Diagnosis, Treatment and News

Quotes from Steven Hawking

On Taking Risks

“I want to show that people need not be limited by physical handicaps as long as they are not disabled in spirit.”


The Meaning of Life

“Remember to look up at the stars and not down at your feet. Try to make sense of what you see and wonder about what makes the universe exist. Be curious. And however difficult life may seem, there is always something you can do and succeed at.”


NY Times Obituary


New wearable tremor suppression gloves may hold huge benefits for Parkinson’s disease patients

A new prototype for wearable tremor suppression gloves has a team of Western University researchers believing real change is on the way for the more than 6 million people in the world afflicted by Parkinson’s disease.

Ana Luisa Trejos, an Electrical and Computer Engineering professor at Western, and members of her Wearable Biomechatronics Laboratory Group have developed a novel approach for designing wearable technology that allows those with Parkinson’s to exhibit improved motor control while reducing or even restricting involuntary muscle contractions commonly associated with the long-term and degenerative neurological disorder. More than 25 percent of people with Parkinson’s disease have an associated action tremor.

Previous studies from Trejos and her team show suppression devices targeting elbows or wrists often produce exaggerated tremors in the fingers, which causes even more difficulty for those with Parkinson’s.

” If you have seen anybody with Parkinson’s that has tremors, they have them in their entire body but it’s the ones in their fingers that really prevent them from performing the activities of daily living,” explains Trejos, also a key investigator at Western’s Bone and Joint Institute.

Instead of suppressing tremors, which is what most other tremor suppression devices do, these new personalized gloves actually track voluntary movement so if a person is trying to accomplish a particular task, the glove allows the action to happen while minimizing the tremor.

“Our gloves don’t suppress all movements, which is what most other wearable tech systems do,” says Trejos. “They are either suppressing or not suppressing movement so when a person is trying to perform a specific task, the devices actually prevent them from performing the action they are trying to perform. They have to act against it. Our gloves actually allow the voluntary movement to happen and at the same time, prevent the tremor from occurring.”

The new gloves will be custom designed for both hands of each patient to maximize the benefits of the wearable technology. The prototype was created specifically for the left hand of Western doctoral student Yue Zhou, who 3D-printed its key components. Mary Jenkins from Western’s Schulich School of Medicine & Dentistry and Michael Naish from Mechanical and Materials Engineering at Western also collaborated on the project.

“While collecting data, we have seen first-hand

that people with Parkinson’s get really frustrated when they can’t do something on their own and I feel our glove will allow them to get back to their daily living,” says Trejos. “It can be very frustrating to not be able to eat or button a shirt on your own. Or even draw. Things we take for granted. By creating a glove that allows people to perform these actions while suppressing the tremors, I think they could go back to being much more independent in their own homes for a far longer period of time.”

MRI-Focused Ultrasound Undergoing Phase 3 Clinical Trial for Parkinson’s Treatment

New technology that uses MRI-guided focused ultrasound to target areas of the brain affected by Parkinson’s disease and improve motor symptoms will be further tested in a pivotal Phase 3 clinical trial.

Led by the University of Maryland Medical Center (UMMC) and the University of Maryland School of Medicine (UMSOM), the randomized trial will assess the safety and effectiveness of the novel procedure. It is the final step before the U.S. Food and Drug Administration (FDA) will consider approving it as a nonsurgical treatment for  Parkinson’s.

“The goal of the focused ultrasound treatment is to both lessen the main symptoms of Parkinson’s disease, which include tremors, rigidity and slow movement, as well as treat the dyskinesia that is a medication side effect, so that less medication is needed,” Howard M. Eisenberg, MD, the trial’s lead investigator, said in a press release.  Eisenberg is a professor and the chair of neurosurgery at both UMSOM and UMMC.

Participants are currently being recruited for the new trial (NCT03319485), which follows a previous study where MRI-guided focused ultrasound led to a 62% improvement in upper-limb tremors, compared with 22% in the control group, in patients with tremor-dominant Parkinson disease who did not respond to other forms of therapy.

Findings were published in the study, “Safety and Efficacy of Focused Ultrasound Thalamotomy for Patients With Medication-Refractory, Tremor-Dominant Parkinson Disease: A Randomized Clinical Trial,” in the journal JAMA Neurology.

“The results of the pilot trial, so far, are very encouraging,” said Eisenberg about the first trial conducted in 2015 with 20 patients, the majority of whom were treated at UMMC.

With the new technology, clinicians direct ultrasound waves to a brain structure called the globus pallidus, which helps regulate voluntary movement, to destroy damaged tissue, decreasing the uncontrolled movements that characterize Parkinson’s disease.

Doctors use magnetic resonance imaging (MRI) to create a temperature map of the brain, giving them a real-time picture of the region they want to hit with the sound waves. They then raise the energy, directly targeting that area of the brain to destroy the tissue.

