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I copy news articles pertaining to research, news and information for Parkinson's disease, Dementia, the Brain, Depression and Parkinson's with Dystonia. I also post about Fundraising for Parkinson's disease and events. I try to be up-to-date as possible. I have Parkinson's
diseases as well and thought it would be nice to have a place where
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Monday, March 19, 2018

Boxer George Stonier advocates for Parkinson’s disease awareness

March 19, 2018

Submitted photo 
George Stonier and Kathy Reap, both of Rock Steady Boxing, will speak at the Dietrich Theater’s free presentation, ‘Parkinson’s and the Power of Exercise,’ scheduled for 11 a.m. April 7 at the theater.

TUNKHANNOCK — The Dietrich Theater will host a free presentation, entitled “Parkinson’s and the Power of Exercise,” at 11 a.m. April 7 for Parkinson’s Disease Awareness Month.

The Parkinson’s Disease Foundation estimates there are more than 1 million people in the United States diagnosed with the disease, with more than 60,000 people are diagnosed each year.
Parkinson’s disease is a degenerative movement disorder that can cause deterioration of motor skills, balance, speech and sensory function. A necessary way to fight the disease is exercise, which has been shown to slow its progression.

George Stonier, boxer and assistant coach of Rock Steady Boxing, will share his journey with Parkinson’s. Kathy Reap, Rock Steady Boxing coach, will talk about the effect of high-intensity exercise on Parkinson’s disease. Kristina Dorkoski, from Allied/John Heinz, will discuss Parkinson’s wellness recovery and Maureen Pascal, from Misericordia University, will present her students’ research on Parkinson’s and exercise.

All four speakers will hold a question and answer session after the presentation.
Free tickets will be available at the door. For more information, call 570-996-1500.

St. Rita’s health focus: An update on Parkinson’s disease

March 19, 2018  -  By Beth Hartoon - Guest Columnist

You have seen some of the “faces” of Parkinson’s disease — Mohammad Ali, Michael J. Fox, Pope John Paul II, Neil Diamond. Some of those faces may also be your neighbor, friend, work colleague, a church member. What you may not know is what Parkinson’s is and how it’s managed.
Parkinson’s disease is a neurodegenerative disorder that affects approximately 1 million people in the United States and 10 million people worldwide. It was first described by Dr. James Parkinson in 1817 in his article, “An Essay on Shaking Palsy.”
This disorder affects the predominantly dopamine-producing cells in the brain. Dopamine is a neurotransmitter that helps regulate movement. Lack of or decrease in dopamine can cause stiffness in movement, imbalance and tremors.
There is no one way to diagnose Parkinson’s, but there are four main motor symptoms that occur: tremor; slow movements; stiffness/rigidity of arms, legs and trunk; and trouble with balance and falls. The causes are unknown, but it has possibly been linked to genetic factors in <10 percent of the cases, environment and age, as it is most common in those 50 years of age and older.
While there currently is no cure for Parkinson’s, treatment focuses on controlling the symptoms. Treatment may include medication, surgery and exercise. Exercise has proven to be very beneficial in combating this disease. It boosts energy, promotes better sleep, strengthens arms and legs, helps build stronger bones and improves walking and balance, to name a few. Exercise boosts the blood flow to the brain and helps it receive oxygen. Exercise for Parkinson’s has proven to improve the ability of the brain to learn change (neuroplasticity) and slow the progression of the disease (neuroprotective). The type of exercise that has been proven to be most beneficial through research is that of high intensity (aerobics included) and large movement. Exercise classes provide an environment for social support and the ability to learn from each other.
Through the Parkinson’s exercise and support groups provided by Mercy Health-St. Rita’s, staff members Beth Hartoon, PT, DPT and Heather Harvey, we are providing a fun and social environment for which people with Parkinson’s can meet others with similar problems and also improve their function. Concepts learned in these classes can be carried over to home exercise programs, community-based classes, exercises at local fitness centers, Silver Sneakers programs and seniors programs. Exercise classes meet weekly in both Lima and Ottawa with support groups in both locations meeting monthly.
Hartoon has been involved in the programs since 2002, having both her mother and mother-in-law being diagnosed with Parkinson’s. She went on to do her doctoral project on exercise and its relationship with Parkinson’s disease. She is certified in BIG and Delay the Disease — both nationally recognized programs focusing on evidence-based treatment of Parkinson’s disease. Harvey joined her in 2015 and is also certified in Delay the Disease.
As our participants say, “I may have Parkinson’s, but Parkinson’s doesn’t have me”!
For more information about our programs or to enroll in classes/support groups, please call 419-226-9019 or 419-523-3590.

