April is Parkinson’s Awareness Month

Every year about 60,000 new cases of Parkinson’s disease (PD) are diagnosed in the United States. While tremors are the most notorious and visible warning sign, there are many others. The National Parkinson Foundation (NPF) believes that with early detection, treatment and expert care, many people live longer, productive lives with PD. As part of Parkinson’s Awareness Month we want you to know these 10 early warning signs. They can help you or a loved one with early detection.


Can Medical Marijuana Treat Parkinson’s ?

New York’s first medical marijuana dispensary opened in January, over a year after the state became the 23rd to legalize the drug for medical use and the fifth to approve Parkinson’s disease (PD) as a condition for its use. This news understandably led the patient and physician communities to ask a number of research and clinical questions about marijuana and Parkinson’s.
Marijuana is derived from the plant Cannabis sativa, which contains more than 60 different compounds referred to as cannabinoids. One of these is the major “psychoactive” component — Delta-9-tetrahydrocannabinol (THC) — which causes alterations in perception, mood and behavior. The ratio of THC to the other cannabinoid compounds, which do not have these psychoactive effects, varies from plant to plant and among the various formulations of medical marijuana.
We naturally make our own cannabinoids that bind to receptors found throughout the body and brain — this is called the “endocannabinoid system.” When these cannabinoids bind to receptors, they can impact brain chemicals, including dopamine, which decreases in Parkinson’s. One area of the brain that contains a high number of these receptors is the basal ganglia — the complex of cells that controls movement and is affected in PD. Because the cannabinoids in marijuana work in some of the same sites and ways as those made by the body, researchers have looked into what role they could play in modifying PD and in treating motor and non-motor symptoms.
Research on Cannabinoids and Parkinson’s to Date Is Inconclusive
Pre-clinical research (including work supported by MJFF in 2007 and 2012) has concentrated on learning about the structure and function of the endocannabinoid system, while determining if cannabinoids could help in Parkinson’s. Early data suggests that cannabinoids have antioxidant, anti-inflammatory and other properties that could be neuroprotective. Pre-clinical studies evaluating symptomatic effects, though — improvement in motor symptoms and levodopa-induced dyskinesia — have produced varied results.
Clinical studies have demonstrated similarly inconsistent outcomes. Several cannabinoid trials have reported benefit on Parkinson’s motor and non-motor symptoms including pain, sleep dysfunction, rapid eye movement sleep behavior disorder and psychosis. (Of course, numerous anecdotal accounts exist of marijuana aiding with these and a variety of other symptoms as well.) Complicating matters, four controlled clinical trials concluded that cannabinoids did not lessen motor symptoms but had mixed results regarding levodopa-induced dyskinesia.
The positive results should be read cautiously for several reasons:
small numbers of patients were enrolled,
many of the studies were observational (patients self-reported results through questionnaires) or uncontrolled and open-label (all participants took the study drug and were aware of this), and
different formulations (smoked cannabis, oral cannabinoids, etc.) and doses of marijuana and its derivatives were utilized.
The trials with negative results should also be interpreted carefully since they too included small numbers of volunteers and used varied doses and formulations of cannabinoids. However, they were placebo-controlled and therefore provide stronger evidence in support of the current prevailing clinical viewpoint, which is that cannabinoids are probably ineffective for Parkinson’s motor symptoms and levodopa-induced dyskinesia.
Medical Marijuana Is Approved for Parkinson’s in a Few States
The District of Columbia and 23 states have passed legislation allowing the use of marijuana-based products for medical purposes. The approved medical conditions, cannabinoid formulations (Minnesota and New York do not permit smoked cannabis, for example), and patient and physician requirements are different for each state. Typically patients must register in order to possess and use cannabinoids, and physician documentation of an approved condition is required for patient registration. Under federal law, doctors cannot prescribe cannabinoids, but state guidelines authorize qualified doctors to issue “certifications” that allow patients to obtain medical marijuana.
In five states (Connecticut, Illinois, Massachusetts, New Mexico and New York), Parkinson’s disease is an approved condition for use of medical marijuana. In some states, however, this diagnosis alone does not make a person eligible for the drug. In New York, for instance, one must have PD plus at least one approved associated condition — extreme malnutrition, severe or chronic pain, severe nausea, seizures, or severe or persistent muscle spasms. With regard to the latter, it’s worth pointing out that if people with Parkinson’s experience muscle problems they are more often cramps rather than spasms.
Medical Marijuana Has Potential Risks
In considering whether cannabinoids are a suitable therapy for Parkinson’s symptoms, the potential benefits must be weighed against the possible side effects. Used in moderation, cannabinoids appear to be relatively well tolerated. Even so, a review of clinical trials involving cannabinoids showed that nearly seven percent of participants discontinued them due to issues such as nausea, dizziness, weakness, mood and behavioral changes, hallucinations and impairment of cognitive (memory/thinking) abilities. Of particular concern are potential influences on cognition, motivation and balance — Parkinson’s impacts these areas in many people and it’s unclear to what degree marijuana could exacerbate this. Furthermore, the risk of prescription drug interactions with medical marijuana is not known. No definite interactions have been found, but people with Parkinson’s can be on complex medication regimens and caution always should be exercised when adding to them.
Potential harm of long-term use has not yet been established. Outside of clinical trials, though, chronic use of marijuana has been correlated with an increased risk of mood disorders and lung cancer.
Concerns about addiction and abuse are frequently raised, but these are controversial and focus mostly on marijuana acting as a “gateway” drug.
Further Research on Cannabinoids and Parkinson’s Is Necessary
Review of the research to date on cannabinoids and PD stresses the need for additional work at both the pre-clinical and clinical levels. The goals include gaining a better understanding of the endocannabinoid system, clarifying conflicting data (specifically the mixed results regarding motor symptoms and levodopa-induced dyskinesia), and determining the tolerability, safety and efficacy of cannabinoids on individual motor and non-motor symptoms in Parkinson’s. The only route to solid clinical data is through well-designed trials that include larger numbers of people with Parkinson’s, make use of formal objective outcomes measures (i.e., tools other than patient surveys where able) and employ standardized cannabinoid formulations to allow better comparison of results across trials.