Patients are awake and alert the entire time in the MRI scanner, enabling them to give clinicians constant feedback. They are fitted with a helmet through which the energy is converted into sound waves, which are then targeted to the globus pallidus. The approach is noninvasive, meaning there is no surgery or radiation treatment involved.

Current therapies to lessen movement and coordination problems in Parkinson’s patients include levodopa (sold under the brand name Dopar, among others), which is the most common. Patients with advanced Parkinson’s may undergo surgery, known as deep brain stimulation, to implant micro-electrodes in the brain that help control tremors, rigidity and dyskinesia (abnormal, uncontrolled, involuntary movement).

“For people with Parkinson’s disease and other movement disorders such as essential tremor, focused ultrasound is an appealing alternative to deep brain stimulationbecause it does not involve more invasive surgery,” said Paul S. Fishman, MD, PhD, professor of neurology at UMSOM and a neurologist at UMMC.

Enrollment in the study is approximately 80 to 100 participants, and the inclusion criteria were designed to include a wider population of Parkinson’s patients. Sponsored by InSightec, the trial is recruiting participants in the U.S. at the University of Maryland Medical System, Maryland; Weill Cornell Medicine, New York; and The Ohio State Wexner Medical Center, Ohio.

“University of Maryland Medicine is a world leader in pioneering MRI-guided focused ultrasound to become a new standard of care for treating many devastating brain diseases including Parkinson’s, essential tremor and glioblastoma, an often deadly type of brain cancer,” said E. Albert Reece, MD, PhD, MBA, vice president of medical affairs at the University of Maryland and dean of UMSOM.

7 marathons, 7 days, 7 continents and one man with Parkinson’s.

During the first marathon, Bret Parker felt great — for the first 15 miles of ice and snow.

“I was chugging along, and I had no symptoms,” he recalled the next day. “I was running a good pace. I said, ‘You got this.’ ”

He paused. “And that was the kiss of death. I started slowing down.

Read more

6 of the best apps for chronic illness management

Medisafe is an app that helps patients manage medications

Pain Diary works for anyone with a chronic illness.

ZocDoc is a handy app if you’ve recently been diagnosed with a chronic illness, since one of the first things you’ll need to do is find a doctor to treat you. ZocDoc allows you to search for local specialist doctors who are approved by your insurance company.

My Medical Info is an app that stores all your relevant health history and insurance details.

Fooducate helps you keep track of your diet and make healthy choices. Eating well is an integral part of managing any chronic illness and this app will help you to eat the right foods and get you to a healthy body weight.

Sleep Cycle helps you get the best out of your sleep. The app analyzes how much sleep and the quality of sleep you get each night.

Read more


Open Letter to Acadia Pharmacudicals

TO: Paul Sciortino
Neuroscience Sales Specialist
ACADIA Pharmaceuticals Inc.
cell 802-238-3903


From: Jud Eson and Nancy R. Eson

Hi Paul,

We talked about having you give a presentation to our support group http://www.cdparkinsons.org in the spring.

After hearing about the ad put out by Acadia, and now seeing it


we will not have you come to our meeting, or have you speak with us about this drug,

We found the video to be irresponsible, inappropriate and frightening.

It is irresponsible to portray possible Parkinson’s symptoms in such a way that brings only fear and false information to people who are trying to do their best to live their life in a positive way while dealing with this disease, Those newly diagnosed, or less knowledgeable about Parkinson’s Disease, should not be led to believe that this is their future, especially when for so many it is not.  We hope our adult children never see this ad, as it would be terrifying for them to think this could be me.  While it may happen in some form, it may not at all, and certainly not with dramatic background music designed to terrify.

Please forward this to your superiors.  We hope to learn that the decision is made to cease airing of this ad.  It’s done enough damage already.

Jud Eson and Nancy Eson


Capital District Parkinson’s Support Group

Fox Insight

The future of Parkinson’s research is in powerful hands. Yours.

Fox Insight is an online clinical study where people with Parkinson’s disease and their loved ones share information that could transform the search for better treatments. You can help shape the future of Parkinson’s research — but it’s going to take all of us, working together. You in?



Depressed? Try this

SuperBetter increases resilience – the ability to stay strong, motivated and optimistic even in the face of difficult obstacles. Playing SuperBetter makes you more capable of getting through any tough situation—and more likely to achieve the goals that matter most to you. Proven results in just 10 minutes a day


Be prepared for a hospital visit

No one wants to go to the hospital, but sometimes it is necessary.

Here are some ways to be prepared

Aware in care kit
To protect, prepare and empower people with Parkinson’s before, during and after a hospital visit, we developed the free Aware in Care kit with tools and information to share with hospital staff during a planned or emergency hospital visit.