The Michael J. Fox Foundation for Parkinson's Research Announces Availability of $7 Million in Fall 2018

March 19, 2018

Research Funding to Expand Understanding of Parkinson's Disease and Accelerate Drug Development

NEW YORKMarch 19, 2018 /PRNewswire-USNewswire/ -- As part of its ambitious mission to speed Parkinson's disease research toward breakthrough treatments and a cure, The Michael J. Fox Foundation (MJFF) today announced up to $7 million in available funding for investigator-initiated projects in four fast-moving fields of inquiry. Pre-proposals are invited now through May, with funding anticipated in November 2018.
The programs opening today aim to use novel technologies to treat one of Parkinson's most serious symptoms; increase understanding and development of two leading drug targets; and develop tests to quantify disease pathology.
"We are working diligently toward breakthroughs for people with Parkinson's and are committed to helping make therapy options available to treat the disease," said MJFF CEO Todd Sherer, PhD. "We are proud of our dedication to using patient-raised capital to speed the outcomes patients need. The targeted funding programs announced today will fuel cutting-edge research in areas of significant scientific potential, providing multiple shots on goal."  
Easing an Untreated Symptom: Non-pharmacological Interventions for Gait and Balance Problems ($2 million)
Gait and balance disturbances are among the most troubling and under-addressed aspects of Parkinson's disease. A constellation of related symptoms can lead to falls, injury, loss of independence and diminished quality of life. For many patients, current pharmacological interventions are inadequate to improve challenges in gait and balance. Researchers are increasingly looking "beyond the medicine cabinet" to better care for people who experience these issues.

MJFF is currently funding approximately $2.7 million in projects studying the brain circuitry and clinical experience of gait and balance problems. This program will complement that activity by funding studies to investigate the therapeutic benefit of assistive devices (e.g., back or leg braces), novel technologies (e.g., laser or wearable devices) or rehabilitative therapy programs (e.g., physical or occupational therapy).
Applicants may request up to $500,000. This program is not appropriate for cognitive strategies or exercise programs.
Clearing the Clumps: Alpha-synuclein Biology and Therapies ($1.5 million)
The protein alpha-synuclein is the major component of Lewy bodies, protein clumps found in brain and body cells of nearly everyone with Parkinson's disease. Researchers believe that Lewy bodies may play a causal role in PD onset and progression. For this reason, alpha-synuclein is a leading Parkinson's drug target. This program aims to advance understanding of the role of alpha-synuclein in normal and disease states to refine and optimize approaches for alpha-synuclein drug development. 

Applicants may request up to $150,000 for biological investigations or $500,000 for novel therapeutic development. 
Profiling a Leading Genetic Cause: GBA Biology and Therapies ($1.5 million) 
Co-led with the Silverstein Foundation for Parkinson's with GBA
MJFF has allocated $16.4 million in funding to date to expand understanding of the GBA gene in Parkinson's and speed learnings toward practical therapies. While mutations in the GBA gene account for five to 10 percent of all Parkinson's cases (making it one of the most common genetic contributors to PD), GBA protein dysfunction has been observed even in Parkinson's patients who do not carry mutations in the GBA gene. This potential broad base of benefit makes it an especially compelling drug target. This program seeks to increase understanding of the role of GBA in PD disease processes and to accelerate and facilitate the delivery of drugs targeting GBA mutations in people with Parkinson's.

