Poem by Maryum "May May" Ali Read at the 19th Parkinson's Unity Walk

May May Ali wrote and read the following poem on the day of the 19th Parkinson's Unity Walk, held on Saturday, April 27, 2013.  This has become somewhat of a tradition and the Unity Walk considers May May Ali our Official Unity Walk Poet.

“CLRO1” By May May Ali   How can the progression of Parkinson’s be slowed down or even stopped? Some of the funds raised today will be used to research this plot. The story will begin with a villain, with a major role in the disease. Now, this may get a bit complex, so be patient with me please. The clumping up of proteins is a process of PD. An Alpha-Synuclein is the protein, you see. If this clumping would just stop, it would be a Parkinson’s wish. Guess what, researchers have stopped it in a Zebra fish. I know you might be thinking, how could this be done? Our hero is a molecular tweezer called CLR01! Since I’m not a doctor, I’ll end it here and suggest what you can do. Get informed about research that can ultimately benefit you.

THE NAZI DISCOVERER OF L-DOPA FOR PARKINSON'S DISEASE

7th April 2014 - New research

Journal of the History of the Neurosciences 2014 Apr 3 [Epub ahead of print] (H.Czech, L.A.

Zeidman) Complete abstract : http://www.ncbi.nlm.nih.gov/pubmed/24697654

Walther Birkmayer, an Austrian neurologist, co-discovered the effectiveness of L-dopa for

Parkinson's Disease in 1961. However, Birkmayer was a member of SS and a member of the

Nazi party. Little has been previously published regarding Birkmayer's ties to Naziism.

Researchers have determined that Birkmayer was not only

an early illegal member of the SS and the Nazi party but

also took part in "de-Jewification". He also was a leader in

the Nazi racial policy office and was praised for his

dedication and fanaticism despite being forced to later

resign from the SS. He sought support from leading

Viennese Nazis and was able to maintain his professional

status for the war's remainder.

Postwar, he succeeded at reintegration personally and professionally into Austrian society, all

but erasing any obvious ties to his Nazi past. In 1960 Dr. Hornykiewicz demonstrated that

dopamine levels were below normal in the brains of people who died of Parkinson's Disease.

He and Dr. Arvid Carlsson, believed that L-dopa, a precursor in the biosynthesis of

dopamine, could treat Parkinson's Disease. Dr. Hornykiewicz and Dr. Birkmayer began to

treat patients with L-dopa. They noticed marked short-term improvements. They published

their findings in 1961, which eventually led to L-dopa being the most widely used treatment

for Parkinson's Disease. For more information go to Walther Birkmayer :

Dexterity and Parkinson's Disease

 

How can I minimize embarrassing dexterity problems?

Dexterity problems can include fumbling for bills, change, and credit cards at checkout counters. Staying at home is a great temptation when your symptoms are showing, but it only deprives you and your spouse or friends of the pleasure of each other's company. And it isolates you. The truth is that few people will even notice your symptoms. A bad tremor while making change is taken for a momentary rattling. Knocking over a glass at dinner? Spilled soup? It happens to everyone.

How can I minimize embarrassing dexterity problems such as fumbling for bills, change, and credit cards at checkout counters?

Some Parkinson’s patients embark on an endless search for the perfect wallet, but the issue is not limited to money. Car keys, theater programs, church bulletins, a glass of wine, or a plate of food at a buffet — worse yet, both a glass and a plate. Everyone drops things. It just happens more frequently with Parkinson’s patients, who carry around this baggage of "disease" that seems to get a little heavier with each mishap.

Compensatory strategies can be helpful: A large wallet for easy access, counting change ahead of time, not using change, asking a friend to hold your drink while you steady a plate, etc. When you encounter a new problem, think about the best way to handle it the next time. And remember, dropping change is a symptom of your disease, not a reflection on your character. The more you are out and about, the more people will see you, and visibility means greater acceptance from others as well as increased confidence. Parkinson’s disease doesn't have to be a prison.

National Parkinson Foundation

April 9

April is Parkinson's Awareness Month and this week is National Volunteer Week - so celebrate both and talk to your local chapter about volunteering!

