Diagnosis, Treatment and News


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.

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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,
Research
Carepartners

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. 

Read more

http://www.pdf.org/vision_parkinson

http://www.parkinson.org/Understanding-Parkinsons/Non-Motor-Symptoms/vision

https://www.apdaparkinson.org/what-is-parkinsons/symptoms/eye-vision-issues/


Participate in upstate medical (Syracuse) study

We are currently recruiting participants for our study. We could try to coordinate a visit to Albany to conduct our study visits there, rather than have people drive out to Syracuse. We could plan a day (or a few!) to schedule interested participants and carry out the visits in a conference center that we can reserve. We could also speak briefly to support group members. 
Here is more information about our 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.

 

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.

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. 


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.

Read more 


July 26, 2017 -Online Lecture to Address Sexuality in People with Parkinson’s and Other Chronic Ills

Tuppy Owens, a sex therapist who works and advocates on behalf of the disabled, will hold an online lecture on July 26 focusing on sexuality in the context of chronic conditions, including Parkinson’s disease, and how patients and caregivers can best enjoy this aspect of their lives.

Read more

https://parkinsonsnewstoday.com/2017/07/18/online-lecture-to-address-sexuality-intimacy-in-parkinsons-patients/


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.”

Read more


Using Technology to Help Manage Parkinson’s

Announcements

  • sign in sheet
  • subscribe to our mailing  list
  • Upstate Medical study
  • future meetings
  • refreshment volunteers for September, October, November
  • Holiday party – date? time? location?
  • Meetings in January, February?

Topic outline

 


Where are my glasses?

https://smile.amazon.com/s/ref=nb_sb_noss_1?url=search-alias%3Daps&field-keywords=glasses+strap

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

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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

https://roundhealth.co/app/

https://itunes.apple.com/us/app/round-health-medicine-reminder-and-pill-tracker/id1059591124?mt=8

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How to use our website

http://www.cdparkinsons.org

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

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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.

https://aarptek.aarp.org/online-safety/

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

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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
Research
Carepartners

Medical & Rehabiliation Care, Assistive Technology

General Care

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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.

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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

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on-line support groups

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

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

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Can’t get out to exercise?

Try following a dance class from home

http://capture.nbs-enb.ca/dwp/page/Home.aspx

or try an on-line exercise video

http://www.cdparkinsons.org/free-on-line-exercise-videos/

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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.

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The Aware in Care kit

http://www.parkinson.org/find-help/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.

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

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

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Facebook group for us
https://www.facebook.com/groups/1908330349452040

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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.
Read more

https://parkinsonsnewstoday.com/2017/06/23/nonsurgical-deep-brain-stimulation-technique-parkinsons/


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.

Read more


National HelpLine

Have you or a loved one been diagnosed with Parkinson’s disease? Are you adjusting to life several years into PD? Do you need help finding a physician or managing your medications? Ask the experts at PDF your questions.

Call (800) 457-6676 or email info@pdf.org

Our toll-free HelpLine/email service – staffed by a team of information specialists – can:
  • Answer your questions about Parkinson’s disease, symptoms, treatments, complementary and alternative therapies and the latest scientific studies reported by the media.
  • Help you to find support groups in your area and Parkinson’s specialists (movement disorder specialists) in your community, where available.
  • Identify financial, legal and other resources to help you live well with Parkinson’s.
  • Provide access to an interpreter for non-English speaking callers.

Each specialist provides a sympathetic voice and ear, with an understanding of the challenges you may be going through. If we can’t answer a question, we’ll find someone who can.  While this does not replace the relationship you have with your physician, we can help you prepare for your visits or provide advice when you cannot reach your team of healthcare professionals.

 

Begin finding answers today by:

  • Calling our toll-free helpline – (800) 457-6676 –  to speak directly with an information specialist.

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On-line resources

FOUNDATIONS
Parkinson’s
Research
Carepartners

Medical & Rehabiliation Care, Assistive Technology

General Care


Stem Cells and Parkinson’s

From https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?stem-cells

What are stem cells?

Stem cells are a renewable source of tissue that can be coaxed to become different cell types of the body. The best-known examples are the embryonic stem (ES) cells found within an early-stage embryo. These cells can generate all the major cell types of the body (they are “pluripotent”). Stem cells have also been isolated from various other tissues, including bone marrow, muscle, heart, gut and even the brain. These “adult” stem cells help with maintenance and repair by becoming specialized cells types of the tissue or organ where they originate. For example, special stem cells in the bone marrow give rise to all the various types of blood cells (similar blood cell-forming stem cells have also been isolated from umbilical cord blood).

read more


Stem cell technique morphs brain cells to cure Parkinson’s in mice

Are Stem Cell-Based Therapies for Parkinson’s Disease Ready … – NCBI

Brain Cell Transplants Are Being Tested Once Again For Parkinson’s – NPR


Ride with Larry – Medical Marijuana video – a must watch

Larry doesn’t just live with Parkinson’s. He rises above it. After a 20-year battle with Parkinson’s, Larry has exhausted every conventional method of treatment, every drug, and even brain surgery. Refusing to give up, he seeks alternatives, discovering the untapped benefits of exercise and medical marijuana. Now Larry will attempt the unthinkable, a 300-mile bike ride across South Dakota, a journey of hope for anyone facing a life altering illness. In this intimate portrait of courage, love, and community, Larry Smith refuses to give up, proving that if you love life, you’ll fight for it.

