Parkinson's Support Group of Chico
Parkinson's Links
Emergency and Helpful Numbers for Parkinson's Disease
PINS: The One-Stop Shop for Information on Parkinson's!
Get your Parkinson's Disease Questions answered today!
(800) 457-6676 WWW.PDF.ORG
PARKINSON'S INFORMATION SERVICE (PINS)
The Parkinson's Disease Foundation (PDF) is proud to announce the expansion of our Parkinson's Information Service (PINS): the "one-stop shop" for answering your questions about Parkinson's disease!
To access PINS:
Call our toll-free helpline, (800) 457-6676, from 10 AM - 5 PM EST.
Use our "Ask the Expert" feature found at www.pdf.org to submit a question or find answers to commonly-asked questions.
Visit www.pdf.org to download PDF publications and order print copies.
National Parkinson Foundation
CALL OUR HELPLINE 1-800-4pd-info/1-800-473-4636
National Suicide Prevention Lifeline
Call 1-800-273-TALK/1-800-273-8255 or
Visit www.suicidepreventionlifeline.org
Clinical Trials
Lists of PD clinical trials by state from CenterWatch
866-219-3440
General information from the National Institutes of Health (NIH) about clinical trials
Information from the National Institute of Neurological Disorders and Stroke (NINDS)
800-352-9424
Website of the Parkinson Study Group
Includes information about clinical trials being conducted in the United States
Fox Trial Finder
https://foxtrialfinder.michaeljfox.org/
Fox Trial Finder was created by the Michael J. Fox Foundation to help increase the flow of willing participants — both people with Parkinson’s and control participants who do not have Parkinson’s — into the clinical trials that need them, accelerating the Parkinson’s drug development process.
Insurance, Medicare, and Medicaid
Information from the Centers for Medicare and Medicaid Services
800-633-4227
US government information about federal Medicare
Independent source of Medicare information and assistance in the US from the Medicare Rights Center
800-333-4114
Information on getting answers from, and negotiating claims with, private insurance companies from the Patient Advocate Foundation
800-532-5274
Information on a prescription savings card for those patients not already covered by Medicare
800-444-4106
Professional Medical Associations
American Academy of Neurology
800-879-1960
1080 Montreal Ave
St. Paul, MN 55116
American Neurological Association
952-545-6284
5841 Cedar Lake Rd, Suite 204
Minneapolis, MN 55416
National Institute of Neurological Disorders and Strokes
800-352-9424
PO Box 5801
Bethesda, MD 20824
Medical records (may entail out-of-pocket cost)
Resource for compiling and managing personal medical files
WebMD (www.webmd.com) offers the Health Manager program for tracking personal medical information
http://healthmanager.webmd.com
Helps patients collect, organize, and securely distribute copies of their medical records, anytime and anywhere
Adaptive equipment
Information from the National Institute on Disability and Rehabilitation Research on assistive technology
800-227-0216
Information on adaptive athletics from the Adaptive Sports Association
970-385-2163, Winter Sports; 970-259-0374, Summer Sports
Information on adaptive athletics from the National Sports Center for the Disabled
970-726-1540
National Registry of Rehabilitation Technology Suppliers provides special expertise on fitting wheelchairs or other mobility equipment
800-976-7787
Alternative Treatments
Information on massage therapy and relaxation techniques...
(877-905-2700) — from the American Massage Therapy Association
Information on the potency and purity of health supplements
(888-502-5100)
Information about acupuncture...
(310-364-0193) — from the American Academy of Medical Acupuncture
National Center for Complementary and Alternative Medicine...
888-644-6226 — Information from the NIH about options for complementary and alternative medicine, dietary supplements, and herbal medications
Exercise, Nutrition, and Sleep
American Council on Exercise
888-825-3636 — Information on the importance of physical activity in maintaining good health from the American Council on Exercise
Department of Agriculture
Contains recommended daily allowances and nutritional content of many foods from the Department of Agriculture
National Sleep Foundation
202-347-3471 — Information on the importance of sleep for optimal health from the National Sleep Foundation
Family Caregiving
Information, resources, and state-by-state breakdown...
