure of the olfactory neurons to the environment and their direct connections to the rhinencephalon and (2) the systemic access granted by alveolar entry. Recently, aerosolized vehicular combustion fumes and secondhand smoke have been implicated in both clinical epidemiological and neuropathological studies. Dramatic reports from Calderon-Garciduenas et al revealed diffuse amyloid plaques and inflammation in the brains of children and young adults residing in Mexico City, where the air quality ranks among the worst on the planet.
Transcription of the Alzheimer amyloid precursor protein gene is regulated by acute phase reactant molecules, leading to rapid increases in the levels of amyloid precursor protein and its metabolite Aβ immediately following chemical or traumatic injury. Based on this well-documented phenomenon, one of us (S.G.) examined brain Aβ40 and Aβ42 levels in the brains of mice exposed to an inhaled toxin model of air pollution that used exposure to atmosphere containing aerosolized nickel nanoparticles (NiNPs). Although we expected to see an elevation in brain Aβ following NiNP exposure, we were startled at the rapidity of the effect (i.e., following 3 hours of exposure of the mice to NiNP). This immediate effect was consistent with data reported by one of us (S.T.DeK.) showing rapid elevation and deposition of brain Aβ following severe traumatic brain injury.
Promotion of cerebral amyloidosis is not the only manifestation of inhaled toxin exposure. Davis and colleagues demonstrated important damage to the hippocampal neurons of mice exposed to ambient levels of vehicular aerosols. These and other new frontier studies suggest that many new environmental, genetic, epigenetic, and interaction factors should be explored as a matter of public health stewardship.
In this issue of JAMA Neurology, Richardson and colleagues demonstrated significant elevations of levels of dichlorodiphenyldichloroethylene (DDE), the major metabolite of dichlorodiphenyltrichloroethane (DDT), the common insecticide, in the brains of patients with AD. They also confirmed a strong correlation of serum levels of DDE with brain levels. While the use of DDT has been significantly restricted in the United States for decades (since the environmental damage revealed by Rachel Carson in The Silent Spring), the mean differences in DDE concentrations between AD cases and non-demented control brains were obvious, and some of the DDE levels observed in the AD brains were quite extraordinary.
There are weaknesses in the Richardson et al study, and they are reflective of the typical difficulties in determining environmental risks and/or exposures, especially when exposures occur early in life but clinical manifestations do not appear until many decades later. Issues include (1) variability of the time of and duration of exposures; (2) individuals’ recall of exposures; (3) timing of biological sampling; (4) stability of samples and compounds; (5) proximity of exposure to symptoms (especially of a disorder like AD, where pathological change may develop over decades and subsequent emergence of clinical symptoms is slow and insidious); and (6) how long after exposure the toxic agent (eg, lead in the bones or metabolites in the serum) can be identified. Importantly, variability in the effects of such exposures may also be affected by individual variation in the brain’s reaction to the agent (eg, elevation of amyloid precursor protein and possibly Aβ by DDE, as proposed in this case) and by individual variation in absorption, distribution, metabolism, and excretion of the toxin, as suggested by Richardson et al.
For Brain Awareness Week 2017, the Ontario Brain Institute is featuring five personal stories about living with a brain disorder. In this video, Chris (a researcher at the University of Waterloo studying neurodegenerative disorders and a person with lived experience) tells us about Parkinson's disease including some of the misconceptions that surround it and what we can do to tackle them.
The 23rd Parkinson’s Unity Walk will take place on April 22 in New York City’s Central Park, according to The Parkinson Alliance. The walk is the largest grassroots fundraiser for Parkinson’s disease research in the U.S.
Thousands of patients, caregivers, family, and friends will gather for the walk (or participate from home) to raise money for the cause.
“Together, one day we will achieve our shared goal of ending Parkinson’s disease. There have been advancements in research and therapies, and the Unity Walk is a way to raise funding for research and keep the progress going,” Martin Tuchman, Chairman of The Parkinson Alliance, said in a news release.
Parkinson’s disease (PD) is a chronic and progressive movement disorder, meaning that symptoms (such as tremors, slowness of movement, stiffness, and impaired balance) continue and worsen over time. Nearly one million people in the U.S are living with the disease, according to the Parkinson’s Disease Foundation. The cause of PD is unknown.