National Parkinson Foundation - Find a Chapter Near You

www.parkinson.org

National Parkinson Foundation

NPF Statement About PhRMA Report Detailing Parkinson's Drugs in Development

Release date: 3/24/2014

Statement from the National Parkinson Foundation

“We applaud PhRMA for their efforts in reviewing all the US-based pipeline medications, however we believe that they understate the promise of developing disease modifying medications.  Over the past decade, advances in genetics and mechanisms of Parkinson's have advanced our understanding to the point that we are truly targeting mechanisms of the disease in our research.  Last November, NPF announced its 2014 grants program with focus areas to achieve exactly this: advance our understanding of mechanisms that are directly responsible for how the disease progresses.  While advancing today's symptomatic therapies will provide important and necessary relief to today's patients, we hope that current research will point us towards ways to truly slow the disease.”

-Peter Schmidt, PhD, Chief Information Office and Vice President of Research Programs at the National Parkinson Foundation

Joint Statement from Parkinson's Organizations

Parkinson’s Disease Organizations Applaud Efforts to Bring More Drugs to Market, Urge Focus be on Medications that Slow Progression of Disease New report by PhRMA outlines potential advances in drug therapies for people with Parkinson’s disease

This statement is prepared on behalf of The Michael J. Fox Foundation for Parkinson’s Research, the National Parkinson Foundation, the Parkinson Alliance, the Parkinson’s Action Network, and the Parkinson’s Disease Foundation.

(WASHINGTON, March 24, 2014) –The organizations representing the Parkinson’s disease community applaud biopharmaceutical research companies for developing 37 new Parkinson’s disease drugs, but call for more research to find effective medications that would target the disease directly.

In a report released today by Pharmaceutical Research and Manufacturers of America (PhRMA), 37 new drugs are described as in the pipeline to help people suffering from Parkinson’s disease, a chronic, progressive neurological disease affecting up to 1.5 million Americans. Parkinson’s disease is a movement disorder and is the result of the loss of dopamine-producing brain cells. Dopamine, a neurochemical that controls communication between brain cells, is crucial to control of motor function. Motor symptoms may include tremor or trembling, rigidity or stiffness,bradykinesia, postural instability, or impaired balance and coordination. The broad array of non-motor symptoms includes cognitive changes, mood disorders, and sleep disturbance, among others.

Currently there is no cure, therapy, or drug to slow or halt the progression of Parkinson’s disease. While medication masks some symptoms for a limited period, generally four-to-eight years, dose-limiting side-effects do occur after time. Eventually the medications lose their effectiveness, leaving the person unable to move, speak, or swallow.

“We are pleased to see that there are 37 new drugs making their way to patients,” said Amy Comstock Rick, CEO of the Parkinson’s Action Network. “However, the number of new drugs is not as important as whether these medications are ultimately effective in improving the quality of life for people with Parkinson’s. As a community, we will continue to fight to ensure that researchers have the funds and resources they need to bring us closer to drugs or therapies that directly slow or halt the progression of this disease.”

The news that these new drugs are in the pipeline is a sign that the research community is moving in the right direction to find better treatments for Parkinson’s disease. In fact, some of the 37 medications in development are disease-modifying therapies that could potentially halt the progression of Parkinson’s.

For example, one of the medications targets a receptor in the brain that plays a major role in motor control.

All 37 drugs outlined in the PhRMA report were developed by United States-based companies conducting trials in the U.S. and abroad, PhRMA-member companies conducting trials in the U.S. and abroad, and foreign companies conducting clinical trials in the United States. The medicines are either in clinical trials or awaiting review by the Food and Drug Administration. There are many other medications and therapies for Parkinson’s disease developed outside the U.S. that are not included in this report.

Most Common Symptoms of Parkinson’s Disease

April 13, 2014 By SHERRI WOODBRIDGE 

The first most common symptoms of Parkinson’s Disease:

• tremors
• depression
• loss of sense of smell
• stiffness
• arm that won’t swing
• tripping
• handwriting changes – smaller/illegible

It’s important to keep in mind that each case is unique and different and each individual should seek expert medical advice if they are experiencing any of the above symptoms.

Your Symptoms are Unique to You

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by Jackie Hunt Christensen

How to Cope With the Symptoms of Parkinson's Disease

"The only predictable thing about this disease is that it is unpredictable."
- Richard, diagnosed at 36

Tremors are the first sign noted in about half of all people with Parkinson's disease. But maybe, like 15 percent of people with the illness, you have never experienced this symptom. That is because Parkinson's disease affects everyone somewhat differently.

As you will discover, your symptoms will continue to change, often from day to day, and throughout the course of your life. But even though there is no cure for Parkinson's, the sooner you can take steps to manage symptoms when they arise, the better chance you will have at maintaining a good quality of life.

