Diagnosis, Treatment and News


Where are we with surgery for PD?

WPC BLOG 
Elena Moro, MD, PhD is a Professor of Neurology at Grenoble Alpes University in Grenoble, France. Elena Moro was a speaker at the 3rd World Parkinson Congress in Montreal, and she is a current member of the Program Committee for the 5th World Parkinson Congress in Kyoto, Japan.

WHERE ARE WE WITH SURGERY FOR PD?
I have had the privilege to be involved in surgery to treat Parkinson’s disease (PD) for over 20 years. I still remember the first patients with severe advanced PD who had deep brain stimulation (DBS) surgery in the early 90’s. After a lot of suffering, these patients could have a decent life back: no more violent dyskinesia or very painful and disabling dystonia, no more horrible tremor and motor fluctuations. It really was like a miracle! I also still remember the hours spent in the operating room to test treatment efficacy and side-effects…. A great team effort, but so rewarding for everybody!

Read more at https://www.worldpdcongress.org/home/2018/11/27/where-are-we-with-surgery-for-pd


Parkinson’s Disease Vaccine Shows Preclinical Promise

from https://labiotech.eu/medical/united-neuroscience-parkinsons-vaccine/
The biotech company United Neuroscience has developed a candidate Parkinson’s disease vaccine that targets a protein linked to the condition.

The vaccine teaches the immune system to attack aggregations of alpha-synuclein. When this protein aggregates in neurons, it can lead to several neurodegenerative disorders, including Parkinson’s.

In United Neuroscience’s preclinical study, the vaccine was able to prevent the protein from aggregating in cell cultures, in mice and in post-mortem brain tissue of patients with Parkinson’s, Lewy body dementia and multiple system atrophy.

The company, headquartered in Dublin, has not specified when the vaccine might go to the clinic. As alpha-synuclein is involved in other diseases such as Lewy body dementia and multiple system atrophy, this vaccine could target several diseases in the clinic.

United Neuroscience has used the same platform to make a vaccine against Alzheimer’s disease, which is currently being tested in Phase II, with results expected at the end of this year.

There are companies that have Parkinson’s immunotherapies in the clinic already. Earlier this year, Affiris, an Austrian biotech, reported good safety results for its own alpha-synuclein vaccine in 24 patients in Phase I. Another Irish company, Prothena, in partnership with Roche, is running a Phase II trial with a different approach: injecting alpha-synuclein antibodies directly into patients.


Blocking Inflammasome-induced Neuroinflammation in Parkinson’s Disease with a Potent, Orally Available Small Molecule

Parkinson’s Disease Drug That Cools “Brains on Fire” Could Enter Human Trials in 2020

Study Rationale:
Our brains are full of immune cells called microglia, which fight infections and clear the brain of toxic products. In Parkinson’s disease, these cells are constantly active, leading to brain inflammation that damages neurons (nerve cells). Evidence of this inflammation is found in the blood and brains of Parkinson’s patients. To fight this damage, we developed small molecules (suitable to be be taken as a pill) that get into the brain, where they stopped brain inflammation in pre-clinical models of the disease. We hope this treatment could halt or even reverse Parkinson’s progression.

Hypothesis:
There are many different possible causes of Parkinson’s involving age, genetics, diets and lifestyle. Whatever the cause, we think our immune system’s response to produce inflammation in the brain is a key factor that drives Parkinson’s disease, and small molecule drugs that can penetrate the brain and stop this inflammation may be able restore the health of our brain immune cells, so they can get back to ‘cleaning up’ brain toxins.

Read more https://www.michaeljfox.org/foundation/grant-detail.php?grant_id=1521

https://www.sciencedaily.com/releases/2018/10/181031141520.htm

https://www.businesswire.com/news/home/20181031005717/en/Inflazome-Validation-New-Target-Parkinson%E2%80%99s-Disease

 

 


How to Talk So Your Doctor Will Listen

from

https://www.aarp.org/health/healthy-living/info-2016/talk-to-doctor-patient-relationship.html

Learn these tips before your next appointment
by Amy Paturel, AARP Bulletin, Jan./Feb. 2017 | Comments: 15

Be prepared for your next doctor’s visit with these helpful tips.

