Diagnosis, Treatment and News


APDA Symptom Tracker Smartphone App

Everyone experiences PD differently, and symptoms can vary greatly day by day.  The more specific you can be with your health care team about the types of symptoms you’re experiencing, the better your doctor(s) can tailor a treatment plan specifically for you.  But sometimes it can be hard for people to remember how certain symptoms have or have not affected them since the last time they connected with their health care team.  Noting this challenge, APDA has developed a new mobile phone app to make it easy to keep track of symptoms frequently and more accurately and share that information with the medical professionals who are providing care.

The free APDA Symptom Tracker App guides you through a simple set of questions that allow you to rate how certain motor and non-motor symptoms are affecting you.  It then creates a simple graph to indicate which symptoms are most impacting your quality of life; that graph can be saved in the “My Library” section of the app and can also be emailed directly to members of your health care team.  Over time, you can compare the results to see if certain symptoms are getting worse and determine which symptoms need to be addressed more urgently than others. 

The APDA Symptom Tracker also has a special “Questions for the Doctor” feature that generates a list of suggested follow-up items for you to review with your doctor.  This can help your be more proactive in managing your PD.  You can bring a printout of the questions to your appointment so you don’t forget to ask any that are important to you.  The app also features a useful list of resources that connects your directly to a wealth of quality, credible PD information.

The APDA Symptom Tracker App can help you have more meaningful conversations with you healthcare team and better manage your disease. The app can be downloaded for free from the Apple App Store or Google Play.

The development of this app was made possible by generous support from Acadia Pharmaceuticals.


Blood Pressure Drug, Isradipine, Shows No Benefit for Parkinson’s Disease

A large-scale study of the blood pressure drug isradipine found that the drug did not show any benefit for people with Parkinson’s disease.

“Unfortunately, the people who were taking isradipine did not have any difference in their Parkinson’s symptoms over the three years of the study compared to the people who took a placebo,” said lead investigator Tanya Simuni, MD, of Northwestern University.

Read more https://www.michaeljfox.org/foundation/news-detail.php?blood-pressure-drug-shows-no-benefit-for-parkinson-disease


Supplements Won’t Prevent Dementia. But These Steps Might.

From NY Times https://www.nytimes.com/2019/03/01/health/dementia-prevention-supplements.html

There are ways people can reduce their risk of dementia. Two prestigious panels, reviewing many prevention studies, recently came up with several recommendations.

The more conservative report, from the National Academies of Sciences, Engineering and Medicine in 2017, relied primarily on large randomized clinical trials.

There aren’t many of those, so the panel endorsed just three interventions “supported by encouraging but inconclusive evidence,” to prevent, delay or slow cognitive decline.

The three:

  • Increased physical activity;
  • Blood pressure management for people with hypertension, particularly in midlife;
  • And cognitive training.

That last recommendation doesn’t necessarily refer to commercial online brain games, said Dr. Kristine Yaffe, a neuropsychiatrist and epidemiologist at the University of California, San Francisco, who served on the panel.

“It’s really the concept of being mentally active,” she said. “Find something you enjoy where you’re learning something new, challenging and stimulating your brain.”

Though the evidence to date doesn’t establish which mental workouts have the greatest impact or how often people should engage in them, “they’re not expensive and they don’t cause side effects,” Dr. Yaffe pointed out.

The blood pressure recommendation got a boost in January with the latest findings from the Sprint trial, a multisite study stopped early in 2015 when intensive treatment of hypertension (a systolic blood pressure goal of less than 120, compared to the standard 140) was shown to reduce cardiovascular events and deaths.

The investigators continued the trial, however, with 9,361 participants who had hypertension (average age: 68) and completed follow-up cognitive assessments.

Their results, published in JAMA, showed the intensive treatment group less likely to develop dementia than those in standard treatment, though not by a statistically significant margin. Intensive treatment did, however, significantly reduce participants’ risk of mild cognitive impairment, a frequent precursor to dementia.

“To me, it was one of the most exciting findings to come along in years,” said Dr. Yaffe, who noted in an accompanying editorial that this was the first large trial to demonstrate an effective strategy for preventing age-related cognitive impairment.

“The same things we recommend for heart health turn out to be important for cognition,” she told me. “It’s a blossoming field.”

The Lancet Commission on Dementia Prevention, Intervention and Care also recommended hypertension treatment for the middle-aged, along with exercise, social engagement and smoking cessation, as well as management of obesity, diabetes, hearing loss and depression. Such steps could prevent or delay a third of dementia cases, the commission estimated.

