Thursday, May 24, 2018

Press Release from UCSF -- Football Scuffles, Auto Injuries May Raise Risk for Parkinson's

Football Scuffles, Auto Injuries May Raise Risk for Parkinson’s

Concussion Linked to 56 Percent Increase in Neurological Disease, UCSF Study Shows

Wednesday, May 2, 2018

New from the Parkinson's Foundation -- Stopping the Spiral Toward Demoralization in Parkinson's Disease

Stopping the Spiral Toward Demoralization in Parkinson’s Disease

People with chronic diseases such as Parkinson’s disease (PD) are at risk of spiraling into a demoralized state. Common symptoms include feeling helpless, hopeless, a sense of failure and incapacitated to respond to stressful situations. Doctors frequently fail to identify or address this issue. There is sparse research and a rare interest in screening for demoralization. In this month’s Whats Hot in PD? column we will address demoralization in Parkinson’s disease and suggest strategies to identify and address this problem.
Brian Koo, MD, and colleagues in the April edition of Neurology set out to determine the prevalence and associated features of demoralization. The researchers studied 96 people with Parkinson’s disease and compared them to 86 people without Parkinson’s.
Demoralization was measured by the Diagnostic Criteria for Psychosomatic Research, the Demoralization Questionnaire or the Kissane Demoralization Scale score. Study participants were counted as demoralized if any of the three scores were positive. Eighteen percent of people with Parkinson’s were demoralized as compared to eight percent of those without PD.
Depression was associated with demoralization, although interestingly there were participants who were demoralized but not depressed and those who were depressed but not demoralized. Younger unmarried participants with worse motor scores on the Unified Parkinson’s Disease Rating Scale (UPDRS)examination were at particular risk for demoralization (Koo, 2018).
The bottom line for people living with PD and care-partners is that demoralization is present in about one in five people with Parkinson’s. This symptom should not be confused with depression although it may co-occur with depression.
These tips that may be helpful for those suspicious of demoralization:
  1. Younger unmarried people with PD with a high burden of parkinsonian motor features have a higher risk of demoralization.
  2. Getting a referral for a licensed clinical social worker or counseling psychologist can be helpful.
  3. Cognitive behavioral therapy may be useful, but more research is needed on this technique.
  4. Do not assume that depression is the cause of demoralization.
  5. Treatment of depression and/or apathy (if present) can help.
  6. Getting a referral to a psychiatrist may be useful in select cases.
  7. Doctors and members of the healthcare team who are positive can help.
Selected References
Koo BB, Chow CA, Shah DR, Khan FH, Steinberg B, Derlein D, Nalamada K, Para KS, Kakade VM, Patel AS, de Figueiredo JM, Louis ED. Demoralization in Parkinson disease. Neurology. 2018 Apr 4. pii: 10.1212/WNL.0000000000005425. doi:10.1212/WNL.0000000000005425. [Epub ahead of print] PubMed PMID: 29618626.
For more from the Parkinson's Foundation, visit 
If you have any questions or concerns regarding Parkinson's Disease, please call the Parkinson's Foundation at 1-800-473-4636 or reach out to our center at 1-415-502-1672.

Friday, March 9, 2018

Press Release from UCSF - Latest Publication from Dr. Christine

Low Levels of Vitamin B12 May Worsen Walking, Cognition in Parkinson’s Patients

Supplement May Boost Balance, Memory, But Impact on Disease Trajectory Unknown

A study of patients with early Parkinson’s disease found that groups with lower levels of vitamin B12 faced on average a more rapid acceleration of both motor and cognitive symptoms, which slowed in some cases after taking a daily multivitamin.

In the two-year study, blood levels of vitamin B12 were tested in 680 patients who had recently been diagnosed with Parkinson’s. Researchers led by first author Chadwick Christine, MD, a UCSF neurologist, also assessed patients’ gait and mobility, ability to perform activities of daily living, cognition and symptoms of depression.

“Our findings demonstrate that low B12 levels are associated with greater walking and balance problems, possibly due to the known effect of B12 deficiency on the central and peripheral nervous systems,” said Christine. “Alternatively, low B12 may have a direct effect on the progression of Parkinson’s disease, or it may be a marker of an unknown associated factor, perhaps correlating with another aspect of the disease or nutritional status.”

The study was published March 6, 2018, in the “early view” version of the journal Movement Disorders.