If you’ve ever felt like your doctor isn’t listening to you, it may be true. Studies have found that doctors let patients speak for only 23 seconds on average before cutting them off; in one University of South Carolina study, primary care patients were interrupted just 12 seconds after the physician entered the exam room.

When there’s less doctor-patient dialogue, patients are not only more likely to leave the office frustrated, but they’re also at greater risk of being misdiagnosed. Want to make up for the time crunch? Try these strategies to maximize your office visit and talk so your doctor will listen.

Make a human connection
Before you dive into your concerns, break the ice with a greeting or even a joke. “Doctors are people first, and we’re much more receptive when a patient begins a conversation with a simple, ‘How’s your day going?’ ” explains Katie Neuendorf, M.D., medical director for the Center of Excellence in Health Care Communication at the Cleveland Clinic.

Stay on message
Most doctor visits last 13 to 16 minutes, according to Medscape’s 2016 “Physician Compensation Report,” so after your greeting, get to the point. “Oversharing information unrelated to your medical concerns takes time away from tailoring a treatment plan,” Neuendorf says.

Tell the whole truth
You can’t expect a doctor to listen to your complaints, or adequately resolve them, if you’re not forthright. Tell your doctor about your fear of falling, substance abuse, sexual dysfunction or changes in sleep patterns.

Rehearse before you go
If you’re uncomfortable discussing embarrassing topics, write a script and rehearse it in front of a mirror. Use words like incontinent, bowel movements and diarrhea so that when you’re talking to the doctor, you’ll be more comfortable saying them aloud.

Don’t accept ‘it’s just aging’
If you have a symptom that has come on suddenly, keeps you up at night or interferes with your daily life, be specific about the changes you’ve noticed. “For example, you could say, ‘I’ve always been on time for appointments, but lately I’m forgetting them entirely. Is there a test you can do to rule out a more serious cognitive issue?’ ” says Mary Jane Minkin, M.D., clinical professor in the Department of Obstetrics, Gynecology and Reproductive Sciences at Yale Medical School.

Don’t save questions for the end
Once your doctor is halfway out the door, he or she is already thinking about the next patient. Instead, come with a list of concerns and address them within the first few minutes of your visit, Minkin suggests.

Explain what you can afford
Most doctors don’t have a clue about patients’ out-of-pocket costs. Some aren’t even sure which procedures, prescriptions and lab tests are covered by insurance or Medicare. “But that doesn’t mean they’re not willing to work with you to lower costs,” Neuendorf says. If you can’t afford a prescription, ask your doctor for an alternative, or ask him or her to help you prioritize your medications, so you know which ones you can skip and which ones are nonnegotiable.

Don’t go it alone
Bringing a loved one or family member to your medical visits can help ensure that the doctor listens to you and answers your questions. Your loved one can take notes, remind you about issues you wanted to discuss and help you remember doctors’ instructions after the visit is over.

Don’t be afraid to make a switch
If your doctor rushes through visits, doesn’t address your questions or fails to listen to you without interrupting, look for a new physician. “There’s no shame in finding someone who’s a better fit,” Grube says.


FDA reviews two new Parkinson’s drugs to treat ‘OFF’ episodes

22 October 2018 – For many people with Parkinson’s, “off” episodes — when disabling symptoms come back before it is time for the next dose of oral levodopa — are among the most troubling aspects of the disease. Now, two entirely new drug formulations with potential to alleviate “off” episodes may have reached the home stretch of their long journey to market. The FDA is expected to rule on an inhaled powder formulation of levodopa (with delivery similar to an asthma inhaler) and an under-the-tongue “Listerine strip” formulation of apomorphine in January 2019.

read more

FDA Reviews Two New Parkinson’s Drugs to Treat ‘Off’ Episodes


Another Drug for Parkinson’s Gets Approval

March 08, 2018 – Recently, the U.S. Food and Drug Administration (FDA) approved a new drug for Parkinson’s symptoms called Osmolex ER (amantadine extended-release). Osmolex ER is the third amantadine-based medication for Parkinson’s disease (PD), and joins Symmetrel (immediate-release amantadine) and Gocovri (extended-release amantadine). Amantadine works on two brain chemical systems involved in PD: dopamine and glutamate.

