Lecture on new Advances in DBS Pasadena January 2018

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Presentation on New Advances in DBS treatments

January 9, 2018

Deep brain stimulation (DBS) therapy has been proven over the past 20 years* to be an effective treatment option for symptoms of Parkinson’s disease. The latest advancements to DBS offer innovations in the way the therapy is delivered and how it is controlled. Attend this free informational seminar to learn more about DBS therapy, including the benefits and risks of this therapy. Call 323-326-4158 or email jsykes@sjm.com to reserve your spot.

Igor Fineman, MD, FACS
Jennifer Birch, RN, MSN, ACNP-BC
Raymond Neurosurgery & Spine
Yvette Yeung, MD | DaVita Healthcare Partners
Tyler Cheung, MD | Huntington Hospital

January 9, 2018 | 6:00 p.m. – 8:30 p.m.
South Pasadena Public Library Community Room
1115 El Centro Ave
Pasadena, CA 91030

Autoimmunity and Parkinsons Disease

Researchers have found the first direct evidence that autoimmunity — in which the immune system attacks the body’s own tissues — plays a role in Parkinson’s disease, the neurodegenerative movement disorder. The findings raise the possibility that the death of neurons in Parkinson’s could be prevented by therapies that dampen the immune response.

The study, led by scientists at Columbia University Medical Center (CUMC) and the La Jolla Institute for Allergy and Immunology, was published today in Nature.

“The idea that a malfunctioning immune system contributes to Parkinson’s dates back almost 100 years,” said study co-leader David Sulzer, PhD, professor of neurobiology (in psychiatry, neurology and pharmacology) at CUMC. “But until now, no one has been able to connect the dots. Our findings show that two fragments of alpha-synuclein, a protein that accumulates in the brain cells of people with Parkinson’s, can activate the T cells involved in autoimmune attacks.

“It remains to be seen whether the immune response to alpha-synuclein is an initial cause of Parkinson’s, or if it contributes to neuronal death and worsening symptoms after the onset of the disease,” said study co-leader Alessandro Sette, Dr. Biol. Sci., professor in the Center for Infectious Disease at La Jolla Institute for Allergy and Immunology in La Jolla, Calif. “These findings, however, could provide a much-needed diagnostic test for Parkinson’s disease, and could help us to identify individuals at risk or in the early stages of the disease.”

[Read more…]

Join the online clinical study

Have you heard of the NEW  online study that empowers people with PD to partner  with researchers and accelerate the development of break-though treatments?

The MJ Fox foundation has a new program called FOX INSIGHT.

It’s open to anyone with or without PD.

To learn more about it, go to: https://foxinsight.michaeljfox.org

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

 

You can be the unexpected artist with PD

CAN YOU IMAGINE…..

 Chip Colley was an outdoorsman, not an artist. “I had friends who were artists, but I couldn’t paint at all,” he says.

Colley grew up fishing with his father on the Escambia Bay near his hometown of Pensacola, Florida. When his son, Zachary, was old enough, Colley introduced him to the timeless father-son tradition of pre-dawn angling.

And, when he was first diagnosed with PD, Colley fled to the cypress bog behind his house to reflect on this new, largely unwelcome phase of his life.

Early on in the disease, he was hit hard by bouts of insomnia that would last until three o’clock in the morning. Not a huge fan of television (“It stresses me out.”), he struggled to occupy these sleepless nights.

During the day, Colley frequented the three art galleries in town. He enjoyed perusing the creations of the professional artists until one day, one of those artists came up to him and asked, “Why don’t you try to paint something?”

He initially dismissed the idea outright. “My hands were always shaking so hard that I couldn’t even write my own name,” he says.

However, during one of the endless, empty nights, Colley made a decision that would forever alter his outlook on his disease. He grabbed a sheet of paper and some pencils and began to draw.

To his surprise, the drawings turned out “pretty good.” Colley began to expand his scope, digging through boxes of his children’s old art supplies. “I started painting with anything I could get my hands on,” he says.

He had questions about his newfound penchant for portraiture, but continued to allow his creative juices to flow. The next time Colley went to his neurologist for a checkup, he presented the doctor with a stack of paintings and asked, “What’s this about?”