That is why the first step in coping with the changes that accompany a Parkinson's diagnosis is to simply increase awareness, to notice new symptoms as well as how your body responds to certain activities, stresses and therapies. A helpful way to do this is by logging your symptom patterns in a daily journal. It is just a matter of jotting down small changes you notice in your physical and emotional health each day. That way you can discuss these issues promptly with your doctor and receive treatment.

Do What You Can While You Can

"I have had Parkinson's disease for nearly 20 years. My wife is a teacher, so we travel every summer when she is not working. Since my diagnosis, I have been to China, Nepal, Prague, Paris and many other places. The Parkinson's comes along, too, so our trips require more planning than they used to and we involve my care team. We factor in daily naps and take it slow. My balance isn't as good as it used to be and too much walking wears me out so we bring a collapsible wheelchair along or make sure one is available. I also use a cane. I don't know how many more places we will get to visit as my disease continues to progress, but we have made some wonderful memories that we wouldn't have if we had let my Parkinson's dictate every aspect of our lives."
- Nicholas, diagnosed at 52, still traveling at 72

Many people with Parkinson's disease are not allowing the condition to take over their lives. Despite the everyday setbacks they face, they are still creating fulfilling lives for themselves by redirecting their attention to people and activities that bring them joy. You can do the same. Try building a few hobbies into your routine that will give you a break from dwelling on the disease. Find some activities that help you forget about Parkinson's for a while. That may be painting, writing, gardening, or reading to your grandchildren.

Ask for Help

Whether you were diagnosed early in the disease, or have had symptoms for quite some time, there will come a day when you can no longer do something. That may involve carrying a cup of coffee or being able to write down a phone number while you talk on the telephone.

Although asking for help with activities of daily living (ADLs) can be very difficult, particularly if you have never been one to rely on others, you will need to learn how to request and accept assistance as your disease progresses. Drawing from the care and interactions of close friends and family will help you cope better with the illness.

Accept What You Can No Longer Do

Over time, it may seem as though you are losing your independence because you can no longer do all the things you once did. As these losses occur, you will probably go through the five stages of grief identified by Dr. Elisabeth Kübler-Ross. They include denial, anger, bargaining, depression and acceptance. Being aware of the issue or loss to which you are reacting will help you to move from one stage to another more easily.

No matter what your symptoms are, motor or non-motor symptoms, don't let Parkinson's beat you!

The Michael J. Fox Foundation for Parkinson's Research

April12,2014

4 hrs · 

Are you of Eastern European Jewish ancestry, and either have Parkinson’s disease or a family member with the disease?

If so, you may qualify for genetic testing at no cost for an important study investigating the link between Parkinson’s disease and genetics.

Learn more:

Participate in PPMI: Focus on Genetics

Over the past decade, studies of the genetics of Parkinson’s disease have revolutionized the pursuit of a “disease-modifying” treatment — a therapy that can slow or stop the progression of PD.

MICHAELJFOX.ORG

Parkinson's Disease and Pesticides: What's the Connection?

Scientists find a way chemicals may contribute to Parkinson’s

Apr 8, 2014 |By Bret Stetka

The pesticide Parkinson's connection

Thinkstock

What exactly causes Parkinson’s disease is far from figured out. But a clue has been lurking in cornfields for years.

The data confirm it: farmers are more prone to Parkinson’s than the general population. And pesticides could be to blame. Over a decade of evidence shows a clear association between pesticide exposure and a higher risk for the second most common neurodegenerative disease, after Alzheimer's. A new study published inNeurology proposes a potential mechanism by which at least some pesticides might contribute to Parkinson’s.

Regardless of inciting factors — and there appear to be many — Parkinson’s ultimately claims dopamine-releasing neurons in a small, central arc of brain called the “substantia nigra pars compacta.” The nigra normally supplies dopamine to the neighboring striatum to help coordinate movement. Through a series of complex connections, striatal signals then find their way to the motor cortex and voila, we move. But when nigral neurons die, motor function goes haywire and the classic symptoms set in, including namely tremors, slowed movements, and rigidity.

Pesticides first came under suspicion as potentially lethal to the nigra in the early 1980s following a tragic designer drug debacle straight out of Breaking Bad. Patients started showing up at Northern California ERs nearly unresponsive, rigid, and tremoring — in other words, severely Parkinsonian. Savvy detective work by neurologist Dr. William Langston and his colleagues, along with the Santa Clara County police, traced the mysterious outbreak to a rogue chemist and a bad batch. He’d been trying to synthesize a “synthetic heroin” — not the snow cone flavorings he claimed — however a powder sample from his garage lab contained traces of an impurity called MPTP. MPTP, it turned out, ravages dopaminergic neurons in the nigra and causes what looks like advanced Parkinson’s. All of the newly Parkinsonian patients were heroin users who had injected the tainted product. And MPTP, it also turned out, is awfully similar in structure to the widely used herbicide paraquat, leading some neurologists to turn their attention to farms and fields.