More options can be better, but they also can be confusing. Here we talk about these drugs’ similarities and differences and why you might consider one over another.

read more

https://www.michaeljfox.org/foundation/news-detail.php?another-drug-for-parkinson-gets-approval


Albany Med recruiting for NILO-PD Study

A Phase II clinical trial to evaluate the safety and tolerability of nilotinib in Parkinson’s disease (PD) — NILO-PD — is under way at 25 sites across the United States. Researchers are looking to enroll 75 volunteers.

Nilotinib is a U.S. Food and Drug Administration (FDA)-approved treatment for cancer of the white blood cells. In a small Phase I trial, nilotinib showed potential benefit in PD. The nilotinib trial is one of many examples of repurposing, or repositioning, therapies for Parkinson’s. Repurposing is taking an existing medication approved by the FDA for one condition and using it to treat another; it can be a promising path to new PD therapies. But patients and clinicians are urged to wait for additional safety and efficacy data before adding nilotinib or any other repurposed drug to their regimen.

Here we answer a few key questions about the nilotinib trial.

What is the NILO-PD study?
The NILO-PD study will investigate the safety and tolerability of nilotinib in 75 people with Parkinson’s at 25 research institutions across the United States. Two-thirds of participants will receive nilotinib and the remaining will take placebo (an inactive pill) for comparison. Study involvement lasts approximately eight and a half months and includes 13 in-person visits.

What is nilotinib? Why do researchers believe it may slow or stop Parkinson’s?
Nilotinib is an FDA-approved drug to treat certain forms of white blood cell cancer. It is not approved to treat Parkinson’s disease. Nilotinib inhibits the activity of a protein, c-Abl, which is linked to pathways associated with PD, and preliminary data from a small Phase I clinical trial showed potential safety, tolerability and benefit in Parkinson’s. Watch a webinar on nilotinib.

Who is eligible to participate in NILO-PD?
Volunteers must meet certain criteria, including:

  • Age between 40 and 79,
  • PD diagnosis for more than five years, and
  • Stable PD medications, which include levodopa, for at least 30 days prior to enrollment.

Additional characteristics may qualify or exclude a participant as well. You can view all eligibility criteria on Fox Trial Finder.

How can people learn more about NILO-PD?
Visit Fox Trial Finder to read more about the study, eligibility criteria and recruiting sites. Or, contact your local site directly. (You can find phone numbers and emails on Fox Trial Finder.) You also can learn more on the study’s website: www.nilopd.org.

For more information, read the NILO-PD press release.

Site address:

Albany Medical College
47 New Scotland Avenue
Albany, NY  12208

If you are interested in participating or want to learn more about this study, please contact:
Sharon Evans, LPN 518-262-6682

 


Suggestions for Handwriting Changes

Many people with Parkinson’s disease notice changes in their handwriting. Handwriting often becomes small and cramped, and can become more difficult to control when writing for longer periods of time. This handwriting change is called micrographia.

Why does micrographia occur?
Parkinson’s can cause slowing of movement and feelings of muscle stiffness in the hands and fingers. Loss of automatic motion also affects the easy, flowing motion of handwriting. This can impact even simple writing tasks such as signing your name or writing a shopping list. Attempts to write quickly without thinking about forming each
letter contributes to small, cramped handwriting, and may cause the hand to develop a feeling of tightness.