800-445-8106) — of public programs for family caregivers from the Family Caregiver Alliance
Education, support, and advocacy...
800-896-3650 — from those who walk in a family caregiver’s shoes information and resources to assist your family caregiver from the National Family Caregivers Association
An online support community...
for family caregivers where they can share real-life experiences and ideas
Parkinson’s Disease Advocacy, Support, and Community
"This Way In: Parkinson's with fewer side effects"
Valeo, Tom
Neurology Now:
October/November 2014 - Volume 10 - Issue 5 - p 7-12
doi: 10.1097/01.NNN.0000455749.86977.7e
Departments: The Waiting Room
Parkinson's Disease for Dummies - Cheat Sheet
Read this document NOW
National Parkinson Foundation Resources
Read these 12 documents now by clicking the link
Parkinsons Recovery provides information about options that help people with Parkinson’s disease reverse their symptoms
http://www.parkinsonsrecovery.com/
The EEOC and Enforcement of the Americans with Disabilities Act
Information about the Americans with Disabilities from the United States Equal Employment Opportunity Commission
800-669-4000
The PD drug Azilect
Helpful PD information for patients, frequent news updates, plus information about AZILECT® (rasagiline tablets)
Dorian Brown Occupational Therapist
http://dorianbrownparkinsons.com/
Parkinson's Health
Tips and tools for living with PD, information on symptoms and treatments, and animated illustrations related to PD
Also, offers registration for a free subscription to Life in Balance-A Newsletter for People and Families Living with PD.
The Parkinson’s Institute and Clinical Center
800-655-2273
675 Almanor Ave
Sunnyvale, CA 94085-2935
Movement Disorder Society
http://www.movementdisorders.org
ReGenerations PD
by Patrick LoSasso
Read this Booklet Click Now
"Moving Forward: a practical guide to living with Parkinson's Disease"
Click on the link to read the Online Booklet Now
http://www.azilect.com/Resources/pdf/Moving-Forward-Guide(1).pdf
Resources on Depression and Anxiety in PD
http://parkinsons.stanford.edu/depression_anxiety.html
Robin Williams' death shines light on depression's grip
http://www.sfgate.com/health/article/Robin-Williams-death-shines-light-on-5684974.php
Who Takes Care of the Caregiver: 16 helpful ideas on how to help the Parkinson's person and
still take care of yourself
To Read this Booklet now, Click HERE
Exercise Classes Targeted for Parkinson's Disease Patients
The summer has slipped by and exercises classes will start again Wednesday, August 27. We will meet at our usual place and times; room 3 at the CARD facility at 545 Vallombrosa Ave. The 9:30 class will again be a little more challenging, with more floor and balance work, the 10:30 class will be gentle and mostly seated. You can register in person or online at the Chico Area Recreation District. Their phone number is 895-4711, the website is www.chicorec.com. Please feel free to call me with any questions.
Adrienne Wrightson
530-343-8240
Parkinson Association of Northern California
7840 Madison Avenue, Suite 107
Fair Oaks, CA 95628
Larry Alver
(916) 933-2465
panc@parkinsonsacramento.org
parkinsonsacramento.org
The Parkinson Association of Northern California(PANC) is an all-volunteer organization dedicated to contributing to the lives of people with Parkinson’s, their families and caregivers.
For a list of local and regional support groups in our viewing area and contact info for each:
parkinsonsacramento.org/support/
The Chevo Foundation
thechevofoundation.org
The Chevo Foundation's mission is to raise resources for Parkinson’s research, support and education. All of the proceeds will be used to help raise awareness and resources for Parkinson’s research and education for those directly and indirectly affected by the disease, and awareness of those not yet diagnosed.