“Each person diagnosed with Parkinson’s disease will have different symptoms and progression. It is important to be equipped with knowledge about the disease, tools to fight it, and the support of an entire community,” Carol Walton, Executive Director of the Parkinson’s Unity Walk, said. “Join us at the Unity Walk and you will have the opportunity to meet with Parkinson’s organizations, healthcare experts, nationally recognized Parkinson’s disease exercise programs, and movement disorders centers. Watch exercise demonstrations and visit the booths of sponsors to learn about current medical therapies.”
Sponsors include Acorda Therapeutics, Abbott, Impax Laboratories, AbbVie, CurePSP, NeuroDerm, GE Healthcare, Lundbeck, LSVT Global, Medtronic, UCB, and US WorldMeds.
For more information on how to register or donate, go to the Parkinson’s Unity Walkwebsite at http://www.unitywalk.org
Parkinson’s disease patients are known to be at a higher risk of falling, due to the changes in the brain caused by the disease. Recently, a study found that exercise may help prevent these falls.
Researchers found that 25% of recently-diagnosed Parkinson’s patients suffer a fall in their first year of living with the disease. The finding is a surprise because one would think falls would increase during later stages of the disease.
Furthermore, other statistics showed that more than 70% of patients who had lived with the disease for 16 years had suffered falls.
“You are at more risk of falling if you have already had a fall. That’s why it’s important to take falls seriously, particularly at an early stage of the disease,” the author of the research, Ylva Hivand Hiorth, PhD, of Stavanger University Hospital, in Norway, said in a news story. The findings are from her doctoral thesis.
Parkinson’s causes some people to struggle with walking and sustaining balance, while others might experience tremors or rigidity of the muscles. The disease affects about 1% of the world population who are more than 60 years old, according to the news story. In people 70 and older, the number rises to 4%. Estimates show that prevalence might double by the year 2030, as life expectancy increases.
Hiorth established not only that falls at early Parkinson’s stages are fairly common, but she also identified the risk factors that reveal who is more likely to suffer an early fall.
One way to incorporate her risk factor findings would be to classify the disease into sub-groups with similar dominating symptoms. Hiorth found that those who belong to the sub-groups not dominated by tremors often are at higher risks of falling at an early stage of the disease.
“We have found that ‘established fallers’ are more difficult to help. Our hope is that the earlier we can intervene, the more we can do to prevent falls,” Hiorth said.
Moreover, while dopamine-replacement medication can suppress some symptoms, it does not prevent falls. So, what can? Hiorth believes that, in combination with new medicines, exercise could be a game-changer.
For instance, one study showed that tai chi, a gentle Chinese martial art, could help Parkinson’s patients achieve good results in preventing falls. Routines that strengthen the lower limbs also can help, as well as balance-boosting exercises such as yoga or pilates.
“The most important investment someone can make is to find a type of exercise that they enjoy,” she said.
The trick is not to let the disease make you less active; however, the activity should be adapted to how you feel and your limitations.
Hiorth suggested that another alternative would be for patients to be allowed to stay in hospitals’ rehabilitation wards, which is not common practice, but might become increasingly popular if research can demonstrate the benefits.
“If we manage to prevent early falls, this will give patients living with Parkinson’s a better life and the confidence to stay as active as possible,” Hiorth added.
People with brain diseases, particularly older people, have trouble swallowing. Credit: www.Shutttertock.com
Recall that last time you had something "go down the wrong pipe"? You spent the next several minutes coughing, choking and feeling like something bad was in your throat.
It may seem strange to say this, but count yourself lucky.
Your brain was making you do the right things to keep what you drank or ate out of your lungs. The path for air to enter our lungs, the larynx (or voice box), is very close to the upper esophageal sphincter, the entry point for food and liquids to our esophagus. This close anatomical relationship of these two entry points means the brain must coordinate breathing, eating and drinking to ensure the lungs get only air and the esophagus gets only food or liquids. This coordination happens unconsciously, so we never really think about it until we get food or liquid in our airway.