How can I make writing easier?

read more https://parkinson.org/sites/default/files/Suggestions%20for%20Handwriting%20Changes.pdf


Speech and Swallowing Resources

http://parkinsons.stanford.edu/speech_swallowing.html for more current list

Relevant Publications – Downloadable

“Eating, Swallowing and Saliva Control in Parkinson’s”
Published by Parkinson’s UK, 2013
This six-page information sheet explains difficulties associated with eating and swallowing, as well as producing too much or too little saliva. Information and tips for family and friends are shared.

 

“Parkinson’s Disease: Speech and Swallowing,” by Marjorie L. Johnson MA/CCC-SLP
Published by National Parkinson Foundation (Now the Parkinson’s Foundation)
This 21-page booklet describes speech, swallowing, memory and thinking changes in PD. An evaluation check list helps determine if professional assistance is needed for speech and swallowing. Speech, swallowing, and cognitive self-help suggestions for patient, family and friends are included.
En Espanol: Enfermedad de Parkinson: Dificultades con el Habla y la Deglucion (tragar)

 

“Speaking Effectively, A Strategic Guide For Speaking and Swallowing”
Published by American Parkinson Disease Association, 2010
Booklet includes self-evaluations and caregiver surveys to determine at what point professional help is needed. Professional examinations are described along with recommendations for both home and professional intervention to improve speech, make eating easier and safer, and reduce drooling. Maintaining communication to reduce isolation is encouraged.


“Speech and Language Therapy and Parkinson’s”

Published by Parkinson’s UK, 2013
Short information sheet looks at what difficulties associated with speech and communication, and how speech and language therapy can help.

 

“Swallowing and Parkinson’s Disease”
Published by Parkinson’s Australia, 2008
Short summary of implications of swallowing problems, using both medical and lay terminology, with management strategies for some.

 

“What is Dysphagia?”
Published by American Parkinson Disease Association, 2011
This educational supplement describes the normal swallowing process. It offers seven swallowing exercises and a list of five other considerations that help with swallowing.

 


Relevant Online Information

“10 Tips for Managing Drooling in Parkinson’s,” by Dr. Maria De Leon
Published by defeatparkinsons.com, July 31, 2014
Sailorrhea, or drooling, refers to pooling of saliva in the mouth.  It occurs in around 50-80% of all Parkinson’s patients, particularly men.  This blog post explains the cause, risk of aspiration, anxiety, and social embarrassment, with 10 helpful tips & treatment options to help with this pesky problem.

 

“Speech and Swallowing Problems”
Published by National Parkinson Foundation (Now the Parkinson’s Foundation)
Webpage with self-assessments to determine if professional evaluation is needed for speech or voice and swallowing problems. Additioinal links to information on treatment for speech problems and a stronger voice.

 

“Saliva Control”
Published by the MSA Trust, April 2016
This 4-page fact sheet is aimed at those experiencing difficulties with saliva control.  It provides information about the possible problems and advises on what can be done to manage these symptoms.  MSA is a form of parkinsonism, sometimes referred to as ‘Parkinson’s Plus.’  It shares many gait, balance, and non-motor symptoms, like sailorrhea (drooling).

 

“Swallowing”
Published by What-When-How, In Depth Tutorials and Information
This short webpage explains the typical sequence of movements that transport food and liquids from the mouth to the stomach.  PD often affects the function of these muscles,  causing swallowing problems or drooling.  Significant swallowing problems can be life threatening.  Speech-language pathology can help a person improve control of these muscles.

 


Relevant Online Lectures and Webinars

“How Does Speech Therapy Help in Parkinson’s Patients”
By National Parkinson Foundation (Now the Parkinson’s Foundation), August 2009
Four-minute video features Michael S. Okun, MD.

 


“My Parkinson’s Story: Speech and Swallowing”
By the Veteran’s Administration
This 8-minute video alternates between an interview with a man and his wife and healthcare professionals. The man and his wife share how Parkinson’s has affected his speech and swallowing. The healthcare professionals explain how Parkinson’s affects speech and swallowing. Speech therapy can improve speech volume and enunciation as well as swallowing control and drooling. They also advise specific changes to eating habits and avoiding some types of foods to prevent choking.

