November Support Groups, Guest Speakers and Featured Articles

NOVEMBER NEWS from The NeuroCommunity Foundation!

DID YOU KNOW???

November 7th: International Tongue Twister Day. …  November 13th:             World Kindness Day —  November 15th: Clean Out Your Refrigerator Day          November 18th: Use less Stuff Day—November 19th: World Toilet Day

NOVEMBER IS NATIONAL CAREGIVER AWARENESS MONTH

 The NeuroCommunity Foundation: Phone: 818-745-5051

Visit our website: www.neurocommunity.org for specific information

Please note: To protect against viruses, we do not provide external links in our emails or on our website. We do provide you the website address! 

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Click green link here:   NOVEMBER PD SUPPORT GROUP LISTINGS

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REMEMBER: KEEP SCROLLING down on each page to locate all website posts.   Support groups  & Guest speakers are listed below!  

PLEASE SHOW YOUR SUPPORT TO THE NEUROCOMMUNITY FOUNDATION by making a donation today. Thank you so very much!

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NEW articles/ information posted on the website this month

PD and Dystonia (PD Interesting articles/research)

New Rules for everyday living & adding fun to your life Give it a TRY!  (Be Inspired)

It’s time to say thank you!  November is National CG Awareness month (Breaking news)

—-Grant programs and financial assistance (MS Wellness)   

 —-Helpful Hints for Grooming (Helpful Information)

Minimizing Stress during the Holidays (Wellness Therapies)  

–Soft robotic exosuits help patients walk after stroke (Stroke Education)

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NOVEMBER GUEST SPEAKERS  for PD Support Groups

CLICK on the SPEAKERS NAME ( GREEN)  for the link  to read about the guest speaker.

 Matt Wolff  LCSW – “Your Path to Greater Personal Empowerment”  (Claremont)

David Russak PT, DPT, BCIS, CSC- “What is Parkinson’s disease and how

do I fight it” (Westlake)   

Holly Sacks  –“Mindfulness and how it helps PD”-(Burbank)

Casey Halpern MD -“DBS-What’s on the Horizon?”  (Santa Barbara) 

Courtney Darrough  Katherine L. Mays, John Macias, Samantha Carnell“Caregiving around the Clock” (Ventura)

Captain Dave Zaniboni, Santa Barbara County Fire Dept. Public Information Officer- “Disaster Response Tactics for the Central Coast, including special needs emergency preparedness.​”

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PD EDUCATION FROM HOME

PD TELEPHONE: Information will be posted on our website when it becomes available.

MJ FOX  WEBINAR  

Topic: Fox Insight: Your Experience Fueling Research

Thursday, November 16, 2017  TIME:  9 a.m. PT

Discussion about the online study Fox Insight and how contributing data through surveys and genetic testing helps direct drug development and approvals.  The future of Parkinson’s research is in powerful hands: yours.

PD EXPERT BRIEFING  Topic: Depression and PD: Treatment Options,  Tuesday, November 21, 2017   

Time: 10:00 am PST 

 Roseanne D. Dobkin, Ph.D.,Associate Professor, Psychiatry, Rutgers, The State University of New Jersey, Robert Wood Johnson Medical School

LSVT:   No webinar in November

The NeuroCommunity Foundation   (818.745.5051)

32705 Vanowen St.  # 216   West Hills, CA  91307 (mailing address only)

Parkinsons Education at Home

PD EDUCATION FROM HOME

MJ FOX WEBINAR 

Topic: Fox Insight: Your Experience Fueling Research

Thursday, November 16, 2017  TIME:  9 a.m. – 10:00 am 

Discussion about the online study Fox Insight and how contributing data through surveys and genetic testing helps direct drug development and approvals.  The future of Parkinson’s research is in powerful hands: yours.