Applicants may request up to $150,000 for biological investigations or $500,000 for novel therapeutic development.
Measuring Disease: Protein Handling, Exosome and Lipidomics Biomarkers ($2 million)
Objective measures of Parkinson's risk, onset and/or progression (biomarkers) are a critical unmet need to transform patient care and drug development. Beyond their utility in earlier and accurate diagnosis, biomarkers are critically needed to enable more efficient, cost-effective clinical trials. To date, no objective biomarker for PD exists. MJFF has been a field leader and consistent funder of Parkinson's biomarker discovery, optimization and verification since 2002 through multiple funding and strategic initiatives. This includes the $80-millionParkinson's Progression Markers Initiative (PPMI), a landmark clinical study now under way at 33 sites around the world. 

This program seeks to support grants to develop and test biomarker assays in three highly relevant Parkinson's biology areas: protein handing/autophagy, exosomes and lipidomics. Observed PD dysfunction in these pathways points to potential utility as measures of disease, which now requires systematic and strategic development to move forward toward practical relevance. While biosamples from PPMI and other MJFF-supported studies are available for research use, access to those samples and funding for studies using them are awarded through a separate mechanism and not available from this RFA. Visit for more information on those resources.
Requested funding support through this RFA should be commensurate with the stage of development and work proposed.
Pre-proposals Due May 31, 2018
The deadline for pre-proposals for all four programs is Thursday, May 31, 2018 at 5 p.m. ET. Cross-disciplinary researchers and those new to Parkinson's disease are encouraged to apply. The Foundation will host an informational webinar on Thursday, May 10, 2018 at 12 p.m. ET to review the aims of these programs, detail the MJFF funding process and answer applicant questions. To register for the webinar and download funding applications, visit

MJFF has funded more than 2,600 Parkinson's research projects to date and its on-staff team of PhDs, MD and business-trained project managers currently oversee a portfolio of more than 700 active grants. In addition to creating critical research tools, galvanizing an engaged community of supporters and research volunteers, and advocating for policy and regulatory decisions to advance Parkinson's research and care, the Foundation's funding directly to investigator-driven projects is a catalyst for scientific discovery and progress toward therapies that will make a difference in patient lives.
About The Michael J. Fox Foundation for Parkinson's Research
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding more than $800 million in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson's awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world. For more information, visit us on the Web,FacebookTwitterLinkedIn and Pinterest.

SOURCE The Michael J. Fox Foundation

April is Parkinson’s disease awareness month

March 19, 2018

During April we hope to increase awareness of Parkinson’s disease (PD) and its symptoms and to provide interested individuals with access to resources. Parkinson’s disease belongs to a group of conditions called Motor System Disorders. The disease is both chronic and progressive, resulting in a loss of dopamine, a substance that is essential to normal nerve activity in the brain.
Approximately 3 million people in the U.S. have Parkinson’s-like disorders, 1.5 million of whom have been diagnosed with the disease. Each year, approximately 60,000 more Americans are diagnosed as having PD, with someone being diagnosed every nine minutes.
Symptoms of Parkinson’s disease include slowness of movement, loss of balance and coordination, tremor, rigidity or stiffness, loss of balance, “freezing in place,” softness of speech, and uncontrolled movements. As these symptoms become more pronounced, patients may have difficulty walking, talking, swallowing, or completing daily tasks.
Although most people with PD are over 60, an estimated 20 percent are under 50 and referred to as having “young onset Parkinson’s disease” or YOPD.
A Parkinson’s Moving Day will be held April 21 with a total of 39 walks being held all across the nation. In Arkansas, the walk will be held at War Memorial Stadium in Little Rock with registration beginning at 9 a.m., the walk at 10 a.m.
Some of the fun events available at Moving Day are as follows: 9:15-9:30 a.m. LSVT BIG; Chair Yoga while we are walking, for those who choose not to walk, from 10:15 a.m.; 10:45-11 a.m. Rock Steady Boxing; 11:05-11:20 a.m. Tai Chi; and 11:40-noon Yoga for Parkinson’s.
No pets will be allowed. Golf cart transportation will be provided to and from the parking lot and to Razorback field for those who need it.
For more information on the walk, contact Kristin Trulock at 501-590-8948 or
To obtain more information on the disease or how to help an individual with it, contact or 1-718-981-8083; or 1-800-473-4636; www.ninds.nih.govor contact Area Agency on Aging of Southwest Arkansas Inc. at 870-234-7410, Ext. 105, or toll free in Arkansas, 1-800-272-2127, Ext. 105.