Aware in Care kits can be requested from your local Parkinson’s Foundation Chapter or Center of Excellence. If you do not live in an area with a Chapter or center, you can order a kit online.


Vial of life

Everybody should have a Vial of Life form filled out. The Vial of Life is a smart way to have your medical information on hand just in case of an emergency. Seniors need this because of their constant medical changes and medications… It’s the right thing to do.

Put one in your wallet, in your glove compartment, and especially on your refrigerator door

Print a kit http://www.vialoflife.com/print-free-vial-kits/

Print a decal to put on your door and refrigerator http://www.vialoflife.com/print-free-vial-kits/

6 Things You Should Say to Someone With Parkinson’s Disease



Finding out a friend, family member or co-worker has Parkinson’s disease is devastating, and despite our best intentions, we often say things that are offensive or hurtful. What the patient really wants to hear is that you’re there for them and thinking of them.

With that in mind, we’ve compiled a list of things you should say to a person who has been living with Parkinson’s disease:

1. “I’ll do that for you!”
The “that” could be anything that you know the patient would find helpful, from fetching groceries to giving them a ride to the hospital to cooking them dinner. Actions speak louder than words and even just one act of kindness can help them out immensely, especially if they’re feeling ill following a treatment session.

2. “What are you thinking about today?”
It can be difficult to judge what’s going through the mind of someone who’s living with Parkinson’s. They’ll have good days and bad days, so some days you can be their cheerleader, and on other days, a shoulder to cry on. Asking them what they’re thinking about opens the lines of communication, and could spark a conversation about upcoming treatment, how tired they are or maybe nothing to do with their illness, if they want to get their mind off the subject.

3. “What don’t you want to talk about?”
Your friend or loved one may be completely open about all aspects of their illness, or there could be some areas that they really don’t want to talk about. Respect this by asking what’s off limits. This way you’ll know that you’re not overstepping.

4. “Thinking about you!”
This can either be said verbally or via a text message, email or Facebook message. It’s short and simple and lets the person know that you’re thinking about them and are in their corner without probing them for information.

5. “So this happened to me.”
It’s OK to talk about yourself and share good news about your life with your friend or loved one, so if you got that promotion, your kid did well at school or you just bought a new car — tell them. You can also share the bad things as well, because they still care about your life.

6. Nothing at all
Sometimes words are not needed, particularly if you don’t know what to say. It’s better to give a hug, squeeze someone’s hand or simply listen

Support Parkinson’s Research Funding

Support Parkinson’s Research Funding.  In the coming days and weeks Congress will be determining funding levels for various agencies involved with #Parkinsons research.  Please take action to push for at least $36 billion for the National Institutes of Health, and $5 million for the Centers for Disease control so it can begin work implementing the National Neurological Conditions Surveillance System.



Albany Medical College recruiting patients for clinical trial of Milotinib

A promising therapy that may slow or stop Parkinson’s progression is moving forward. The Michael J. Fox Foundation (MJFF) announced plans to collaborate to assess the clinical use and development of cancer drug nilotinib. Among the partners’ goals: planning a double-blind, placebo-controlled clinical trial of nilotinib.

What has the research told us about nilotinib?
Two studies in pre-clinical PD models from 2013 and 2014 showed protective effects of nilotinib. And several other studies in pre-clinical PD models have shown protective effects of inhibiting c-Abl. This provided impetus for testing nilotinib in patients.

The trial results from a small, open-label (all knew they were getting the drug) trial of nilotinib in people with advanced Parkinson’s — included impact on spinal fluid measures of alpha-synuclein and imaging scans of dopamine function.

The drug was well tolerated, and participants reported improvements in motor skills and cognitive function. These are encouraging results; unfortunately, researchers know that the likelihood of placebo effect is high in any open-label Parkinson’s clinical study. Nonetheless, MJFF deems these findings supportive of continued, rigorous research in this area.

Should patients start taking nilotinib?
In short, no. We just don’t know enough yet.


To find out more about eligibility for the study, contact :

Albany Medical College
Albany, New York, United States, 12208
Contact: Darryl Collins    518-262-6651    collind@mail.amc.edu
Contact: Sharon Evans    518-262-6682    evanss@mail.amc.edu
Principal Investigator: Eric Molho, MD

Read more about the drug :








How Does Dopamine Affect Parkinson’s Disease?

This educational video from Parkinson’s UK explains more about Parkinson’s disease. The film shares that the disease develops in the substantia nigra part of the brain when the cells begin to die. These cells produce dopamine and the loss of dopamine in the brain leads to issues with movement.

As the disease progresses and the brain has less and less dopamine, the symptoms of the disease become more apparent and the patient develops tremors, difficulty walking, and other issues with movement. Researchers are working on ways to stop or slow down the loss of these dopamine-producing cells so that Parkinson’s disease may be treated and ultimately cured.

first published in https://parkinsonsnewstoday.com/2017/10/16/how-dopamine-affect-parkinsons/

7 Ways to Self-Manage Your Parkinson’s Disease

1. Educate Yourself
The more you know about Parkinson’s disease, the more you can be prepared for what it has to throw at you.