As it turns out, millions of people with brain diseases, including those with Alzheimer's, Parkinson's, Lou Gehrig's disease, stroke, multiple sclerosis and traumatic brain injury, have impaired swallowing. As a result, they are unable to protect their lungs in the way that a healthy person can.
The result is that millions of brain disease patients are at risk for inhaling food and saliva into the lungs, leading to death by pneumonia or even choking.
Detecting and treating impaired swallowing is important, particularly as the nation's nearly 70 million baby boomers continue to age. Impaired swallowing is associated with many conditions of the elderly, and it is often severely underreported. Clinicians may not detect it or may see it as a side effect of another condition.
As a neuroscientist who has studied brain diseases, I know of no pharmaceutical companies that have drug discovery programs aimed at restoring weakened swallow and cough. And yet, it's a major problem.
Hard to swallow, easy to choke
An important part of swallowing is complete closure of the larynx while food is moving through the throat. Disordered swallowing, or dysphagia, limits the ability of the muscles in the mouth and throat to move liquid or food into and through the esophagus and on to the stomach.
This inability to protect the airways and lungs increases the risk of pneumonia or choking.
In addition, many people with brain disorders experience reduced coughing, or a weakened ability to activate breathing muscles to generate airflows that eject material from the lungs. Weakened cough is caused by problems with nerves in our lungs that detect foreign material or with the brain driving the respiratory muscles.
Disordered swallowing can also be caused by problems with nerves in the neck. For example, people who have had cancer of the head or neck often undergo extensive surgery to remove the diseased tissue. This process can inadvertently damage nerves that are important for swallowing.
Sometimes, the swallowing impairment, rather than the primary brain disease, actually leads to death. When swallowing is impaired, it is more likely that material will enter the lungs and trachea during eating or drinking. This is known as aspiration. Aspirated food or drink "seeds" the lungs with material that is coated with pathogens from the mouth. These pathogens are not normally present in the lungs and can cause chronic inflammation and serious bouts of pneumonia.
When a weak cough is a bad sign
In patients with acute stroke, severe swallow and cough impairments occur at the same time. Our research has shown that the risk of aspiration due to swallow impairment can be predicted by weakened cough in patients with stroke or Parkinson's disease. These findings indicate that brain diseases can lead to multiple impairments in how we protect our airways.
Another way of thinking about this problem is that the nervous system has many tools, or reflexes, that it uses to perform certain tasks. Each reflex has a specific function, and the brain coordinates the time of occurrence of each to optimize the result.
For example, a cough can eject material out of the airways into the throat and out of the mouth. Swallows frequently occur just after coughs to move material that was deposited into the throat into the esophagus and then the stomach. The result is that lungs were cleared by coughing, and swallowing moved any remaining material out of the throat to prevent aspiration.
Nearly half of residents of long-term care facilities vulnerable to pneumonia
Simultaneous impairments of cough and swallow lead to high aspiration risk. This high risk is due to seeding of the lower airways with harmful pathogens that increase the risk of pneumonia. Mortality rates of aspiration pneumonia have been reported of over 60 percent, leading to a US$4.4 billion medical burden from hospitalized patients alone in 1997. Aspiration pneumonia costs as much as $17,000 per hospital admission. Further, this type of pneumonia can occur in as many as half of long-term care residents.
When members of our research team talk to their friends about airway protection and its consequences, everyone seems to have a story. Most center around an older relative who had a brain disorder and the difficulties this person had eating. Often their relative choked when eating or had to eat special thick foods. These are signs of impaired swallow, cough and aspiration.
Speech pathologists specialize in diagnosing and treating swallowing disorders. They often recommend thick foods that are easier to swallow and less likely to penetrate the airways during swallowing. This clinical approach is the most well-accepted.
Some companies market devices that apply a weak electrical current to the neck to improve swallowing. The long-term benefit of these devices is controversial. Further, these therapies have not been shown to enhance a weakened cough reflex.
There are no drugs for the treatment of impaired swallow or cough. It appears that the pharmaceutical industry has not yet recognized the importance of prevention of aspiration in patients with neurological disease in disease outcome.
