Parkinson’s disease and Dystonia

Dystonia and Parkinson’s Disease

Have you ever experienced a painful cramped foot or curled, clenched toes as part of life with Parkinson’s? These symptoms can often be a tell-tale sign of dystonia — sustained and often painful muscle twisting, spasms and cramps. Dystonia can be an early symptom of PD, or it can develop later, as a side effect of levodopa.

People with Parkinson’s commonly experience dystonia as a cramp in the foot that causes the toes to curl and stay clenched. In fact, in some people, a foot dystonia induced by walking or running may be one of the very first signs of the illness.

More commonly people who are being treated for PD complain of painful dystonia of the foot on the more severely affected side. This painful cramp usually goes away after the first dose of PD medications. Less commonly in treated patients, dystonia can affect other body parts and come and go throughout the day.

Dystonia can affect other parts of the body too. It causes forceful twisting movements that, for example, can draw a person’s arm behind their back, or pull the head to the side or toward the chest. These movements are different from the flowing, writhing movements of dyskinesia, which are not painful.

Although people with PD sometimes have dystonia, it also is its own movement disorder — people can have dystonia without having PD. Whether dystonia is part of PD or not, it is caused by changes in an area of the brain called the basal ganglia, and is often treated with the same medications.

Common Symptoms

Pain. The twisting and cramping of muscles in dystonia are among the most painful symptoms experienced by people with PD.

Parts of the body affected by dystonia:

Arms, hands, legs and feet: involuntary movements and spasms.

Neck: may twist uncomfortably, causing the head to be pulled down, or to one side. This is called cervical dystonia or spasmodic torticollis.

Eyes: muscles around the eyes may squeeze involuntarily, leading a person to blink too much or to have difficulty opening the eyes.

Vocal cords and swallowing muscles: a person’s voice may sound strangled, hoarse or breathy.

Face and jaw: the jaw may open or close forcefully or there may be grimacing of the face.

[Read more…]

Clinical Study in Woodland Hills on Depression

ARE YOU SUFFERING FROM DEPRESSION?  ? ARE YOU OVER THE AGE OF 60?

Study in Woodland Hills at the UCLA  Satellite office – Motion Picture TV Fund building.

The UCLA Late-Life Mood, Stress and Wellness Program in the Geriatric Psychiatry Division is conducting a 6-month research study involving 12 weekly 60 minute session of either a health and education wellness class or a Tai Chi class. Participants will undergo two functional magnetic resonance imaging (fMRI) scans. A complete psychiatric evaluation will be provided. Subjects will not be charged for participation and will be compensated. You must be at least 60 years old.

If you or anyone you know is interested in participating, call for an appointment to see if you qualify or for more information at: (310) 794-9523.

.In the San Fernando Valley, the study will be conducted at the Motion
Picture Television Fund in Woodland Hills for most of the study

NOTE:There is a baseline trip to UCLA required in order for the subject
to be consented by the Primary  Investigator and get an MRI/blood draw. Additionally, the  subject would have to come in to UCLA near the end of the
study for a final assessment.

The study will be conducted by Helen Lavretsky, M.D. Protocol ID:IRB#15-000184 UCLA IRB Approved

The NeuroCommunity Foundation is here for you:

For information about Parkinson’s disease and other movement disorders, support groups, wellness programs, education events, and local resources in northern Los Angeles County, Ventura County, Central Coast & Central Valley, contact us here or call 818-745-5051 to speak with Jan D. Somers, MSW, LCSW, BCD, Education Director, Parkinson & Movement Disorder Information Center, The NeuroCommunity Foundation.

The NeuroCommunity Foundation is a non-profit foundation. We provide support groups, educational conferences, resources, research updates/ clinical trials information and PD events in the SFV/Ventura/Central Coast/ Inland Empire.

As we rely on donations to continue providing these services at no charge, if you would like to support our efforts, you can donate with ease and security at our website or mail us your gift. Please make sure and note our website as a bookmark in your computer. It is:  www.neurocommunity.org 

The NeuroCommunity Foundation is exempt from Federal income tax under section 501(c)(3) of the Internal Revenue Code. Donors may deduct contributions to the foundation as provided in section 170 of the Internal Revenue Code.

Mailing Address: 

The NeuroCommunity Foundation                            

23705 Vanowen St. # 216                              

West Hills, CA 91307

Ask the Pharmacist about new medication for Dyskenesia

Ask the Pharmacist: New drug approved for Parkinson’s treatment

Dr. Richard Hoffman 

Q: I heard that a new drug was approved for Parkinson’s disease. What can you tell me about it?

