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Medical Marijuana and Parkinson’s

The Facts

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.

Desired Strains Effects and Administration Methods

Patients suffering from movement disorders should consider the indica cannabis strains with high CBD low THC that provide following palliative effects:

  • Anxiety relief
  • Muscle inhibitor

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

For your physician

Only physicians, nurse practitioners and physician’s assistants are allowed to recommend medical marijuana.

Recommending physicians must:

  • Be licensed and practicing in New York
  • Be qualified to treat the serious condition
  • Have complete the New York Department of Health-approved training course
  • Have registered with the DOH
  • Must be caring for the patients for whom they are making recommendations for, meaning that they have done a full assessment of the patients’ medical histories, current medical conditions and believe that the patient will benefit from the use of medical marijuana.
  • Must consult the prescription drug monitoring program and review the patient’s control substances history before issuing a recommendation

should not be used as a substitute for the care and knowledge that your physician can provide.

How to use

Start Low and Go Slow

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.

There are many factors that impact the effect, including:

  • Amount used (dosage)
  • Strain used and method of consumption
  • Environment/setting
  • Experience and history of cannabis use
  • Biochemistry
  • Mindset or mood
  • Nutrition or diet

Administration

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.

Inhalation Methods:

  • Battery-powered handheld vaporizer
  • Disposable handheld vaporizer with replacement cartridge options
  • Electric vaporizing device
  • Metered-dose inhalers (MDI)

Oral Forms:

  • Capsules/tablets
  • Oils
  • Tinctures
  • Oromucosal sprays

Effects of Medical Marijuana

Short-Term Cognitive Effects

Patients should be aware that cannabis use causes short-term impairments in the following brain functions:

  • Memory
  • Sense of time
  • Sensory perception
  • Attention span
  • Problem solving
  • Verbal fluency
  • Reaction time
  • Psychomotor control

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.

Long-Term Cognitive Effects

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.

Regulations

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.

Frequently Asked Questions

You can find a list of commonly asked questions for the New York Medical Marijuana Program here.


Sleep Disturbances – from PDF.org

read more at http://www.pdf.org/sleep_disturbance

Sleep Disturbances

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.

Symptoms

Nighttime Sleep Difficulties

  • Difficulty going to sleep, because PD symptoms like rigidity make it hard to get comfortable or turn over.
  • Difficulty falling asleep due to symptoms of anxiety or depression.
  • Difficulty staying asleep, because of a need to use the bathroom during the night, the return of motor symptoms when medications wear off, pain or hot flashes with night sweats.
  • Noise produced by tremor against a pillow.
  • Vivid dreams or nightmares caused by levodopa medications.
  • Early morning awakening, from a too-early bedtime or associated with depressed mood.
  • An overwhelming urge to move or an unpleasant sensation in the legs caused by restless legs syndrome.
  • Loud snoring, restless sleep and pauses in breathing during the night caused by sleep apnea. Although sleep apnea is usually associated with being overweight, this is not the always the case for people with PD. As many as 40 percent of people with PD have sleep apnea.
  • Activity, sometimes violent movements such as kicking, punching, running or getting out of bed due to rapid eye movement (REM) sleep behavior disorder. People with REM sleep behavior disorder do not relax their muscles normally during sleep, and thus act out violent dreams. This affects about a third of men with PD, but is less frequent in women with PD.
  • Disruption in the normal sleep-wake cycle caused by excessive sleepiness during the day or taking long naps during the day.

Troublesome Daytime Sleepiness

  • Excessive sleepiness during the day may be a symptom of PD and may even start before the characteristic movement symptoms appear.
  • Many PD medications can cause sleepiness during the day and may even cause sudden sleepiness with potentially dire consequences, such as falling asleep while driving.
  • Too much napping during the day makes it hard to sleep through the night.

Therapies

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:

  • A long-acting levodopa medication might prevent PD symptoms from returning during the night. Talk to your doctor about adjusting your PD medications to maximize wakefulness during the day and sleep at night, while controlling your symptoms.
  • For REM sleep behavior disorder, doctors may prescribe melatonin or clonazepam (Klonopin®), which is a long-acting sedative.
  • For sleep apnea, wearing a CPAP device (Continuous Positive Airway Pressure device) at night can help prevent obstruction of the airways. You need to have an overnight sleep evaluation for a sleep apnea diagnosis to be made.
  • Talk to your doctor about over-the-counter sleep aids, such as melatonin, as well as those available with a prescription. It is important to balance the benefits of sleep medications with the risks, especially of daytime sleepiness, cognitive decline and increased falls.
  • Antidepressants are sometimes prescribed to help nighttime sleep.
  • If urinary frequency keeps you up at night, be sure your doctor rules out causes other than PD. In addition, there are several medications that can be helpful, including oxybutynin (Ditropan®), tolterodine (Detrol®), trospium (Sanctura®), solifenacin succinate (VESIcare®), darifenacin (Enablex®), mirabegron (Myrbetriq®) and fesoterodine fumarate (Toviaz®). If your doctor has difficulty managing bladder symptoms, you may be referred to a bladder specialist (urologist).
  • Some physicians prescribe stimulants to help people with PD stay awake during the day.

Tips for Better Sleep

People with PD — and their care partners too — can take these steps to get to sleep faster and stay asleep:

  • Keep a regular sleep schedule — go to bed at the same time each night and get up at the same time each morning.
  • Choose your bedtime based on when you want to get up and plan to spend seven to eight hours a night in bed.
  • Make a bedtime routine — for example, snack, bath, tooth-brushing, toileting — and follow it every evening.
  • Spend time outdoors and exercise every day, in the morning if possible. Avoid exercise after 8:00 PM.
  • If you can’t get outdoors, consider light therapy — sitting or working near a light therapy box, available at drug stores and department stores.
  • If you nap, try to do so at the same time every day, for no more than an hour, and not after 3:00 pm.
  • Avoid stimulants like caffeine, nicotine and alcohol, especially six hours before bedtime. While alcohol can initially cause sleepiness, it actually disrupts sleep.
  • Avoid heavy meals in the evening.
  • If you take PD medications at night, keep your dose and a glass of water close by so you don’t have to get up in the middle of the night.
  • Sleep in a cool dark place and use the bed only for sleeping and sexual activity. Do not read or watch television in bed.
  • Avoid “screen time” — television, phones, tablets such as your iPAD — one or two hours before bed.

In addition, people with PD can:

  • Use satin sheets and pajamas to make moving in the bed easier.
  • Minimize drinking liquids for three hours before bedtime to help prevent frequent nighttime urination.
  • Go to the bathroom immediately before retiring.
  • Place a commode next to the bed, to minimize the effort, and the light needed, to get up during the night.