Troubleshooting Gait and Voice Problems After DBS for Parkinson’s Disease

March 19, 2018

The approach to symptom control may change according to whether the symptom results from the disease or the stimulation.

LAS VEGAS—In patients with Parkinson’s disease, deep brain stimulation (DBS) can improve gait significantly and reduce vocal tremor. Some patients may fail to improve following implantation, however, and others who do improve may later worsen. In such cases, neurologists can address problems with gait and voice tremor using various steps to optimize DBS treatment, according to two lectures delivered at the 21st Annual Meeting of the North American Neuromodulation Society.

Refractory Gait Impairment

Gait impairment and freezing of gait may persist for years in some patients, despite DBS treatment at the traditional frequency of 130 Hz. Studies by Moreau and colleagues indicate that stimulation at 60 Hz improves these outcomes in previously refractory patients, said Helen M. Brontë-Stewart, MD, MSE, the John E. Cahill Family Professor and Director of the Stanford Movement Disorders Center at Stanford University School of Medicine in California. Research by Ricchi et al shows that low-frequency DBS also reduces gait impairment and freezing of gait in the early stages after implantation.
Helen M. Brontë-Stewart, MD, MSE

The factors that predict which patients will benefit from low-frequency DBS of the subthalamic nucleus (STN) are increased age, severe axial phenotype at five years after surgery, and lower preoperative levodopa responsiveness. But low-frequency DBS may not be adequate to improve other motor signs such as tremor, said Dr. Brontë-Stewart. Improvements on low-frequency DBS also may not last long.
The literature about which part of the STN should be stimulated for more effective treatment contains mixed results. Several investigations, including a 2011 study by McNeely et al, showed that high-frequency DBS is most efficacious when applied to the dorsolateral margin of STN. Other studies, including one performed by Dr. Brontë-Stewart and colleagues, indicate that stimulating the ventral area of the STN is more effective. Khoo et al found that 60-Hz stimulation was superior to 130-Hz stimulation for axial motor signs in Parkinson’s disease. “Clearly, we do not have consensus,” said Dr. Brontë-Stewart.

Postsurgical Gait Worsening

If a patient’s gait worsens shortly after DBS surgery, one possible explanation is that the leads were misplaced. Gait also could worsen if high-frequency DBS is applied outside the STN, especially in the anterior, medial, and dorsal regions, said Dr. Brontë-Stewart. If a patient’s gait and akinesia worsen with high-frequency STN DBS, but his or her tremor and rigidity improve, the cause may be diffusion of the stimulatory field into the pallido-fugal fibers before decussation of the pallido-pedunculopontine nucleus (PPN) pathway.
“The combination of STN DBS and medication may lead to lower-extremity dyskinesias,” which may account for gait worsening in some patients, said Dr. Brontë-Stewart. “It is important to look at these patients off medication. It may show that the dyskinesias are interfering with the gait studies, and whether the medication is affecting their cognition, which may also worsen gait.”
Patients’ gait and balance may worsen years after implantation. For example, stimulation-resistant axial symptoms may emerge after five years of DBS even if treatment remains effective for appendicular symptoms. This outcome may follow progression of the disease into nondopaminergic networks. Another possible cause is increased voltage that involves pallido-fugal pathways, thus enlarging the field of stimulation, said Dr. Brontë-Stewart.
For patients with delayed worsening, Dr. Brontë-Stewart advises that “if you reprogram DBS, focusing on gait symmetry, you can improve gait, including freezing of gait. Many of us program DBS for appendicular symptoms, and we fail to do this for gait…. Perhaps use bipolar or interleaving programming to restrict field extension.”
Preoperative improvement in Unified Parkinson’s Disease Rating Scale Part III scores in response to levodopa treatment is the best predictor of the effect of DBS on gait and freezing of gait. Improvement in freezing of gait following STN DBS has, in turn, been related to reduced medication dosing and lack of worsening of cognition, concluded Dr. Brontë-Stewart.