The Michael J. Fox Foundation
Grand Central Station, P.O. Box 4777
New York, NY 10163-4777

Parkinson Glove by GyroGear

This glove could make eating easier for those with Parkinson’s disease. Eating can be difficult and embarrassing for those with tremors, but GyroGear thinks it has a solution for patients suffering from Parkinson’s disease or essential tremor. The start-up has created a glove that steadies a person’s hand, making it easier to complete everyday tasks such as eating. The glove’s power lies in a bronze disc on the back of the hand, which weighs about as much as a roll of nickels. It spins at up to 20,000 rotations per minute, providing a steadying force. The force of the battery-powered disc is akin to putting one’s hand in molasses. While moving is not as easy, the benefit is that much of the shaking is naturally filtered out.

GyroGear is aiming to reduce tremors by 70 percent. In one lab test, the London-based researchers say, it reduced a tremor by 90 percent.GyroGear founder Faii Ong was inspired by a 103-year-old hospital patient who couldn’t eat without spilling food. While cleaning her up, the medical student at Imperial College started to brainstorm solutions. Ong cautions that there’s still work to be done. The glove hasn’t been tested by outside parties, but they plan to publish their findings in a peer-reviewed journal by the end of the year. They also hope to begin selling the product by year’s end and are raising funds from investors. “The idea of simple, wearable devices to treat tremor and to avoid the side effects from medications or alternatively the dangers of surgery is very appealing to patients and health care providers,” said Michael S. Okun, medical director of the National Parkinson Foundation. “The GyroGlove is an interesting idea, however many of these types of devices fall short of the expectations — especially when faced with very severe and disabling tremor.”