Five Steps to a Caregiving Plan for Your Family

From AARP Prepare to Care Manual

This guide is designed to help you and other family members discuss and create a caregiving plan for yourself or an aging parent, other relative, or close friend or neighbor. Each of the following five steps includes information on how to get started, questions to ask, and where to find basic resources. Don’t be discouraged if you can’t answer every question or fill in every blank. And remember, you don’t have to do it all at once. The important thing is to start—and continue—the conversation in a way that works for you and your family. STEP 1 Prepare to Talk STEP 2 Form Your Team STEP 3 Assess Needs STEP 4 Make a Plan STEP 5 Take Action


Dance Through PD Class – Every Tues at 1:30 starting June 6, 2017

Dance Through Parkinson’s

View printable flyer Dance Through Parkinson 

“The classes help me feel physically better, which helps my mood. It helps with my balance and gait issues. I have met many new friends with PD at varying levels of PD. It helps me be hopeful. The classes are a good challenge, but generally within my PD capabilities.” –Parkinson’s dance participant

CLASSES START TUESDAY, JUNE 6, 2017

 AND MEET EVERY TUESDAY FROM 1:30 TO 3:00
(no class on July 4th)

at
Rudy A. Ciccotti Family Recreation Center

 30 Aviation Road – Albany, 12205 – (518) 867-8920

Partners and caregivers welcome.

Persons with MS and other neuromuscular conditions welcome.

Walkers and wheelchairs welcome. No experience necessary.

$5 per class.

Teacher: Rachelle Smith-Stallman

Designed to engage participants’ minds and bodies through many styles while addressing such PD -specific issues as balance, flexibility, coordination and gait.

*Partially Supported by HopeSoars.org*


May 24, 2017 – Live from Brooklyn: Flamenco Dance & Music

DFPD full logo color and tag

Live from Brooklyn:

Flamenco Dance & Music

Wednesday, May 24

2:15-3:30 PM (US Eastern Time)

Join us as we continue our season of live-streamed Dance for PD​® classes from the Mark Morris Dance Center in Brooklyn, NY.

Our Flamenco Dance & Music Master Class class includes basic technique with an emphasis on the relationship between baile (the dance) and toque (the music). Through exercises for footwork, body posture, movement and coordination, students explore flamenco style, character and expression.

No registration required—just click below at the scheduled time.

Class taught by Sophia Mintz | Music by Bernard Schaller

Can’t make it? Click here to enjoy archived classes.

Sophia Mintz

Sophia Mintz

image

Flamenco Dance and Music


Lifespan in Parkinson’s Nearly Identical to General Population

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


August 4, 2017 – Hope Soars day at the races

Fri, August 4, 12pm – 6pm
Where

Saratoga Race Course, 267 Union Ave, Saratoga Springs, NY 12866

267 Union Ave, Saratoga Springs, NY 12866

https://goo.gl/maps/mKGi5qnw2kF2

Description

We will have a community event booth near the picnic area to raise awareness for Parkinson’s research and local Parkinson’s programs.


Young Onset PD (YOPD) Support Group Meeting information

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

Dates are:

• Saturday, June 17
• Saturday, August 19
• Saturday, October 21
• Saturday, December 16


12 Types of Exercise Suitable for Parkinson’s Disease Patients

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.

How does Parkinson’s disease affect the brain?

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.

  • Walking, hiking or jogging
  • Racket sports such as badminton, table tennis, squash
  • Yoga or Tai Chi
  • Outdoor cycling
  • Dancing
  • Aerobic classes
  • Marching with swinging arms
  • Swimming in different strokes

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.

  • Cycling on a static bike
  • Weightlifting using light weights
  • Swimming laps in the same stroke
  • Slow walking on a treadmill

Read more 


‘Miracle nun’ says Pope John Paul II healed her from Parkinson’s disease

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.

Read more

 

John Paul II “Miracle” Further Scrutinized

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.

Read more

 

Nun ill again after cure by Pope John Paul

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.

read more


10 Secrets to a Happier Life :: book

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

Read more https://www.amazon.com/Parkinsons-Treatment-Secrets-Happier-English/dp/1481854992/

 

 


June 17, 2017 – YOPD Meeting

​​MEETING​
YOUNG ONSET PARKINSON’S DISEASE (YOPD) SUPPORT GROUP
DATE:​​Saturday June 17, 2017
TIME:2:00-4:00 PM
LOCATION:Good Shepherd Lutheran Church, 510 Albany Shaker Road, Loudonville, New York

​​​For further information regarding the YOPD, contact: 518-783-3492 or
518-371-0448, after 3:00 p.m.

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


‘Hunger Hormone’ Could Help Treat Parkinson’s Disease

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.

Read more


Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind and Spirit

Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind and Spirit

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,


Parkinson’s Disease: 300 Tips for Making Life Easier

Parkinson’s Disease: 300 Tips for Making Life Easier

 

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,

 


Anxiety and depression

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.

Read more at https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?emotions-depression

 

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.

Read more at http://www.parkinson.org/understanding-parkinsons/non-motor-symptoms/anxiety/What-are-the-Treatment-Options-for-Anxiety

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.

Read more at http://www.parkinson.org/understanding-parkinsons/non-motor-symptoms/anxiety/What-are-the-Symptoms-of-Anxiety

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.

Read more at https://www.parkinsons.org.uk/information-and-support/anxiety

 


Sleep Advice from Davis Phinny Foundation

From https://www.davisphinneyfoundation.org/living-well/sleep/

What causes sleep problems in Parkinson’s?

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.

read more

MEDICATIONS read more

PAIN read more

ANXIETY, DEPRESSION AND OTHER PSYCHOLOGICAL ISSUES read more

NIGHTTIME TRIPS TO THE BATHROOM (NOCTURIA) read more

CAUSES NOT RELATED TO PARKINSON’S read more

pain not connected to Parkinson’s or sleep apnea.

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Simple Relaxation Techniques

From parkinsonsnewstoday.com

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.

The first two relaxation tips come from Harvard University and the last three are from the University of Michigan.

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.


First Dose Group in Parkinson’s Stem Cell Trial Successfully Transplanted

From Parkinson’s News Today

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.”


May 24, 2017 – Schenectady County Meeting

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


May 11, 2017 Join the CDPSG Support Group for the monthly meeting.

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of every month at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York.

Patients, spouses, siblings, medical professionals/students, friends, and caregivers are welcome to attend to learn more about Parkinson’s disease or obtain information.

Our speaker:
Heintje Calara MA, RN –   Has 25 years of nursing experience. He earned his nursing masters degrees from New York University. Heintje  is currently a candidate of doctoral degree in nursing practice with research project in the nursing care of Parkinson’s disease.
His work has been presented at the 2016 World Parkinson’s Congress (WPC) in Portland, OR, and also at the 2017 American Association of Neuroscience Nurses (AANN) in Boston, MA.
He served as the Parkinson’s disease nurse specialist at the NYU Langone Medical Center movement disorders center for many years and is now the nurse educator for the intestinal levodopa treatment for the northeast region of the US.
At our meeting,
Heintje will speak briefly about the treatment then a patient volunteer partner, who is currently on the intestinal levodopa treatment for Parkinson’s disease, will be sharing his/her own unique account on being on this treatment, what helped him/her decide, barriers overcome, questions asked, and how he/she is living with this treatment. There will be time for questions and answers.
We also will have group planning, refreshments, networking and social time.

