Larry doesn’t just live with Parkinson’s. He rises above it. After a 20-year battle with Parkinson’s, Larry has exhausted every conventional method of treatment, every drug, and even brain surgery. Refusing to give up, he seeks alternatives, discovering the untapped benefits of exercise and medical marijuana. Now Larry will attempt the unthinkable, a 300-mile bike ride across South Dakota, a journey of hope for anyone facing a life altering illness. In this intimate portrait of courage, love, and community, Larry Smith refuses to give up, proving that if you love life, you’ll fight for it.
Read more here
YOUNG ONSET PARKINSON’S DISEASE (YOPD) SUPPORT GROUP
DATE: MONDAY, JULY 24, 2017
TIME: 7:00 PM
LOCATION: ROUTE SEVEN DINER, 1090 TROY SCHENECTADY ROAD
LATHAM, NEW YORK (Handicapped Accessible; Ample Parking)
Join the YOPD Support Group July 24, 2017 for the monthly meeting.
Dinner is ordered off the menu (individual bills). Reservations are not required. Patients (any age) and caregivers are welcome to attend to learn more about Parkinson’s disease in an informal setting.
For further information regarding the YOPD, contact:
518-783-3492 OR 518-371-0448, after 3:00 p.m.
Next Meeting: Saturday, August 19, 2017 (Annual Picnic)
Good Shepherd Lutheran Church, 510 Albany Shaker Road, Loudonville
Mission: The YOPD support group shall welcome everyone with Parkinson’s disease including their care network. YOPD will support, share, and encourage PD persons to enjoy quality of life and ensure they are not alone in their journey. Information/issues obtained by YOPD from attendees will be treated confidentially and privacy respected.
A new study finds that, overall, lifespan for those living with Parkinson’s disease (PD) is nearly identical to those in the general population. The study looked at a group of diseases called synucleinopathies, including Parkinson’s. The results appear in the May 15 online edition of JAMA Neurology.
Overall, the study reminds us that people with Parkinson’s can live many years with the disease. With that in mind, people living with these diseases, their care partners and their families can take steps to plan for their health care and make important financial decisions.
Read more here
Fri, August 4, 12pm – 6pm
Saratoga Race Course, 267 Union Ave, Saratoga Springs, NY 12866
267 Union Ave, Saratoga Springs, NY 12866
We will have a community event booth near the picnic area to raise awareness for Parkinson’s research and local Parkinson’s programs.
Microsoft showcased a prototype
watch that temporarily eliminated the
arm shaking that often plagues
those suffering from the neurological
Starting in May and every other month meetings will be the fourth Monday.
Time: 7:00 PM
Location: Route 7 Diner, 1090 Troy Schenectady Road (across from Keeler Motors), Latham
Diner dates are:
• Monday, May 22
• Monday, July 24
• Monday, September 25
• Monday, November 27
➢ Meetings for June, August, October, and December will be the third Saturday of the month.
Time: 2:00 PM
Location: Good Shepherd Lutheran Church
• Saturday, June 17
• Saturday, August 19
• Saturday, October 21
• Saturday, December 16
If you have Parkinson’s disease, there are a lot of health benefits that come along with exercise. Staying active can help you sleep, strengthen your muscles and joints, reduce stress and depression, and improve posture, balance, and gait.
But what sort of exercise should you do? The types of exercise you choose will depend, to some degree, on the severity of your Parkinson’s disease and your overall health. According to the Parkinson’s Disease Clinic and Research Center at the University of California, the exercises should be varied and incorporate changing directions through unplanned movement, cardiovascular exercise, balance, strength training and rhythmical exercises.
Unplanned and Random Movement
The exercises listed require the person to change tempo and direction regularly. These will challenge a person mentally as well as physically as they require concentration to perform.
Planned and Repeated Movement
These exercises are generally repeated movements that require balance. They can be performed while doing something that challenges a person mentally, such as watching a quiz show or the news, throwing and catching balls, singing, or problem-solving.
She couldn’t believe her eyes.
There, on the paper before her, she had written Pope John Paul II’s name in handwriting clear enough to read.
“The pen skipped across the page,” Sister Marie Simon-Pierre would tell Vatican investigators later.
Until that moment, the French nun, then 43, had been so racked by Parkinson’s she could barely hold a pen, let alone write.