In 2000, a meta-analysis linked confirmed and presumed pesticide exposure with increased risk of Parkinson’s. Subsequent work supported this connection, including a large 2006 study that followed patients for nine years. The patients exposed to pesticides had a 70% higher incidence of Parkinson’s when the study ended; the risk was the same for exposed farmers and exposed non-farmers, hence some other farm-related factor wasn’t to blame. The study didn’t report on specific toxins, but more recent work out of The Parkinson’s Institute in Sunnyvale, CA, founded by Langston after the MPTP discovery, did. The authors took detailed occupational and exposure histories from farmers and their families. Paraquat upped Parkinson’s risk 2.5-fold. Rotenone was also red-flagged.

Pesticides exert their neurotoxicity in a number of ways. Both paraquat and rotenone appear to wither dopaminergic neurons via free radical production. Free radicals are atoms or molecules with an unpaired electron looking for a partner; they do major cellular damage by pilfering electrons from other molecules, impairing their function. Rotenone may also interfere with the normal neuronal clearance of damaged or degraded proteins. Faulty proteins accumulate, derailing various cellular processes.

The new study, from a team at UCLA, proposes yet another mechanism by which some pesticides might contribute to Parkinson’s. It might also provide a major lead in understanding the disease. The team had previously found that the fungicide benomyl was associated with increased Parkinson’s risk and damaged the brain by inhibiting an enzyme called ALDH that normally helps metabolize fats, proteins and toxins like alcohol (certain ALDH mutation carriers have to take it easy at the bar). ALDH also detoxifies the dopamine metabolite DOPAL. When the enzyme isn’t working properly, DOPAL builds up in neurons and may explain the loss of dopaminergic neurons in Parkinson’s. This time around the authors tested 26 pesticides, first for their influence on ALDH activity in rat neurons and next for any epidemiologic association with Parkinson’s. Eleven pesticides inhibited ALDH at the concentration tested, eight of which could be included in the study based on available histories from 360 rural Californian patients. All eight were associated with an increased Parkinson’s risk and genetic variation in the ALDH2 subtype of the enzyme increased the risk further in those exposed. The findings not only point to new culprit compounds, but reflect the growing appreciation of Parkinson’s as a multifactorial disease, in many cases due to the collusion of both genetic and environmental factors.

At least 10% of Parkinson’cases are now thought to be due primarily to specific gene variants, and estimates suggest that genetics may contribute to upwards of 20% to 50%. Patients with a few specific mutations — common in people of Mediterranean descent — carry a nearly 100% chance of developing the disease. Though, as lead author Dr. Jeff M. Brontstein commented to Scientific American, while a minority of cases might be primarily due to a specific genetic or environmental risk factor, ultimately many if not most cases are likely due to gene-environment interactions. This may explain why there isn’t an epidemic of Parkinson’s in rural areas. Despite the large number of people regularly exposed to pesticides, not everyone has a genetic susceptibility.

This gets incredibly complicated when you consider the possibility of multiple genetic and environmental risk factors working together. It's clear that pesticides wreak havoc on the brain through a variety of mechanisms. Hence farmers and others regularly exposed are at risk for a multipronged, possibly cumulative attack. Certain industrial solvents also appear to bump up Parkinson’s vulnerability. Head trauma, in combination with a particular mutation, does too. And diets high in omega-3 fatty acids, found in fish, plant and seed oils, appear to protect against the disease. The laundry list of risk factors and contributors could explain the varied symptoms experienced by Parkinson’s patients. Some present early in life, some late. For many the classic motor symptoms predominate; others present with non-motor findings like sleep disturbances, constipation and depression. No two cases are identical.

The confusion isn’t just clinical. Recent evidence positions Parkinson’s as one of a number of related neurodegenerative disorders marked by the accumulation of abnormal proteins in the brain, including Alzheimer’s disease and ALS. They all appear partially genetic, partially environmental and probably in many cases both. Neuronal protein accumulations called Lewy bodies — a pathologic hallmark of Parkinson’s — are also found in the brains of Alzheimer’s patients; PD-afflicted brains often contain the amyloid protein aggregates common to Alzheimer’s. It’s a Venn diagram of neurodegeneration.