The physician was impressed, but not surprised by Colley’s prowess. He suggested Colley enroll in a study about PD and creativity being conducted by the University of Florida. “We walked in and they just handed us a bag of art supplies and told us to do our thing.”

Colley’s art has gradually gotten better. He prefers painting and sculpting, sometimes combining the two to create paintings with embossed surfaces. “It’s been great. I’ve met so many people since I started doing art,” he says. “When you’re focused on a project, you tend not to think about your physical problems. It just takes you away.”

His advice for fellow sufferers: “Pick up a paintbrush, dance, sing. Do anything you want, but do not just sit there. Enjoy your life. I’m considered an artist now. I would never have dreamed it in a million years.”

 

PD Education opportunities from your home

DECEMBER 2017

PD EDUCATION FROM HOME

MJ Fox- Third Thursday Webinar

Title: 2017 Parkinson’s Research Year in Review

Date: Thursday, December 14, 2017

Time: 9 am – 10 : 30 am ( PST)     Duration:  1 hour  30 minutes

TO REGISTER: Copy and paste the link below:                                                                                                                                                                                                                                                    LINK: www.michaeljfox.org/understanding-parkinsons/webinar-registration.

In this extended 90 minute webinar, it covers advances in the understanding of PD and development of new treatments.

———————————————————————————

Title: Treating the Non-Motor Symptoms of Parkinson Disease with LSVT BIG® and LSVT LOUD® 

Date: Wednesday, December 6, 2017
Time:  11 AM – 12 noon

TO REGISTER:  copy and paste the link below LINK: https://attendee.gotowebinar.com/register/3058086365585295617

——————————————————————————-

PD Telephone at home

 TOPIC: Hallucinations  and Delusions in PD 

Speaker: Caitlan Mulligan, MD Movement Disorder Fellow

Date: December 11, 2017,

 Time: 10:00 am – 11:00 am (PST)

Call:  1-800-767-1750  and enter the code: 54321#   (call in about 3 min prior to the hour) Webinars are 2nd Tuesday of each month


PD Expert Briefing    

No Webinar in December

———————————————————

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

 

The importance of TIME in your life

SOME THOUGHTS DURING THIS HOLIDAY SEASON

 

Value your time

Once a moment is gone, you cannot get it back. Spend each one wisely, with intention, with purpose, with meaning.

Your time is more precious than just about anything else you have. For it is with time that you create, access and experience all else.

Don’t let yourself be tricked into providing it too cheaply. What appears to be a bargain in terms of money can end up imposing a terrible cost on your irreplaceable time.

Do you constantly feel you have too little time? That’s a strong indication you’re not placing a high enough value on the time you have.

Each day comes to you with plenty of time for rich, creative, meaningful living. Hold every moment to a high standard, and insist on spending them all engaged in what truly matters.

Time is your opportunity to fill life with great treasure. Make good and meaningful use of every single minute.
— Ralph Marston

 

 

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

Reminders for everyone as we enter the Autumn Season

 

Take time to readjust your body, as we enter Autumn!

Below are some good reminders!

Falling leaves and early sunsets mean autumn is coming. These seasonal changes, like slowness of movement, stiffness and rigidity throughout the body, can increase the risk of falling.

We know that Falls are a risk for everyone! . Below are some things you can do to prevent falls this autumn AND general tips for the tranisiton between

Summer to Autumn.

🍁 Readjust to the time change faster. Each morning, open all shades and make the home as bright as possible. During the day, go for a walk or read outside (bring your sunscreen). At night, try to go to sleep at the same time each day.
🍁 Talk to your health care team. They will help you assess your biggest fall risk factors — like medications, balance issues, stress or environmental hazards.
🍁 See a physical therapist BEFORE a fall occurs. He or she can teach you how to safely get back up and can show caregivers the best way to assist their loved one while avoiding injuries.
🍁 Consider making changes around the house: in the bathroom, use non-skid surfaces and grab bars. In the living room, move coffee tables and clear all walking paths.

The transition from summer to fall can be a challenge. To help ease the change, we have put together 15 Autumn Wellness Tips to get you ready for the colder months and keep your mental (and physical!) health in check.

-Start taking a Vitamin D supplement. We get most of our Vitamin D from the sun, so our intake decreases when the weather is colder since we spend most of our time inside during the fall/winter seasons. If you find you are not getting outside much, a Vitamin D supplement can boost your mood and immune system!