Legislation
AB 1571 in the state Assembly would provide for evaluation and grading of residential eldercare facilities and make the results available to the public. To lend your support, urge your Assembly member to support AB 1571. For those of us in the Chico area (District 3), that’s Dan Logue, 150 Amber Grove Drive, Suite 154, Chico, CA 95973, 530-895-4217 or 916-319-2003. Email him from http://arc.asm.ca.gov/member/AD3/?p=email
PD & Parkinsonism (LBD, PSP, MSA, CBD)
Caregiver Symposium, July 12, Foster City. See:
http://parkinsons.stanford.edu/cgr_events.html
Dance for Parkinson's
Pamela Trokanski Dance Workshop
2720 Del Rio Place
Davis, CA 95618
Tuesdays, 2:00-3:15 PM
Weekly
Preregistration required
No charge
For information and registration: call Ruth Rosenberg at (530) 752-6113
Additional information: Davis Dance for Parkinson’s webpage: http://www.trokanski.com/special_parkinsonclasses.html
Sponsoring organizations: Mondavi Center, Pamela Trokanski Dance Workshop, Parkinson Association of Northern California
Lead teachers: Pamela Trokanski and Bobbie Bolden
Dance styles/techniques/content covered in class: modern, ballet, jazz, improvisation
Brian Grant Foundation
(503) 274-9382
The mission of the Brian Grant Foundation is to empower those impacted by Parkinson’s to live active and fulfilling lives. BGF was established in 2010, following Brian’s diagnosis of Parkinson’s in 2008.
The Bachmann-Strauss Dystonia & Parkinson Foundation
http://www.dystonia-parkinsons.org/
This foundation focuses on research updates for dystonia and PD. One Gustave L. Levy Place, Box 1490, New York, NY 10029; Phone 212-241-5614
Parkinson’s Disease Foundation
pdf.org
The Parkinson’s Disease Foundation (PDF) is a leading national presence in Parkinson’s disease research, education and public advocacy.
Click on Ask an Expert to submit a question or to link to expert information.
1359 Broadway, Suite 1509, New York, NY 10018; Phone 212-923-4700
American Academy of Neurology
American Brain Foundation
http://americanbrainfoundation.org/
Neurology Now Magazine
http://patients.aan.com/index.cfm?axon=redirect&&path=/go/neurologynow
American Parkinson Disease Association
http://www.apdaparkinson.org/index.cfm?
Click on Young Parkinson’s for The Arlette Johnson Young Parkinson Information and Referral Center; also click on Local Information and Referral Center on the home page to locate a support group or chapter. 135 Parkinson Avenue Staten Island, NY 10305; Phone 800-223-2732 or 718-981-8001
The Michael J. Fox Foundation for Parkinson’s Research
1-800-708-7644
michaeljfox.org
The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson's disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson's today.
UNDERSTANDING PARKINSON'S
Diagnosis & Symptoms
Life with Parkinson's
Navigating the System
Relationships
Treatment Options
Promising New Science
Learn More, Feel Better
Parkinson’s Action Network
http://www.parkinsonsaction.org/
Parkinson Alliance
http://www.parkinsonalliance.org/
Parkinson’s Patients Support Groups
Links to Stories and Articles on Parkinson's Disease
"Out-of-Favor Fetal-Cell Treatment Shows New Promise"
(FROM THE WALL STREET JOURNAL 10/7/14) By Shirley S. Wang
“Medicare and Parkinson’s”
Update on coverage for physical therapy, etc. Note: October 1, meeting is on this topic.
http://parkinson.org/About-Us/Press-Room/Press-Releases/2014-(1)/June/Medicare-and-Parkinsons--Therapy-Caps-and-the-Exc
“3 companies get Calif. self-driving car permits”
USA Today article heralding the coming of selfdriving cars a few years down the road, which should allow many of us to continue “driving” as we age and our PD progresses.
http://www.usatoday.com/story/money/cars/2014/09/16/audi-self-driving-cars-permitcalifornia/15728503/
Caffeine & nicotine for PD?
Article and video about research at the University of Saskatoon in Canada into finding non-toxic derivatives of caffeine and nicotine to halt progression of earlystage PD.
http://globalnews.ca/news/1260195/u-of-sprofessor-hopes-for-parkinsons-therapy-fromunlikely-sources/
Exercise videos specific to PD (for purchase):
http://parkinsons.stanford.edu/exercise_videos.html
Free exercise videos for PD –
Go to YouTube.com and search for “exercise parkinson’s”.
https://www.youtube.com/results?search_query=exercise+parkinson%27s
“‘Most family doctors’ have given a patient a placebo drug.”