To Register: Go to  www.michaeljfox.org/understanding-parkinsons/webinar-registration

PD EXPERT BRIEFING 

Topic: Depression and PD: Treatment Options,

Tuesday, November 21, 2017   Time: : 10:00 am  ( PST)

Roseanne D. Dobkin, Ph.D.,Associate Professor, Psychiatry, Rutgers, The State University of New Jersey, Robert Wood Johnson Medical School

PD TELEPHONE AT HOME 

When:     2nd Tuesday of every month        10:00 – 11:00 am PT

TUESDAY, NOVEMBER 14th TOPIC:   PD Research Updates

SPEAKER:   Sarah Pirio-Richardson, MD, Movement Disorders Physician at the New Mexico VA HCS, SW PADRECC Consortium Center

AUDIENCE:  For Veterans and their families!

To listen: Call-in:  1-800-767-1750  and enter the Code:  54321#   (call in about 3 min prior to the hour)

LSVT:   No webinar in November

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

Minimize your Stress Level this Holiday Season

 

 

Minimize Stress during the upcoming Holiday Season!

What  you and your caregivers can do to minimize this stress and have at least a chance at enjoying the holidays?

  1. Put first things first. If you’ve always felt depressed during the holidays, caregiving won’t make things easier. If you get depressed from the lack of sunlight in the winter months, see your doctor. There are therapies that can help this syndrome, which is known as Seasonal Affective Disorder (SAD). If you don’t have a problem with the sunlight, but still suffer seasonal depression, talking with a counselor to learn to cope with this depression is often a good idea.
  2. If you have always enjoyed the holidays, but now find them overwhelming because of too many demands on your time, you will need to learn to simplify the season. Yes, that will mean disappointing a few people, perhaps elders and children alike, but simplification is often the only choice you have, if you are to remain somewhat sane.
  3. Learn to detach from the negative feedback you may get from others because of changes you are making. Detaching simply means that you recognize the other person’s feelings, but you will not allow yourself to react or be controlled by their feelings without considering your own needs, as well. You set boundaries by telling others what you can and can’t do. You look at the situation with open eyes, perhaps get some feedback from people you think can help you, and then make your own decisions. Acknowledging your loved ones’ views, and telling them you love them, but simply can’t do it all, generally helps. If your mom says, “But we’ve always done it that way,” you say, “Yes, we have, but now our holiday has to change a little, since our lives have changed.” If your kids lay on the guilt because you can’t bake every kind of cookie they want, let them know that you want to please them, but that your time is limited now, so they can help you by being flexible. If you offer to let them help you, they may feel part of the decision, rather than brushed off. The main idea is that you don’t react to their negativity. Generally, when you stop reacting, other people will calm down.
  4. Use music as a soothing tool for all. If you have elders in nursing homes, bring them a CD player and CDs so they can play old songs they enjoy. Around the house, play Christmas tunes your kids like, but don’t forget your own needs. If you have some favorite holiday tunes on CDs, play those too. However, if you get a sick feeling every time you enter a mall because the Holiday music reminds you of all you have to do, then play other types of music at home. Do consider music of some kind. Classical music can be very therapeutic, religious music helps many, and old rock and roll or country songs may give you a boost.
  5. Soothing light can help most people relax. Obviously, candles aren’t allowed in nursing homes and likely aren’t a good idea for elders or kids. But there are many softly lit holiday decorations you can safely use, or get some indirect lamps for atmosphere. Soft lights, combined with good music, can help calm nearly anyone, including a caregiver. Try it while you bake treats, decorate your home or the elders’ homes, or do other holiday duties.
  6. Meditation can be as simple as getting up early or going to bed late. The idea is to have some quiet time for yourself. Some people like guided meditation, where music or soothing words on CD or DVD help them relax in a progressive manner. Other people prefer going outside, maybe to a park or sitting near water, if possible, to enjoy natural calm. Some folks concentrate on their breathing pattern while they repeat one soothing word. This helps them calm their overactive brain. There’s no right or wrong way to meditate, but numerous studies have shown mediation can have a healthy effect on mood, as well as physical wellbeing. Also, try to eat right and exercise. This is extra hard during the holiday season, but you can feel better if you treat your body right.
  7. Ask your spouse, a friend or relative to take over some of your duties for a time. It’s amazing how many of us think we have to do everything ourselves, even though others would help if we only asked them. When we don’t ask for help, people often don’t know we need help, or else they simply don’t know what to do.
  8. Take a trip down memory lane. Remember your parents when they were young and healthy. Remember your children when they were tiny. Remember the good times before these difficult times. When you do that, you’ll likely find a better balance in your life, because you’ll start to recognize that life is cyclical, and better times will come again.
  9. Allow yourself to feel the pain of your aging parents’ losses. As my elders aged and grew frail, I was deeply saddened by their physical and psychological pain. The holidays threw a spotlight on all the things they could no longer enjoy. This pain is real. Allow yourself to feel it. Write it down. Talk about it with other caregivers, a religious leader, or a good friend. Get it out. It’s natural, human and okay to feel the loss. If you feel bitter or angry, say so. Get it all out and don’t allow shame to enter into the equation. You have a right to all of your feelings.
  10. Let go of perfection. It’s likely that all of those holidays you remember as being so wonderful really weren’t that perfect. Every human being looks at events differently. Time skews our memories. Life wasn’t perfect thirty years ago, twenty years ago or ten years ago. It’s far from perfect now. Do your best with what you have. Take care of yourself along with the others, and your holidays will be as good as they can be. Let that be good enough.

