Category Archives: LBD

Geriatricians question common treatments, including dementia drugs

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This is an interesting post in the New Old Age blog of the New York Times about five common treatments questioned by geriatricians.  At the top of this year’s list are cholinesterase inhibitors — such as Aricept, Exelon, and Razadyne — which are prescribed for those with Lewy Body Dementia and some of the other disorders in our group.

See last year’s list of five things here:

www.brainsupportnetwork.org/five-things-physicians-and-patients-should-question-geriatrics-hospice/

Here are some excerpts from the article about cholinesterase inhibitors:

Topping this year’s list is a caution against dementia drugs called cholinesterase inhibitors — Aricept is the most widely used — without following up to see whether they’re really helping.

[While] the drug may produce cognitive improvement that is statistically significant in a clinical trial, “it’s not clear that it’s big enough for a caregiver to even notice, or big enough to make a difference in a patient’s quality of life,” Dr. Lee said. “We’re learning, after more experience with these drugs, that they benefit a minority of patients.”

On the other side of the equation, most patients who take them will experience gastrointestinal problems like nausea, cramping and diarrhea that often cause weight loss. So the society urges extensive discussion before doctors prescribe cholinesterase inhibitors and suggests no more than a three-month trial. If there’s no meaningful improvement by then, there won’t be later. “This is not a medication to start and then forget about,” Dr. Lee cautioned.

Here’s a link to the full article:

newoldage.blogs.nytimes.com/2014/03/07/geriatricians-question-five-common-treatments

Geriatricians Question Five Common Treatments
New York Times
By Paula Span
March 7, 2014 3:49 PM

Robin

 

FDA Approves Droxidopa (to treat OH)

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Orthostatic hypotension (OH) is a sudden drop in blood pressure when sitting up or when standing up.  Many (most?) with MSA have this symptom.  And about 40% of those with LBD have this symptom.  It can lead to fainting or falling.

Yesterday, the FDA approved droxidopa (Northera is the brand name) for use in treating orthostatic hypotension.  As we’ve read on the MSA-related Yahoo!Groups, a minority of people could tolerate this medication but for that group the drug was very helpful.

The Michael J. Fox Foundation cautions that users of droxidopa should sleep with their head and upper body elevated as the medication can increase one’s blood pressure when lying down.

Robin

 

Autonomic Dysfunction Webinar (orthostatic hypotension,, etc)

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This post will primarily be of interest to those dealing with LBD or MSA, but since constipation and swallowing may be addressed in this webinar, this email may be of interest to everyone in our local support group.

A webinar on how Parkinson’s Disease affects the autonomic system will be held on Thursday 2-20-14 from 9-10am California time.  In particular, researchers will describe what treatments are in development to address symptoms such as orthostatic hypotension (OH) and constipation.

This is one of the few webinars I’m aware of that will look at research on treatments for OH.  OH can be a disabling symptom in dementia with Lewy bodies (DLB) or multiple system atrophy (MSA).  My layperson’s definition of OH is:  a sudden drop in blood pressure that results when you sit up from a prone position or when you stand up from a seated position.

If you aren’t able to attend this webinar, the organizer, the Michael J. Fox Foundation (MJFF), typically posts a recording of its webinars on the following Monday on its website, michaeljfox.org.

Generally, MJFF’s webinars are of very high quality but remember that they are focused on Parkinson’s Disease, not any of the atypical parkinsonism disorders.  DLB and MSA — two disorders in our local support group — are similar to PD in terms of brain pathology, neuro-transmitters, and symptoms, so many of the MJFF webinars will be applicable to people dealing with those two disorders.

Here are details of the February 20th webinar:

Parkinson’s Disease: What Else Goes Wrong?
February 20, 2014 @ 12-1 p.m. ET

Dave Iverson talks to a Parkinson’s patient and researchers about how PD affects the autonomic nervous system, which controls involuntary functions such as swallowing, heart rate and digestion. Our panelists review current treatments in development to address symptoms such as orthostatic hypotension and constipation.