A: The U.S. Food and Drug Administration (FDA) recently approved Gocovri (amantadine extended-release capsules) for the treatment of dyskinesia in patients with Parkinson’s disease (PD) receiving levodopa-based therapy, with or without other dopaminergic medications.

Dyskinesias are unpredictable, unwanted and uncontrollable writhing, dance-like movements of the arms, legs or head. They occur in over half of all PD patients who take levodopa for four to six years, and increases to more than 90 percent of those patients who take levodopa for a decade or longer. In clinical studies Gocovri, when given once daily at bedtime, significantly reduced the incidence of dyskinesias and increased functional time with symptoms improved in patients with PD.

The most common side effects observed in studies of Gocovri were hallucinations, dizziness, dry mouth, peripheral edema, constipation, falls and decreased blood pressure upon arising (orthostatic hypotension).

It should be noted that immediate-release amantadine is an anti-viral agent that has been available for many years to treat or prevent the flu. It has also been used “off-label” to treat patients with PD, where it is given 2-3 times daily; however, clinical comparisons between Gocovri and generic immediate-release amantadine have not been studied.

Gocovri is the first and only FDA-approved medication for the treatment of dyskinesia in PD patients. As such, there will likely be a large cost difference between Gocovri and generic amantadine immediate release.

Dr. Richard P. Hoffmann, Pharm D, is a retired pharmacist and medical writer with over 40 years of experience. He currently serves as consumer representative on the FDA’s Advisory Committee for Peripheral & Central Nervous System Drugs and is a patient representative for FDA Advisory Committees related to Parkinson’s disease. Dr. Hoffman is also a research advocate for the Parkinson’s Disease Foundation.

The NeuroCommunity Foundation is here for you:

For information about Parkinson’s disease and other movement disorders, support groups, wellness programs, education events, and local resources in northern Los Angeles County, Ventura County, Central Coast & Central Valley, contact us here or call 818-745-5051 to speak with Jan D. Somers, MSW, LCSW, BCD, Education Director, Parkinson & Movement Disorder Information Center, The NeuroCommunity Foundation.

The NeuroCommunity Foundation is a non-profit foundation. We provide support groups, educational conferences, resources, research updates/ clinical trials information and PD events in the SFV/Ventura/Central Coast/ Inland Empire.

As we rely on donations to continue providing these services at no charge, if you would like to support our efforts, you can donate with ease and security at our website or mail us your gift. Please make sure and note our website as a bookmark in your computer. It is:  www.neurocommunity.org 

The NeuroCommunity Foundation is exempt from Federal income tax under section 501(c)(3) of the Internal Revenue Code. Donors may deduct contributions to the foundation as provided in section 170 of the Internal Revenue Code.

Mailing Address: 

The NeuroCommunity Foundation                             

 23705 Vanowen St. # 216                               

West Hills, CA 91307

Current clinical trials in California

 PD RESEARCH/TRIALS/STUDIES

CLICK on the CITY for detailed information

California

For detailed information on the following clinical trials, Copy and paste:   www.centerwatch.com/clinical.com  into your server and you will be taken to CenterWatch website

CLINICAL TRIALS by LOCATION

Garden Grove California 92845

Collaborative Neuro Science Network
Open Label Parkinson’s clinical research study

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Glendale California 91206

PAREXEL
Patients are needed to participate in a Phase 1 clinical research study evaluating a potential new treatment for Parkinson’s disease.

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Fountain Valley California 92708

A clinical trial to evaluate treatments using Amantadine ER Tablets and Placebo Tablets for patients with Parkinson’s Disease or Levodopa Induced Dyskinesias (LID)

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Fountain Valley California 92708-5153

A Phase 2 clinical study for patients with Parkinson’s Disease

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Fountain Valley California 92708

Patients are needed to participate in a clinical research study of Amantadine HCl ER (ALLAY-LID II) and Placebo to evaluate Parkinson’s disease or Levodopa Induced Dyskinesia (LID)

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Fresno California 93710

A Phase 2 clinical study for patients with Parkinson’s disease

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Irvine California

A clinical trial to evaluate treatments using Amantadine ER Tablets and Placebo Tablets for patients with Parkinson’s Disease or Levodopa Induced Dyskinesias (LID)