When Dr. Yaffe gives talks on dementia prevention, she also mentions good sleep hygiene and urges listeners to protect themselves against brain injuries.

It’s important advice, but disappointingly undramatic. Where’s the magic bullet? Don’t we already know to stay physically and mentally active, maintain a normal weight, treat high blood pressure and so on?

Moreover, “it’s not foolproof,” Dr. Yaffe acknowledged. In the lottery of dementia, “there’s a role for genetics. There’s a role for bad luck.”

Still, she added, “The concept is important. You can do something about this. You can lower your risk.”

That’s why the most helpful approach Donna Kaye Hill uses to protect herself from dementia probably isn’t taking fish oil,


An active form of vitamin B12 can reduce the effects of dopamine loss in Parkinson’s disease caused by genetic mutations in the LRRK2 gene, a study suggests.

These finding means that this form of vitamin B12 could be used as the basis for developing new therapies for treating Parkinson’s.

The study, “Vitamin B12 modulates Parkinson’s disease LRRK2 kinase activity through allosteric regulation and confers neuroprotection,” was published in Cell Research.

Several studies have shown that overactivation of the LRRK2 enzyme, due to genetic mutations in the LRRK2 gene, is associated with the development of a hereditary form of Parkinson’s disease. But increasing evidence has suggested that this enzyme also may contribute to the progression of sporadic cases of Parkinson’s — ones caused by environmental factors.


Treatment with Intranasal Insulin May Improve Verbal Fluency and Motor Function, Early Study Shows

This pilot longitudinal study has shown that INI administration may improve functional motor skills in PD and may potentially preserve cognitive performance as compared to baseline and the placebo group. This proof-of-concept approach has shown that the use of INI in treatment of cognitive and motor impairment related to PD is safe and feasible without the risk of hypoglycemia. The lack of disease progression in the MSA case warrants further investigation. Our study provided preliminary data that suggested an improvement of functional skills after four weeks of daily INI treatment that paves the way toward a larger cohort study to evaluate long-term safety and potential efficacy of intranasal insulin administration for potential treatment and prevention of functional decline in patients with Parkinson disease.

Read more…. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0214364


Parkinson’s results beyond researchers’ wildest dreams

A treatment that has restored the movement of patients with chronic Parkinson’s disease has been developed by Canadian researchers.

Previously housebound patients are now able to walk more freely as a result of electrical stimulation to their spines.

A quarter of patients have difficulty walking as the disease wears on, often freezing on the spot and falling.

Parkinson’s UK hailed its potential impact on an aspect of the disease where there is currently no treatment.

Prof Mandar Jog, of Western University in London, Ontario, told BBC News the scale of benefit to patients of his new treatment was “beyond his wildest dreams”

Read more at https://www.bbc.com/news/health-47803496


Lookin for people with PD for research study

A clinical study for adults with recently diagnosed Parkinson’s Disease. MOLECULAR AND FUNCTIONAL BIOMARKERS OF PARKINSON’S DISEASE

OVERVIEW The purpose of this study is to help identify molecules in the saliva, called microRNAs, that can serve as biomarkers for Parkinson’s disease. These biomarkers may allow earlier diagnosis and treatment of this disease. 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. We offer flexible scheduling.

GOAL OF THIS STUDY Currently, only a very small number of biological tests are available for early diagnosis of Parkinson’s Disease, and these are not informative for all types of the 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. We hope that by discovering new markers and earlier diagnosis of Parkinson’s disease, the quality of life of patients can be improved. DO YOU QUALIFY? We are looking for participants recently diagnosed with Parkinson’s Disease. As a small compensation for your participation, each participant will receive $25. We will also pay for parking

FOR MORE INFORMATION or to schedule your participation, visit the study website and complete a contact form at: https://quadrantbiosciences.com/parkinsonsresearch/ If you qualify for the study, an information packet will be mailed to you prior to your study appointment.