Parkinson’s affects more than 1 million people in North America, most typically after age 60, according to the National Institutes of Health. It is a progressive disorder of the nervous system that primarily impacts balance and movement. At five years following diagnosis, approximately 50 percent of patients also experience cognitive decline.

Deficiencies of B12, which are more common in people with Parkinson’s than the age-matched general population, are associated with weakness, tiredness, numbness, tingling and walking difficulties – symptoms that are found in Parkinson’s disease.

Higher B12 Translates to Less Disability

Using patient data and archived blood samples from a prior study, known as DATATOP, the researchers divided three groups of 200-plus patients according to their levels of vitamin B12 at the beginning of the study. They found that over time, symptoms in those from the lower-level group developed more rapidly than in those in the higher bracket. Average annualized changes from preliminary testing for walking capacity were ranked at 1.53 for the group with lowest B12 levels, 0.83 for the middle group and 0.77 for the higher cohort, demonstrating twice the rate of progression between the groups with the lowest and highest B12 levels.

Additionally, researchers tested patients’ blood levels of homocysteine, an amino acid that may be elevated in people with lower B12, and compared the levels to patients’ results from the Mini Mental State Examination, a test that measures cognitive skills. The group with higher homocysteine levels, and thus lower B12, was found to decline by an annualized average of 1.96 points, versus a modest improvement (0.06 points) in those with lower homocysteine.

Supplement Intake, Parkinson’s Meds Ruled Out Eligibility

Patients were eligible for the study if they had not started treatment for Parkinson’s and if they had not been taking a vitamin supplement of greater strength than a standard daily multivitamin (containing up to 6 mcg of B12), in the month before the start of the study. The study endpoint was disease progression to a degree indicating readiness for levodopa, standard Parkinson’s therapy that over time becomes less effective.

After preliminary testing, patients were offered the option of taking a daily multivitamin. Close to 50 percent of participants were found to have higher B12 on subsequent testing, suggesting that many took the supplement or improved their diets. For those patients who remained in a lower B12 level – suggesting they may not have started supplements – their annualized average increase of disability was 14.4 on the Unified Parkinson’s Disease Rating Scale (UPDRS), a test that assesses activities of daily life, motor skills, behavior and mood. In contrast, for the group whose B12 levels began low but improved during the study, their average increase in the UPDRS score was 10, showing less disability.

“Our results suggest that the measurement of B12 levels early in Parkinson’s may be beneficial,” said Christine. “If levels are at the low end of normal, supplementation to get the level into the middle or upper end of the normal range may slow development of symptoms. But because we don’t know the impact of B12 on Parkinson’s disease, future studies are needed to determine if supplementing will change the disease trajectory.”

The study was supported by funding from the Michael J. Fox Foundation and from gifts from the Ko and Tsu family, and William and Mary Ann S. Margaretten.

The senior author is Ralph Green, MD, PhD, of UC Davis, an international expert in vitamin B12, whose laboratory conducted the B12 and other biochemical measurements. Co-researchers are Peggy Auinger of the University of Rochester, N.Y., Amelia Joslin, Yuora Yelpaala, also of UC Davis, and the Parkinson’s Study Group – DATATOP investigators.

UC San Francisco (UCSF) is a leading university dedicated to promoting health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care. It includes top ranked graduate schools of dentistry, medicine, nursing and pharmacy; a graduate division with nationally renowned programs in basic, biomedical, transitional and population sciences; and a preeminent biomedical research enterprise. It also includes UCSF Health, which comprises three top-ranked hospitals, UCSF Medical Center and UCSF Benioff Children's Hospitals in San Francisco and Oakland, and other partner and affiliated hospitals and healthcare providers throughout the Bay Area.

Thursday, February 15, 2018

New from the Parkinson's Foundation! Sleep: A Mind Guide to Parkinson's Disease

The Parkinson's Foundation just released a new educational book on sleep entitled Sleep: A Mind Guide to Parkinson's Disease.

To download a PDF copy, use the following link:

To order a free hard copy, visit the e-store at

If you have any additional questions, please call the Parkinson's Foundation helpline at 1-800-473-4636 or reach out to our center at 1-415-502-1672.

Tuesday, January 30, 2018

Press Release- Latest News from Parkinson Foundation

Largest Clinical Study of Parkinson’s Disease Reaches 10,000-Patient Milestone, Reveals Critical Learnings

NEW YORK & MIAMI - January 10, 2018 - The Parkinson’s Foundation today announced the enrollment of the 10,000th Parkinson’s patient and the discovery of critical new learning in what represents the largest clinical study of Parkinson’s disease in history. Launched in 2009, the study has grown from a small pilot to 29 expert clinics in five countries and serves as a platform for clinical studies to improve the lives of everyone with Parkinson’s.