The new findings further confirm that those whose livelihood relies on repelling pests should pay mind to their increased risk for Parkinson’s, particularly if they have other known risk factors, and take precautions. They can limit exposure and avoid the riskier compounds. They can wear masks, clean up spills and wash up vigorously. Moreover, implicating ALDH in Parkinson’s pathology could represent an important step toward determining a final common pathway on which the various risk factors converge, a potential holy grail for drug development, and ultimately for patients. Rarely are neurologic diseases straight forward, and Parkinson’s has proved no different. But a terribly unfortunate outcome for many in search of heartier, healthier crops may have brought medicine one notch closer to deciphering a frustratingly complex disease.

Are you a scientist who specializes in neuroscience, cognitive science, or psychology? And have you read a recent peer-reviewed paper that you would like to write about? Please send suggestions to Mind Matters editor Gareth Cook, a Pulitzer prize-winning journalist and regular contributor to NewYorker.com. Gareth is also the series editor of Best American Infographics, and can be reached at garethideas AT gmail.com or Twitter @garethideas.

ABOUT THE AUTHOR(S)

Bret Stetka is an Editorial Director at Medscape

Fighting Parkinson's with the power of dance

by Kate Haggman

Professors Gene Moyle and Graham Kerr are part of the research team working with Queensland Ballet on the Dance for Parkinson's program.

Brisbane researchers are measuring the power of dance for a special group of Queenslanders.

Dance and health academics from QUT and The University of Queensland are working with Queensland Ballet and Parkinson's Queensland on a pilot program that aims to improve both the health and wellbeing of people affected by the neurological disease.

Queensland Ballet's Dance for Parkinson's pilot program offers free dance workshops in its West End studios for people with Parkinson's disease and their carers, facilitated by Dance for Parkinson's specialist Erica Rose Jeffrey.

But it's much more than just an exercise class.

"Dance for Parkinson's welcomes people affected by Parkinson's into the Queensland Ballet family - they're in the studios interacting with the professional dancers, learning parts of the company's repertoire, watching the professionals' daily ballet classes, seeing the dress rehearsals," said Associate Professor Gene Moyle, head of QUT Creative Industries' dance discipline.

"That strong social interaction with the Queensland Ballet community is a really important factor in promoting long-term happiness and emotional fulfilment in a group of people who are managing the burden of a degenerative condition.

"One of the effects of Parkinson's is a steady reduction in brain function, which can lead to depression, lethargy and apathy.

"The strong bonds Dance for Parkinson's participants forge within this supportive community can make all the difference to their mental health - and learning to express themselves creatively can be a fantastic mood enhancer."

Queensland Ballet CEO Anna Marsden said her Company was passionate about celebrating the health and fitness benefits of ballet with the community and was proud to introduce Dance for Parkinson's to Queensland.

"This innovative program, the first Dance for Parkinson's program offered by a professional dance company in Australia, is a great example of how arts and science can work together to improve the lives of those affected by Parkinson's."

Queensland Ballet's pilot program is based on a similar New York program developed by David Leventhal and the Mark Morris Dance Group.

Prior international research suggests that, as well as positive impacts on quality of life, dance can also improve cognitive performance and reaction times, making it a useful means of alleviating symptoms for a number of conditions, including arthritis, dementia, depression and Parkinson's.

The Queensland researchers will rigorously assess the physical health, social, emotional and psychological benefits of Queensland Ballet's program.

The research is voluntary among participants and care givers, and involves clinical measurements, questionnaires, personal interviews, observational filming and journal reflections.

Neuroscientist with QUT's Institute of Health and Biomedical Innovation Professor Graham Kerr said combining cardio with strategy, coordination and rhythm may be particularly helpful for people with Parkinson's, whose neural pathways have degenerated, making it increasingly difficult for the brain to transmit signals to the body.

"Parkinson's has a profound effect on movement so anything we can do to improve their flexibility, balance and coordination will be beneficial," said Professor Kerr, who is also the Vice President of Parkinson's Queensland.

"People with Parkinson's typically become quite stiff and rigid. The risk of falling over and being severely injured is very high. Fractured skulls and hips are quite common.

"Our study will measure exactly how much the exercise delivered through Dance for Parkinson's improves balance, walking and coordination as well as quality of life and well-being."

The findings of the research are expected to be released later this year.

 Explore further: App takes aim at Parkinson's

Provided by Queensland University of Technology