2. Healthy Lifestyle
Try to stay as active as possible — walking, swimming and practicing yoga are great low-intensity exercises that you can take at your own pace.

3. Hobbies and Socializing
If you have hobbies then try to continue with them, or find new pastimes that will help take your mind off Parkinson’s disease and give you something else to focus on.

4. Complementary Therapies
Meditation, acupuncture, use of essential oils and reflexology are among the many therapies you may find useful.

5. Mobility Aids
Everyone is different, and people will find different aids more beneficial than others.

6. Keeping Your Independence
If you can dress and bathe yourself, prepare simple meals and do household tasks then continue to do so, even if it takes you twice as long.

7. Join a Support Group
See if there is a local support group in your area for people with Parkinson’s disease. If there isn’t, find an online group. You’ll be able to share your experiences with people who really understand what you’re going through and get tips and information that will help you in your everyday life.

Read more:



Researchers discover neuronal targets that restore movement in Parkinson’s disease model

Researchers working in the lab of Carnegie Mellon University neuroscientist Aryn Gittis, have identified two groups of neurons that can be turned on and off to alleviate the movement-related symptoms of Parkinson’s disease. The activation of these cells in the basal ganglia relieves symptoms for much longer than current therapies, like deep brain stimulation and pharmaceuticals.

Read more


New Parkinson’s treatment described as potential ‘game-changer’

This potential breakthrough stems from a recent clinical trial led by neurologist and professor Thomas Foltynie in the United Kingdom. In the course of a 48-week period, Parkinson’s patients who received the drug exenatide retained more motor function than patients who received a placebo.
Read more http://www.mlive.com/news/grand-rapids/index.ssf/2017/09/parkinsons_specialists_gather.html


Exenatide: One step closer to joblessness!


Immune system may mount an attack in Parkinson’s disease

A new study suggests that T cells, which help the body’s immune system recognize friend from foe, may play an important role in Parkinson’s disease (PD). The study, published in the journal Nature, was supported by the National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health.

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Parkinson’s symptoms reversed in monkeys by groundbreaking new treatment – Researchers hope to move to clinical trials in 2018

Scientists have successfully used “reprogrammed” stem cells to restore functioning brain cells in monkeys, raising hopes the technique could be used in future to help patients with Parkinson’s disease.

Read more

Trial raises Parkinson’s therapy hope

BBC News

Scientists have restored nerve cells destroyed by a condition similar to Parkinson’s disease, in monkeys. The Japanese team hope their work could lead to stem cell trials in human patients before the end of 2018.





U of Rochester offering PD care via telemedicine

DCNY is a research team sponsored by the University of Rochester and opened to all New Yorkers who have Parkinson’s Disease. PDCNY is offering 250 Parkies who qualify FREE PD care for the next 2 years. And, more importantly, the care will be delivered by a team of specialist, headed by a Movement Disorder Specialist.  A MDS is a Neurologist who took extra training to treat PD.  For the most part the care will be given in the patient’s home via the internet using Telemedicine.

See a flyer about the research here —> PDCNY Flyer Sep 1

Learn more and sign up at PDCNY.org. Or call 844-777-3269


Studies have shown that telemedicine care is just as good as care received at an academic medical center; in fact, many people have reported preferring telemedicine because they feel more at ease in the comfort of their own home.

Telemedicine is especially valuable to patients in remote, rural and underserved areas because it gives them the ability to consult specialists they’d otherwise have to travel hours to see.



Using web-based video conferencing to provide specialty care at home is feasible, provides patients value, and may offer similar clinical benefit to in-person care. Larger studies are needed to determine whether the clinical benefits are indeed comparable to in-person care and whether the results observed are generalizable.


16 Tips to Increase Your Mobility Confidence While Living With Parkinson’s Disease

Parkinson’s disease affects movement, coordination and mobility and as the disease progresses, it can often begin to ebb away at the confidence a person living with the condition has in their own abilities. However, all is not lost and there are ways that you can improve your confidence in movement. Although it may seem counterintuitive, according to the National Parkinson Foundation, in order to increase your mobility confidence you need to move more.

Here are a few of their tips to help you move more:

  • Try to increase the amount of physical activity you do each day. Tackling chores around the house and garden is a good way to get moving.
  • Attend a local exercise class — yoga, swimming, water aerobics, abd boxing classes are all excellent choices.
  • Try to move around more — get up and walk around the house every hour or get up while the commercials are on while watching TV.
  • Dance. Play some of your favorite music and dance around the house.

If mobility and balance become an issue, mobility aids such as canes and walkers will help you to get around and get some of your independence back.