Specifically, the “Parkinson’s Outcomes Project” evaluates the complete range of factors associated with Parkinson’s disease: medications and other treatments, motor symptoms, cognition, anxiety and depression, and caregiver burden. The study, which includes more than 100 people who have lived with Parkinson’s for more than 30 years and 83 people diagnosed before they were 30 years of age, covers more than 25,000 clinical visits and input from almost 9,000 family care partners. Critical discoveries from the study include:
  • Regular neurologist care, which could save the lives of thousands of people every year, should be better prioritized by Parkinson’s patients and caregivers
  • Greater attention should be paid to physical activity, as increasing exercise and general movement to at least two-and-a-half hours a week slows the decline in quality of life
  • Mental health should be better prioritized, as depression and anxiety are leading factors determining the overall health status of patients
  • Gender differences from informal family caregivers for women with Parkinson’s is putting them at a disadvantage, and greater awareness is needed. Women with Parkinson’s are more likely to have a paid caregiver than men at the same stage, unlike men who are more likely to rely on their spouses and family members for support with everything from daily care to doctor visits
“When the foundation launched the Parkinson’s Outcomes Project nine years ago, our goal was to understand the impact of Parkinson’s on everyone living with the disease. We have obtained a wealth of information in what now represents the broadest and most inclusive patient population ever assembled in a clinical study of Parkinson’s,” said Peter Schmidt, PhD, Senior Vice President, Chief Research and Clinical Officer of the Parkinson’s Foundation, who leads the study. “The data we are collecting is informing trials to deliver new and better therapies.”

Added Thomas Davis, MD, Director of Movement Disorders at Vanderbilt University, study co-chair: “This project is truly innovative in that it not only follows thousands of patients over time, but that it studies everyone with Parkinson’s, from the newly diagnosed to people who have lived with the disease for 30 years or more. We’re working to ensure that every patient receives the best possible care, no matter where they’re seen.”

The Parkinson’s Foundation partners with its vast network of Centers of Excellence, leading academic and medical institutions around the world, to determine which Parkinson’s care teams achieve the best results and why. The network is comprised of 42 medical centers that deliver care to more than 100,000 people with Parkinson’s every year. Parkinson’s Foundation Center of Excellence status is the most respected and sought-after designation in the field of Movement Disorders, with each center required to meet rigorous clinical, research, professional education and patient service criteria.

“We are studying the quality of Parkinson’s care delivered at our Centers of Excellence to help patients who aren’t being seen at one,” said Fernando Cubillos, MD, who oversees operations for the Parkinson’s Outcomes Project. “Our goal is to help identify the best care and disseminate that information widely.”

The Parkinson’s Outcomes Project is led by a steering committee with members from each participating clinic and rotating co-chairs. The current co-chairs are: Kelly Lyons, PhD, Kansas Medical Center; Thomas Davis, MD, Vanderbilt University Medical Center; and Adolfo Ramirez-Zamora, MD, University of Florida. Gene Nelson, DSc, from the Dartmouth Institute for Health Policy & Clinical Practice, serves as advisor on quality programs.

For more information about the study, visit

About the Parkinson’s Foundation 
The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community. For more information, visit or call (800) 4PD-INFO (473-4636).

About Parkinson’s Disease 
Affecting an estimated one million Americans and 10 million worldwide, Parkinson’s disease is the second-most common neurodegenerative disease after Alzheimer’s and is the 14th-leading cause of death in the United States. It is associated with a progressive loss of motor control (e.g., shaking or tremor at rest and lack of facial expression), as well as non-motor symptoms (e.g., depression and anxiety). There is no cure for Parkinson’s and 60,000 new cases are diagnosed each year in the United States alone.
Wednesday, January 10, 2018

Thursday, November 2, 2017

PD Active 2017 Activities

Here is the program description, schedule, and contact list for PD Active programs in the Bay Area. Click on the pictures to bring up larger versions.

Friday, October 20, 2017

New PD Support Group forming in Pinole, CA

We would like to notify you that a new Parkinson's support group is forming in Pinole and you are invited.

The Inaugural Meeting is this Monday, October 23 at 11:00 am.

Bary Park Retirement Residence
2621 Appian Way, Pinole, CA

If you are interested, please contact: