June/July 2009, Issue 14
With plans to bring dear friends from out of town to visit to Chuck at the nursing home, a sudden decline in Chuck’s cognitive and physical condition ended our family’s hopes for a lunch outing. Chuck was in bed and unresponsive. But what could have been a visit filled with awkward discomfort turned into an expression of love and communication that reached past the limits of LBD.
With complex diagnostic criteria and symptom overlap with other neurological disorders, LBD is challenging to diagnose. Accurate diagnosis is an essential component to developing disease-modifying treatment options. But the lack of reliable biomarkers (biological indicators of the presence of and severity of disease) is holding back LBD research. LBDA’s Scientific Advisory Council is planning a Lewy body disease biomarker symposium to identify the most promising areas of biomarker research in Parkinson’s disease and Lewy body dementias.
Families in Louisiana, Tennessee and Wisconsin are making a lasting impression in the fight against Lewy body dementia. Joining together with friends and neighbors, these families have increased LBD awareness by more than 700 people and raised more than $10,000 in support of LBDA’s mission over the past three months alone. These families are making a difference in their own communities, one person at a time.
It has been ten years since Jason Rubin’s mother passed away from Lewy body dementia; memories of her are still intertwined with lingering ‘what ifs’ when it comes to the care Jason wishes she could have had. Ongoing research and the efforts of the LBDA have crystallized many of the challenges facing LBD families. And that has stirred Jason into action. Now, those ‘what ifs’ are turning into ‘we can’s’ as Jason embarks on a new journey with LBDA.
In Their Own Words: Caregiver finds answers and support
I have been caring for my husband who is now 66 years old since he was diagnosed with Parkinson's in 1995. I had no idea what was going on with his mind until I happened across www.lbda.org. What a shock to find out there is a reason why Joe's mind is so confused. It helps me now to know what this is about. I hope I can learn more about Lewy body dementia. Being a caregiver is the hardest job I ever have had and I have had some manual labor jobs. At times I feel so alone and go looking for support. Web sites like this one are helping me get through without climbing the walls.
Just as Max Larkin was graduating from college, his 56-year old father, Hugh, was diagnosed with young-onset Alzheimer’s disease. The shock of the diagnosis and Hugh’s declining abilities meant changes for the entire family. Max and his girlfriend, Emily Boardway, have launched a new nonprofit organization, Mind Series, whose first project, Spoke Your Mind is to capture on film a wide array of stories from young-onset dementia families. They have embarked on a 1,000 mile bike tour and are seeking LBD families who would be interested in sharing stories about the onset of LBD in family members younger than 65.
Elder law podcasts available
The podcast Age With Confidence features discussion and commentary on all aspects of the aging process and getting older. Whether you are old, getting older, or know someone who is, this audio podcast will help guide you through the perils and pitfalls of aging. Issues discussed include Medicaid, Medicare, nursing homes, assisted living facilities, Social Security, veteran's benefits, caregiving, dementia, and elder law. Special tests include doctors, lawyers, financial planners, social workers, and even a politician or two. Updated weekly, Age With Confidence is hosted by elder-law attorney Sean W. Scott. A companion Web site and blog are located at http://www.virtuallawoffice.com.
Excerpts from ‘Living with Lewy’s’ to appear in the Lewy Body Digest
In the most recent issue of the Lewy Body Digest, we announced the sad news of the passing of Lyn Roche, Lewy Body Dementia Association volunteer and author of the LBDA column, Caring for the Caregiver. Honoring Lyn’s passion for LBD caregiver education and support, we are pleased to announce that Amy and Jerry Throop, long-time family caregivers and authors of Living with Lewy’s: Empowering Today’s Dementia Caregiver, will be taking over the Caring for the Caregiver column with excerpts from their book. The first excerpt will appear in the August 2009 issue of the Lewy Body Digest. Living with Lewy’s is a survival guide for all caregivers, but especially for caregivers of people with dementia with Lewy bodies, Alzheimer’s disease, and other dementias. Note: LBDA receives a $2 contribution from the authors for each book purchase that references our website, www.lbda.org. To learn more about Living with Lewy’s, visit http://www.candobooks.us.
Quick Links to LBDA Resources:
You Can Help!
Just $10 a month, through automated monthly giving, can help promote LBD education, awareness and research.
Planning an LBD-related event that’s open to the general public? E-mail us at email@example.com to help promote it on our Web site’s Events Calendar!
Click here to visit our Articles page to read the following LBD-related news stories and more:
- Feeding tubes not shown to help dementia patients
- Neurological diseases show common threads
- Exploring the link between sleep and dementia
Learn About LBDA
Tweet on. Can I be your FB friend?
If you understand those requests and want to help reduce the burden of Lewy body dementia, consider being an ambassador for the Lewy Body Dementia Association. LBDA is launching a presence on the social networking sites Twitter and Facebook, and we’re looking for volunteers who are able to represent the organization in cyberspace. If you’re interested, please contact Elizabeth Connor at firstname.lastname@example.org
Did you know that part-time, long-distance, or former Lewy body dementia caregivers make great support group facilitators? If you’ve ever considered forming a local LBD caregiver support group, LBDA can help! Please visit LBDA’s website to learn more. Questions? Contact LBDA's Support Group Coordinator.
If you’re an experienced LBD caregiver and enjoy sharing what you’ve learned about LBD and caregiving on a one-to-one basis over the phone, we’ve got a great volunteer opportunity for you too! Outreach volunteers are needed to help LBD caregivers know they are not alone! To learn more, send your name, address and phone number to email@example.com and we will have a Regional Volunteer Coordinator contact you with more information.