Rest and sleep

Parkinson’s disease creates many challenges to getting a good night’s rest. Try these tips to help you get enough rest and sleep, which is an important component of overall health and quality of life.

Getting a Good Night’s Rest

  • Make a regular, relaxing bedtime routine a habit.
  • Maintain a regular sleep schedule: get up and go to sleep at the same time every day.
  • Get plenty of bright light exposure during the day, particularly natural daytime light.
  • Decrease fluids several hours before bedtime, and go to the bathroom before getting into bed to sleep.
  • Avoid strenuous exercise, alcohol, nicotine and caffeine within 4 hours of your bedtime.
  • Use your bed only for sleeping and intimacy with your partner.
  • Banish animals from the bed!
  • Customize your sleep environment: invest in a good mattress and pillows.
  • Set the bedroom temperature at a cool, comfortable level.
  • Limit daytime napping to a 40-minute NASA nap (yes, tested by astronauts!).
  • Lie down to sleep only when sleepy. Learn to tell the difference between fatigue and sleepiness.
  • If you are unable to sleep after 15 minutes, get out of bed and engage in a relaxing activity like listening to music, meditation or reading until you are sleepy.
  • Turn off the TV. If weaning yourself of a TV habit is difficult, try a relaxation or nature recording.
  • Keep lighting and noise at low levels when trying to sleep.
  • Eliminate the common but bad habit of “checking the clock” throughout the night.
  • Limit prescription sedatives to a 2-week period; instead, try over-the-counter alternatives such as Valerian root capsules.
  • Sleep as much as needed to feel refreshed, but avoid spending too much time in bed.

Getting into Bed

  • Approach the bed as you would a chair; feel the mattress behind both legs.
  • Slowly lower yourself to a seated position on the bed, using your arms to control your descent.
  • Lean on your forearm while you allow your body to lean down to the side.
  • As you body goes down, the legs will want to go up like a seesaw.
  • DO NOT put your knee up on the mattress first. In other words, don’t “crawl” into bed.

Rolling or Turning Over in Bed

  • Bend your knees up with feet flat.
  • Allow knees to fall to one side as you begin to roll.
  • Turn your head in the direction you are rolling and reach top arm across the body.
  • Some PD patients find that “silk sheets” help them move better in bed.

Scooting Over in Bed

  • Bend your knees up with feet flat.
  • Push into the bed with feet and hand to lift your hips up off the bed. Then shift hips in the desired direction.
  • Finish by repositioning feet in the direction your hips moved.

Getting Out of Bed

  • Bend knees up, feet flat on the bed.
  • Roll onto your side toward the edge of the bed by letting the knees fall to that side. Reach across with the top arm, and turn your head to look in the direction you are rolling.
  • Lower your feet from the bed as you push with your arms into a sitting position.


May 18, 2017 – Sleeping Well with Parkinson’s – on line discussion

Hear expert discussion, and ask questions in MJ Fox Foundation Third Thursdays Webinar series.

Sleep disturbances are a common non-motor symptom of Parkinson’s disease that may cause difficulty falling or staying asleep. In this webinar, we’ll discuss sleep disorders that can occur in Parkinson’s, how to manage them and current research on sleep and PD.

Title: Sleeping Well with Parkinson’s

Date: Thursday, May 18, 2017

Time: 12:00 PM Eastern Time

Duration: 1 hour


Sunnyview’s Adaptive Recreation Experiences program

Introducing the 2017 Summer Adaptive Recreation Experiences … Sunnyview’s Adaptive Recreation Experiences program provides individuals with disabilities the opportunity to return to previously enjoyed activities or to try something new. Sessions are designed to encourage and assist each participant to have fun, and be successful on a variety of levels. All programs are open to those in wheelchairs, as well as ambulatory participants. Experiences are staffed by Sunnyview therapists, volunteers, and experts in that specific activity. Each activity offers a unique opportunity to try our adaptive equipment

More information on printable flyer here


Exercise Classes

Boxing– Friday 10:00 am  Schott’s Boxing  –  21 Vatrano Rd, Albany, NY 12205  (518) 641-9064. This boxing PD activity is in presented in partnership with Hope Soars.  The cost is $10.00 for the initial visit which covers the cost of the hand wraps. Hope Soars is partnering with Schott’s and will pay most of the membership fee which will be determined based on class size. If you have any question’s please contact Mark Burek (518) 428-0056.
P4PPedaling for Parkinson’s M/W/F @ Bethlehem Y, Delaware Ave. 12 Noon.
Call your local YMCA’s for dates & time (perhaps cost) in your area.
P4P-Pedaling for Parkinson’s – Saratoga YMCA no charge—Thursday & Friday—phone (518) 583-9622
P4P-Southern Saratoga (Clifton Park YMCA) – Monday, Wednesday, Friday- members free, non-members $5.00 – phone (518) 371-2139
P4P-Glenville YMCA –  Monday, Tuesday, Thursday– Members free, non-members $5.00—phone (518) 399-8118
P4P-Duansburg/Delanson YMCA –  Monday, Thursday– Members free, non-members $6.00—phone (518) 895-9500
P4P-Troy YMCA – Monday, Wednesday, Friday – Members free, non-members $5.00– (518) 272-5900
P4P – Wednesday, Friday, Parkinson’s Wellness Class Thursdays 12 N -1:45 Cost $45 for 7 weeks – Bethlehem YMCA – 900 Delaware Avenue, Delmar, NY 12054 – Phone (518) 439-4394 Contact the Y for more information
PWR PD Wellness Recovery – 6 wk classes run independently by local YMCA’s. Bethlehem Y: call (518) 439-4394 for dates/times/cost $$
PWR PD Wellness Recovery – Thursday 10:30 $45/7 weeks Clifton Park Y: call (518) 439-2139 for more.
** PWR – Parkinson’s Wellness Recovery Class Thursdays 10:30 – 11:45 Cost $45 for 7 weeks – Clifton Park YMCA – 1 Wall Street, Clifton Park, NY 12065 – Phone (518) 371-2139 Contact the Y for more information
Thursdays Dance Class– Dance Theater of Syracuse, 117 Harvard Place, Syracuse, NY (504) 570-0752 1:45 – 3:00 PM
Tuesday Yoga Class- Heartspace Yoga and Healing Arts, 747 Madison Avenue, Albany, 12208, Donation is requested. Class is for Parkinson’s Patients and their family/caregivers, for information call Instructor Tamara Cookingham (518) 495-3239 tamaracookingham@gmail.com
 
Thursday Yoga Class- Honest Weight Coop, 100 Watervliet Avenue, Albany, NY, Free for Parkinson’s Patients and their family/caregivers, for information call Instructor Tamara Cookingham (518) 495-3239  tamaracookingham@gmail.com  
Dance for PD from home – http://capture.nbs-enb.ca/27/page/Home.aspx 
Yoga classes online every Wednesday live or view archived. http://nwpf.yourbrandlive.com/yoga  
 

FOUNDATIONS

 

Dancing Might Help Prevent Parkinson’s, Recent Research Points Out

Dancing helps prevent Parkinson’s disease, obesity, dementia, depression and anxiety, says Dr. Patricia Bragg, CEO of organic health company Bragg Live Food Products.“New studies show that dancing increases your memory and helps prevent a wide variety of diseases such as Alzheimer’s,” Bragg said in a press release.

Bragg’s father, Dr. Paul C. Bragg, was the originator of health stores in the United States, in 1912. For both father and daughter, dancing became a way of life.

Today, the 87-year-old Bragg sees herself as a crusader, born to carry on her father’s health movement, which pioneered many approaches that today would be considered “‘alternative medicine.”

“I have been dancing all of my life, and it’s not surprising to me that medical science is proving what I’ve known all along,” said Bragg.

Dancing has indeed been shown to help people with Parkinson’s recover balance and muscle control, as well as to help reduce the risk of Alzheimer’s dementia by 50 percent, which is expected to strike nearly 14 million Americans over the next 30 years.

“Think of the millions who can avoid this trauma simply by dancing,” said Bragg, the author of 10 best-selling “self-health” books.

According to a University of California Berkeley report, dancing has been shown to reduce depression, anxiety and stress and boost self-esteem. The New York Times also recently reported that dancing improves how the brain processes memory. Another study comparing the neurological effects of country dancing with those of walking and other activities suggested there might be something unique about social dancing.
In fact, dancing seems to increase cognitive acuity at all ages in a singular way, since they demand split-second decisions and exercise neuronal synapses. Dancing also helps keep the only neural connection to memory strong and efficient.
“My memories of dancing with Fred Astaire, Lawrence Welk, Arthur Murray and Gene Kelly are crystal-clear and so is my memory of the great time I had dancing last night,” said Bragg.


11 Facts About Parkinson’s Disease You May Not Know

Most people know of Parkinson’s disease and have a good idea of its symptoms, but very few know much more than that about this progressive illness. Since April is Parkinson’s disease awareness month, we’ve put together some simple stats and facts that you can share near and far.

This post appeared first on Parkinson’s News Today.

With help from the Parkinson’s Disease Foundation, everydayhealth.com, and ecaring.com, here are 11 facts about the disease most people don’t know. (Some of them may even surprise you!)

It’s a movement disorder. 
Parkinson’s disease is a neurodegenerative disease whereby cells responsible for producing dopamine die off in the substantia nigra area of the brain. Dopamine is essential for movement as it acts as a transmitter for signals from the brain to other parts of the body.

Who found it?
Parkinson’s disease was discovered by British surgeon Dr. James Parkinson in 1817.

How prevalent is it?
Approximately one million people have Parkinson’s disease in the U.S. and there are around 50,000 new cases diagnosed eac1h year.

Most patients are middle-aged. 
The average age of someone diagnosed with Parkinson’s disease is 56. Around 4 percent of Parkinson’s patients are diagnosed before the age of 50 and it’s considered young-onset if diagnosed before the age of 40.

When is it considered young-onset Parkinson’s disease?
It’s considered young-onset if diagnosed before the age of 40. The youngest recorded case of Parkinson’s was a 12-year-old patient.

How is it diagnosed?
There is no blood test or scan that can diagnose Parkinson’s disease. Doctors look for four classic symptoms of the disease before reaching a diagnosis: tremors, rigidity in the wrist and elbow joints, lack or slowness of movement, and an unstable posture.

It affects mostly men. 
Parkinson’s disease is twice as likely to affect men than women.

There’s no known cause. 
There is no known cause of Parkinson’s disease although a family history of the disease will increase your risk. Researchers think environmental factors such as smoking, pollution, heavy metals, medications and illegal drugs may be responsible for the onset of the disease. Head trauma, brain inflammation, and stroke have also been associated with the disease.

Parkinson’s is expensive. 
Treating patients with Parkinson’s disease costs the U.S. around $25 billion a year. The average patient will need $2,500 worth of medication each year and therapeutic surgery could cost up to $100,000.

How do you treat it? 
There is no cure for Parkinson’s disease but there are medications that can help patients with the symptoms. Patients can also undergo deep brain stimulation where electrical current is used to help block tremors and other movement symptoms of the disease.

There’s a correlation between Parkinson’s and depression. 
Dopamine is also associated with mood as well as movement. It’s estimated that more than half of Parkinson’s disease patients suffer from depression and around 40 percent suffer from anxiety.


10 Organizations That Support Parkinson’s Disease Patients and Their Families

If you’re struggling with Parkinson’s disease or know someone who is, it’s incredibly helpful to have a list of organizations that can support you or your loved one along the way. The following is not an exhaustive list, but hopefully it will prove to be a helpful resource.

The post 10 Organizations That Support Parkinson’s Disease Patients and Their Families appeared first on Parkinson’s News Today.

1. National Parkinson’s Foundation helps patients actively enjoy life through expert care and treatment research.

2. American Parkinson’s Disease Association provides support, education, and research to help you live a fuller life.

3. Michael J. Fox Foundation is helping to raise money for much-needed research to help find a cure. From ways you can get involved to a great blog chock-full of Parkinson’s-related information, there is so much information here.

4. Parkinson’s Disease Foundation provides information including news about the disease, information about upcoming events, insight into the latest research, and education about what to expect.

5. European Parkinson’s Disease Association advocates for the rights and needs of patients and their families.

6. The Davis Phinney Foundation is committed to supporting programs as well as research that help to deliver inspiration, information and provide tools that will enable people living with Parkinson’s to have more control in managing their disease.

7. The Parkinson Alliance is the umbrella organization for the Parkinson’s Unity Walk that takes place every spring in New York City. They also sponsor Team Parkinson, a fundraising racing event. You can find current news and information on research projects on their site.

8. Partners in Parkinson’s has a program where you can be connected to an advocate who will listen, offer advice and support to patients and caregivers at no cost. This is just one of the services you can find through Partners in Parkinson’s.

9. Caring.com has a support group for caregivers, family and friends of those with Parkinson’s disease. No subject is off-limits in this forum.

10. The National Parkinson Foundation has a site specifically geared to caregivers. They help carers navigate the emotional, financial, and physical challenges they may face caring for someone with Parkinson’s.

Having resources that help keep you informed, and offer support and encouragement to patients and their loved ones is so important. These are just 10 of the hundreds of organizations out there that are available to you. You can search online or visit your local library for more.


June 25, 2017 – Hope Soars and the Tri-City Valley Cats

When
Sun, June 25, 4pm – 9pm

Where
Joseph L. Bruno Stadium,
80 Vandenburgh Avenue, Troy, NY 12180, USA (map)

Description
Join us for a great night of baseball. Tickets are $25 which includes the pre-game buffet, a souvenir hat, and Reserved Box seats.
 

Can Stress Cause Parkinson’s?

Read more

Conclusion
“We speculate that chronic emotional stress may cause dopaminergic cell loss in susceptible individuals and propose that functional somatic syndromes are commonly seen in patients with PD. Dopaminergic dysfunction with abnormalities in striato–thalamo–cortical brain circuits may be the shared underlying cause.”


Control DBS with ipod

You can’t see tremors in Paul Detlefsen’s hands now, but a decade ago, the outlook for this 43-year-old Parkinson’s disease patient looked a lot different.
“My symptoms were mostly in the right arm, sever tremors,” he said.

Read more


Knocking out Parkinson’s one punch at a time

Video of local boxing class

ALBANY, N.Y. (NEWS10) — As many as 1 million people live with Parkinson’s disease in America. Now, a new exercise program is energizing patients diagnosed with the movement disorder and renewing hope among patients.


Positive Thinking may improve health and extend life

“Look on the sunny side of life.”
“Turn your face toward the sun, and the shadows will fall behind you.”
“Every day may not be good, but there is something good in every day.”
“See the glass as half-full, not half-empty.”
Researchers are finding that thoughts like these, the hallmarks of people sometimes called “cockeyed optimists,” can do far more than raise one’s spirits. They may actually improve health and extend life.

Read more 


Parkinson’s Patients Could Dance Their Way to Better Health

A recent article in the Harvard Gazette suggests dance as a potential treatment for neurodegenerative disorders such as Parkinson’s disease (PD).

Imaging studies have identified several brain regions involved in the complex, rhythmical, and coordinated movements that constitute dance. The motor cortex is — as with other kinds of voluntary movement — involved in planning, controlling, and executing dance moves.

Read more


Online video gallery

Partners in Parkinson’s has opened a video gallery online to help educate people about the disease and to support services to Parkinson’s patients worldwide. The group is also planning to host information events in two U.S. cities this year.

The gallery’s aim is to bring essential information to patients that can help improve their care at every stage of Parkinson’s. The events carry a more personal touch.

“I feel more comfortable . . . more knowledgeable, more connected and more hopeful,” said a  participant at a New York event in 2016. “Thank you for a powerful day.”

This year, the live events that bring information, educational tools and resources to patients will be in Grand Rapids, Michigan, and Orlando, Florida, according to a press release.

Online video gallery

The online gallery at the Partners in Parkinson’s website can be accessed at any time.

Its videos include stories by Parkinson’s patients and caregivers, and talks with healthcare professionals and researchers working on the disease.

 


Art Therapy and Parkinson’s Disease

Find Pleasure: Art making should be enjoyable. There is no such thing as a “wrong” mark. Every expression is valid.

Experience Control: Art making is an activity in which the artist can experience choice (through color, medium, line, etc.) and control over one’s environment.

Value Individuality: Free creation can encourage spontaneity which can, in turn, improve confidence.

Express Oneself: An experience of slowed speech or flat affect can limit one’s ability to communicate. Art is another language for communication which can be done at the artist’s own pace.

Relax: Art making has been proven to lower blood pressure, reduce perseverative thoughts, and lift depression. 

Improve Flow in Mind/Body Connection: In a relaxed state when focus is on the artistic expression rather than on the physical movement itself, motion can become more fluid. 

Promote Concentration, Memory, Executive Functions, Improve Hand-eye Coordination: Art making increases bilateral activity in the brain. When drawing, one uses both the right and left hemispheres of the brain. This is a wonderful way to take greater advantage of mental resources.

Read more


March 9, 2017 Beverwyck meeting agenda

Our next meeting is Thursday March 9, 2017

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of every month at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York.

Directions to our meeting


Speaker

Dr. Vishad Sukul will present on DBS and his frameless approach.

Dr. Sukul has joined the Department of Neurosurgery at Albany Medical Center, and has been appointed assistant professor of neurosurgery at Albany Medical College. Dr. Sukul is fellowship trained in functional neurosurgery for the treatment of complex neurological conditions such as chronic pain and movement disorders. He has an interest in deep brain stimulation for the treatment of essential tremor, dystonia, and Parkinson’s disease, and performs spinal cord stimulation and other neuromodulation techniques for chronic pain.

Read more about Dr. Sukul


Notes and future events

Support Group Officer changes:

Bruce Plotsky/Barbara Traynor/Tom Stephany are stepping back from their roles of Co-President and Vice President.

Jud Eson and Ian Wing have volunteered to fill these positions. It is with great gratitude from the outgoing officers towards Jud and Ian for taking on this responsibility.

– Hope Soars walk/run April 23 9:00 AM at the Corning Preserve

http://www.hopesoars.org/2017-5k.html

– We have a website http://www.cdparkinsons.org

– Speaker for next month (April 13, 2017) –

Lynda Shrager – safely access and navigate homes – age in place – adaptive equipment.

Lynda is an expert OT and can talk about helpful equipment, home safety, home modifications and more.

Read more about Lynda Shrager

Take the survey – what topics are of interest to you.

 

 

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of every month at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York.

 


The Ashkenazi Jewish Genetic Connection To Parkinson’s Disease

By The Michael J. Fox Foundation for Parkinson’s ResearchDo you know anyone who has Parkinson’s disease (PD)? It’s likely – the neurodegenerative disease affects one in 100 people over the age of 60, and more than 5 million people worldwide. Today, medicines exist to alleviate motor symptoms of the disease, but currently there are no treatments that can slow or stop its progression.

Researchers believe Parkinson’s results from a combination of both genetic and environmental factors, and, in recent years, scientists have discovered a number of genetic mutations associated with Parkinson’s. In about one percent of PD cases, the disease can be linked to a mutation in a gene called LRRK2.

While that may sound like a small number, the percentage is much higher in certain populations. In the Ashkenazi Jewish population, the mutation is responsible for 15 to 20 percent of PD cases. It is important to note that not everyone with a LRRK2 mutation will go on to develop Parkinson’s. But researchers believe that learning more about the genetics of Parkinson’s by studying those with and without the disease can help drive progress toward new treatments for everyone with PD.

A global study called the Parkinson’s Progression Markers Initiative (PPMI) launched efforts earlier this year to learn more about the genetics of PD. Families that carry a LRRK2 mutation have a vital role to play in this study, and there’s an easy way to be involved. The study is seeking volunteers to complete a brief survey to determine if they may be eligible to receive genetic counseling and testing of the LRRK2 gene at no cost. 