  • Laser canes and walkers can help those who suffer from gait freezing. The laser can help guide where to place your feet.
  • Straight canes with a rubber tip are best for stability.
  • Ensure the cane is at the correct height for maximum support and has a hand grip that’s comfortable.
  • Tripod or quad canes are more difficult for people living with Parkinson’s disease to use than single tip canes.
  • Walkers with four or more wheels will offer better stability and allow for easier turning.
  • Other features such as swivel casters, larger wheels and hand brakes will offer the best stability.
  • Walkers with added baskets or seats can prove very useful for resting and carrying items.
  • Walkers which need to be lifted into place do not offer stability for anyone with Parkinson’s disease and can make them lose balance.

If your Parkinson’s disease is more advanced and you require a wheelchair, there are some considerations you should take into account:

  • Speak with your occupational therapist or physical therapist about the best type of wheelchair to suit your needs
  • Check with your insurance company to see if a wheelchair will be covered.
  • Opt for a lighter wheelchair that will be easier to move around.
  • A wheelchair with a reclining back will allow you to rest easier and help if you have elevated blood pressure

read more https://parkinsonsnewstoday.com/2017/08/30/tips-increase-mobility-confidence-living-parkinsons-disease/

Algorithm Accurately Predicts Cognitive Decline in Parkinson’s Disease

Prediction of cognitive decline within 10 years of onset of Parkinson’s disease (PD) is now possible through an analytic model developed by a multinational collaborative of investigators. The algorithm provides a set of clinical-genetic scores that accurately predict future dementia or disabling cognitive impairment, according to results of a large-scale longitudinal analysis published in the Lancet Neurology.

Read more http://www.neurologyadvisor.com/movement-disorders/predicting-cognitive-decline-in-parkinsons-disease-with-algorithm/article/682935/

New App Helps People Living With Parkinson’s Manage the Disease

The National Parkinsons Foundation has created a new smartphone app called Parkinson’s Central that’s now available for people living with the condition and their caregivers to help with all aspects of managing Parkinson’s disease

According to the National Parkinsons Foundation, the free-to-download app has many features that people living with Parkinsons’s disease can use, including how to get more out of their doctors’ appointments; a tool to find local resources; a schedule for taking medications; tips for living well with the disease; information about surgery, medication and alternative treatments; insurance and financial information; and content aimed at caregivers.
The app is available for both Apple and Android devices from the Apple App store or Google Play.

Read more

Immune response linked to Parkinson’s disease

Researchers found that immune cells recognize and react to alpha-synuclein, the protein that builds up in the brains of people with Parkinson’s disease.These findings suggest that the immune system may play a role in the start or progression of Parkinson’s disease. 

Read more 

Two New Drugs Coming As Prevail Gets Started in NY

The Silverstein Foundation, a nonprofit organization formed by OrbiMed partner Jonathan Silverstein, announced the formation of a new startup in New York called Prevail Therapeutics. Headed by Columbia University neurology professor and Parkinson’s researcher Asa Abeliovich, the startup has launched to press forward with a gene therapy, and possibly other approaches, for a genetically-defined subset of people with the condition.Prevail has a deal in place with RegenXBio (NASDAQ: RGNX) to use a tool used in gene therapy that shuttles genetic instructions into the body to fix a disease-related malfunction. Prevail can now use the delivery tool, a type of engineered virus, to develop a gene therapy for Parkinson’s or other neurodegenerative diseases. The goal is to introduce a working copy of a gene that is mutated in people with a rare genetic form of Parkinson’s. The hope is that the new gene would alter the progression of the disease.
The startup is the first industry investment for the Silverstein Foundation, which formed earlier this year to fuel Parkinson’s research. CNBC reported Wednesday morning that Silverstein, a longtime life sciences investor at OrbiMed, started the foundation after being diagnosed with an aggressive form of Parkinson’s. According to its website, the foundation has given grants to the Michael J. Fox Foundation, the Parkinson’s Institute and Clinical Center in San Francisco, and Columbia University.
Abeliovich, whose research at Columbia has been focused on the genetics underlying Parkinson’s, worked with OrbiMed when he co-founded Alector, an OrbiMed-backed neurological drug developer in San Francisco (he’s currently that startup’s chief innovation officer). The OrbiMed connection led Abeliovich to join the Silverstein Foundation’s scientific advisory board, and eventually to discussions about forming new companies to combat the disease. The first is Prevail.
“He’s put together a real ‘SEAL team’ to try to figure out how we can advance things” against Parkinson’s, Abeliovich says of Silverstein.

For Parkinson’s, Two New Drugs Coming As Prevail Gets Started in NY

Preventing falls and getting up safely from a fall

Most people with Parkinson’s disease fall and many have to live with recurrent falls.Research shows that the fear of falling increases the chance of falling greatly. Assessing the fear of falling by creating an intervention plan can help reduce recurrent falls. In this video, Chad Moir owner of Dopafit, shares some tips on gaining better balance. 