A team in Japan has promoted a comprehensive protocol using sensory stimuli such as menthol and capsaicin, the pungent ingredient in red peppers, to help elderly people who have serious impairments in swallowing. Their preliminary results show impressive improvements in reducing aspiration pneumonias in these patients.
There is a promising approach based on strengthening breathing muscles that has been shown to improve swallow and cough function in patients with Parkinson's disease and stroke. This approach is called "expiratory muscle strength training," and it is easy for health care professionals and most patients to perform. The extent to which this method can prevent pneumonia in at-risk patients is unknown at this time.
In short, while there are some promising approaches, there are no widely accepted therapies for restoring weakened swallow and cough in patients at significant risk of aspiration. Continued research on the fundamental neurological mechanisms of coughing and swallowing will provide a foundation for new therapies to reduce the occurrence and severity of aspiration pneumonia.
Users of the Allen Cell Types Database can explore the morphological and electrophysiological properties of individual neurons from the mouse visual cortex. Credit: Allen Institute
The Allen Institute for Brain Science has released additional data and computer models of cell activity for inclusion in the Allen Cell Types Database: a publicly available tool for researchers to explore and understand the building blocks of the brain.
"Comprehensive coverage of hundreds to thousands of cells will be crucial for scientists who want to explore the diversity of nerve cells in the brain, and provides a base from which we can parse cells into meaningful types," says Lydia Ng, Ph.D., Senior Director of Technology at the Allen Institute for Brain Science. "This release is one more step in building a fundamental framework to help make advancements in neuroscience."
Models serve as a critical link between observed data and theories about how cells work, enabling scientists to understand the mechanisms that give rise to neuron function. Two types of models have been added and updated as part of this release. The first set are models that reduce the complexity of neurons and use cell measurements to "predict" the activity and function of those cells, which are now available for 633 neurons in the database.
Additionally, more sophisticated neuronal models based on cell shape, morphology and subcellular components are now available for hundreds of neurons via an interactive web browser.
The Allen Cell Types Database contains detailed descriptive features gathered from individual neurons in the mouse brain, including location, electrical activity and shape. For this release, electrophysiological recordings from an additional 130 cells from the cortex have been added to the database.
The Allen Cell Types Database (celltypes.brain-map.org) is a fundamental resource of the Allen Institute's ten-year plan to understand how activity in the brain leads to perception, decision-making and action. Understanding cell types—the brain's building blocks—is critical to making sense of both how the healthy brain functions and what goes wrong in diseases such as autism, Alzheimer's and Parkinson's.
Additional updates to Allen Brain Atlas resources are planned for June and October of 2017.
Dance for PD®, celebrating its 15th anniversary next year, offers specialized dance classes to people with Parkinson's, their families, friends and care partners in six locations around New York City and through our network of affiliates in more than 100 communities in 16 countries around the world. Dance for PD classes allow people with Parkinson's to experience the joys and benefits of dance while creatively addressing symptom-specific concerns related to balance, cognition, motor skill, depression and physical confidence.
Watch the promo video below!
The program's fundamental working principle is that professionally-trained dancers are movement experts whose knowledge about balance, sequencing, rhythm and aesthetic awareness is useful to persons with PD. In class, teaching artists integrate movement from modern, ballet, tap, folk and social dancing, and choreographic repertory to engage participants' minds and bodies and create an enjoyable, social environment for artistic exploration.
A collaboration between the Mark Morris Dance Group and the Brooklyn Parkinson Group, the Dance for PD program provides teacher training, nurtures relationships among other organizations to foster classes around the world, and offers an acclaimed At Home DVD series available for purchase. An advisory board, made up of world-renowned neuroscientists, neurologists, health care professionals and researchers, provides guidance and stewardship.
Dance for PD has been featured in The New York Times, USA Today, Dance Magazine, The Guardian and hundreds of other publications, as well as on NBS, ABC, CBS, CNN, PBS and NPR. The program has been honored by several awards, including the Parkinson Awareness Award, Alan Bonander Humanitarian Award, the Sapolin Award for Public Service from the New York City Mayor's Office for People with Disabilities, and the William Pearson Tolley Medal for Distinguished Leadership in Life Long Learning.