Take the survey to see if you qualify 

https://www.michaeljfox.org/page.html?ppmi-genetics


Gene mutation and Parkinson’s

By and large, Parkinson’s has not been considered to be a genetic disease. The majority of cases are called idiopathic, which simply means that we don’t know what caused the disease. In fact, only about 10 percent of PD cases have been linked to a genetic cause. Mutations in the LRRK2 gene are the most common cause of PD in this relatively small group, representing one to two percent of total Parkinson’s cases.

However, for people of certain ethnic backgrounds — Ashkenazi Jewish, North African Arab Berbers and Basque — mutations in LRRK2 account for a much greater number of PD cases than in the general population. While estimates vary, it is believed that changes in LRRK2 (predominantly the mutation scientists know as G2019S) account for 15 to 20 percent of cases in Ashkenazi Jews and about 40 percent of cases in North African Arab Berbers. Other genetic changes in LRRK2 that increase the risk of Parkinson’s disease have been found in additional populations, such as in Asians of Chinese descent. It remains an active area of research to find all the genetic changes in LRRK2 that may lead to Parkinson’s disease.

https://www.michaeljfox.org/mobile/topic.php?lrrk2

 

do you want to participate in a sty study?

click here https://www.michaeljfox.org/page.html?ppmi-genetics


Generic Azilect available 

I just had my azilect prescription refilled. 

I was able to get the get the  generic (rasagiline mesylate) for the first time. Co-pay of $10 instead of $40. 
(


Is It Parkinson’s Disease? Blood Test Might Tell

Measuring a particular blood protein might help doctors easily distinguish Parkinson’s disease from some similar disorders, a new study suggests.
The potential blood test is “not ready for prime time,” Parkinson’s disease experts said. But, it marks progress in the quest for an objective way to diagnose Parkinson’s and similar conditions known as atypical parkinsonian disorders, they noted.
Read more


Long-term outlook

Life expectancy for people with Parkinson’s who receive proper treatment is often about the same as for the general population. Early detection is the key to reducing complications that can shorten your life. If you suspect that you or a loved one may have Parkinson’s disease, see your doctor right away.


YOPD 2017 meeting dates

YOUNG ONSET PARKINSON’S DISEASE
(YOPD) SUPPORT GROUP
MEETING INFORMATION

➢ The YOPD will be meeting every January through April on the third Saturday of the month.
Time: 2:00 PM
Location: Good Shepherd Lutheran Church, 510 Albany Shaker Road, Loudonville 12205

For 2017 the meeting dates are:
• Saturday, April 15

➢ 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

Dates are:

• Saturday, June 17
• Saturday, August 19
• Saturday, October 21
• Saturday, December 16

(1/17)


Exercise Can Be a Boon to People With Parkinson’s Disease – NY Times

“The earlier people begin exercising after a Parkinson’s diagnosis, and the higher the intensity of exercise they achieve, the better they are,” Marilyn Moffat, a physical therapist on the faculty of New York University, said. “Many different activities have been shown to be beneficial, including cycling, boxing, dancing and walking forward and backward on a treadmill. If someone doesn’t like one activity, there are others that can have equally good results.”

Read more


Parkinson’s patients could be cured of tremors using new ultrasound machine

Parkinson’s patients and others suffering debilitating tremors could be cured of their shaking using a new ultrasound machine which targets their brain cellsDoctors at Imperial College Healthcare NHS Trust have treated the first patients using the new technique which avoids the need for invasive brain surgery.
Read more 


The benefits of controlled breathing 

Take a deep breath, expanding your belly. Pause. Exhale slowly to the count of five. Repeat four times.

Congratulations. You’ve just calmed your nervous system.

Controlled breathing, like what you just practiced, has been shown to reduce stress, increase alertness and boost your immune system.

From The New York Times read more


Parkinson’s could be treated with shark compound?

Squalamine, a chemical compound found in dogfish sharks, has the potential to reduce the formation of toxic proteins related to the development of Parkinson’s disease, new research suggests

Published in the Proceedings of the National Academy of Sciences, the study reveals that squalamine halted the buildup and toxicity of the protein alpha-synuclein (α-synuclein) in roundworm models of Parkinson’s disease and human neuronal cells.

Read more http://www.telegraph.co.uk/science/2017/01/16/dogfish-shark-extract-could-help-treat-parkinsons-disease-scientists/


About us

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of every month at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York.  No meetings in January and February.

Subscribe to our email list to receive reminders and announcements

Serving the people with Parkinson’s, their families and caregivers in Albany, NY and throughout New York’s Capital Region.

Our mission is:

  • To provide moral support and fellowship to people with Parkinson’s Disease, their families and caregivers.
  • To raise awareness and disseminate information regarding Parkinson’s Disease
  • To act as a resource center for members and others who would like to know more about Parkinson’s.

We welcome new members – Please join us

(more…)


Podcast: Gut Bacteria and Parkinson’s Connection

Listen here https://www.michaeljfox.org/mobile/news-detail.php?podcast-gut-bacteria-and-parkinson-connection

The 100 trillion or so bacteria in our guts are important players in our normal biological processes and in protection against disease. Researchers have begun exploring possible imbalances in some bacteria levels in people with Parkinson’s and how those differences may lead to disease onset or progression. While this area of investigation is still fairly new, the field has some promising leads.


Your symptoms are getting worse over a short time?

Parkinson’s declines slowly, and not over hours, days or weeks. If PD symptoms worsen precipitously over a short period of time, then it is critical to search for secondary causes for these worsening symptoms. Potential causes for worsening Parkinson’s symptoms may include medication changes (which may be intentional changes or due to medication error), infections (such as a urinary tract infection, cold or flu), other medical problems (e.g., dehydration, problems with the heart, lungs, kidneys, liver, etc.), and/or stress, sleep deprivation, etc. read more http://www.pdf.org/en/parkinson_briefing_secrets_myths_question_answer


April 13, 2017 Speaker – safely access and navigate homes – age in place

 April 13, 2017 Monthly Meeting

Join the CDPSG Support Group for the monthly meeting.

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of every month at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York.  No meetings in January and February.

There will be networking.  Patients, spouses, siblings, medical professionals/students, friends, and caregivers are welcome to attend to learn more about Parkinson’s disease or obtain information

Lynda Shrager

Lynda Shrager began navigating through the mystifying maze that is our national health care system on the day, more than 19 years ago, when she and her daughter were simultaneously diagnosed with life-threatening medical conditions. After successfully negotiating the crisis and not losing her sanity along the way, she realized it was her organizing skills that were instrumental in getting her through it all. By the time her mother had been diagnosed with a very aggressive cancer, Lynda had become the expert in organizing the tasks that needed to be tackled to manage a serious illness while simultaneously keeping up with all the other aspects of everyday life. The Organized Caregiver was born.

Lynda Shrager, OTR, MSW, is a breast cancer survivor and the author of Otherwise Healthy® – A Planner to Focus Your Thoughts on Organizing Life after Being Diagnosed with Breast Cancer. Her newspaper column Mom’s Rx, now in its eighth year, is published in the Hearst daily Albany Times Union and has appeared in countless newspapers across the country. For over thirty-three years Lynda has practiced in the medical field of geriatric rehabilitation, focusing on all aspects of senior health and wellness.