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Irvine California

Patients are needed to participate in a clinical research study of Amantadine HCl ER (ALLAY-LID II) and Placebo to evaluate Parkinson’s disease or Levodopa Induced Dyskinesia (LID)

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La Jolla California 92037

A clinical study for patients with Parkinson’s Disease

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Los Angeles California 90048

A clinical trial seeking patients for a research study for the treatment of Parkinson’s Disease (EPI-589)

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Los Angeles California 91403

Patients are needed to participate in a clinical research study for the treatment of All Diagnosed Health Conditions

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Pasadena California

A clinical trial to evaluate treatments using Amantadine ER Tablets and Placebo Tablets for patients with Parkinson’s Disease or Levodopa Induced Dyskinesias (LID)

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Pasadena California

Patients are needed to participate in a clinical research study of Amantadine HCl ER (ALLAY-LID II) and

Placebo to evaluate Parkinson’s Disease or Levodopa Induced Dyskinesia (LID)

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Reseda California

A clinical trial to evaluate treatments using Amantadine ER Tablets and Placebo Tablets for patients with Parkinson’s Disease or Levodopa Induced Dyskinesias (LID)

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San Diego California 92037

A clinical research study of BIIB054 and Placebo for the treatment of Parkinson’s Disease

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San Francisco California 94115

A clinical trial seeking patients for a research study for the treatment of Parkinson’s Disease (EPI-589)

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San Francisco California 94115

Patients are needed to participate in a clinical research study evaluating Activa PC+S for the treatment of Parkinson’s Disease or Primary Dystonia

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San Francisco California 94121

Patients are needed to participate in a clinical research study of interventional MRI for implantation of DBS electrodes and DBS electrodes to evaluate Parkinson’s Disease or Dystonia

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Valencia California 91355

Patients are needed to participate in a clinical research study of Deep Brain Stimulation to evaluate Parkinson’s Disease

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Ventura California

A clinical trial to evaluate treatments using Amantadine ER Tablets and Placebo Tablets for patients with Parkinson’s Disease or Levodopa Induced Dyskinesias (LID)

————————————————-

Ventura California

Patients are needed to participate in a clinical research study of Amantadine HCl ER (ALLAY-LID II) and Placebo to evaluate Parkinson’s disease or Levodopa Induced Dyskinesia (LID)

 

 

 

 

 

 

 

 

Research done for PD at International Space Station

 

Key Parkinson’s Protein Gets Starring Research Role on International Space Station

Posted: JULY 21, 2017  in Parkinson’s Today , Social Clips

When a resupply mission lifts off in August bound for the International Space Station, it will be carrying an important cargo for researchers studying Parkinson’s disease: a protein considered  to be a key to potential future therapies.

The leucine-rich repeat kinase 2 (LRRK2) protein will be the focus of an experiment conducted on the Space Station. It is hoped that the microgravity conditions aboard the Space Station will allow growth of larger, more regular LRRK2 protein crystals, which would help scientists solve the protein’s structure — providing valuable information for the design of optimized therapies to fight Parkinson’s disease (PD).

[Read more…]

New Research information for PD

PD Research news. Click on the colored link to take you there directly. 

Parkinson’s News Today: Researchers Discover Why Deep Brain Stimulation Causes Weight Gain in Parkinson’s Patients

Parkinson’s News Today: “Is Parkinson’s Disease Triggered by a Protein in the Stomach?”

Parkinson’s News Today: “Computer Games Under Study as Non-Drug Therapy for Parkinson’s Disease

Parkinson’s News Today: “New Microsoft Watch Can Quiet Parkinson’s Tremors

Parkinson’s News Today: “Biomarkers for Predicting Cognitive Decline in Parkinson’s Disease May Improve Future Clinical Trials

Parkinson’s News Today: “APDA Partners with Smart Patients to Support Parkinson’s Online Community

The NeuroCommunity Foundation is here for you:

For information about Parkinson’s disease and other movement disorders, support groups, wellness programs, education events, and local resources in northern Los Angeles County, Ventura County, Central Coast & Central Valley, contact us here or call 818-745-5051 to speak with Jan D. Somers, Education Director, Parkinson & Movement Disorder Information Center, The NeuroCommunity Foundation.

The NeuroCommunity Foundation is a non-profit foundation. We provide support groups, educational conferences, resources, research updates/ clinical trials information and PD events in the SFV/Ventura/Central Coast/ Inland Empire.