There are other efforts to use mechanical solutions to aid those with Parkinson’s disease. Lift Labs, a start-up that Google acquired in 2014, has devised a vibrating spoon and fork to counteract tremors and make eating easier. While having shown promise for mild tremors, Okun said it hasn’t proven the most effective solution for more severe cases. In the long term GyroGear is interested in adapting its glove to other uses, such as for surgeons, physical therapists, photographers or anyone seeking to keep a steady hand.


National Parkinson Foundation Research

NPF-funded research is — at last — giving scientists a handle on the basic biology of Parkinson’s. Goal: A drug that STOPS the disease.

NPF-funded research is identifying specific exercise that could slow down — even reverse — devastating thinking and memory losses. Goal: Parkinson’s-specific exercise that maintains cognitive abilities.

NPF’s use of activity monitors yields rich data on a person’s movements. Goal: Use this data to personalize medication so it is more effective than ever before.

NPF researchers are studying people living exceptionally well with Parkinson’s for 20-plus years. Goal: Discover why their symptoms are progressing so slowly, and deliver this benefit to everyone with Parkinson’s.

Cannabis (Medical Marijuana) Treatment for Motor and Non–Motor Symptoms of Parkinson Disease: An Open-Label Observational Study

Objective: The use of cannabis as a therapeutic agent for various medical
conditions has been well documented. However, clinical trials in
patients with Parkinson disease (PD) have yielded conflicting results.
The aim of the present open-label observational study was to assess the
clinical effect of cannabis on motor and non–motor symptoms of PD.
Methods: Twenty-two patients with PD attending the motor disorder
clinic of a tertiary medical center in 2011 to 2012 were evaluated at
baseline and 30 minutes after smoking cannabis using the following
battery: Unified Parkinson Disease Rating Scale, visual analog scale,
present pain intensity scale, Short-Form McGill Pain Questionnaire, as
well as Medical Cannabis Survey National Drug and Alcohol Research
Center Questionnaire.
Results: Mean (SD) total score on the motor Unified Parkinson Disease
Rating Scale score improved significantly from 33.1 (13.8) at baseline
to 23.2 (10.5) after cannabis consumption (t = 5.9; P < 0.001). Analysis of specific motor symptoms revealed significant improvement after treatment in tremor (P < 0.001), rigidity (P = 0.004), and bradykinesia (P < 0.001). Conclusions: There was also significant improvement of sleep and
pain scores. No significant adverse effects of the drug were observed.
The study suggests that cannabis might have a place in the therapeutic
armamentarium of PD. Larger, controlled studies are needed to verify
the results.
Key Words: cannabis, ?9-THC, Parkinson disease, pain, Cannabis
(Clin Neuropharm 2014;37: 41–44)

Itay Lotan, MD, Therese A. Treves, MD, Yaniv Roditi, MD, and Ruth Djaldetti, MD
Department of Neurology, Rabin Medical Center, Beilinson Hospital, Petach
Tikva; and Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel.
Conflicts of Interest and Source of Funding: The authors have no conflicts of
interest to declare.
Address correspondence and reprint requests to Itay Lotan, MD, Department
of Neurology, Rabin Medical Center, Beilinson Campus, Petach Tikva
49100, Israel; E-mail: itayl@clalit.org.il

World Parkinson Conference

The 4th World Parkinson Conference will be held in Portland, Oregon, Sept 20-23, 2016.

Everyone in the community who is touched by Parkinson’s, whether a patient, researcher, family member, clinician, nurse, rehab specialist, or just interested person, is welcome to attend the WPC. It’s a 100% inclusive Congress.

Mission of World Parkinson Congress
To provide an international forum to learn about the latest scientific discoveries, medical practices, caregiver initiatives and advocacy work related to Parkinson’s disease. By bringing physicians, scientists, nurses, rehabilitation specialists, caregivers and people with Parkinson’s disease together, each Congress allows for a worldwide dialogue to help expedite the discovery of a cure and best treatment practices for this devastating disease.