 

“What Types of Tests and Techniques are there for Swallowing Problems?”
By the National Parkinson Foundation (Now the Parkinson’s Foundation)
Four-minute video features Michael S. Okun, MD.

 


Links last updated by Denise Dagan January 2018. This list compiled by Denise Dagan with Stanford’s Parkinson’s Community Outreach Program, May 2012.

 

 


Molecule capable of halting and reverting neurodegeneration caused by Parkinson’s disease identified

The small SynuClean-D molecule interrupts the formation of the alpha-synuclein amyloid fibres responsible for the onset of Parkinson’s disease, and reverts the neurodegeneration caused by the disease. The study, headed by Universitat Autònoma de Barcelona researchers, was published in PNAS.

Read more

https://medicalxpress.com/news/2018-09-molecule-capable-halting-reverting-neurodegeneration.html


New hope for Parkinson’s Cure

Japanese research team announced it will start human clinical trials for a new Parkinson’s disease treatment.
On Monday, a team from Kyoto University’s Center for iPS Cell Research and Application announced it will begin testing the new treatment on humans after successful rounds of animal trials. The injected treatment uses stem cells to help those with Parkinson’s diseases and received approval from the government.

Read more 


Game-changer for Parkinson’s disease outcomes

A unique gaming system called ‘OrbIT’ will play a lead role in the fight to improve life for individuals living with Parkinson’s disease, thanks to funding from the Estate of the late Olga Mabel Woolger.

In a three-year $90,000 study, Flinders University Rehabilitation Engineer, Mr David Hobbs and University of Adelaide neuroscientist Dr. Lyndsey Collins-Praino will partner with Parkinson’s South Australia to trial OrbIT as a cognitive training device to improve outcomes and delay dementia onset for people with Parkinson’s .

The OrbIT gaming system is an accessible, fun, stand-alone computer gaming system that features a novel and easy to use controller.

read more https://medicalxpress.com/news/2018-07-game-changer-parkinson-disease-outcomes.html


Experimental drug stops Parkinson’s disease progression and symptoms in mice

Drug similar to FDA-approved diabetes treatments shown to prevent motor impairment, extend the lives of mice with Parkinson’s

Johns Hopkins researchers say they have developed an experimental drug similar to compounds used to treat diabetes that slows the progression of Parkinson’s disease and its symptoms in mice.

In experiments performed with cultures of human brain cells and live mouse models, they report the drug, called NLY01, blocked the degradation of brain cells that is the hallmark of Parkinson’s disease. The drug is expected to move to clinical trials this year.

Read more


In Parkinson’s Disease, early diagnosis does matter

Carolyn Allen Zeiger, Ph.D.

Retired Licensed Psychologist

and spouse of someone with Parkinson’s Disease

 

In Parkinson’s Disease, early diagnosis does matter—for some obvious reasons, and also for reasons that are rarely discussed.  (recent edit 2/20/2018)

The question I always hear people with Parkinson’s (PWPs)—and their spouses—ask about someone else with PD is not, “How long have you had PD?” but “When were you diagnosed?”  Given that there is no definitive medical test to confirm the diagnosis, the delay between symptom onset and diagnosis is generally a few years. The thinking used to be that an early diagnosis didn’t matter.  After all, at this time it can’t be cured, it’s going to progress, and perhaps it is best to delay the use of dopamine replacement medications since they only provide symptom relief. In addition, even some physicians still harbor the mistaken belief that these medications tend to lose their effectiveness over time. Generally unstated, is also the thought that early in the progression of the disease it doesn’t have a big negative impact on the patient, or his life in general.  He’s doing well enough to get by. But is he or she? And what about the spouse or partner?