Get printable tri-fold brochure about the study:


Researchers developing new therapy to treat Parkinson’s disease

Recent strides in stem cell technology mean that quality, consistency, activity, and safety can be assured and that it is possible to grow essentially unlimited amounts of dopamine-producing nerve cells in the laboratory for transplantation, said a study, published in the Journal of Parkinson’s Disease. Read more….

https://www.timesnownews.com/health/article/researchers-developing-new-therapy-to-treat-parkinsons-disease/367794


Can we repair the brain? The promise of stem cell technologies for treating Parkinson’s disease

Cell replacement may play an increasing role in alleviating the motor symptoms of Parkinson’s disease (PD) in future. Writing in a special supplement to the Journal of Parkinson’s Disease, experts describe how newly developed stem cell technologies could be used to treat the disease and discuss the great promise, as well as the significant challenges, of stem cell treatment.

Read more https://www.sciencedaily.com/releases/2019/02/190214153141.htm


Young Blood Plasma Parkinson’s Disease Study One-Month Results introduced at the Texas Neurological Society

AUSTIN, Texas, Jan. 31, 2019 /PRNewswire/ — The Neurology Center, a medical group practice of top doctors devoted to excellence in care, located in Houston, Texas, working in conjunction with two leading neurology and anti-aging specialists from Houston, will introduce on Friday initial, one-month results of their randomized controlled study of intravenously administering NuPlasma® young blood plasma into the first fourteen of twenty Parkinson’s disease patients.

In a landmark investigation that addresses a well-known neurological disorder that affects more than 10 million people worldwide, for which there has been previously no known treatment that can slow the progression of the disease, the randomized double-blind, placebo-controlled study, designed to evaluate the efficacy of 25 ml/kg intravenous NuPlasma® young Fresh Frozen Plasma (yFFP) administered in two doses over three days, realized dramatic improvements in critical disease-conditions such as pain, facial expression, speech, handwriting, tremors, rigidity and falling.  yFFP recipients achieved improvements in 30/43 assessment categories, with yFFP outperforming the placebo in every assessment subset.

Full and continuing study disease assessment and blood laboratory data is accessible online at:  www.youngplasmastudy.com.


‘We may not find a cure but we will be closer because of this’

Federal Health Minister Greg Hunt will announce $30 million in funding for the Parkinson’s Disease Mission, which combines clinical trials and genomics research led by the Garvan Institute of Medical Research.

Despite dedicated research since the 1960s, the causes of Parkinson’s are largely unknown and treatments only mask the symptoms. There is an urgent need to identify drugs that will slow or stop the disease, Mr Hunt said.

The mission’s first clinical trial will assign 300 patients to randomly receive existing drugs for diabetes, asthma, cardiovascular disease, a supplement or placebo.

Lead researcher, neurologist Professor Simon Lewis said the trials should give patients “realistic hope, not hype”. But the beauty of the Parkinson’s Disease Mission was that it will combine clinical trials and “really clever science”, Professor Lewis said.

Read more at Sydney Morning hearald



Subjective Cognitive Decline Could Help Predict Parkinson’s Dementia, Study Contends

Increasing evidence suggests that subjective cognitive decline is associated with Alzheimer’s disease pathology and with an increased risk for future dementia development. However, the clinical value of subjective cognitive decline in Parkinson’s disease (PD-SCD) is unclear. The aim of the present work was to characterize PD-SCD and its progression to dementia.

Statistical analyses revealed that language domain and, especially memory domain are good predictors of dementia.

Conclusions

The present investigation is the first to conduct a long-term follow-up study of PD-SCD and its relationship with the development of dementia. The results provide relevant data about the characterization of SCD in PD patients and show that PD-SCD is a risk factor for progression to dementia

read more https://link.springer.com/article/10.1007/s00415-019-09197-0


FDA approves focused ultrasound to treat symptom of Parkinson’s

December 21, 2018 — Insightec announced that the U.S. Food and Drug Administration (FDA) has approved an expansion of the indication of Exablate Neuro to include the treatment of patients with tremor-dominant Parkinson’s disease (PD).

The Exablate Neuro is a focused ultrasound device for performing incisionless thalamotomy guided by magnetic resonance imaging (MRI). This expansion adds medication-refractory tremor from PD to the current Exablate Neuro indication for incisionless, focused ultrasound thalamotomy for medication-refractory essential tremor. Read more https://www.itnonline.com/content/fda-approves-exablate-neuro-tremor-dominant-parkinsons-treatment


New connection between the gut and brain

Interestingly, there is a growing body of work showing that there is communication between the gut and brain, now commonly dubbed the gut–brain axis. The disruption of the gut–brain axis contributes to a diverse range of diseases, including Parkinson’s disease and irritable bowel syndrome.

Read more 


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.

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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.”

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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.

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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