-adapted from article written by Carol Bradley Bursack, Editor in chief, Elderlink

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

 

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

October News and Support Group listings

October News and Support Groups Listings

The NeuroCommunity Foundation

 PHONE NUMBER: 818-745-5051

Visit our website: www.neurocommunity.org for specific information

To protect against viruses, we do not provide links in emails.

REMEMBER: KEEP SCROLLING down on each page to locate all website posts.   Support groups  & Guest speakers are listed below!  

PLEASE SHOW YOUR SUPPORT TO THE NEUROCOMMUNITY FOUNDATION  BY MAKING A DONATION TODAY!

Your gift helps to provide support groups, advocacy, referrals, personal communication with our Education Director and innovative programs to help patients, families and caregivers achieve a better quality of life!!! Donations can be made directly at our website by clicking here: www.neurocommunity.org Checks can be mailed to our address below!

Could you continue to support us when you shop at Ralph’s grocery store?  All participants are required to register for the new term online at www.ralphs.com or by calling us at 800-443-4438 starting September 1, 2017. Even if your participants registered as recently as June, July or August 2017, they are required to register again beginning September 1st.

 For your convenience, step-by-step website registration instructions 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.

CAREGIVER CONFERENCE: FREE @ USC  SATURDAY, OCTOBER 28, 2017 9:00 AM – 2:00 PM  SEE CAREGIVERS CORNER on the WEBSITE for info/ how to register

SONGSHINE TRAINING in OCT ( go to Community Connections)

OCTOBER ARTICLES

CLINICAL  STUDY: Woodland Hills: UCLA Depression Study for persons over the age of 60.

PD RESEARCH: Ask the pharmacist about the new medication for Dyskenesia

WELLNESS : Take time to readjust your body –Autumn Wellness Tips AND How to get rid of tension headaches

CAREGIVING:  Eight ways to see the glass half full!

STROKE: The role of exercise in prevention, rehab and recovery

MS: MS Trial Alert: Investigators in California, Recruiting for Study of Online Program to Treat Depression in All Forms of MS at Cedar-Sinai

TBI: Fitness considerations for patients with TBI

BE INSPIRED: AUTUMN inspirational quotes – take time to breath and see the leaves change!  

HELPFUL INFORMATION: Are you prepared for a crisis? Emergency checklist for you and your family.

COMMUNITY CONNECTIONS: Songshine Foundation -Song Shine Training in October. Register now! Also  read about CSUN internship program and Music Mends Minds program.

CLICK:PD SUPPORT GROUP LISTINGS for OCTOBER Listings  4 pages.