Read more http://mailchi.mp/925db4cce19f/balance-exercises-and-fall-prevention

List of organizations that can be trusted for good information

  • National Parkinson’s Foundation helps patients actively enjoy life through expert care and treatment research.
  • American Parkinson’s Disease Association provides support, education, and research to help you live a fuller life.
  •  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
  •  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.
  • 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.
  • EVERY VICTORY COUNTS® Davis Phinney Foundation Essential Information and Inspiration for a Lifetime of Wellness with Parkinson’s Disease. A must read. http://www.cdparkinsons.org/wp-content/uploads/2016/08/DPF-EVC_2014-2.pdf
  • 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.
  • 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.
  • 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.
  • 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
  • Parkinson’s Action Network, Advocacy group,

Medical & Rehabiliation Care, Assistive Technology

General Care

How Vision Is Affected by Parkinson’s 

Many people living with Parkinson’s disease experience vision and eye problems. Some of the issues are a direct symptom of the disease, whereas others may be a side effect of medication taken to help treat Parkinson’s.
According to the National Parkinson’s Foundation, there are some common vision problems associated with Parkinson’s disease. Double vision can occur when the eyes begin to have trouble working in unison, which is referred to as convergence insufficiency. Some Parkinson’s disease medications can also produce the same effect. The problem can be rectified with either a change of medication or with special eyeglasses containing prisms. Many medications can also cause blurred vision for Parkinson’s patients and many will also suffer from dry eyes and decreased blinking.

Less commonly, people living with Parkinson’s may also experience involuntary closing of the eyes. This can happen for a number of reasons, many of which are not related to Parkinson’s at all, including nerve or muscle damage around the eye, inflammation of the eye, or damage to the eye. Parkinson’s patients are advised to see an ophthalmologist to determine the cause of the problem. There are medications that can help with the issue and if they don’t work, patients are advised to try botox. 

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Benefits of CBD on Neurological and Autoimmune Disorders

With a growing number of states legalizing cannabis, hemp is gaining popularity for its many benefits–and for good reason. Hemp is basically a cannabis plant but is grown to have almost none of the properties of a standard cannabis plant that get you “high”. Both cannabis and hemp contain cannabidiol or CBD, and studies are showing how CBD has several medicinal benefits. Unlike regular marijuana, medicinal hemp is grown to have under 0.03% THC and in most cases, there is no chance of getting high from its extracts. Marijuana can have up to 20% THC and when concentrated its extracts can have up to 99% THC.

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A swell of research is showing how dance can benefit Parkinson’s sufferers

To dance is human; people of all ages and levels of motor ability express movements in response to music.

Professional dancers exert a great deal of creativity and energy toward developing their skills and different styles of dance.

How dancers move in beautiful and sometimes unexpected ways can delight, and the synchrony between dancers moving together can be entrancing.

To us as a neuroscientist and biomechanist (Lena), and a rehabilitation scientist and dancer (Madeleine), understanding the complexities of motor skill in a ballet move, or the physical language of coordination in partner dance, is an inspiring and daunting challenge.

Read more: http://www.dailymail.co.uk/health/article-4686924/TANGO-stave-effects-Parkinson-s-disease.html

First-ever Definitive Test for Parkinson’s Developed in Israel

The good news about Parkinson’s is that a scientist in Jerusalem has developed a test that detects the degenerative brain disease both definitively and earlier, hopefully improving the prognosis for patients.
The bad news is that the Mayo Clinic has noticed an association between Parkinson’s and melanoma, a deadly form of skin cancer. They can’t explain it, but a significant association has been found.

read more: http://www.haaretz.com/science-and-health/1.799726

Clinical study for Adipose Stem Cells to Treat Parkinson’s Disease

The purpose of this study is to determine the impact that treatment with a cellular concentrate derived from an individual’s own fat, known as the stromal vascular fraction (SVF), has on the quality of life of people with Parkinson’s disease (PD). SVF contains components with “regenerative” properties, including stem cells that may be capable of ameliorating specific disease conditions. This study is designed to evaluate quality of life changes in individuals with PD for up to 12 months following SVF treatment.


You may be able to participate

Read more here

Study will lead to human trial of cancer drug to prevent Parkinson’s 

 Tiny doses of a drug used for leukemia has halted toxic brain proteins linked to Parkinson’s disease in a new Georgetown University Medical Center study using animal models.

The senior investigator of the study is planning a clinical trial in humans to study the effects of the drug, called nilotinib.
The study, recently published online in Human Molecular Genetics, provides a novel strategy in treating neurodegenerative diseases that feature abnormal buildup of such proteins involved in Parkinson’s, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), frontotemporal dementia, Huntington disease and Lewy body dementia, among others. 

