Diagnosis, Treatment and News


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?

https://foxinsight.michaeljfox.org/

 


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

https://www.superbetter.com/


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.

http://parkinson.org/Living-with-Parkinsons/Resources-and-Support/Patient-Safety-Kit

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

from

https://parkinsonsnewstoday.com/2017/10/25/things-say-someone-parkinsons-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.

 

http://advocate.michaeljfox.org/mjff/app/write-a-letter?0&engagementId=392613


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
Recruiting
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 :

https://clinicaltrials.gov/ct2/show/NCT03205488

https://scienceofparkinsons.com/tag/nilo-pd/

https://www.michaeljfox.org/foundation/grant-detail.php?grant_id=1562

 

 

 

 


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:

https://parkinsonsnewstoday.com/2017/10/11/ways-self-manage-parkinsons-disease/

 


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

https://medicalxpress.com/news/2017-05-neuronal-movement-parkinson-disease.html


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!

http://journals.lww.com/neurotodayonline/blog/breakingnews/pages/post.aspx?PostID=642


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.

Read More


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

https://www.scientificamerican.com/article/human-stem-cells-fight-parkinson-rsquo-s-disease-in-monkeys/
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.
http://www.bbc.com/news/health-41099870

http://www.independent.co.uk/news/science/parkinsons-disease-breakthrough-reverses-symptoms-monkeys-stem-cells-japan-kyoto-a7920816.html

 

 

 


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.

http://www.parkinson.org/expert-care-research/telemedicine-virtual-care

 

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.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3791511/


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,
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/


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 


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
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  • 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).

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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.

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