An Initial Approach to Vocal Tremor

The literature suggests that in patients with Parkinson’s disease, STN DBS often results in deterioration of speech that may not improve when the stimulation is stopped. Predictors of vocal problems include presurgical dysarthria, duration and severity of presurgical disease progression, and contact placement around the left STN.
“There is no large evidence base upon which to work when you are trying to … deal with someone who comes to you with speech problems,” said Bryan T. Klassen, MD, Assistant Professor of Neurology at the Mayo Clinic in Rochester, Minnesota. Addressing potential speech problems before implantation “should be a major part of any DBS protocol,” he added. A neurologist should document a patient’s pre-existing speech issues carefully. At Mayo Clinic, all patients scheduled to undergo implantation visit a speech pathologist first, and the examination is recorded.
In addition, patients need to understand that vocal tremor may be a symptom of Parkinson’s disease and may not result from DBS. On the other hand, neurologists also should inform patients that inserting the leads may cause dysarthria even before the battery for the device is implanted. Patients ultimately may have to choose between optimal tremor control and optimal speech, said Dr. Klassen.

Disease-Related Vocal Abnormalities

When a patient presents with speech problems, the neurologist must determine whether they result from the disease or from stimulation. Symptoms that have responded insufficiently to DBS are likely related to the disease, as are symptoms consistent with disease progression, such as gradually progressive dysarthria. These symptoms may respond to more aggressive stimulation. A patient with worsening hypokinetic dysarthria, however, may not improve, and could worsen, with more aggressive stimulation.
No clear criteria can help a neurologist determine whether to consider abnormal speech nonresponsive to stimulation. This determination relies on clinical judgment and should be communicated clearly to the patient, said Dr. Klassen. At that point, the neurologist and patient may consider speech therapy.

Stimulation-Related Vocal Abnormalities

DBS implantation itself sometimes causes dysarthria that may improve over the course of weeks or months. Implantation also may worsen pre-existing dysarthria. “That [side effect] does not necessarily have to limit what or how you are stimulating for tremor control,” said Dr. Klassen. If the symptom results from stimulation, it will improve when stimulation is stopped. It may take as little as a few seconds or as long as several weeks for vocal abnormalities to improve, but tremor worsens while stimulation is turned off.
A neurologist should locate the source of any stimulation-dependent vocal abnormality so that he or she can focus the stimulation field on that source. Although the left lead tends to be implicated in vocal abnormalities more often than the right lead, the neurologist needs to determine the leads’ contributions empirically by turning the leads off individually. “Depending on the washout [period], that may take more time than you would like,” said Dr. Klassen.
A review of the initial monopolar thresholds can indicate which regions along the electrode tend to affect speech the most. Postoperative imaging may help in this determination. If the patient has a prolonged washout period, the neurologist can give him or her “homework,” said Dr. Klassen. To do this, the neurologist sets the DBS device to run several programs and asks the patient to record his or her experiences in a notebook.

Optimizing the Stimulation Settings

Vocal abnormalities that arise after surgery may indicate that the stimulation parameters need to be modified. First, neurologists must choose the optimal lead location along the electrode. Eccentric steering or multiple-source current steering may reduce vocal tremor by better defining the distribution of current. To reduce the volume of tissue activated, the neurologist can increase the pulse width, reduce the amplitude, or switch to a bipolar configuration. If a particular setting causes side effects, reducing the voltage may increase tolerability, albeit at the expense of efficacy. Switching from a high frequency to a low frequency also may reduce vocal tremor.
If it is impossible to control limb tremor and vocal abnormalities optimally with a single setting, the patient may choose the setting that provides the most acceptable overall control. Another option is to allow the patient to switch as necessary between a program optimized for tremor control and one optimized for speech. A patient may also choose to turn stimulation on and off as needed. Finally, adjunctive speech therapy can reduce vocal tremor, said Dr. Klassen.
—Erik Greb