“This drug, in very low doses, turns on the garbage disposal machinery inside neurons to clear toxic proteins from the cell,” says the study’s senior investigator, neuroscientist Charbel E-H Moussa. “By clearing intracellular proteins, the drug prevents their accumulation in pathological inclusions called Lewy bodies and/or tangles, and also prevents protein secretion into the extracellular space between neurons, so proteins do not form toxic clumps or plaques in the brain.”

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Using Technology to Help Manage Parkinson’s


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  • Upstate Medical study
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  • refreshment volunteers for September, October, November
  • Holiday party – date? time? location?
  • Meetings in January, February?

Topic outline


Where are my glasses?


ThinOptics – http://www.thinoptics.com Glasses + Universal Pod – Small enough to fit in your wallet, purse, pocket or even stick it to your phone!

Find missing items

You could have sworn you left your keys right there! When you misplace a crucial item that’s part of your daily life—like a set of keys—it’s often when you’re in a hurry. Combined with your iPhone, Tile can help you find your misplaced items, and potentially save a perfectly good day from turning sour. It’s one of the better lost-and-found device we’ve tested so far, but it does have some some drawbacks. You’ll need to replace your Tile every year due to its non-removable battery,

Tile https://www.thetileapp.com/en-us/how-it-works


Remember to take your medications

Many health conditions require patients take medications on daily basis. Missing a dose or taking more pills than prescribed could have detrimental effect on patient’s health, often putting them at risk.

Staying on top of your medications and taking them exactly as prescribed is crucial for their efficiency. But keeping the track of medications you need to take could be bothersome, especially if there’s more than one drug involved.

This is the reason why many people use different reminders that help them remember not only when to take it, but also when they need refill, or to track their drug use. Mobile apps for both Android and iPhone made this tracking a lot easier.

Round Health for iPhone




How to use our website


Home Page, Top menu, right sidebar, post categories, search, footer links

Subscribe to out mailing list – mail from our group will have a footer that you can use to control your subscription
unsubscribe from this list    update subscription preferences


Be careful about what you read and buy on-line

Some products and ideas seem like they may make daily living easier, but be careful what you believe. Anyone (including me) can make a website that looks official.


How to recognize a scam

  • Money is Involved
  • If It Sounds Too Good to Be True…
  • Urgent! ACT NOW! Don’t Wait!
  • The Power of Fear
  • We Need Some of Your Personal Information


Here is a list of organizations that can be trusted for good information

http://www.cdparkinsons.org/organizations-that-can-be-trusted-for-good-information-about-pd/ )

  • National Parkinson’s Foundation helps patients actively enjoy life through expert care and treatment research.
  • American Parkinson’s Disease Association provides support, education, and research to help you live a fuller life.
  •  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
  •  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.
  • 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.
  • EVERY VICTORY COUNTS® Davis Phinney Foundation Essential Information and Inspiration for a Lifetime of Wellness with Parkinson’s Disease. A must read. http://www.cdparkinsons.org/wp-content/uploads/2016/08/DPF-EVC_2014-2.pdf
  • 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.
  • 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.
  • 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.
  • 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

Medical & Rehabiliation Care, Assistive Technology

General Care


About AmazonSmile

AmazonSmile is a website operated by Amazon with the same products, prices, and shopping features as Amazon.com. The difference is that when you shop on AmazonSmile, the AmazonSmile Foundation will donate 0.5% of the purchase price of eligible products to the charitable organization of your choice.

Every item available for purchase on www.amazon.com is also available on AmazonSmile (smile.amazon.com) at the same price. You will see eligible products marked “Eligible for AmazonSmile donation” on their product detail pages.

For more information about the AmazonSmile program, go to http://smile.amazon.com/about.


A personal health journal should keep track of your overall health.

Some of the things you should include are:

  • Illness or injury
  • Hospitalizations
  • Surgeries
  • Allergies
  • “>Medicines, vitamins or supplements that you are taking and how often you take them
  • Diseases or illness in your immediate family
  • Emergency contacts
  • Doctor names, addresses, phone
  • Insurance information
  • Medical professional visit log

When you fill in your health history, be sure to include the dates. For example, if you were hospitalized, write down the date that you were admitted and the date you were discharged. You can also include notes on how you were feeling.

Google Keep – https://keep.google.com

Google Docs – https://docs.google.com

A blank journal on paper or https://www.amazon.com/Patients-Medical-Journal-Personal-Treatment/dp/1634502299


on-line support groups

My Pakinson’s Team https://www.myparkinsonsteam.com/

Patients like me https://www.patientslikeme.com/


Can’t get out to exercise?

Try following a dance class from home


or try an on-line exercise video



Products that makes getting dressed easier

The Wright Stuff offers a range of  products that makes getting dressed easier for anyone who has lost the use of one of their hands. The company has Dressing Sticks, one-handed belt, sock aids, they even one-handed nail clippers for people.