Fortunately, more doctors are focusing on early diagnosis.  But not for a reason that I find compelling: the impact of PD on our most intimate relationships—spouse, partner, lover. So many times I have heard, and experienced myself, the painful impact of undiagnosed PD on our closest relationships. Sometimes the impact is so great as to mean the ending of even long-term marriages when unidentified symptoms become burdensome or sources of ongoing conflict.  

The precise source of the problems varies depending on the varying symptom patterns.  Here are just a few stories:

Facial masking.  A wife wept as she told me, “He never smiled at me anymore. I kept asking, are you angry with me?  Don’t you love me anymore? “ He didn’t know what I was talking about. Finally he did get angry. “Just leave me alone! Nothing is wrong.”  She began to pull back; he responded in kind. A long time, close and open relationship became distant and closed off.

Fading Voice.  When the PWP can’t be heard, he feels ignored, or is convinced that his partner has a hearing problem because he is not aware that his voice has become soft.  His speech might be slurred and hard to understand as well. His partner becomes impatient, and perhaps a little embarrassed, so she begins to speak for him; the PWP pulls back, goes silent and a destructive pattern has been established

Apathy.  Partner: “Get off that couch and DO something!  All you do is sit around.”

PWP: “But I don’t feel like doing anything.”   

Partner: “If you would just get moving, you would.”

But no amount of either nagging or kind encouragement makes a difference because the apathy has a neurological basis. The spouse starts doing things by himself because “Nothing I do gets her moving, and I don’t want to stay home all the time.”  Both are lonely.

REM Sleep Behavior Disorder.   During the night, a man is awakened by his wife screaming and swearing at him.  He’s completely shocked and furious. “I didn’t do anything to deserve that!” When he wakes her up, she doesn’t have any idea what he is talking about.  Another PWP punched his sleeping wife—convinced he was actually “saving her from a gorilla”. Of course the gorilla was in a dream that he was unknowingly acting out.

Of course, symptoms interact and exacerbate each other.

Foot dragging combined with fragmentation of sleep at night and daytime fatigue  can lead to frequent tripping and falls, injuries that put a burden on them both, and lead to injuries and/or health problems for the partner as well as the PWP.

In all these scenarios, the accumulation of seemingly minor symptoms can lead to a major disruption in the relationship. The partner with PD feels constantly scrutinized, unfairly criticized, and nagged. The care partner feels ignored, disbelieved, and abandoned.  Over time, both partners may feel mistreated or simply neglected. The distance and constant tension of conflict, even low-level conflict, erodes the intimacy in the relationship.

One of the areas where couples experience the most pain is in the most intimate relationship: sex.  Many aspects of PD can interfere with a couple’s sex life. They include fatigue, apathy, loss of erectile function, reduced libido, and anxiety. All are neurologically based symptoms that can appear to be psychological (and might be that as well!), or stem from something going wrong in the relationship. Some of the physical symptoms such as awkward movements, loss of bladder control or drooling can be embarrassing or repellant to either one of them. The result is that either partner may pull away or give up.  Talking about it is important, but isn’t sufficient to solve the problems when the cause remains a mystery to them both.

In talking to both PWPs and their partners, I very rarely hear about a doctor inquiring about a couple’s sex life—before or after diagnosis. Sometimes younger clinicians assume that an older couple doesn’t have a sex life any longer. Or the couple might think they are just “too old” now, so they don’t even think to tell the doctor. For younger couples this can be even more disruptive to the relationship. As a psychologist, I know this is a difficult subject for any patient to broach, whatever their age or stage in life, and so it is seldom addressed.

What can be done?  

More doctors understand that PD is more than a movement disorder.  Some are taking a whole-person focus and inquiring about your whole life.  This may seem odd or inappropriate— sex is not what you came in to talk about—nonetheless, it is invaluable. You can help the clinicians out by telling them everything that is bothering you, whether you consider it physiological or psychological. Because my husband’s symptoms were more autonomic than motor, no doctor would consider evaluating him for PD, even when asked. Nevertheless, because a nurse asked us to tell her everything we were concerned about, the interview revealed the pattern of autonomic as well as movement related disorders that characterize PD.  

