Posts Tagged ‘Parkinson’s’

If you are going to do just one thing this year to raise LBD awareness, tell Congress about LBD and about your support for a very important act going to the House floor for a vote as early as next week!

On Friday, the Parkinson’s Action Network announced the following news:
On September 23, the full House Energy & Commerce Committee unanimously passed by voice vote H.R. 1362, the National Neurological Diseases Surveillance System Act. The legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including Parkinson’s and multiple sclerosis.

The surveillance system will be developed and maintained by the Centers for Disease Control and Prevention (CDC). This system will provide researchers and epidemiologists with a coordinated system of health data on neurological diseases and should fuel further research into neurological disorders like LBD. (Visit the Parkinson’s Action Network to learn more about the bill.)

Your Representative needs to hear from you today! Make sure your Member knows that the Lewy body dementia community strongly supports this important legislation. LBDA has developed a custom message about LBD and this act for your use, and the Parkinson’s Action Network’s website does the rest!
Please voice your support by e-mailing your Representative in support of H.R. 1362.



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ATLANTA, GEORGIA, USA, July 12, 2010 – Nearly 80% of people with Lewy body dementias (LBD) received a diagnosis for a different cognitive, movement or psychiatric disorder before ultimately learning they had LBD, according to the Lewy Body Dementia Association’s Caregiver Burden in Lewy Body Dementias, released today.

This new report reveals people with LBD and their caregivers face barriers to obtaining an early LBD diagnosis. Caregivers rate specialists and general practitioners as inadequate in discussing disease progression. Additionally, caregivers experience moderate to severe emotional burden, and most experience a sense of isolation because so few people know about LBD.

LBD is the second-most common form of degenerative dementia in the elderly, affecting an estimated 1.3 million people in the United States. Symptoms include dementia, unpredictable variations in cognition, attention or alertness; hallucinations, Parkinson’s-like symptoms, a sleep disorder characterized by physically acting out vivid nightmares and dreams, and a potentially life-threatening sensitivity to certain medications.

“LBD is a family disease, affecting not just the person with LBD but also the caregiver,” said Angela Herron, President of LBDA’s Board of Directors. “This report underscores the challenges presented by a disease that affects cognition, movement, behavior, sleep and mood. Despite the fact that LBD is a common form of dementia many doctors and other medical professionals are unfamiliar with LBD, compounding the burden even further.”

Importance of Early Diagnosis and Physician Awareness of LBD

Half of people seeking a diagnosis saw 3 or more doctors for 10 visits over the course of a year before they were diagnosed with LBD, and diagnosis required more than two years from the onset of symptoms for 31% of cases.

Although prognosis varies among individuals, LBD is often a more rapidly progressive disease than Alzheimer’s disease, and early diagnosis provides families an opportunity to plan for expected decline in cognition, function and behavior. Given the evidence that suggests treatment with cholinesterase inhibitors may benefit patients with LBD more than those with Alzheimer’s disease, barriers to diagnosis have a negative impact on both the patients’ and caregivers’ quality of life. Especially important, early diagnosis of LBD provides physicians with an opportunity to minimize exposure to medications that may aggravate symptoms, such as antipsychotic medications. Nearly 60% of people with LBD may experience severe, potentially irreversible reactions to antipsychotic medications, and in rare cases, a life threatening condition called neuroleptic malignant syndrome may also occur.

LBD Progression Not Adequately Addressed

While neurologists made most LBD diagnoses, caregivers most often relied on primary care physicians for ongoing follow-up care and reported difficulties coordinating treatment of LBD symptoms between primary care physicians and specialists, as medication for one LBD symptom may worsen another being treated by a different physician. Caregivers rated over 40% of both generalists and specialists as inadequate in telling families what to expect in the future, and more than half of physicians as inadequate in suggesting telling the family where to find more information on LBD or community-based resources.

“The lack of information on disease progression is a serious challenge to LBD families,” stated Herron. “It’s essential that families plan in advance for the relentless progression of LBD, and not having answers on what that decline will look like or how fast it may occur, adds significant stress to an already difficult situation.”

Caregiver Burden is Physical and Emotional

Caregivers reported moderate to severe levels of disability in the person with LBD and over 90% had taken over instrumental activities of daily living, like preparing meals, managing medications, transportation, finances and appointments. Over 60% of caregivers indicated the person with LBD could not perform basic activities of daily living, such as dressing or bathing.

People with LBD had high rates of behavioral problems and mood changes and two-thirds of caregivers reported a crisis in the past year that required a hospital emergency room, emergency medical services, psychiatric care, or law enforcement.
LBD caregivers face a number of challenges: social, medical, functional and financial. LBD caregivers feel isolated and often have to respond to crises, but may not be receiving adequate support from family, friends or healthcare providers. These features have the potential to lead to adverse outcomes for the caregiver “burnout” including stress, depression and poor health.

“Poorer caregiver outcomes directly lead to increases in patient institutionalization and declines in quality of life, stated Dr. James E. Galvin, a member of LBDA’s Scientific Advisory Council and Professor of Neurology and Psychiatry at New York University. “This may be particularly important in LBD where patients are at an increased risk of institutionalization and mortality.”

The findings are based on data collected by the Lewy Body Dementia Association (LBDA) in an online survey of 962 LBD caregivers. Designed by Steven H. Zarit, PhD, an expert on caregiver burden in dementia and Professor of Human Development at Penn State University, the survey was conducted over a 6-month period. Dr. Galvin analyzed the survey data, which was published in the July, 2010 issue of Parkinsonism & Related Disorders and the April-June, 2010 issue of Alzheimer Disease & Associated Disorders.