A growing body of scientific research conducted at a number of major university research centers around the world including Roehampton University, University of Florida, Queensland University of Technology, York University and the University of Freiburg points to the benefits of dance for people with Parkinson's. A number of leading neurologists and movement disorder specialists around the world include Dance for PD classes among a shortlist of recommended activities for their patients.
Core Program Initiatives
Sustain current flagship classes in New York City, and expanding class offerings with the goal of having classes in all five boroughs by 2016.
Foster collaborative partnerships among Parkinson's disease, arts, and medical organizations in other cities around the world to support establishment and sustenance of classes based on the Brooklyn model.
Train, nurture and certify qualified teachers in the Dance for PD approach and best practices, and sharing information with administrators and PD group coordinators so that they can carry out administrative best practices in support of local Dance for PD programs.
Offer engaging community classes and informative conference demonstrations, taught by founding teachers and Mark Morris Dance Group teaching artists, to share the joys and benefits of dancing with communities that haven't yet been exposed to the program.
Create and distribute innovative, user-friendly instructional media products-including an At Home DVD series, Google Glass App, and live streaming capacity-to bring the power of dance and music into peoples' everyday lives.
Develop and maintain online resources that serve to support, enhance, and expand the program's mission as well as create a virtual network in which information and ideas can flow freely and enhance the working knowledge of practitioners and participants.
To fulfill our mission, we collaborate with key global partners including Dance for Parkinson's Australia, the Dance for Parkinson's Network UK and Dancing with Parkinson's (Toronto) as well as organizations like Houston Ballet, English National Ballet, GOTRA Ballet (Netherlands), Canada's National Ballet School, Berkeley Ballet Theater, University of Florida, Seattle Theatre Group, Danspace (Oakland), and Queensland Ballet, among others.
The Dance for PD® approach
The Dance for PD® program is built on one fundamental premise: professionally-trained dancers are movement experts whose knowledge is useful to persons with PD. Dancers know all about stretching and strengthening muscles, and about balance and rhythm. Dancers know about the power of dance to concentrate mind, body and emotion on movement because they use their thoughts, imagination, eyes, ears and touch to control their bodies every day.
Please see an excerpt from our film Why Dance for Parkinson's Disease. This film, made possible by a lead grant from the National Parkinson Foundation, recently won first place in the Society for the Arts in Healthcare's 2010 Film Festival.
Dance for PD® teaching artists integrate movement from modern and theater dance, ballet, folk dance, tap, improvisation, and choreographic repertory. The Dance for PD® class is an aesthetic experience that uses the elements of narrative, imagery, live music and community to develop artistry and grace while addressing such PD-specific concerns as balance, flexibility, coordination, isolation and depression.
The classes engage the participants' minds and bodies, and create an enjoyable, social environment that emphasizes dancing rather than therapy. Active demonstration by professional dancers inspires participants to recapture grace, while guided improvisation fosters creativity, and experimentation with movement.
"The fundamentals of dancing and dance training-things like balance, movement sequencing, rhythm, spatial and aesthetic awareness, and dynamic coordination-seem to address many of the things people with Parkinson's want to work on to maintain a sense of confidence and grace in their movements. Although participants from all over the world tell us they find elements of the class therapeutic, the primary goal of our program is for people to enjoy dance for dancing's sake in a group setting-and to explore the range of physical, artistic and creative possibilities that are still very much open to them."-David Leventhal, Dance for PD founding teacher, Brooklyn, NY
Program background
Dance for PD® started as an idea, was born as an experiment, and has emerged as an innovative global program that has launched in more than 100 communities in 9 countries, impacting thousands of people with Parkinson's, their families, and carepartners.
In 2001, Olie Westheimer, the Founder and Executive Director of the Brooklyn Parkinson Group (BPG), approached the Mark Morris Dance Group (MMDG), an internationally-acclaimed modern dance company that had just opened a new dance center in Brooklyn. Olie proposed the idea of a rigorous, creative dance class for members of her group. She also knew from her own dance background that professional dancers train their minds and bodies to execute difficult movement with confidence, power and grace. In doing so, they develop cognitive strategies that she thought could be naturally beneficial and enjoyable for people with Parkinson's.