And after you receive a diagnosis, continue to report all your concerns—both partners’ concerns.  Because the PWP is often not aware of his symptoms, the perspective of those closest to him is essential for both diagnosis and selection of the best possible treatment of symptoms.  Also what bothers the partner may not bother the PWP and vice versa. Both of you count.

Read books that focus on all aspects of living with PD, such as Brain and Behavior by Joseph H. Friedman, MD, and 100 Questions and Answers about Parkinson Disease by Abraham Lieberman, MD. I highly recommend getting the Phinney  Foundation guide Every  Victory Counts. Read and contribute to blogs that focus on PD.

Talk about your relationships in support groups.  I have found other members are so relieved to have someone bring up difficult topics, to know they are not alone, and are grateful to other members who share ideas and approaches that are helpful.  Have your support group leaders bring in experts to talk about the impact of PD on relationships—including sex. When I have given such talks, some members begin to talk openly while others sit quietly listening.  Participants share their pain, fears, confusion, guilt, and then sigh with relief as they come to understand what is going wrong and ways to address it. Afterwards, both the quiet and the talkative participants tell me how much it has helped them.

Share this article with neurologists to help them understand more about how PD impacts relationships and the value of early diagnosis.  We health professionals truly want to be helpful, and to do so, we need to educate and consult with each other.

Medication may provide “only” symptom-relief, but relief can be essential to restoring and preserving your relationship.  Also, treatment is more than medication. It includes exercise. Exercise of various kinds has been shown to not only improve function, but to stimulate neural growth. In our work teaching yoga for Parkinson’s, our students reported that it improves mood and self confidence (And we could see it!). Just having fun is therapy!  Treatment can also include support groups and psychotherapy, enjoyable activities—anything that improves your quality of life.

A combination of treatments tailored to the individual PWP, taking into account the person’s life situation and key relationships, provides a better quality of life for everyone, both individually and as a couple. Improvement in one aspect of your life starts a positive feedback loop, and each person’s life becomes more satisfying

Carolyn Allen Zeiger, Ph.D. has over 45 years experience in the fields of clinical, organizational and health psychology. With Kate Kelsall’s husband, Tom, she founded a Parkinson’s care partners’ support group in Denver, and assisted her husband Paul in teaching yoga to others with Parkinson’s Disease and their partners. Carolyn is a retired State of Colorado Licensed Psychologist, and former adjunct faculty member at University of Denver, University of Colorado and University of Arizona. She also provided short term counseling for the caregivers of those with Parkinson’s Disease.

 


Impulse control disorders found to be more common in people taking Parkinson’s drugs

Over time, half of the people taking certain drugs for Parkinson’s disease may develop impulse control disorders such as compulsive gambling, shopping or eating, according to a study published in the June 20, 2018, online issue of Neurology®, the medical journal of the American Academy of Neurology.

In Parkinson’s, a vital chemical in the brain called dopamine that regulates movement is gradually reduced. Parkinson’s is treated with levodopa, which converts to dopamine in the brain, or with dopamine agonists, which work by activating dopamine receptors.

“Our study suggests that impulse control disorders are even more common than we thought in people who take dopamine agonists,” said study author Jean-Christophe Corvol, MD, of the ICM Brain and Spine Institute-;Pitié-Salpêtrière Hospital, Assistance Publique-;Hôpitaux de Paris, Sorbonne University in Paris, France. “These disorders can lead to serious financial, legal and social and psychological problems.”

Read more


Study Links Some Antidepressants, Bipolar Medications To Dementia

The research also found an associated risk with medications used for bladder conditions, as well as Parkinson’s disease.