The full text of the Lewy Body Dementia Association’s Caregiver Burden in Lewy Body Dementias can be viewed by visiting http://www.lbda.org.

The Lewy Body Dementia Association

The Lewy Body Dementia Association (LBDA) is the leading voluntary health organization in raising awareness of Lewy body dementias (LBD), supporting patients, their families and caregivers, and promoting scientific advances. LBDA’s Scientific Advisory Council is comprised of leading experts from the United States, Canada, the United Kingdom, and Japan in research and clinical management of Lewy body dementias. To learn more about LBDA, visit

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Save the date to join the Parkinson’s Disease Foundation (PDF), online or by phone, on Tuesday, November 17, at 1 p.m. ET for an educational webinar, “How to Take Care of the Parkinson’s Caregiver,” with Barbara Habermann, Ph.D., R.N., associate professor, Department of Family Health Nursing at Indiana University School of Nursing. This FREE 60-minute PD Expert Briefing is part of PDF’s recognition of National Family Caregivers Month.

Many people often say that Parkinson’s affects more than the person living with the disease – it affects the entire family. Care partners – whether they are a spouse, a child, a parent or a friend – can experience significant life changes when caring for a loved one living with PD.

Dr. Habermann will explore common emotional responses that Parkinson’s care partners may experience. She will also identify signs of depression in the person with Parkinson’s and the care partner, point to specific areas where the partner may require help or assistance and let participants know about resources available to care partners.

How to Take Care of the Caregiver will be presented both as a webinar (web-based seminar) – where participants can watch a slideshow presentation online and hear an audio presentation either through their computer’s speakers or by calling a toll-free number – and as an audio-only presentation – for those who prefer to listen in by calling the toll-free number.

Participants joining the live session will have the opportunity to directly ask Dr. Habermann their own questions during the last 20-30 minutes of the presentation. This PD ExpertBriefing will also be available on the PDF website for up to one year after the live event.

For more information about this session, click here or call 800/457-6676. To register now, click here.

Info take from PDF’s site.

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I came across this on the Yahoo LBD Caregiver’s site and is also found on the LBDA forums.

The Alzheimer’s Research Forum is running a nine part series on an international Alzheimer’s Disease/Parkinson’s Disease conference held in March of ’09 in Prague and on an international Dementia with Lewy Bodies/Parkinson’s Disease Dementia conference held a few days earlier in Prague.

Here’s a brief run-down I got from the above-mentioned sites:

  • Part 1 is about overlaps between neurodegenerative diseases, proteins, genetics, and biomarkers.
  • Part 2 is about a genome study of PD and MSA.
  • Part 3 is about diagnosing and researching DLB.
  • Part 4 is about the interplay between two proteins in DLB.
  • Part 5 is about imaging biomarkers.

Click below to read the difference parts of interest:
Part 1.
Part 2.
Part 3.
Part 4.
Part 5.

If you would like to join the Yahoo LBD Caregivers Yahoo group, click here. I also have a “join now” button on the bottom right of my home page. The LBDA forums can be found here.

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Mark your calendars! Thursday, May 7th (10:00 p.m., ET), the ABC television network will air a one-hour special, Michael J. Fox: Adventures of an Incurable Optimist. Fox, who was diagnosed with Parkinson’s Disease in 1998, will examine the nature of optimism.

The special follows Fox as he journeys to the Himalayan nation of Bhutan and attends President Obama’s inauguration, in addition to meeting with doctors and scientists to better understand the nature of optimism. Fox also reflects on science and his own personal experiences- he says the past decade since his diagnosis have been among his happiest.

The former “Family Ties” and “Spin City” actor has devoted himself to Parkinson’s disease research in the decade since he was diagnosed with the disease.

Fox is also the author of Lucky Man and the newly released, Always Looking Up. An excerpt from his latest book can be read by clicking here.

I just started reading Always Looking Up and so far it’s wonderful. I’m really enjoying it.

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Things seem to be going relatively well back home. Dad’s OCD and bathroom habits have mom a bit frustrated and exhausted but otherwise, things seem okay for the most part. They’ve been keeping busy with running errands, going to the movies and things of that nature. My sister will be out to see my parents in one week so they’re looking forward to her visit. She’ll be there for 10 days over the Easter holiday.

In other news, I’m bummed I didn’t get to see Michael J. Fox’s interview on Oprah. The news programs here in Sydney have been showing clips of the Oprah show which is how I knew I missed it. I’ll have to ask Mum if she was able to record the show. Despite MJF’s Parkinson’s tremors, I think he actually looks really good. Maybe the show will re-air on the tele one of these days. If anything, I’m thinking of buying MJF’s book.

For a long time, I’ve been thinking about writing a letter to Oprah asking her to do a show about Lewy Body Dementia. Of course, time, the chaos of Lewy and life alway left the letter writing to the back burner. Now is a good of time as any to finally sit down and write Oprah and her producers asking them to speak about and educate the public about Lewy Body Disease. The inclusion of LBD in future discussions regarding Dementia and Parkinson’s could help to educate many people- medical professionals, caregivers, families and the general public- and, hopefully, lead to a cure or more successful treatment. There is so little awareness about Lewy Body and yet it is the second leading cause of degenerative dementia. We need to do all that we can to raise public awareness about this insidious disease. I urge anyone else reading this blog to also take a little time and send a letter to Oprah and her Producers.

To email the producers of the Oprah show, click HERE. To email the Oprah Winfrey show, click HERE.

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