Click on the orange “Register Now” button on this page:

https://www.michaeljfox.org/page.html?hot-topics-webinar-series

Robin

Webinar on Swallowing and Dental Challenges (in Parkinson’s)

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This post is about a webinar on swallowing and dental challenges in Parkinson’s Disease, to be held on Tuesday, January 14th, from 10am to 11am California time.  My guess is that much of what is said will be applicable to those coping with the four atypical parkinsonism disorders in our support group — PSP (progressive supranuclear palsy), LBD (Lewy body dementia), MSA (multiple system atrophy), and CBD (corticobasal degeneration).  If you aren’t able to attend this webinar, the organizer, Parkinson’s Disease Foundation, typically posts a recording of the webinar within one week on its website, pdf.org.

Here are the details of the webinar:

PD ExpertBriefing: Swallowing and Dental Challenges
Organized by:  Parkinson’s Disease Foundation (pdf.org)

Tuesday, January 14, 2014, 10am – 11am California time   (1:00 PM – 2:00 PM ET)

Register here:
http://event.netbriefings.com/event/pdeb/Live/dental/register.html

Speakers:
Michelle R. Ciucci, Ph.D., University of Wisconsin, and Jane Busch, D.D.S.

Goals for Participants:
* Understand the potential swallowing difficulties related to Parkinson’s, including the onset, progression, and nature of these issues
* Discuss how common treatments for Parkinson’s (surgical, pharmacological and behavioral) may impact swallowing
* Learn common ways to evaluate and treat dysphagia, a swallowing disorder associated with Parkinson’s
* Understand the dental challenges caused by the oral and facial effects of Parkinson’s disease
* Explore practical ways to manage dental treatment in Parkinson’s and achieve a more effective home oral hygiene regimen

When you are ready to join the webinar on January 14th —

Join online by clicking here (if you have pre-registered):
http://event.netbriefings.com/event/pdeb/Live/dental/

and/or

Call this tollfree number if you want to hear the audio portion over your phone:
Toll-free 1 (888) 272-8710 and enter the passcode 6323567#
Robin

New NIH Booklet on Lewy Body Dementia

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Someone at the Alzheimer’s Disease Education & Referral Center at the NIA (National Institute on Aging – part of NIH) sent me a couple of copies of this new NIA booklet on Lewy Body Dementia, published in September 2013.  I will bring the two copies I have to the next caregiver support group meeting, and lend them out.

You can order a print copy yourself here:  (free of charge)

www.nia.nih.gov/alzheimers/publication/lewy-body-dementia

Alternatively, you can print your own copy from this PDF or read it online here:

lbda.org/sites/default/files/lewybodydementia-final_11-6-13.pdf

I think the booklet’s review of symptoms and how to manage/treat these symptoms is good.

Three points made in the booklet were wrong, as far as I’m concerned:

1.  “LBD can occur alone or along with Alzheimer’s or Parkinson’s disease.”

Robin’s comment:  Yes, LBD frequently co-occurs with Alzheimer’s Disease.  But it never co-occurs with Parkinson’s Disease.  You can make a good argument that Parkinson’s Disease Dementia — one type of LBD — *is* Parkinson’s Disease.  And many neurologists make the argument that Dementia with Lewy Bodies — another type of LBD — *is* Parkinson’s Disease.  I have never heard *any* LBD expert say that LBD co-occurs with Parkinson’s.

2.  “It’s important to know which type of LBD a person has, both to tailor treatment to particular symptoms and to understand how the disease will likely progress.”

Robin’s comment:  There are two types of LBD — DLB and PDD.  Treatment is tailored to symptoms present, not which type of LBD a person has.  Also, I’m not sure how knowing the type of LBD will help one understand how the disease will progress.  Survival time is shorter in DLB than PDD but the progression is quite individual.

3.  “(LBD) represents an important link between (Alzheimer’s and Parkinson’s).”

Robin’s comment:  The link between LBD and Alzheimer’s is unclear to me.  Yes, LBD frequently co-occurs with AD but the two disorders have little in common.

There were a few other items that could’ve used further clarification:

4.  “Many LBD experts prefer quetiapine or clozapine to control different behavioral symptoms.”

Robin’s comment:  This is certainly true.  But, in some with LBD, even these preferred medications can cause neuroleptic malignant syndrome.

5.  “Urinary incontinence should be treated cautiously…”

Robin’s comment:  This is certainly true.  I wish more had been said about treatment of this symptom as it’s a very common symptom.

6.  Like nearly all other publications I’ve seen for lay people, this booklet conflates DLB and PDD.  They actually have different diagnostic criteria but you wouldn’t know it from this publication.

If you find worthwhile items in the booklet, please let me know!

Robin