April 2009, Issue 13

LBD Story - Caring for Lee

Bruce and Lee in 2006When signs of progressive dementia began to show as short-term memory loss and the forgetting of words and names, my wife Lee still did not want anyone’s pity. As Lee then developed hallucinations and some odd changes in her behavior, the doctors gave it the new label of Lewy body disease (LBD). We researched LBD and realized we might be in for a rough ride. Little did I know that her bravery in the face of mortality would bring about such a profound change in my life.

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LBDA Advances Understanding of Caregiver Burden

Staff and board of the Lewy Body Dementia Association are participating in four separate scholarly events this year to promote research into Lewy body dementia. James Galvin, MD, and John Duda, MD, are presenting original abstracts based on the association's Caregiver Burden Survey. One key survey finding: on average, 50 percent of patients saw more than three doctors for more than 10 visits over the course of one year before diagnosis was made. 

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Building Hope - Reaching Out to Physicians

This year, our Physician Outreach Initiative is offering information and resources to thousands of doctors across the United States in a new way.

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Sharing Experience - Making a Difference, One Person at a Time

Every volunteer, regardless of background or skills, can play an important role in bringing LBD out of the shadows. One man describes how he is making a difference among his friends and neighbors.

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Increasing Knowledge - How to Read a Research Paper

By Debra McCoy-Massey

With a little work, you can interpret scientific language and acquire a good basic understanding of the latest studies on Lewy body dementia.

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Caregiver Corner - How to Avoid Bath Time Battles

By Lyn Roche

Trying to convince those with dementia that they need to bathe seldom works, but there are other strategies that can help avoid a struggle at bath time.

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Teenagers spread the word for LBDA

Students ranging from 14 to 18 years old at Parkview High School in Lilburn, GA, are making a difference for thousands of Lewy body dementia (LBD) families. In January, 2009, the students began creating information packets that the Lewy Body Dementia Association (LBDA) mails to families, medical professionals and organizations. More recently, the students helped prepare a mailing to 3,000 general practitioners across the United States, with the goal of raising awareness of LBD and LBDA’s services. Thank you Parkview High School! You inspire us! Would your local school or community group like to get involved in the fight against LBD? E-mail us today.

LBD Blogs on the Rise

Bloggers share their stories of living with Lewy body dementia with dignity and humor.

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Lyn Roche, LBDA Volunteer

With heavy hearts, we ask you to join with us in honoring and remembering Mrs. Lyn Roche. Lyn passed away suddenly on April 29, 2009.

We have come to love and look forward to Lyn Roche’s thoughtful messages to caregivers in each issue of the Lewy Body Digest eNewsletter. Even in this issue, we are grateful for Lyn's valuable contributions and unwavering support for caregivers and families. Through her work with the Lewy Body Dementia Association newsletter, the support group she co-facilitates in Sebring, Fl., with her husband, Bill, and the many books and workshops on caregiving that Lyn has made possible, she has brought hope and support to thousands of people when they needed it most.

Her strength, passion and unending love for those around her have left a lasting memory in our hearts as we mourn this devastating and sudden loss.

You Can Help!

Just $10 a month, through automated monthly giving, can help promote LBD education, awareness and research.

Click here and become a Monthly Donor today!

In the news

Click here to visit our Articles page to read the following LBD-related news stories and more:

  • Don't let caregiving ruin your other relationships.
  • Booklet helps ease the stress of hospitalization for people with memory loss.
  • New documentary on Parkinson's and journalist Dave Iverson.


Click here to visit our Events page for more information on the following caregiving, LBD or dementia-related events:

April 25, 2009: Nashville, TN: Two participants in the Country Music Marathon and 1/2 Marathon ran, in memory of their father, to raise funds for LBDA. 

April 26, 2009: Madison, WI: LBDA volunteer Pamela Crapp distributed association material at the Parkinson's Disease Walk-a-thon at East Towne Mall.

Learn About LBDA

Volunteer Corner

The Lewy Body Dementia Association welcomes two new Regional Volunteer Coordinators (RVCs): Cheryl Dingwell-Keckritz, RVC for Region 3 which comprises many West Coast states, and Michael Galvan, Jr., RVC for Region 2 which includes most Midwest states. (Volunteers who are not sure of their regions can find out by clicking here.)

Cheryl and Michael joined the LBDA family after  loved ones were diagnosed with LBD. Please join us in welcoming them!

04/01/2009 - To families facing Lewy body dementia (LBD), it’s invaluable to hear from other people who have lived with the disease. Not only is it educational, but it can be comforting and heartening to hear how others are facing LBD’s challenges with dignity and humor.