As we rely on donations to continue providing these services at no charge, if you would like to support our efforts, you can donate with ease and security at our website or mail us your gift. Please make sure and note our website as a bookmark in your computer. It is:  www.neurocommunity.org 

The NeuroCommunity Foundation is exempt from Federal income tax under section 501(c)(3) of the Internal Revenue Code. Donors may deduct contributions to the foundation as provided in section 170 of the Internal Revenue Code.

 

 

 

 

 

 

 

 

 

 

 

PD clinical trials

Clinical Research Trials

Click on the COLORED LINKS and it will take you directly to the website so you may obtain all the information!

1) Genetic Testing  Go to www.michaeljfox.org/ppmi-genetics ( click on colored link to go directly to this website)

2) Dyskinesia research Participation Learn more about trials and studies in dyskinesia by visiting Fox Trial Finder. ( click on colored link)

3) Speeding up to Slow Parkinson’s Down: New Study Shows Exercise Delays PD Progression ( click on colored link)

 

 

 

A new PD Study could pave way for patient specific treatments

A new study is released: This study cites that their analysis produced networks that mapped out how alpha-synuclein is related to other Parkinson’s genes through well-defined molecular pathways. “We now have a system to look at how seemingly unrelated genes come together to cause Parkinson’s and how they are related to the protein that misfolds in this disease,” said Khurana. To confirm their work, the researchers generated neurons from Parkinson’s patients with different genetic forms of the disease. They showed that the molecular maps generated from their analyses allowed them to identify abnormalities shared among these distinct forms of Parkinson’s. Prior to this, there was no obvious molecular connection between the genes implicated in these varieties of PD. “We believe these methods could pave the way for developing patient-specific treatments in the future,” Khurana observed. [Read more…]

Research study in Diagnosing PD

Study Points Toward Diagnostic Test for Parkinson’s

– Jan 20 2017 published in the December 5 online edition of JAMA Neurology,

Using a new technology, researchers were able to detect trace amounts of toxic alpha-synuclein protein in the cerebrospinal fluid of people with Parkinson’s disease (PD), but not in people without PD. Furthermore, the amount of the protein increased with severity of PD. The results, suggest that the technique could be developed as a test to diagnose and monitor Parkinson’s disease.

Today, doctors diagnose PD based on a person’s symptoms, including tremor and stiffness. But many PD symptoms can be subtle, especially early on in the disease. Additionally, many PD symptoms can overlap with those of other disorders, making early diagnosis difficult. There is an urgent need for a simple test or biomarker that can definitively diagnose PD. Scientists have looked at the alpha-synuclein protein as a possible biomarker since it’s known to clump in the brain cells of people with PD.

[Read more…]

Diabetes Drug May Be Effective in Treating Parkinson’s

Image result for photo new research

Diabetes Drug May Be Effective in Treating Parkinson’s

Written by David Mills | Published on December 7, 2016                     Journal: Science Translational Medicine

Human trials are expected to begin next year on a drug researchers hope will be the first to slow the progression of Parkinson’s disease.

Can a drug that was originally designed to treat diabetes become the world’s first medication to slow the progress of Parkinson’s disease? Researchers are confident enough in the drug’s ability that they are organizing human clinical trials to begin next year.

“We hope this will be a watershed moment for millions of people living with Parkinson’s disease,” Dr. Patrik Brundin, director of Van Andel Institute’s Center for Neurodegenerative Science, chairman of The Cure Parkinson’s Trust’s Linked Clinical Trials committee, and the study’s senior author, said in a statement.

[Read more…]

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Dear The NeuroCommunity Foundation friends,supporters and participants.

If you happen to shop at Ralphs and would like to support The NeuroCommunity Foundation, we would be most appreciative!. If you do shop at Ralphs, we will receive 1 % of your purchase through their community
contribution program. The NeuroCommunity Foundation's Non-Profit Org. number ( NP0 # ) is 82287

All you need to do is enroll online at www.ralphs.com OR by calling Ralphs at
800-443-4438 after September 1, 2016.

If you happened to enroll prior to Sept 1st, Ralphs requires you to register again.

For your convenience, step-by-step website registration instructions are found below or can be found at www.ralphs.com, click on Community, click on Community Contributions, click on ‘Enroll Now’. If you don’t have computer access, please call us at 1-800-443-4438 for assistance.

Use you Ralph’s Rewards Card to Contribute Here’s How:

If you do not have a Ralph’s online account
1. Go to www.ralphs.com/account/create
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3. You will be instructed to go to your email inbox to confirm your account
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