Suggested Reading

Fasano A, Aquino CC, Krauss JK, et al. Axial disability and deep brain stimulation in patients with Parkinson disease. Nat Rev Neurol. 2015;11(2):98-110.
Fleury V, Pollak P, Gere J, et al. Subthalamic stimulation may inhibit the beneficial effects of levodopa on akinesia and gait. Mov Disord. 2016;31(9):1389-1397.
Khoo HM, Kishima H, Hosomi K, et al. Low-frequency subthalamic nucleus stimulation in Parkinson’s disease: a randomized clinical trial. Mov Disord. 2014;29(2):270-274.
Matsumoto JY, Fossett T, Kim M, et al. Precise stimulation location optimizes speech outcomes in essential tremor. Parkinsonism Relat Disord. 2016;32:60-65.
McNeely ME, Hershey T, Campbell MC, et al. Effects of deep brain stimulation of dorsal versus ventral subthalamic nucleus regions on gait and balance in Parkinson’s disease. J Neurol Neurosurg Psychiatry. 2011;82(11):1250-1255.
Moreau C, Defebvre L, Devos D, et al. STN versus PPN-DBS for alleviating freezing of gait: toward a frequency modulation approach? Mov Disord. 2009;24(14):2164-2166.
Østergaard K, Aa Sunde N. Evolution of Parkinson’s disease during 4 years of bilateral deep brain stimulation of the subthalamic nucleus. Mov Disord. 2006;21(5):624-631.
Ricchi V, Zibetti M, Angrisano S, et al. Transient effects of 80 Hz stimulation on gait in STN DBS treated PD patients: a 15 months follow-up study. Brain Stimul. 2012;5(3):388-392.
Vercruysse S, Vandenberghe W, Münks L, et al. Effects of deep brain stimulation of the subthalamic nucleus on freezing of gait in Parkinson’s disease: a prospective controlled study. J Neurol Neurosurg Psychiatry. 2014;85(8):871-877.


Dodgers Paint Seat Where Kirk Gibson Home Run Landed, Tickets Raise Money To Fight Parkinson's

March 19, 2018

The Los Angeles Dodgers have announced plans to paint Seat 1, Row D in Section 302 of Dodger Stadium. The seat marks the spot where Kirk Gibson's home run landed to win Game 1 of the 1988 World Series and all tickets sold for that seat will raise money to fight Parkinson's Disease, according to Dodger Insider.
Gibson will also sign the seat. Tickets are expected to go for about $150, according to Eric Stephens of True Blue LA.
Gibson was diagnosed with Parkinson's Disease in 2015 but did not publicly reveal his diagnosis in 2016. The Kirk Gibson Foundation raises money and awareness for Parkinson's Research as well as other neurological disorders including ALS, Dementia and Alzheimer's.
Watch the home run below:
With this year marking the 30th anniversary of his iconic home run, Gibson is slated to throw out the ceremonial first pitch before Opening Day on March 29. The team will giveaway a bobblehead of Gibson before the second game of the season.