Unable to process what appeared to be happening, the nun retired to her bed and woke up at 4:30 a.m. to another revelation — she had slept through the night for the first time in months.
“I got up fully alive,” she said.
The Vatican this week marks the fifth anniversary of Pope John Paul II’s death amid some doubts that the miracle needed for his saint-making cause will stand up to scrutiny and questions about his record combating pedophile priests.
VATICAN CITY, March 5 (UPI) — A French nun’s return to illness could delay the canonization of Pope John Paul II.
Pope Benedict XVI put his predecessor on the fast track for sainthood almost immediately, and there had been speculation John Paul would be beatified on Oct. 16, the anniversary of his election to the papacy, the Guardian reports. The Vatican has now scheduled the canonization of six saints on Oct. 17, which would bar a beatification the day before.
To become a saint requires evidence of posthumous miracles. Sister Marie Simon-Pierre said three years ago she had been relieved of the symptoms of Parkinson’s disease after praying to John Paul, who also suffered from Parkinson’s.
Now, a Polish newspaper, Rzeczpospolita, reports Simon-Pierre’s symptoms have returned. The newspaper also said her doctor, on his Web site, suggested she did not suffer from Parkinson’s but from a disease with the same symptoms that is known to go into remission.
Internationally renowned as both a neurologist and a leading researcher, Dr. Okun has been referred to as, “the voice of the Parkinson’s disease patient.” He has an international following on the National Parkinson Foundation’s Ask the Doctor web-forum. His many books and internet blog posts are brimming with up-to date and extremely practical information. He has a talent for infusing his readers with positivity and optimism. In his current book, he unmasks the important secrets applicable to every Parkinson’s disease patient. For some sufferers the secrets have translated into walking again, for others they have restored voices, and for many they have resulted in the lifting of a d
New evidence suggests being hungry isn’t a bad thing, at least for your brain.
When the “hunger hormone” ghrelin was first discovered in 1996, scientists were excited about its future application the treatment of eating disorders. Years of research revealed that the hormone, which is produced in an empty stomach, stimulates appetite and regulates the distribution and rate of use of energy.
But now, at Swansea University in the United Kingdom, Jeffery Davis and his team added ghrelin to lab-grown mouse brain cells and found that it activated neurogenesis—the process by which neurons divide and multiply. This work could revolutionize how we treat neurodegenerative conditions like Parkinson’s disease.
Scientists have discovered that ghrelin, known as the “hunger hormone,” activates the process by which cells divide and multiply—offering a possible treatment for Parkinson’s disease.
Parkinson’s disease is a long-term disorder of the central nervous system that primarily affects the motor system. Scientists don’t know the cause of the disease, but it’s believed to be a result of a loss of type of brain cell. But some research, even some conducted by Davis, suggests ghrelin could play a part in treating it. Here’s Clare Wilson, writing for New Scientist:
In further experiments, Davies’s team found that ghrelin protects brain cells in a dish from dying when they are encouraged to mimic Parkinson’s disease. And Davies’s colleague Amanda Hornsby found that, in a study of 28 volunteers, people with Parkinson’s dementia—cognitive impairment caused by Parkinson’s disease—have lower levels of ghrelin in their blood than people who don’t have the condition.
This indicates that in the future, ghrelin could be used to treat Parkinson’s dementia. From an evolutionary perspective, the link between ghrelin and mental ability makes sense. If an animal is hungry, it needs extra brainpower to find that vital next meal. Previous studies on mice showed that a reduced-calorie diet helped boost the number of neural connections in their brain and they performed better on learning and memory tests.
An essential addition to your wellness toolkit. Dealing and Healing offers a fresh and exciting new tool for any individual or group seeking an holistic approach to their own wellbeing. Angela and Karl Robb, the team that developed the Parkinson’s Disease best selling book, A Soft Voice in a Noisy World, have created an easy to use workbook to enhance personal wellness. Dealing and Healing is a new workbook that explores living well with a health condition from a body, mind, and spirit level. Filled with exercises designed to expand self-awareness, refresh the body, calm the mind, and bring peace to the spirit. Now, having lived with Parkinson’s for at least thirty-three years,
Being diagnosed with Parkinson’s disease can be distressing, and adjusting to the effects of the disease can be difficult. The second edition of Parkinson’s Disease: 300 Tips for Making Life Easier will help readers lead a remarkably unlimited life. Filled with tips, techniques, and shortcuts readers will learn basic lessons for conserving time and energy, enabling them to do more of the things they want to do. Throughout the book, specially marked tips are provided for those who provide care and support for people with this disease. By adapting their routine,
The American Medical Association stated in a 2007 online report, “Medical Marijuana (A-01)”:
Only limited data exist on the effects of marijuana in patients with Tourette’s syndrome who respond inadequately to standard treatment, consisting of 4 case histories that report beneficial effects of smoked marijuana and 1 who reported substantial benefit from oral 9-THC.