Lynda combines her expertise as an occupational therapist, master’s level social worker, professional organizer and aging in place specialist to pursue her passion of providing therapeutic care in the patient’s home environment and in educating their caregivers. To that end she is eagerly launching a new initiative called “At Home for Life” to facilitate a senior’s desire to remain in their own home as they face the crossroads of diminished physical and cognitive abilities. Lynda will provide residential assessments and make recommendations to enable people to safely access and navigate their own homes, thereby allowing them to age in place.

Lynda’s engaging, humorous, and motivational presentation style creates a relaxed and comfortable environment that facilitates the educational process. Lynda shares stories and insight from both a personal and professional perspective to inspire her audience.


Fatigue and Parkinson’s 

In this video from the Davis Phinney Foundation, Dr. Andrew Duker discusses some of the reasons why Parkinson’s disease patients get so fatigued and what can be done 

Read more


August 10, 2017 – meeting agenda

August 10, 2017  Monthly Meeting

Join the CDPSG Support Group for the monthly meeting.

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of every month at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York.  No meetings in January and February.

There will be networking.  Patients, spouses, siblings, medical professionals/students, friends, and caregivers are welcome to attend to learn more about Parkinson’s disease or obtain information

 


October 12, 2017 – Meeting agenda

October 12, 2017

Join the CDPSG Support Group for the monthly meeting.

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of every month at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York.  No meetings in January and February.

There will be networking.  Patients, spouses, siblings, medical professionals/students, friends, and caregivers are welcome to attend to learn more about Parkinson’s disease or obtain information.

 


September 14 – meeting agenda

September 14, 2017

Join the CDPSG Support Group for the monthly meeting.

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of every month at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York.  No meetings in January and February.

There will be networking.  Patients, spouses, siblings, medical professionals/students, friends, and caregivers are welcome to attend to learn more about Parkinson’s disease or obtain information.


December 14, 2017 – meeting agenda (date TBD)

December 14, 2017 (date TBD)
Holiday party
January, February no meetings

Join the CDPSG Support Group for the monthly meeting.

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of every month at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York.  No meetings in January and February.

There will be networking.  Patients, spouses, siblings, medical professionals/students, friends, and caregivers are welcome to attend to learn more about Parkinson’s disease or obtain information.


November 9, 2017 – Meeting agenda

November 9, 2017

Join the CDPSG Support Group for the monthly meeting.

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of every month at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York.  No meetings in January and February.

There will be networking.  Patients, spouses, siblings, medical professionals/students, friends, and caregivers are welcome to attend to learn more about Parkinson’s disease or obtain information.


July 13, 2017 (date tbd) – meeting agenda

July 13, 2017 (date tbd) Meeting

Join the CDPSG Support Group for the monthly meeting.

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of every month at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York.  No meetings in January and February.

There will be networking.  Patients, spouses, siblings, medical professionals/students, friends, and caregivers are welcome to attend to learn more about Parkinson’s disease or obtain information.

Picnic

June 8, 2017 Beverwyck Meeting agenda

Join the CDPSG Support Group for our monthly meeting.

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of every month at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York.  No meetings in January and February.

There will be networking.  Patients, spouses, siblings, medical professionals/students, friends, and caregivers are welcome to attend to learn more about Parkinson’s disease or obtain information.

Karen Woods from http://www.pharmacannis.com/ny

will speak about medical marijuana

Read about medical marijuana here

About Vishad Sukul, M.D.

Dr. Sukul is fellowship trained in functional neurosurgery for the treatment of complex neurological conditions such as chronic pain and movement disorders. He has a particular interest in deep brain stimulation for the treatment of essential tremor, dystonia, and Parkinson’s disease, and also performs spinal cord stimulation and other neuromodulation techniques for chronic pain. Additionally, he practices general cranial and spine neurosurgery.

Dr. Sukul completed his fellowship training in stereotactic, functional and epilepsy neurosurgery at Vanderbilt University Medical Center in Nashville, TN, and his neurosurgery residency training at Temple University Hospital in Philadelphia, PA. He received his medical degree from Rutgers New Jersey Medical School. t Albany Medical College.

Dr. Sukul is fellowship trained in functional neurosurgery for the treatment of complex neurological conditions such as chronic pain and movement disorders. He has a particular interest in deep brain stimulation for the treatment of essential tremor, dystonia, and Parkinson’s disease, and also performs spinal cord stimulation and other neuromodulation techniques for chronic pain. Additionally, he practices general cranial and spine neurosurgery.

Dr. Sukul completed his fellowship training in stereotactic, functional and epilepsy neurosurgery at Vanderbilt University Medical Center in Nashville, TN, and his neurosurgery residency training at Temple University Hospital in Philadelphia, PA. He received his medical degree from Rutgers New Jersey Medical School. He is active in clinical research.


National Parkinson Foundation toll-free Helpline

The National Parkinson Foundation (NPF) runs a toll-free Helpline, 1-800-4PD-INFO, (473-4636) The lifesaving NPF Helpline, launched in 2010, is staffed by a team of patient-focused nurses, social workers and therapists who answer calls about Parkinson’s disease (PD) in English and in Spanish Monday through Friday from 9 a.m. to 5 p.m. EST.

“NPF’s Helpline links our groundbreaking research to improve the lives of people with Parkinson’s today directly with the community we serve,” I know this first hand because the Helpline has made a difference in the life of my mother, who is living with Parkinson’s.” –John Kozyak, NPF’s Chairman of the Board. ”

“We’re more than just an information line. We truly care about the people we serve and that’s the key to our success, Whether you have yet to receive a diagnosis, are recently diagnosed with Parkinson’s, or caring for a family member with the disease, we are here to help you understand your condition, your care, and the latest research on how patients can live their best lives with Parkinson’s. We spend as much as 45 minutes on calls with those who have been recently diagnosed – more than three times the average – because we can really make a difference.” –  Adolfo Diaz, NPF’s Director of Patient Services who manages the Helpline.”

NPF’s Helpline Specialists help callers locate resources in their area, as well as send a customized informational packet after the call. The NPF packets arm people with Parkinson’s and their families with helpful information on preparing for an appointment with their general practitioner or movement disorder specialist. People with Parkinson’s disease, their care partners and families are invited to call to receive emotional support and referrals to health professionals and community resources. A wide variety of helpful NPF publications and the Aware in Care kit are also available for order through the Helpline.

NPF also has an online video series called, “Ask the Helpline,” where our PD Specialists answer the most frequently asked questions including: why exercise is important, what role a movement disorder specialist plays and how the role of caregiver changes over time.

People with questions about PD may also e-mail the NPF Helpline at helpline@parkinson.org.