That year, two dancers from the Mark Morris Dance Group-John Heginbotham and David Leventhal-along with a professional musician, started leading monthly classes for about six people. A third dancer, Misty Owens joined shortly the teaching team shortly after, and composer and pianist William Wade became the program's lead musician in 2003. From the beginning, the Brooklyn classes were-as they still are today-offered free of charge in a state-of-art building devoted to dance.
In 2004, MMDG begin leading Dance for PD® classes in cities where the company toured, and developed a training program for dance teachers soon after. Dance for PD®'s founding teachers have offered more than 100 free demo classes and more than 30 teacher training workshops around the world. The original Brooklyn program serves as a model and inspiration for a growing network of Parkinson's dance classes in 30 U.S. states, and in Mexico, Canada, Australia, England, Scotland, Italy, Germany, Holland, Israel, and India. Meanwhile, enrollment in the Brooklyn and Manhattan flagship classes now averages 45-50 participants a week.
Throughout its expansion, the Dance for PD® teaching approach has remained true to Olie's vision and fundamental ideas: that professionally-trained dancers are movement experts whose knowledge about balance, sequencing, rhythm and aesthetic awareness is useful to persons with PD; that all classes welcome and include people of all abilities, as well as families, friends and caregivers; and that the class is about the art, technique, and fun of dancing, not about Parkinson's and not called therapy. Simply stated, the class allows participants to explore the range of physical and creative possibilities that are still very much open to them.
The program has also been an important catalyst in creating active, engaged Parkinson's communities where there were none. In the act of dancing together, people learn together, talk together, and inspire each other to explore their creative and physical potential through group singing, yoga, and fitness classes that complement their dance training.
As the program continues to grow, its teachers and leaders try to chart a course that is ever respectful and aware of local community needs, interests, and diversity. But whether the classes take place in Brooklyn, Edinburgh, or Pune, India, the fundamentals are the same: dance and music of the highest quality led by teachers and musicians who are sensitive, knowledgeable and passionate. And with its inclusive philosophy that welcomes all, regardless of ability or level of mobility, the program inspires people with Parkinson's-and those close to them-to experience the grace, fluidity, and joy that dancing brings.
Where we've been
In addition to offering two simultaneous weekly classes for more than 50 participants at the Mark Morris Dance Center in Brooklyn, NY, MMDG/BPG have offered Dance for PD® master classes to communities in San Francisco, Oakland, Berkeley, Louisville, Ann Arbor, Seattle, Urbana-Champaign, Cincinnati, Indianapolis, Orlando, Denver, Erie, Philadelphia, Toronto, Edinburgh, London, Auckland, and Tel Aviv, among others. Such medical centers as Evergreen Hospital (Seattle), Jewish Hospital/Frazier Rehabilitation Institute (Louisville), Carle Hospital (Champaign-Urbana) and Beth Israel Deaconess (Boston) have hosted Dance for PD demonstration classes in their facilities. Such medical centers as Evergreen, Shands (University of Florida), Florida Hospital/Orlando, and Emerson Hospital (MA) regularly offer Dance for PD classes as part of their outreach programming.
MMDG/BPG's teacher training workshops have led to the replication of Dance for PD® classes in more than 100 communities throughout the United States, Australia, Canada, Germany, Italy, India, Israel and the United Kingdom.
The Dance for PD® method has been presented at the International Congress for Parkinson's Disease and Related Disorders in Berlin (2005), the World Parkinson Congress in Washington, D.C. (2006), Neuroscience 2008 in Washington D.C., and at the 2010 World Parkinson Congress in Glasgow. Dance for PD® has been featured as a model program at the Society for the Arts in Healthcare's annual conference (2010), highlighted in forums and webinars sponsored by such organizations as Grantmakers in Health and Grantmakers in Aging, and invited to present at the 2013 Culture, Health & Wellbeing International Conference in Bristol, UK and the 3rd World Parkinson Congress in Montreal, Quebec October 2013.
The program's focused initiatives in replicating classes, training teachers, and providing comprehensive support resources for teachers, administrators, medical professionals and participating communities around the world have been made possible by our generous and committed institutional and individual supporters.