The Aware in Care kit


The Aware in Care kit can be requested at www.awareincare.org or by calling 1-800-4PD-INFO (473-4636).The kit includes:

Hospital Action Plan
Read about how to prepare for your next hospital visit—whether it is planned or an emergency.

Parkinson’s Disease ID Bracelet
Wear your bracelet at all times in case you are in an emergency situation and cannot communicate.

Medical Alert Card
Fill in your card with emergency contact information and place in your wallet.

Medication Form
Complete this form and keep copies in your kit for use at the hospital.

Parkinson’s Disease Fact Sheet
Share the facts about Parkinson’s with hospital staff and ask that a copy be placed in your chart.

I Have Parkinson’s Reminder Slips
Share vital information about Parkinson’s disease with every member of your care team in the hospital.

Use this magnet to display a copy of your Medication Form in your hospital.

Get the Kit. Know the Facts. Be Aware in Care.®


Facebook group for us


Participate in a research study 

Parkinson’s Disease Study

The purpose of our current research is to identify molecules in the saliva, called microRNAs, which can serve as biomarkers for Parkinson’s Disease. We are hoping to identify specific microRNAs that are present in higher levels in the saliva of Parkinson’s patients compared to controls. By doing this, we may be able to diagnose this disease at an earlier stage and also improve our understanding of the disease.

Our study involves a single appointment, which lasts approximately 1 hour. During the appointment, we ask for a saliva sample and a medical history. We also perform a complete assessment with the Unified Parkinson’s Disease Rating Scale and detailed functional assessments to examine balance and motor function as well as cognitive and sensory function.  Subjects who participate in the study receive immediate feedback about their level of performance in the various test measures.  Additionally, all subjects receive $25 compensation.

More information on our study can be found at http://upstate.edu/parkinsonstudy.

We are also looking for healthy controls that match the ages of our Parkinson’s subjects. Often, the spouses of the Parkinson’s patients serve as great controls, and the appointments can be completed together.

About the Study
“Molecular and functional biomarkers of Parkinson’s disease” is being performed by Drs. Frank Middleton, Dragos Mihaila and Christopher Neville in the departments of Neuroscience & Physiology, Neurology, and Physical Medicine. The study is funded by Motion Intelligence, Inc. The purpose of this study is to help identify molecules in the saliva, called microRNAs, which can serve as biomarkers for Parkinson’s disease. By finding microRNA markers with higher levels in Parkinson’s patients, we may be able to diagnose this disease at an earlier stage and also improve our understanding of the disease.

Can I be in the study?
Any adult with a recent diagnosis of Parkinson’s disease will likely meet the criteria to participate in this study. Also, the healthy adults without the diagnosis of Parkinson’s can participate as controls.

What is involved in the study?
A doctor will ask each participant to perform a brief series of neurological tests, in addition to cognitive and balance tests. A small amount of saliva will then be collected in order to measure microRNA.

Will this study help me?
This study will not directly benefit you.  But, the results of this study may help us to understand some of the causes of Parkinson’s disease and help us to improve our diagnosis and services to those with Parkinson’s disease in the future.

What does it cost to participate in the study?
There are no costs to you for any of the tests involved in this study.  For your participation you will be reimbursed a small amount ($25).

Frequently Asked Questions
Thank you for being willing to consider participating in this research.  We are here to answer any questions you may have about the procedure as well as how your sample will be used.  If you have any questions that are not answered here, call 315-464-7729 or fill out the sign up form and we will contact you.


Researchers Test Noninvasive Form of Deep Brain Stimulation on Mice

Researchers developed a method for noninvasive deep brain stimulation (DBS) that showed promise as a potential way to stimulate neurons without requiring surgery, a new study says.

The method works by inducing electrical currents with different high frequencies. When these currents meet deep in the brain, they generate enough stimulation to activate neuronal activity.

The study, “Noninvasive Deep Brain Stimulation via Temporally Interfering Electric Fields,” was published in the journal Cell.
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Is Parkinson’s an Autoimmune Disease?

The cause of neuronal death in Parkinson’s disease is still unknown, but a new study proposes that neurons may be mistaken for foreign invaders and killed by the person’s own immune system, similar to the way autoimmune diseases like type I diabetes, celiac disease, and multiple sclerosis attack the body’s cells. The study was published April 16, 2014, in Nature Communications.

“This is a new, and likely controversial, idea in Parkinson’s disease; but if true, it could lead to new ways to prevent neuronal death in Parkinson’s that resemble treatments for autoimmune diseases,” said the study’s senior author, David Sulzer, PhD, professor of neurobiology in the departments of psychiatry, neurology, and pharmacology at Columbia University College of Physicians & Surgeons.

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