 


Diabetes drug slows experimental Parkinson’s disease progression, human trials to begin next year

A new investigational drug originally developed for type 2 diabetes is being readied for human clinical trials in search of the world’s first treatment to impede the progression of Parkinson’s disease, following publication of research findings today in the journal Science Translational Medicine. More

A drug initially designed to treat diabetes may be a breakthrough treatment for Parkinson’s disease. After decades of disappointment, could MSDC-0160 be the drug researchers have been searching for? More


Common Natural Sweetener May Treat Parkinson’s Disease

This post is about experimental drugs and treatments, Under absolutely no circumstances should anyone reading this consider it medical advice.  These are novel results that need to be replicated and verified before being considered gospel.  Before considering or attempting any change in your treatment regime, please consult with your doctor or neurologist. 

The natural sweetener mannitol, a common component of sugar-free gums and candies, may hold potential for Parkinson’s disease (PD) according to a study, funded in part by the Parkinson’s Disease Foundation, in the June 14, 2013  issue of The Journal of Biological Chemistry. In this initial study, the compound not only improved PD-like symptoms in fruit flies, but also reduced harmful levels of alpha-synuclein (the hallmark of PD) in the brains of fruit flies and mice.

Read more at http://www.pdf.org/en/science_news/release/pr_1373476667


The Israeli scientists were interested in the ability of Mannitol to inhibit the formation of alpha synuclein aggregates (clumps of the protein that is associated with Parkinson’s disease). Chemicals similar to Mannitol have exhibited protein destabilizing properties, so it was an interesting idea to test.

The researchers used different concentrations of mannitol and added it to a solution of alpha-synuclein. They left this concoction shaking for 6 days (at 37°C) and then assessed the levels of aggregation. Curiously the low levels of Mannitol had the strongest inhibitory effect, while the higher concentrations had no effect. The researchers repeated the experiments and found similar results.

Given this success, they turned their attention to an animal model of alpha synuclein: a genetically engineered fly that produces a lot of alpha synuclein. They found that Mannitol treated flies had significantly less alpha synuclein aggregation in their brain than untreated flies. This study was then repeated in genetically engineered mice (that produce too much alpha synuclein) and guess what? They found the same results.

These results led the scientists to suggest that “mannitol administration in combination with other drugs could be a promising new approach for treating PD and other brain-related diseases such as Alzheimer disease”.

A warning regarding Mannitol

Before you rush out and start loading up on Mannitol there are a few things you should know about it.

It is used medically, usually to treat increased pressure within the skull.

It should not be abused, however, as it can have an osmotic effect (in particular, attracting water from the intestinal wall). Consumed in excess, it will cause diarrhea, abdominal pain, and excessive gas.

In addition to intestinal problems, Mannitol has also been associated with worsening heart failure, electrolyte abnormalities, or low blood volume. We also do not know what effect it may have on absorption of L-dopa and other Parkinson’s disease medications.

Read more at https://scienceofparkinsons.com/2016/05/10/manna-from-heaven-mannitol-and-parkinsons-disease/


Tel Aviv University researchers say artificial sweetener could prevent aggregation of toxic proteins in the brain.
http://mfa.gov.il/MFA/InnovativeIsrael/ScienceTech/Pages/Sweet-news-for-Parkinson’s-disease-4-May-2014.aspx


Another Possible Benefit of Taking Mannitol for Parkinson’s

An added benefit, it has the effect of stimulating a daily bowel movement. If someone is looking for assistance with constipation mannitol can serve double duty!!


Listen to the radio show interview with Don Don McCammon which I have embedded in this post below.

http://www.medscape.com/viewarticle/806873

Mannitol would be an attractive treatment option because it’s already approved for various medical uses by the FDA, as a diuretic and as a rinsing agent during certain surgical procedures.


Testimonials

 


Microsoft researcher creates wearable which smooths handwriting in Parkinson’s Disease

Haiyan Zhang, Innovation Director at Microsoft Research Cambridge, has taken part in the BBC’s The Big Life Fix challenge which asks young technologists to use their skills to help others.
Her task was to find a way to help 29-year-old Emma Lawton, who is a graphics designer, to improve her writing and drawing skills after this was negatively impacted by her Parkinson’s Disease diagnosed three years ago.

Read more at BBC.com

Read more at steemit.com

(Video) Emotional moment young woman with Parkinson’s Disease writes again thanks to gadget read more at mirror.co.uk


ELISPOON – the bowl of the spoon remains horizontal and keeps the food in place.

Whatever movement of the wrist is performed, the bowl of the spoon remains horizontal and keeps the food in place.

The material used is lightweight and strong.  A key characteristic is the spoon’s affordability.

There are no electrical components or batteries, making it carry anywhere and to clean.

ELISPOON is a product designed and built to ease the life of the users and their love.

Two graduates from Israel’s Technion developed a spoon that their child with motor co-ordination problems could use without spilling its contents.   Now anyone can buy it. Useful also for the elderly or anyone suffering from tremor


New Website section for Books


A new section of the website is being developed.  The Book section will list books that people have found helpful.  You can see the books so far here or by clicking the “Books” post category on the right or the “Books” menu item at the top of the page.

Do you have a favorite book abut Parkinson’s? Let us know about it by filling out this form

 

 


Use the website forum to ask a question or start a discussion

An Internet forum is a discussion area on a website. Website members can post discussions and read and respond to posts by other forum members. A forum can be focused on nearly any subject and a sense of an online community, or virtual community, tends to develop among forum members. A forum usually allows all members to make posts and start new topics.

 

Start a discussion or ask a question by starting here.

 


Michael J Fox Foundation, ‘Faces of Parkinson’s’, 2014


Chair Yoga at St. Sophia’s Tuesday

For seniors with mobility issues, there is a “Chair Yoga” class sponsored by NNORC which meets on Tuesday at 11 a.m. The instructors for all three classes are trained and dedicated professionals.

 

Monday morning Tai Chi class sponsored by Albany Senior Services which meets at 9:30 a.m.

At St. Sophia Greek Orthodox Church 440 Whitehall Road Albany, New York 12208
Tel: (518) 489-4442

(Note: There are no membership fees for this group.)

For health and fitness, there are programs that are free. A Monday morning Tai Chi class sponsored by Albany Senior Services which meets at 9:30 a.m.

 

http://stsophia.net/events/participate/


Tai Chi class at St. Sophia’s Monday

Monday morning Tai Chi class sponsored by Albany Senior Services which meets at 9:30 a.m.

At St. Sophia Greek Orthodox Church 440 Whitehall Road Albany, New York 12208
Tel: (518) 489-4442

(Note: There are no membership fees for this group.)

For health and fitness, there are programs that are free. A Monday morning Tai Chi class sponsored by Albany Senior Services which meets at 9:30 a.m.

And for seniors with mobility issues, there is a “Chair Yoga” class sponsored by NNORC which meets on Tuesday at 11 a.m. The instructors for all three classes are trained and dedicated professionals.

http://stsophia.net/events/participate/