-Take some time to yourself. Autumn and winter are the Earth’s way of telling us to slow down. Start a journal or track your moods to get more in touch with how your feeling.

-Get your flu shot and yearly check-up. Self explanatory! No one likes sniffling and aching and sneezing and coughing getting in the way of life. Yuck.

Boost your immune system. You can do this by drinking plenty of water, washing your hands often to prevent sickness, and eating nutritious foods.

-Get yourself ready for Daylight Savings Time. Go to bed earlier when you can, especially the week before the clocks change. Longer periods of darkness = longer periods of sleep!

(Don’t forget to change any manual clocks (like an alarm clock!)

-Make some plans for the cold months. In the winter, we tend to hibernate if we don’t have things to keep us busy.

-Moisturize your skin. Harsh temperatures can make your skin dry. Also, you still should be wearing sunscreen.

-Buy in-season food. Beets, broccoli, cabbage, eggplant, kale, pumpkin, broths, roasted squash, roots and sautéed dark leafy greens are all great choices.

-Stay active! It can be easy to just sit around all the time, but it’s important to get in some movement throughout the day. Raking leaves or shoveling snow counts!

-Wear layers and protect your body from the dropping temperature. Make sure you have gloves, a scarf, ear muffs, a winter coat, warm socks, and snow boots!

-Do some “spring cleaning” in the fall. Clean out your closet, organize that back room, and rid yourself of things you don’t need.

-Prepare your home for possible extreme weather conditions. Do you have a shovel and/or snow blower? Do your flashlights have batteries? Is your heat working okay?

-Get some books to read and shows to watch. Who doesn’t want to sit by the fire on chilly winter nights and read a good book or binge-watch some Netflix?

-Keep a schedule. The cold months can seem to drag on and push us into isolation. Stay on track by scheduling time in your day to do things you like to do.

-Be kind to yourself. The holidays can cause weight gain, the shorter days can cause low mood, and the flu season can cause sickness. Listen to your body and give it what it needs, and don’t beat yourself up! Try reframing negative thoughts into positive ones.

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

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Shop with AmazonSmile and Support The NeuroCommunity Foundation

Did you know that you can support The NeuroCommunity Foundation through your everyday online purchases? Amazon.com has a charitable program called AmazonSmile. It is a simple and automatic way for you to support The NeuroCommunity Foundation every time you shop, at no cost to you.

When you shop at AmazonSmile, you’ll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added bonus that the AmazonSmile Foundation will donate 0.5% of the purchase price to The NeuroCommunity Foundation!

It’s simple:

1) Go to AmazonSmile from the web browser on your computer or mobile device.
2)Login with your amazon.com username and password or create one if you are a new user.
3) Search for The NeuroCommunity Foundation in the search box on the right side where it asks which charity you would like to support.
4) Select The NeuroCommunity Foundation from the search results or type in The NeuroCommunity Foundation should the select not include our organization.
Happy shopping and thank you for supporting The NeuroCommunity Foundation

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Northridge Foundation For Neurological Research & Education

Smile with Back to School shopping

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
2. Follow the easy steps to create an online account
3. You will be instructed to go to your email inbox to confirm your account
4. After you confirm your online account by clicking on the link in your email, return to
www.ralphs.com and click on ‘Sign In’, enter your email address and password.
5. View all your information and edit as necessary
6. Link your card to your organization by clicking on:
a. Community Rewards – Enroll
b. Type our NPO number 82287 or Neurocommunity.org
c. Remember to click on the circle to the left of your organizations’ name
d. Click on Enroll to finish your enrollment process

IF YOU HAVE ALREADY REGISTERED YOUR REWARDS CARD ON-LINE
(This means that you have already entered your email address and assigned yourself a password)

1. Log in to www.ralphs.com
2. Click Sign In
3. Enter your email address and password
4. Click on ‘Your Name’ (In the top right hand corner)
5. View all your information and edit as necessary
6. Link your card to your organization by clicking on:
a. Community Rewards – Re-Enroll
b. Type your NPO number or Name of your Organization
c. Remember to click on the circle to the left of your organizations’ name
d. Click on Enroll to finish your enrollment process