New Parkinson’s Collaboration Is Exactly What’s Needed, Editorial Says


So much Parkinson’s-related biomarker information has been collected under various research projects that sorting through it for additional clues to the disease poses a challenge to scientists.
The scope of the information makes a collaborative research effort paramount — and a U.S. government-sponsored initiative is meeting that need, according to an editorial in the journal The Lancet Neurology. The initiative is also focusing on therapy development.
It praised the Accelerating Medicines Partnership on Parkinson’s disease as the most ambitious effort so far to find a cure for Parkinson’s.
Led by the Foundation for the National Institutes of Health (NIH), the collaboration includes the US Food and Drug Administration (FDA), five biopharmaceutical and life science companies, and one non-profit foundation.
The aim of the partnership, formed on Jan. 30, 2018, is to discover new therapies for the disease plus new biomarkers that can predict its progression and whether treatments are working.
Samples include cerebrospinal fluid (CSP), RNA, blood plasma and DNA samples from more than 3,000 patients and more than 1,700 healthy controls.
“These initiatives have highlighted a shared interest between public and private organisations, and the data being generated present an opportunity to drive biomarker development more intensively than to date for translation into more effective therapies,” the editorial said.
The biosample information could help scientists identify new biomarkers, but its huge scope has posed a challenge to both researchers and companies. 
Despite major investments, companies have yet to come up with disease-modifying Parkinson’s therapies — those can delay progression or relapses. Collaboration may be the way to achieve breakthroughs.
The Accelerating Medicines Partnership researchers will be digging into the large amounts of data to identify the most promising biomarkers of disease progression, which can then be used to validate new treatments.
Importantly, both the data and analyses will be shared with the broader research community in a platform called the AMP PD Knowledge Portal
The portal will also incorporate data from two ongoing Phase 3 clinical trials in patients with early Parkinson’s disease. One is the Study of Urate Elevation in Parkinson’s disease (SURE-PD3; NCT02642393) and the other the Efficacy of Isradipine in Early Parkinson Disease (STEADY-PD3; NCT02168842).
In addition, the portal will enable the rest of the research community to participate in the collaborative effort and share their results.
“Sharing results from analyses of Phase 3 data via the knowledge portal will provide the opportunity to conduct analyses on a scale that could not be performed by a single partner alone,” according to the editorial.
The program will have three stages. The first, expected to end within 18 months, will create the working groups, the knowledge portal, and further analyze RNA from patients to identify potential biomarkers.
The second stage, expected to take three years, will pursue additional large-scale biomarker discovery to categorize patients, monitor their disease progression, and predict their outcomes. It will also identify Parkinson’s biomarkers that are common among cerebrospinal fluid, plasma, and brain tissue.
The last stage will validate the most promising biomarkers.
NIH will manage the partnership with GlaxoSmithKline, the Michael J Fox FoundationNINDSPfizerSanofiCelgeneVerily Life Sciences and the FDA, and coordinate the pledged investment of $24 million over five years. 
“Bringing together the collective capabilities and resources across public and private sectors offers the best opportunity to identify and address challenges in early-stage drug development and thus the best opportunity for finding a cure,” the editorial concluded.

Parkinson’s Disease and the ‘C’ Word


You’ve seen the commercials about diarrhea. It’s not something to be embarrassed about, but we try to make light of it by calling it by some other name like the runs, the squirts, the trots, Montezuma’s revenge, or the really polite word: dysentery. When it comes down to it, they all mean the same thing: RUN!
The blessing of Parkinson’s disease is we don’t have to deal with the trots or the squirts as others do. We get to deal with that other word we don’t want to talk about: constipation. You know, that plugged up feeling you get in which you have to poop but you can’t. And for people with PD, this can be a real stopper. When you’re at that place of blockage, you want to get some of that miracle stuff they advertise and be one of the “thousands who poop with ease.”
What to do?
There is no miracle pill, and you don’t want yet another medication. And as user-friendly as marketers want you to believe Metamucil (psyllium) is, if you’ve got PD, get rid of it. For whatever reason, it hardens once digested in a person with PD and will only make things worse. MiraLax (polyethylene glycol 3350) is a good substitute. It is a clear, fairly inexpensive liquid, and is recommended by doctors to ready patients for colonoscopies. And it is safe for adults.
Your diet plays a crucial part in this war against being plugged up. If possible, stay away from white bread, pasta, and rice, and replace them with whole grains and brown rice. Don’t forget what your mother told you: Eat your fruits (figs and dates are great) and veggies. Lots of them. And just as important is drinking WATER — dehydration can cause constipation.
Constipation also affects medications. It causes the stomach to empty more slowly, disallowing the pills to enter the intestine where they are absorbed more efficiently. Constipation has also been linked to bowel cancer and, really, who wants that? PD is enough.
Another thing you can do is to walk each day, as that has “un-constipational” effects (did you like that big, made-up word?). Also, try rocking when seated on the commode, and I don’t mean like in a rocking chair. Lean to the right and then the left slowly as that helps to move the muscles associated with making a good poop. I also saw a video of a woman demonstrating how to poop easier (she was just demonstrating, not actually pooping), and she suggested rubbing your lower back and lower abdomen to try to help things along.
Whatever you do, don’t take constipation lightly. Tell your doctors. Recently, I spoke with a woman who along with having PD was diagnosed with colon cancer. It went undetected for some time, as she and her neurologist thought she was just having constipation issues. Perhaps. But at some point, that changed.
So, keep on top of your bowel movement situation. If it changes, tell your doctor. If you’re struggling, tell your doctor. If you’re in pain, tell your doctor. If you can’t poop, tell your doctor. Don’t be embarrassed. If you can’t seem to broach the topic, just print out this article and hand it to them and say with pleading eyes, “Help.”
Doctors are there to help things run smoothly for you, so stop straining and start smiling.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