“It’s important but it’s not conclusive,” commented Dr. Barbara Sommer, a geriatric psychiatrist at Stanford Medical Center and an expert in anticholinergic medication. She cautioned that the study does not prove these drugs cause dementia. Even so, she said if you take medication, over-the-counter drugs, even supplements, you should reassess if you really need them.

Read more

Study Links Some Antidepressants, Bipolar Medications To Dementia « CBS San Francisco

 


APDA Healthcare Communication Graph

 

By using the APDA Healthcare Communication Graph you will be able to consistently track important PD symptoms. This tool will allow you to identify any changes in symptoms and make visits with your healthcare professionals focused and productive.

How to Use This Tool

You will be asked to rate how you feel in several specific areas.

The areas of focus are:

Motor Symptoms:

  • Tremor
  • Rigidity
  • Balance/Walking difficulties
  • Motor fluctuations/dyskinesia
Non-Motor Symptoms:

  • Fatigue/Sleep disturbances
  • Anxiety/Depression/Memory
  • Swallowing
  • Gastrointestinal Issues/Constipation
  • Sexual concerns

APDA Healthcare Communication Graph


Gocovri Improves Dyskinesia in Parkinson’s Patients

From: https://parkinsonsnewstoday.com/2018/04/24/gocovri-improves-dyskinesia-over-long-term-parkinsons-phase-3-trial

Gocovri (amantadine) extended release oral capsules provided long-term improvements of motor complications in Parkinson’s disease patients, according to results from a Phase 3 clinical trial.

Gocovri, developed by Adamas Pharmaceuticals, is the only medication approved by the U.S. Food and Drug Administration for the treatment of dyskinesia — involuntary, jerky movements — in Parkinson’s patients who receive levodopa-based therapy, with or without accompanying dopaminergic medications.

In clinical studies, people with PD taking GOCOVRI experienced significantly less dyskinesia, as well as reduced “OFF” time resulting in better movement control.

GOCOVRI™ (amantadine) extended release capsules is the first and only FDA-approved prescription medication indicated to treat dyskinesia (sudden, uncontrolled movements) in people with Parkinson’s disease (PD) who are treated with levodopa therapy, with or without other medicines that increase the effects of dopamine in the brain. It is not known if GOCOVRI is safe and effective in children.

Read more

 


Assistive technology

Vermont Assistive technology helps people with disabilities fully access their world. This technology can
be used as-is, or it can be modified or customized for an individual’s specific needs around the
home, on the job, and in the community. The Vermont Assistive Technology Program is
committed to helping people with disabilities of all ages get access to information about the
assistive technology they need and want. By doing so, we empower Vermonters with
enhanced independence, productivity and confidence for greater inclusion across our state.

Read more VATP_AT4ALL_One_Pager


PD Library

PD Library.

If you have Parkinson’s disease or care for someone who does, you need information. And you might just find answers in the PD Library. The free online resource — maintained by the Parkinson’s Foundation — is a gold mine for anyone with an interest in the disease


Quotes from Steven Hawking

On Taking Risks

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

 

The Meaning of Life

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

 

NY Times Obituary

 


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

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

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

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

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

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

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

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

“While collecting data, we have seen first-hand

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

Read more


6 of the best apps for chronic illness management

Medisafe is an app that helps patients manage medications

Pain Diary works for anyone with a chronic illness.

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

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

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

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

Read more

https://parkinsonsnewstoday.com/2018/01/03/apps-chronic-illness-management


Open Letter to Acadia Pharmacudicals

TO: Paul Sciortino
Neuroscience Sales Specialist
ACADIA Pharmaceuticals Inc.
psciortino@acadia-pharm.com
cell 802-238-3903

https://www.nuplazid.com/pdf/NUPLAZID_Prescribing_Information.pdf

From: Jud Eson and Nancy R. Eson

Hi Paul,

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

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

https://www.ispot.tv/ad/wC8L/more-to-parkinsons-secret-visitors

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

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

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

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

Jud Eson and Nancy Eson

President

Capital District Parkinson’s Support Group


Fox Insight

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

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

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