 

Video showing the effect of medical marijuana on Larry


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


‘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


‘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


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.


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.”


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.


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


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


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.


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 


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/


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


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


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


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.

 


LSVT Loud and LSVT Big – voice and movement treatments

Recent advances in neuroscience have suggested that exercise-based behavioral treatments may improve function and possibly slow progression of motor symptoms in individuals with Parkinson disease (PD). The LSVT (Lee Silverman Voice Treatment) Programs for individuals with PD have been developed and researched over the past 20 years beginning with a focus on the speech motor system (LSVT LOUD) and more recently have been extended to address limb motor systems (LSVT BIG).

(more…)


Breaking News: New Dyskinesia Drug Submitted to FDA

A new drug for levodopa-induced dyskinesia — involuntary, uncontrolled movements that can develop with long-term use of levodopa combined with a prolonged course of Parkinson’s disease (PD) — is one step closer to potentially reaching market.

Read more


World Parkinson’s Congress 2016

The triennial World Parkinson Congresses provide an international forum for dialogue on the latest scientific discoveries, medical practices, and caregiver initiatives related to Parkinson’s disease.

(more…)


Educational Brochures

Image result for brochure parkinson's sampleInformation and research about Parkinson’s Disease is changing quickly.  Depending on information that is more than a few years old is not advised.
We are not endorsing or guaranteeing the accuracy of any of the supplied links.  We have not created, reviewed (or even read) all of the educational material referenced.  You may find outdated, false of contradictory information.
You may want to find the material(s) that would be useful to you and/or your patients and ask a doctor familiar with PD to review them before handing them out.

From the Michael J. Fox Foundation:

Educational Web Pages at https://www.michaeljfox.org/understanding-parkinsons/index.html?navid=understanding-pd


From Parkinson’s Disease Foundatation

PDF offers a variety of educational publications and programs for people with Parkinson’s, their caregivers and families and allied health professionals.  These materials can help answer questions about Parkinson’s disease symptoms, medications, medical care, exercise and nutrition, among other issues.

You can download all materials by using the links below and to the left.  You can also order most of these materials online free of charge, for yourself or, in bulk for your practice, hospital or support group.

Brochures and Booklets
These informational brochures help you understand Parkinson’s and find resources in the community. Order your copies online today or download each individually.

Videos/DVDs
PDF offers one free educational DVD/video, Diagnosis Parkinson’s Disease: You Are Not AlonePlease click here to read more and order this program online.

Fact Sheets
PDF’s fact sheets discuss your concerns about nutrition, diet, exercise and more, providing tips on how to improve daily life with Parkinson’s. These are written by physicians and people living with or affected by Parkinson’s. You can order print copies of the fact sheets or download those that interest you from our selection of 35+ fact sheets.

Online Seminars

PDF reserves a limited supply of DVDs of our previous series of PD ExpertBriefings for those unable to watch via computer. If you would like to order this set to watch at home or with your support group members, please read more and download our order form.

http://www.pdf.org/brochureshttp://www.pdf.org/newsletters_pubs


From APDA

http://www.apdaparkinson.org/resources-support/download-publications/


From American Academy of Neurology

Parkinson’s disease (PD) is a movement disorder. In people with PD, a vital chemical in the brain called dopamine is gradually reduced. This brings on symptoms of tremor, slowness in movement, stiff limbs, and walking or balance problems.


Ohio State University Wexner Medical Center

https://patienteducation.osumc.edu/pages/patienteducation/atoztopicdetail.aspx?t=Parkinson%27s%20Disease


On-line resources

These Parkinson’s disease (PD) resources will help you find more information and connect with others living with the condition. Many of these sites will direct you to the latest Parkinson’s disease news and research, as well as opportunities to get involved with local chapters and organizations.

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Google News for Parkinson’s

Did you know you can tell Google to send an e-mail to yourself with search results of your choice?

I get one a week with the results of finding the words “Parkinson’s Disease” in the news

How to Create an alert

  1. Visit Google Alerts.
  2. In the “Create an alert about” box, enter the words you want to get email notifications for.
  3. Click Show options to say how often you get alerts, what types of results you want to get, and more.
  4. Click Create Alert.
  5. Once your alert is set up, you’ll start getting emails any time we find new search results for your keywords.

Google News for Parkinson’s