GeneFo’s Guide Can Help Parkinson’s Patients Apply for Medical Cannabis


GeneFo has created a free state-by-state guide for Parkinson’s patients with detailed and relevant information on medical cannabis, including the application process.
Updated to March 2018, the guide may help patients get additional therapy and improve their lives. It includes legal information, patient’s rights, an application checklist, links and forms to download, and important tips for each state.
Although cannabis remains federally illegal in the U.S., many states have legalized cannabis for valid medical purposes. As of March 2018, 16 states consider Parkinson’s disease a qualified condition, and 13 states qualified symptoms that may occur in Parkinson’s, such as pain, nausea, and muscle spasms.
“However, the process of getting a card approval is not smooth in most states, and requires gathering information and documents, clinical certifications, and administrative forms,” Neer Ziskind, CEO of GeneFo, said in a press release.
Genefo, an online platform with free Parkinson’s resources and clinical trial matching, created the comprehensive guide to help patients and caregivers navigate the process.
For most states, to qualify for medical cannabis, patients must:
  • have proof of residence in that state.
  • possess legitimate medical records from a primary care doctor describing their diagnosis.
  • have a certification from a doctor from that state saying the patient has a qualified condition, such as Parkinson’s, or qualified symptoms, such as chronic pain, nausea, tremors, that would likely improve with medical cannabis.
  • register with the state’s Department of Health and often in the state’s “Medical Marijuana Program” to obtain a medical marijuana card. Registration fees range from $38.50 to $100, depending on the state.
Some states require that caregivers also be registered.
Current therapies for Parkinson’s disease can help manage symptoms, but are often associated with adverse events. The use of alternative therapies, such as cannabis — also called marijuana — are increasing among Parkinson’s patients to help improve their symptoms.
Numerous studies have been conducted on cannabis and its active components as a potential treatment for several neurodegenerative conditions. While not entirely conclusive, research on cannabis shows promise for people with Parkinson’s disease.
A study published in Clinical Neuropharmacology showed that cannabis reduced tremors and pain, and improved sleep quality in Parkinson’s patients within 30 minutes of consumption. Other studies have also found evidence of cannabis’ benefits in this patient population, including recent results published in the European Journal of Internal Medicine reporting that medical cannabis is a safe and effective way for older people to alleviate symptoms of Parkinson’s, cancer, and other diseases, particularly pain.
However, the lack of robust clinical data prevents doctors from recommending it because its effects on patients are not fully understood. Before being widely accepted as a therapy, larger, more adequate clinical trials are necessary to confirm its benefits in Parkinson’s patients. And major efforts are starting to move in that direction.
Full access and detailed information for GenFo’s guide to medical cannabis is available here.
“We trust that this free resource will help more PD patients secure an additional therapeutic avenue and improve their daily living,” Ziskind said.