_________________________________________________________

OCTOBER GUEST SPEAKERS at PD SUPPORT GROUPS

CLICK ON THE SPEAKERS NAME for MEET THE SPEAKER informaton

Marcie Lerner: Chocolate Bingo and Round Table: (Claremont PD Support Group)

 Andrew Imbus , Physician Assistant  Evidenced based research for PD  (Westlake)

Annette Swain , PhD. Depression and Apathy in PD (LIVE WIRES DBS –Burbank)

 Holly Sacks , Mindfulness Meditation for PD (Simi Valley)

Barbara Wogh  RN, Holistic Health/ Being your own advocate and Parkinson’s Disease  ( Burbank PD) 

 Dr. Bridgette Queenan , Update from UCSB’s Brain Initiative* Santa Barbara)

On the website: Go to PD Educational Events for October

For detailed information, please go to our website: www.neurocommunity.org

PD Telephone Managing the Cognitive and Psychiatric Symptoms Associated with Parkinson’s Disease

MJ Fox webinar. What Do a Dog and Keyboard Have in Common? Screening for Parkinson’s

 LSVT:  TitleAm I too early to start LSVT BIG® or LSVT LOUD®?

 PD EXPERT BRIEFING: No webinar in October

TNCF  ADDRESS

The NeuroCommunity Foundation

32705 Vanowen St.  # 216

West Hills, CA  91307 (mailing address only)

 The NeuroCommunity Foundation is here for you:

  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 or mail to our address below.

 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. Click: contact 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.

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.

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)

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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)

 

 

 

 

 

 

 

 

Playing golf will help will your parkinson’s symptoms

Playing golf: A story of one man’s enlightening moment:

If you happen to lose track of Gary Smith, there’s a good chance you’ll find him at Top Golf. He hits there for an hour a day.

“No one really knows I have Parkinson’s due to all the golfing I’m doing,” said Smith, 61, who was diagnosed in 2008. Smith was fighting fatigue and felt gravity literally pulling his body downward.

“When I walked my daughters down the aisle, you see a real stiff man,” recalled Smith. “You see me shuffling and I didn’t know it.”

Smith was finding it more difficult to control his movements because of the changes happening in his brain. Doctors told him exercise would help.

“I did marathons, triathlons, yoga, chased my wife around the house, hip hop, biking, boxing. Nothing really changed until I started golfing,” said Smith.

“Golf involves a very precise balance between mobility and stability and a combination of fine motor skills and gross motor skills,” said Dr. Martha McGraw, movement disorders specialist at Northwestern Medicine Central DuPage Hospital. “Using those in a complex manner would certainly benefit brain function.”

Dr. McGraw said exercise in general not only helps people with Parkinson’s Disease—but reduces your risk for it because it helps the brain to repair and rebuild damaged networks, improves your brain’s ability to adapt, and protects against further damage.

“Next thing I knew, within a month I was feeling back to normal,” said Smith. “I feel like I’m back to my old self. I feel younger than I did probably in my 50s!”

Even his neurologist agreed.

“He’s had a dramatic improvement over the past six months or so since he’s become active with his golf program,” said Dr. McGraw.

It’s important to note each body is different. Smith’s just happens to enjoy and respond to this particular “par”-scription. Without changing his medications or dosages, he’s struggling less and feeling better than he has in years.

“[Golf has] changed me and I believe with all my heart that if someone tried it for a month — three or four times a week — they would feel a difference,” said Smith.

To date, there are no specific scientific studies that indicate golf is good for people with Parkinson’s Disease. Neurologists we spoke with say as a form of exercise they do support it. The physical benefit plus social aspect of the game enhances a patient’s well-being.

When Gary Smith was first diagnosed with Parkinson’s disease, his reaction was fairly typical.

“I was angry with God,” he says. “After I railed at him for a while, I felt like he was saying, “Are you done now? I’ve got plans for you. I’ve got your back.”

So Gary faithfully followed his neurologist’s instructions, doing everything she told him. He took all his meds, followed all the procedures, did all the exercises — that is, he did pretty much all of the exercises.

Aerobics. Stretching. Tai chi. Hip-hop dancing. Triathlons. Yoga. Boxing. He even ran a marathon! But none of it brought him relief from his Parkinson’s disease.

And then he played golf… and felt pretty good afterwards. Then he played again.And again. And again. Within weeks, his Parkinson’s symptoms started disappearing. Before long, he was almost symptom-free.

To Gary, it felt like a miracle. But would it last?

Read the rest of Gary’s story in the latest issue of the Parkinson’sVoice. www.3parkinson.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.

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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!

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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
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