For more information go to www.wpc2016.org

Movin’ & Shakin’ 5K

Be a part of the movement.

When: 9 a.m. Saturday, April 30
Where: Snag-A-Job Pavilion, 4600 Cox Road, Glen Allen, VA
RSVP: Online by Thursday, April 27

All proceeds from the 3rd Annual Movin & Shakin’ 5K benefits the VCU Parkinson’s and Movement Disorders Center. All race participants will receive a commemorative race T-shirt, a great experience and priceless memories.

A chipped timing system will be used to provide accurate timing of all participants completing the 5K course. Be sure to enter your age and gender on the registration form because awards will be given for age groups!

Click here for more information and to register click http://support-events.vcu.edu/site/TR/Events/MovinampShakin5K?pg=informational&fr_id=1290&type=fr_informational&sid=1120

Rock Steady Boxing

Rock Steady Boxing improves the quality of life for people battling Parkinson’s disease through non-contact, boxing inspired fitness training.

We are learning everyday that there are ways in which people with Parkinson’s disease can enhance their daily quality of life and even build impressive power,
strength, flexibility and speed! By exercising with Coaches who know the ropes, you can fight your way out of the corner and start to feel and function better.

Boxing works by moving your body in all planes of motion while continuously changing the routine as you progress through the workout. These classes have proven that anyone, at any level of Parkinson’s, can actually lessen their symptoms and lead a healthier/happier life.

To see individuals in the ring click here http://www.cbsnews.com/news/fighting-back-against-parkinsons-in-the-ring/ .

The Bright Side of Parkinson’s

The New York Times Feb.21,2015

EUGENE, Ore. — FOUR years ago, I was told I had Parkinson’s disease, a condition that affects about one million Americans. The disease is relentlessly progressive; often starting with a tremor in one limb on one side of the body, it spreads. The patient’s muscles become more rigid, frequently leading to a stooped posture, and movements slow down and get smaller and less fluid. As the disease advances — usually over a number of years — the patient becomes more and more disabled, experiencing symptoms from constipation to sleep disorders to cognitive impairment.
Can Parkinson’s be slowed, stopped or even reversed? Can the disease be prevented before it starts, like polio and smallpox? More than at any time in history, success seems possible.

Having sequenced the human genome, biomedical researchers have now set their sights on the ultimate frontier — the human brain. The formidable puzzle is to figure out how a three-pound lump of mostly fatty matter enables us to perform a seemingly endless number of tasks, like walking, seeing, hearing, smelling, tasting, touching, thinking, loving, hating, speaking and writing … and why those awesome abilities break down with neurological disease. Many scientists view Parkinson’s as a so-called pathfinder. If they can figure out what causes Parkinson’s, it may open the door to understanding a host of other neurodegenerative diseases — and to making sense of an organ of incredible complexity.

In Parkinson’s, the circuitry in a tiny region of the brain called the basal ganglia becomes dysfunctional. Along with the cerebellum, the basal ganglia normally acts as a kind of adviser that helps people learn adaptive skills by classic conditioning — rewarding good results with dopamine bursts and punishing errors by withholding the chemical. Babies rely on the basal ganglia to learn how to deploy their muscles to reach, grab, babble and crawl, and later to accomplish many complex tasks without thinking. For example, when a tennis player practices a stroke over and over again, the basal ganglia circuitry both rewards and “learns” the correct sequence of activities to produce, say, a good backhand drive automatically.

But this brain circuit has a vulnerability: It depends on dopamine. When the production of dopamine is interrupted, as it is with Parkinson’s, the signals passing through the basal ganglia are garbled, and it ends up giving poor advice. Corrupted signals pass to other brain regions such as the thalamus (which relays sensory and motor data) and the cortex (which is responsible for many higher functions such as language and consciousness). These bad signals disrupt communication between the brain and the muscles. This is one reason people with Parkinson’s have trouble picking up small objects and moving around fluently: Their motions are too hesitant, too small, too slow, too rigid, too shaky, too feeble and badly timed. These are symptoms of a brain in conflict with itself.

