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September 2011 Newsletter

LBD Stories: How Are You Doing?

Are you used to family and friends asking how a loved one with LBD is doing? How do you reply when they ask how you are? Long-time caregiver Ginnie Horst Burkholder finds it difficult to answer this question.

Ginnie says that it is hard to change focus from how your loved one is doing to how you are doing. However, it is important to reflect occasionally on what caregiving has taught you and how it has changed you as a person. Read Ginnie’s essay.

Turn Five Minutes into Community-wide LBD Awareness

As with many families affected by LBD, you may be frustrated by having to explain to everyone in your community, including some medical professionals, exactly what Lewy body dementia is.  And that needs to change.

In as little as five minutes, you can help LBDA inform your local media that October is A Month To Remember by helping us expand our national contact list of journalists who cover health-related topics. 

We are asking LBD families to identify at least one journalist in their community who would like to receive email press releases from the Lewy Body Dementia Association.  In larger news organizations, these people may be called health or science reporters; smaller news organizations may not have one person dedicated to health topics, so you may want to ask for the assignment editor or a senior editor who covers health topics.

You will want to gather the following information: 

  • What type of media outlet is this?  (Newspaper/Radio Station/TV station)
  • Company Name
  • Journalist Name
  • Title (i.e. health writer, senior editor)
  • Phone Number
  • Email Address
  • City
  • State

To share your local journalist's contact information with LBDA, click here and upload the information by September 14, 2011. And LBDA will do the rest.

Thank you for your help in bringing LBD out of the shadows!

New Caregiver Resource: Antipsychotic Medications

Treating hallucinations in LBD can be a real Catch-22 situation for LBD families.  Behavioral problems can not only be upsetting to the person with LBD and their primary caregiver, but they may also put someone at risk of physical harm.  However, people with LBD can have severe reactions to the medications used to treat hallucinations.  Where do you draw the line to treat or not treat the problem? Read LBDA’s newest caregiver resource:  Treatment of Behavioral Symptoms: When to Consider Antipsychotic Medications in LBD.

Special Events That Take Less Than 60 Days To Plan

What if you could raise awareness of LBD and support LBDA without making a major time commitment? It is possible! There is still time to put on an event for October’s LBD Awareness Month. You can organize an LBD fundraising event in less than 60 days.

Why not put on a Pancake Breakfast or a Car Wash; organize a Karaoke or Trivia Contest, or do an online fundraiser? Get more ideas and find out how to get started.

Radio Interview Promotes LBD Awareness Movement

LBDA Board member Coleen Greco recently discussed LBD awareness on the Coping with Caregiving radio program.  Coleen spoke with host Jacqueline Marcell about what LBD is, the work of LBDA, and LBDA’s Awareness Movement campaign.

Their discussion emphasized the need to increase awareness of LBD and provide support to individuals and families affected by the disease. Listen to the interview. (.mp3)

Shape of Lewy Body Protein Discovered

Scientists studying alpha-synuclein, the protein involved in Lewy body dementia and Parkinson’s disease, have found that in its natural, healthy state the protein has a radically different structure than previously thought. This new insight is significant for understanding both how the protein functions normally and how it becomes altered in disease like LBD and Parkinson’s.

Read the news article or watch this video.

Introducing the LBD Caregiver Link

LBDA is changing the format of the Caregiver Helpline to better serve even more LBD families.  LBD families and caregivers can connect more directly with LBDA volunteers on a regional basis, through our new LBD Caregiver Link, featuring our “Lewy Buddies.”

“Lewy buddies" are experienced LBD caregivers who volunteer their time and experience to LBD families. They will provide emotional support, share their experiences, and refer families to additional resources. Read more about how the “Lewy buddies” program works.

Alzheimer’s Drug Discovery Foundation Event

The Alzheimer’s Drug Discovery Foundation will be hosting its 12th International Alzheimer’s Disease Drug Discovery Conference on September 26-27, 2011 at the Hyatt Regency in Jersey City, New Jersey.  For two days, academic and industry scientists will come together to discuss the recent progress and successes made by drug discovery programs in treating Alzheimer’s disease and related dementias.  Guests will include over 150 academic and industry scientists as well as representatives from pharmaceutical and biotechnology companies. See the conference web page.