The Institute of Medicine published in its March 1999 report titled, “Marijuana and Medicine: Assessing the Science Base”:
It is important to note that stress and anxiety tend to worsen the symptoms of movement disorders. Thus, marijuana’s calming effect could be a primary reason why some patients claim that it brings them relief.
Movement Disorders stated in a Sep. 2004 article titled, “Survey on Cannabis Use in Parkinson’s Disease” by researchers from the Movement Disorders Centre at the Department of Neurology at Charles University, Prague, Czech Republic:
An anonymous questionnaire sent to all patients attending the Prague Movement Disorder Centre revealed that 25% of 339 respondents had taken cannabis and 45.9% of these described some form of benefit. …The late onset of cannabis action is noteworthy. Because most patients reported that improvement occurred approximately two months after the first use of cannabis, it is very unlikely that it could be attributed to a placebo reaction.
Patients suffering from movement disorders should consider the indica cannabis strains with high CBD low THC that provide following palliative effects:
Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment or discontinuing an existing treatment with medicinal cannabis. Talk with your healthcare provider about any
Only physicians, nurse practitioners and physician’s assistants are allowed to recommend medical marijuana.
Recommending physicians must:
should not be used as a substitute for the care and knowledge that your physician can provide.
The basic principal for dosing medical marijuana is to start with a low dose and to go slow in taking more until the effect of the first dose is fully realized, because the effects of cannabis are not always immediately felt. Starting low and going slow allows patients to accommodate for the different experiences they may have.
Cannabis has a wide margin of safety and there is limited risk of overdose. However, caution is warranted until a patient fully understands the effect that the cannabis may have. Dosage varies greatly among patients, even when treating the same condition.
All allowable forms of medical marijuana, including methods of consumption and strain, variety, and strength, are determined by the Commissioner and must be approved by the Commissioner before they can be sold. Smoking as a method of consumption of the only form not left to the Commissioner and specifically excluded from ‘certified medical use’ in the statute.
Patients should be aware that cannabis use causes short-term impairments in the following brain functions:
Cannabis users may “pull themselves together” to concentrate on simple tasks for brief periods of time. That said, performance impairments may be observed for at least one to two hours following cannabis use, and residual effects have been reported up to 24 hours depending on potency of the cannabis, the method of administration, and the tolerance of the user.
Consult the advice of your physician if you are a long-term user of medical cannabis and intend to stop using it, or if you are concerned about dependence on or addiction to cannabis. Your physician can help you manage any withdrawal effects that you may experience. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment or discontinuing an existing treatment with medical cannabis.
Talk with your healthcare provider about any questions you may have regarding your cannabis use. The information and materials provided to you by PharmaCannis should not be used as a substitute for the care and knowledge that your physician can provide to you.
Each registered organization may initially produce up to five brands of medical marijuana product, with prior approval of the Department, which must include at least one brand that has a low tetrahydrocannabinol (THC) content and high cannabidiol (CBD) content, and at least one brand with approximately equal amounts of THC and CBD. Each brand in its final form must have a consistent cannabinoid profile. Independent laboratory testing of the final medical marijuana product is required to test for contaminants and ensure product consistency.
Until independent laboratories receive certification from the New York State Environmental Laboratory Approval Program (ELAP), the Department’s Wadworth Center Laboratory will perform the testing and analysis of final medical marijuana products. Each registered organization may have up to four dispensing facilities, owned and operated by the registered organization, where approved medical marijuana products will be dispensesd to certified patients or their designated caregivers, who have registered with the Department. Dispensing facilities must report dispensing data to the New York State Prescription Monitoring Program Registry and consult the registry prior to dispensing approved medical marijuana products to certified patients or their designated caregivers.
You can find a list of commonly asked questions for the New York Medical Marijuana Program here.
When facing a diagnosis of Parkinson’s disease, it is understandable to feel anxious or depressed. But mood disorders such as anxiety and depression are real clinical symptoms of Parkinson’s, just as rigidity and tremor. In fact, at least half of all Parkinson’s patients may suffer from clinical depression at some point during the course of their disease, according to some estimates.
The good news: Over the past decade, researchers have placed increasing focus on investigating these aspects of the disease, and today we have a better understanding of how to treat mood disorders in Parkinson’s and increase quality of life.
Feeling worried is an understandable reaction to a Parkinson’s diagnosis. But when feelings of constant worry or nervousness go beyond what is understandable, a person may be experiencing anxiety, which is more serious.
Anxiety is a common nonmotor symptom of PD. It is important to note that anxiety is not simply a reaction to the diagnosis of Parkinson’s, but is instead a part of the disease itself, caused by changes in the chemistry of the brain. Estimates show that between 25 and 45 percent of people with PD experience an anxiety disorder at some point.
Read more at http://www.pdf.org/anxiety
There are two main types of treatment options for anxiety: medications and psychological counseling (psychotherapy). Depending on the severity of symptoms, psychotherapy can be used alone or combination with medication. NPF recommends a personalized, holistic and comprehensive strategy for the treatment of mental health problems, meaning that care should be tailored to each person’s individual health needs and preferences.
There are many different ways in which a person with Parkinson’s can experience anxiety. The following is a list of common anxiety disorders and a description of symptoms associated with each form. As many as two out of five people with Parkinson’s will experience one of these forms during the course of their illness.
Some people with Parkinson’s may experience anxiety including feelings of unease, worry and fear.
It is often a natural reaction to situations we find threatening or difficult. There are a number of ways of managing anxiety.
Many people with Parkinson’s disease (PD) have trouble sleeping through the night.
In some cases, PD symptoms like rigidity or tremor keep people awake. The brain changes that are part of PD also can cause sleep difficulties, and some people have problems sleeping even before movement symptoms develop and PD is diagnosed. In addition, some PD medications can disrupt sleep at night, and others make people sleepy during the day.
A good night’s rest is essential to feeling well. Disrupted sleep can affect your health, mood and overall quality of life. Furthermore, when people with PD don’t sleep well, the sleep of their care partners is disrupted too. Care partners also need restful sleep to stay healthy.
Nighttime Sleep Difficulties
Troublesome Daytime Sleepiness
Good sleep is a foundation for good health. Not only does it contribute to tiredness and fatigue, it can also worsen any cognitive issues you are experiencing. If you have trouble sleeping, remember that you don’t have to “just live with it.” Medical therapies can help some sleep difficulties:
People with PD — and their care partners too — can take these steps to get to sleep faster and stay asleep:
In addition, people with PD can:
Difficulties with sleep can be caused by a number of factors. Some are directly related to Parkinson’s and its treatments, while others are completely unrelated. While many common issues can be improved with minor medication changes or other tweaks, it is important to understand the causes of common sleep issues associated with Parkinson’s and to discuss with your neurologist and other members of your care team to get the best sleep you possibly can.
pain not connected to Parkinson’s or sleep apnea.
If you have Parkinson’s disease, you are likely to feel stress related to your tremors. Sometimes, you may feel self-conscious. That alone is stressful. These simple relaxation solutions open up natural relaxation responses which can help improve your mood and ease your mind.
The National Institutes of Health (NIH) considers relaxation exercises to be safe for most people. However, just like with exercise routines, people with serious physical health problems such as Parkinson’s should discuss the techniques with their healthcare provider before starting a relaxation routine.
There are many viable techniques for relaxing. These include deep breathing exercises, self-hypnosis, and guided imagery. Each relaxation technique goal is to produce a natural reaction from the body. This should include: lower blood pressure, slower breathing, and a sense of well-being.
We found five easy relaxation exercises that are simple enough for most people to do1 in a chair or while lying in bed.
Place your hand just beneath your navel so you can feel the gentle rise and fall of your belly as you breathe. Breathe in. Pause for a count of three. Breathe out. Pause for a count of three. Continue to breathe deeply for one minute, pausing for a count of three after each inhalation and exhalation.
While sitting comfortably, take a few slow deep breaths and quietly repeat to yourself, “I am” as you breathe in and, “at peace” as you breathe out. Repeat slowly two or three times. Then, feel your entire body relax into the support of your chair.
Raise eyebrows up and tense the muscles across the forehead and scalp. Feel the tension build and hold. Take a deep breath. As you exhale say “relax” while letting the tension leave your body.
Relax your facial muscles and allow your jaw to open slightly. Let your shoulders drop. Let your arms fall to your sides. Allow your hands to loosen so there are spaces between your fingers. Uncross your legs or ankles. Feel your thighs sink into your chair, letting your legs fall comfortably apart. Feel your shins and calves become heavier and your feet grow roots into the floor. Now, breathe in slowly and breathe out slowly.
Observe your abdomen rising and falling with each breath. Inhale and press your navel toward the spine then tense your abdomen. Feel the tension build and hold it. Take in a deep breath. As you exhale say “relax,” and let the tension leave you.
Here’s a PDF with more relaxation techniques from the University of Michigan.
The NIH recognizes the relaxation response as having broad health benefits including the reduction of pain and restoration of sleep. In addition, research on the relaxation response has shown that this simple technique can increase energy and decrease fatigue. It can increase motivation, productivity, and improve decision-making ability, too. The relaxation response lowers stress hormone levels and lowers blood pressure.
The relaxation response is your personal ability to make your body release chemicals and brain signals that make your muscles and organs slow down and increase blood flow to the brain. We hope these stress relieving solutions help you find a relaxation routine that suits you so that you will continue to practice it each day.
The fourth and last patient of the first group in a clinical trial of stem cell transplants in Parkinson’s disease has successfully received the transplant, the International Stem Cell Corporation (ISCO) reported. Researchers are now preparing for the next stage, in which patients will receive a higher number of cells.
So far, researchers have not recorded any adverse events among the four patients who had neural stem cells, called ISC-hpNSC, inserted into their brains.
If successful, the stem cell therapy has the potential to regenerate lost nerve cells — and revolutionize the way Parkinson’s disease is treated.
“We are very encouraged by the early clinical safety data for ISC-hpNSC,” Russell Kern, PhD, executive vice president and chief scientific officer of ISCO, said in a news release.
The Phase 1 clinical trial (NCT02452723) was launched in March 2016, and expects to enroll 12 patients with moderate Parkinson’s disease. Patients are divided into three groups of four patients each. The groups will receive increasing doses, ranging between 30,000,000 to 70,000,000 neural stem cells.
The main goal of the trial is to assess the safety of the treatment, with patients followed for 12 months after the transplants.
But researchers will also use brain scans to assess whether the cells survive once transplanted, and if they contribute to making the patients better. Participants are assessed using the Unified Parkinson Disease Rating Scale (UPDRS) and other tools, and although the study is small, researchers will evaluate any potential improvements in symptoms.
Parkinson’s symptoms typically appear when a large proportion of brain cells containing dopamine are already gone. And while treatments with added dopamine may improve symptoms, at least for some time, the treatment approach is fraught with dosing difficulties.
The ISC-hpNSC cells are derived from what researchers call human parthenogenetic stem cells. Parkinson’s animal models that received the treatment improved, making researchers and patients alike hope that the same will be seen in patients.
The cells are thought to provide neurotrophic support to brain cells still alive. This means they secrete factors that help dying neurons survive. They are also thought to replace the dead and dying dopamine neurons.
But as the trial started, researchers raised concerns that not enough was known about what the cells do in the brain. The group of researchers also questioned whether the safety follow-up of one year was sufficient, and argued that clinical trials of stem cell approaches may be a premature step, in an article in the Journal of Parkinson’s Disease.
Still, ISCO has an optimistic view of the trial continuation.
“We look forward to dosing our second cohort with 50 million cells and enrolling the rest of our clinical trial participants in 2017,” Kern said. “The Data Safety Monitor Board meeting will be held in the beginning of May and we expect to receive approval to start an accelerated enrollment of patients into the second cohort.”
Saturday, June 17, 2017 at 9 am – The Movement Disorders Center at Albany Medical Center Presents: Moving Forward Together, an educational program for those living with Parkinson’s Disease and their caregivers.
At the Albany Marriott, 189 Wolf Road, Albany, NY.
Schenectady County Meeting: May 24, 2017 at 2 PM.
Bernie Elwood from Spikes Trikes will bring a trike for anyone interested in trying to ride a trike. It is a great way to exercise outdoors.
***Please note the meeting location has changed to Congregation Agudat Achim, 2117 Union Street, Schenectady, NY 12309