Having Parkinson’s feels a bit like going on vacation in another country and having to drive on the “wrong” side of the road. Driving is one of those activities that we outsource, in large part, to the basal ganglia. When an American, who has spent thousands of hours driving on the right side of the street, tries to drive in England, his learned habits are a liability. To compensate, he must invoke the deliberate and goal-directed part of his brain — the cortex — to override the basal ganglia. The driving will be difficult, partly because the conscious brain is now doing all the work, but mainly because it’s having to compensate for signals from the basal ganglia that are inappropriate for the situation at hand.

But why is the production of dopamine interrupted in the first place?

That may come down to the behavior of a common protein called alpha-synuclein. This molecule’s importance for Parkinson’s was discovered over 20 years ago, when the New Jersey neuroscientist Lawrence Golbe stumbled across two patients who were descendants of an extended family originally from the Italian village of Contursi. This family was cursed with a very rare genetic form of Parkinson’s; family members had a 50 percent chance of inheriting the disease. Subsequent research found that those affected carried a mutated gene on Chromosome 4 that coded for alpha-synuclein.

While Parkinson’s disease is not usually inherited like this, the discovery provided a vital clue about the way Parkinson’s typically worked. Most patients do not have this mutation, but they do, it turned out, have sticky deposits of alpha-synuclein inside their brains, found when they were examined post-mortem. This protein seems to be an integral part of the disease that affects all Parkinson’s patients.

Here’s the theory scientists have come up with: Sometimes good proteins go bad. For multiple reasons (like genes, environment and age) proteins can “misfold” and stick to other proteins. When proteins do this, they can become toxic, capable of jumping from cell to cell, causing other alpha-synuclein proteins to do the same and potentially killing neurons (especially dopamine-producing ones) in their wake. This process is not confined to Parkinson’s disease. Misfolded proteins appear to be implicated in other devastating neurological disorders such as Alzheimer’s disease, Huntington’s disease, Lou Gehrig’s disease and Creutzfeldt-Jakob disease — a human variant of mad cow.

What can be done about such badly behaving proteins? Cells possess an elaborate series of control mechanisms to help proteins behave correctly and to destroy and recycle them if they don’t. But these controls are not perfect. As human life spans increase so, too, does the likelihood of protein malfunctioning that could lead to neurological disease.

SO patients like me are looking to neuroscience research to lend nature a helping hand. And remarkably, some researchers foresee the possibility that one day in the not too distant future they may be able to develop drugs to target these rogue proteins, potentially combating several neurological diseases in one go.

An American biotech company, NeuroPhage, for example, plans to enroll Alzheimer’s and Parkinson’s patients in 2016 and 2017 in Phase 1 trials of its new product, a genetically engineered compound derived from a naturally occurring virus called M13. Researchers have demonstrated that this compound can enter rodents’ brains and neutralize toxic clumps of alpha-synuclein and the corresponding targets for Alzheimer’s (the proteins amyloid beta and tau). The question is, will it work as well in people’s brains? And will it arrest or reverse patients’ symptoms?

People with Parkinson’s progressively lose core pieces of themselves. We forget how to walk. Our arm muscles get weaker. Our movements slow down. Our hands fumble simple tasks like buttoning a shirt or balancing spaghetti on a fork. Our faces no longer express emotions. Our voices lose volume and clarity. Our minds, in time, may lose their sharpness and more. But unlike many cancer victims, people with Parkinson’s tend to survive for a long time. And unlike Alzheimer’s or Huntington’s patients, many of us can report lucidly on our condition until the end. Parkinson’s patients like me take comfort from the idea that our insights can help unpack these diseases and assist in the scientific pursuit of better therapies and ultimate cures.

Jon Palfreman is a professor of broadcast journalism at the University of Oregon and the author of the forthcoming book “Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease.”