Summer Reading Suggestion

If I Can Climb Mt. Kilimanjaro, Why Can’t I Brush My Teeth?: Courage, Tenacity and Love Meet Parkinson’s Disease
by Nan Little

“You have Parkinson’s disease” transformed Nan Little from a Person into a Person with Parkinson’s, setting her squarely on a life path leading inexorably to physical and mental deterioration marked by increasing disability and a painful, possibly demented, end. Although never considered an athlete, upon hearing this diagnosis in 2008 at age 62, she became physically and mentally stronger by setting, and meeting, unexpected goals. Mitigating her symptoms through fast cadence cycling, she has climbed mountains and cycled thousands of miles. One doesn’t heal from Parkinson’s; one chooses how to live with it. Unlike most “athlete overcomes adversity” books, IF I CAN CLIMB MOUNT KILIMANJARO, WHY CAN’T I BRUSH MY TEETH? COURAGE, TENACITY AND LOVE MEET PARKINSON’S DISEASE chronicles an older woman’s unorthodox approach to managing PD. She tells stories, encouraging patients to draw from her experiences points that are relevant to their own lives. She doesn’t hide. Hallucinations, constipation, compulsive behaviors, and loss are all part of the picture. So is the emotion of standing on the roof of Africa, dipping her bike wheel in the Mississippi after cycling across Iowa for seven days and paying careful attention as her two year old granddaughter explains how to stop her “dancing hand”. Each story is laced with courage, tenacity and love. “Nan shows how even the most challenging obstacles life puts in front of us can be stepping stones to something greater than we ever dreamed!” Linna Dossett Patient efficacy, having some control over her personal Parkinson’s path, distinguishes this book from other medical memoirs. Nan encourages patients to take action based on scientific research with measurable outcomes. “You have Parkinson’s disease.” Those few words throw a person on an ice sheet with no ice axe to arrest the slide. Nan’s story can be an ice axe. An estimated 1-1.5 million Americans live with Parkinson’s with an additional 50,000-60,000 diagnosed each year, numbers growing as the population ages. Globally, this chronic neurodegenerative disease currently affects about 5 million. Although this book is about her experiences with Parkinson’s, it is appropriate for any person who endures a neurodegenerative disease, and those who work with them or care about them. “Nan gives honest and raw insight into the process one goes through after being diagnosed with a neurodegenerative disease and how our biggest trial can give us our greatest life lessons.” Brandis Gunderson

Summer Reading Suggestion

Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease
by Jon Palfreman
A star science journalist with Parkinson’s reveals the inner workings of this perplexing disease

Seven million people worldwide suffer from Parkinson’s, and doctors, researchers, and patients continue to hunt for a cure. In Brain Storms, the award-winning journalist Jon Palfreman tells their story, a story that became his own when he was diagnosed with the debilitating illness.
Palfreman chronicles how scientists have worked to crack the mystery of what was once called the shaking palsy, from the earliest clinical descriptions of tremors, gait freezing, and micrographia to the cutting edge of neuroscience, and charts the victories and setbacks of a massive international effort to best the disease. He takes us back to the late 1950s and the discovery of L-dopa. He delves into a number of other therapeutic approaches to this perplexing condition, from partial lobotomies and deep brain stimulation to neural grafting. And he shares inspiring stories of brave individuals living with Parkinson’s, from a former professional ballet dancer who tricks her body to move freely again to a patient who cannot walk but astounds doctors when he is able to ride a bicycle with no trouble at all.
With the baby boom generation beginning to retire and the population steadily aging, the race is on to discover a means to stop or reverse neurodegenerative conditions like Parkinson’s and Alzheimer’s. Brain Storms is the long-overdue, riveting, and deeply personal story of that race, and a passionate, insightful, and urgent look into the lives of those affected.

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
1-800-708-7644

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.

https://www.washingtonpost.com/news/innovations/wp/2016/02/18/this-glove-could-make-eating-easier-for-those-with-parkinsons-disease/

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/ .