Results of a survey of family doctors (GP’s or General Practitioners) in the UK.
http://www.bbc.com/news/health-21834440
“The medicine in our minds,”
about the potential of the placebo effect as a treatment modality.
http://www.bbc.com/news/health-26191713
“The Nocebo Effect Can Harm Your Health,”
"Parkinson's Disease and Pesticides: What's the Connection?"
by Bret Stetka, Scientific American, April 8, 2014.
http://www.scientificamerican.com/article/parkinsons-disease-and-pesticides-whats-the-connection/
“Senior Partnership,”
a short newscast video about a program matching UCLA students with seniors in an adult day care center for mutual benefit (mentoring and companionship), while caregivers get time off. Focus on a man with PD.
http://s3.amazonaws.com/TVEyesMediaCenter/UserContent/298093/3448081.80/KABC_05-21-2014_16.51.22.mp4
“Raising Funds, Raising Hope,”
a fundraising appeal for stem cell research using the patient’sown stem cells for an actual cure. Video.
http://www.summit4stemcell.org/
“Living with Parkinson’s,”
a 30-minute video, introductory overview to PD.
http://www.kvie.org/programs/kvie/viewfinder/living_with_parkinsons/default.htm
Skip Phairas of the Chico Hydrotherapy Center speaks about aquatic Therapy
530-717-7202
“We have the technology to reinvent aging, so why aren’t we using it?”
Identifies age-related changes (some of which are also PD symptoms) and discusses current and future technology to lessen their impact.
“Parkinson’s exercise study aims to show disease progression.”
Short newscast video about ongoing study of effect of moderate vs. intense exercise for PD-diagnosed but non-medicated folks.
https://screen.yahoo.com/parkinson-exercisestudy-aims-show-201200465.html
“Mine is longer than yours,”
a six-page article by Michael Kinsley in The New Yorker (April 7, 2008) on longevity and dying. The last part is about Parkinson’s, which the author has.
http://www.newyorker.com/reporting/2008/04/07/080407fa_fact_kinsley
“A Shock to the System”
by Steven Gulie, Wired magazine, March 2007. Excellent description of the author’s DBS surgery several years ago.
http://archive.wired.com/wired/archive/15.03/brainsurgery.html
“Folic acid could suppress Parkinson’s–new study”
“Combating Depression in Parkinson’s Disease”
by Matthew Menza, M.D.
http://www.pdf.org/en/combating_depression
“Facing the Future When You Are Living Alone with Parkinson’s Disease”
by Carolyn Stephenson
http://www.pdf.org/en/personal_stories/view/story/796
a 4-minute video with Patrick LoSasso, Certified Personal Trainer and board member of The Parkinson’s Association, specializing in working with persons with PD. This video links at the end to 15 others.
https://www.youtube.com/watch?v=dz56iWMu_Xs
Patrick’s website: http://www.patricklosasso.com
“Specialized Care Urged for Treatment of Parkinson’s Disease,”
about the importance of a movement disorders specialist.
http://online.wsj.com/news/articles/SB10001424052702304479704579580020917565860
“Can a Parkinson’s Patient Ride a Bike?”
Brief article and interesting short video
http://blog.brainfacts.org/2013/06/can-aparkinsons-patient-ride-a-bike/#.U9vVeCgnF0k
“The Creativity Pill"
The creative and obsessive/impulsive effects of Levodopa.
http://www.theatlantic.com/health/archive/2014/07/creativity-and-dopamine-pills/374599/
“Cinnamon May Be Used to Halt the Progression of Parkinson’s Disease”
(Note that only the less common Ceylon cinnamon should be used, not the varieties in general use. Available at some natural food stores and online.)
http://www.rush.edu/webapps/MEDREL/servlet/NewsRelease?id=1768
“Vitamin D May Improve Mood, Cognition in Parkinson's Disease Patients”
“Decision Aids for Advance Care Planning: An Overview of the State of the Science”
http://annals.org/article.aspx?articleid=1891307
“Orthostatic Hypotension (Low Blood Pressure) and Parkinson’s”
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“Know Your Blood Pressure Numbers”
http://www.webmd.com/hypertension-high-bloodpressure/guide/diastolic-and-systolic-bloodpressure-know-your-numbers