Posts Tagged ‘Lewy Body Disease’

It All Begins with Awareness…

Awareness builds knowledge.
Knowledge builds power.
Power builds research.
Research builds treatment.
Treatment builds hope.

Awareness is our beacon. It’s how Lewy body dementia will come out of the shadows and into the public eye.

The Lewy Body Dementia Association is committed to increasing awareness about LBD 365 days a year. This year, October 10-16 will truly be A Week To Remember as LBD families are Standing Strong with LBDA to raise LBD awareness and support throughout the country.

Participate by selecting at least ONE activity from any of the three links below. Together, we are…

Increasing Knowledge: Help to advance the cause by getting involved in community-based awareness efforts. Let’s make Lewy body dementia a household word!

Sharing Experience: No one should have to face LBD alone. Participate in one of the many ways LBD families connect to share their personal experiences of living with LBD.

Building Hope: Your much-needed support of LBDA’s mission means new hope for the 1.3 million families who are living with this devastating disease.

Join us or learn more about how you can Stand Strong with the 1.3 million families affected by Lewy body dementia.

Click here for LBD Awareness Week Resources you can download, including our LBD Awareness Kit – filled with ideas and tips on how YOU can help make October 10-16, 2010 A Week To Remember.

If you have questions about raising LBD awareness in your community,
contact us at awareness@lbda.org or 404-935-6444, ext. 104


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I received the following information in an email from the LBDA about the upcoming Alzheimer Research Forum‘s webinar, Betwixt and Intermixed-Dementia With Lewy Bodies:

The Alzheimer Research Forum, is the web’s most dynamic scientific community dedicated to understanding Alzheimer’s disease and related disorders like Lewy body dementias.

Their upcoming event, Betwixt and Intermixed-Dementia With Lewy Bodies has generated a tremendous response from the caregiver community, including some 90 questions on LBD diagnosis and treatment submitted from caregivers.

With this event, the Alzheimer’s Research Forum aims to increase awareness of dementia with Lewy bodies (DLB) among scientists and physicians, their primary audience. As such, the panel of LBD experts will focus largely on scientific research topics.

While the live event may address some clinical issues at a high level, at only one hour long it will be impossible to address the many caregiver questions that have been submitted. To ensure your questions receive the attention they deserve, the AlzForum editors have assembled them in a caregiver comment page and will be asking the panelists and the Lewy Body Dementia Association to respond offline to these questions after the event.

Some of this information can be found on the LBDA website now. Visit http://www.lbda.org/category/4115/publications.htm to read our many publications or watch caregiver educational videos on LBD at http://www.lbda.org/category/4116/multimedia-resources.htm.

For those who are registered for this event, only questions on the scientific topics should be submitted DURING the actual event. If you are a patient or caregiver and have questions in addition to those already posted, you are invited to submit them ahead of time via the AlzForum website at http://www.alzforum.org/contact.asp.

LBDA will work with the AlzForum editors to provide the fastest response to the most frequently asked questions so that LBD families now and in the future can all benefit from the answers. Due to the volume of questions, the reality of limited resources, and the availability of our LBD experts, there will be a modest delay before the answers are posted online.

We appreciate your patience while AlzForum and LBDA work together to develop the answers you need.

The LBDA Team

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Alzheimer’s Research Forum will be hosting a scientific webinar titled “Dementia with Lewy Bodies – Dreadful, Common, Understudied?” on Monday June 15, 2009 at 12 noon Eastern Time for one hour.

Click here to learn more and to register. The LBDA also lists info about the webinar which can be found here.

After you register, you will get an e-mail confirmation with the dial-in telephone number and a “Join Now” box in the e-mail, that when you click on it, will take you to the webinar via your computer. Therefore, save this e-mail registration confirmation for Monday June 15, 2009 and use it to join the webinar a few minutes before 12 noon Eastern Time on Monday June 15, 2009.

**Please note: This will be a scientific webinar, therefore, it will be heavy on the science.**

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There is a recently published 3-page article written by an LBDA support group facilitator. Click here to read it. To advance to the next page, click ‘page ahead’ on the top right of the article.

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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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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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Things seem to be getting better for Dad. I think the Namenda is finally kicking in coupled with a reduction in his daily Sinemet. He’s not experiencing hallucinations anymore which is great and he seems to be more cognizant and a bit like his old self. He’s now able to remember and fully recite his prayers at night which I believe is quite comforting to him. Today he went to Costco with us and the past few nights he’s been able to walk the dog. It’s great to see him up and functioning, again.

The only downside to his improvement is that he still sleeps the majority of the day. Often times he can easily sleep 15 hours or more, however, he’s very alert and active when he finally rises for the day. If we try to wake him early, he just does not have a good day and it ends in him begging to go back to bed. Generally, if he gets his desired amount of sleep, we don’t have to fight to get him out of bed and dressed. He’ll even have a good appetite. I mean, he’s not completely like his old self and in many ways, it’s still like caring for a kid. He’s dependent on us for his daily care but he’s definitely engaged in every day activities, able to focus, think and speak clearly. Who knows, this could all be part of the Lewy rollercoaster and next week we could be back to square one. Maybe, just maybe, we are getting his medication regiment under control? I don’t want to jinx it but it’s really quite lovely to see Dad getting back to being Dad, again.

However, with the upswing in his health and behavior comes a bit of a catch 22 situation. Now that he is more alert, he is more aware of his declining health. When he was “bad” it was never an issue. I think Dad is slowly realizing that something is wrong but he’s still in denial about having Lewy Body Disease. He thinks it’s “B-S.” We talk about his Parkinsonism- the trembling limbs, shuffling gait, stooped posture. For Dad, he sort of realizes that he must have something like it as there is no denying his shaking hands. Since he is understandably sensitive about his condition, we don’t really say the words, ‘Lewy Bod Dementia.’ It’s not that we’re trying to hide anything; it’s just that words like ‘Alzheimers’ and ‘Dementia’ are powerful and devastating words. To someone in a weakened mental and physical state, hearing them over and over can really do in one’s psyche. I always refer to Lewy Body Dementia as Lewy Body Disease or rather, LBD. Often times I don’t even really mention any of it in front of him. We’ve tried talking about it with him on several occasion and the doctors have mentioned it to him as well but he just doesn’t get it… or refuses to get it. As he says, “I’m not sick… that’s B-S.” To some degree it’s better this way because I think when he finally does come to grips with his reality, it will be absolutely devastating and I wonder about the affect it will have on his will to live.

Since Dad is quicker on the up take these days, I think he’s starting to remember the names of his medications. For instance, he’s taking Aricept which treats Alzheimer’s symptoms. During dinner, Dad overheard the Aricept commercial running on the TV in the background. The commerical talks about alzheimers over and over again. Well, Dad heard that word, stopped eating, turned around and watched the commercial. Mom and I both looked at each other and my heart sank. I know he knows and I think he’s dealing with it in his own way. He never discusses it with us or with his doctors. Since Dad seems to be getting better maybe that will change and we’ll figure out how to deal with it together.

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