Category Archives: LBD

Short brochure on neurogenic orthostatic hypotension (Lundbeck)

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Orthostatic hypotension (OH) is the symptom where your blood pressure falls suddenly once you stand up, resulting in dizziness, lightheadedness, passing out, vision changes, or falling.  It’s called neurogenic orthostatic hypotension (nOH) when the cause is a neurological disorder, such as multiple system atrophy.

Northera (droxidopa) is a new medication to treat nOH.  The pharmaceutical company selling Northera is Lundbeck.  At the end of 2014, Lundbeck published a brochure on nOH.  MSA is specifically mentioned in the brochure along with Parkinson’s Disease and Pure Autonomic Failure (PAF).

Vera just posted a link on the ShyDrager Yahoo!Group to the brochure:

www.lundbeck.com/upload/us/files/pdf/Fact_Sheets/UBR-D-00162%20vFinal_nOH%20Patient%20Brochure%20%282%29.pdf

I thought this was a good explanation:

“Unfortunately, some people with nervous system disorders, such as PD, MSA, or PAF, may develop symptomatic nOH. That’s because of the way these diseases can damage the nervous system. As a result, your nervous system may not be able to make or release enough norepinephrine, which may lead to a communication breakdown with the blood vessels. This means that when you stand up from sitting or lying down, the blood is pulled down into the lower part of your body. But since the blood vessels don’t receive the message that they need to constrict, blood pressure drops and not enough blood reaches your brain. This is what leads to symptoms like dizziness, lightheadedness, vision changes, or passing out.”

Interestingly, their medication isn’t mentioned.  Perhaps they aren’t allowed to bring that up.

Robin

Targeting Alpha-Synuclein (protein in MSA and DLB)

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This email may be of interest to those dealing with MSA and DLB — both of which are disorders of the protein alpha-synuclein.

The American Academy of Neurology Annual Meeting took place in mid-April.  Medscape is a medical information company.  Two Medscape representatives met with the senior associate director of research programs at the Michael J. Fox Foundation for Parkinson’s Research.  They discussed the latest in PD research.  The part of the article on alpha-synuclein is of most interest to our MSA and DLB group members.  (In fact, MSA is mentioned below – as “multi-system atrophy.”)

As this article is written for healthcare professionals, some of the text can be challenging.  But I’m sure you’ll find it interesting to see where the research is focused now.

www.medscape.com/viewarticle/844223

(Most likely you need to have a Medscape account to access this webpage.  As I recall, it’s free to open an account.)

Robin

“The 2 Most Important Caregiver Tips”

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In this short article in US News & World Report, the author limits her discussion to the two most important caregiver tips.

The two tips are:

#1 – Learn as much you can about your loved one’s disease or illness to know what to expect. Otherwise, you’ll be driving blind.

#2 – Care for your loved one the same way you would want to be cared for if you were living with the disease. After learning as much as you can about [your loved one’s illness], put yourself in your loved one’s shoes by asking yourself, “What fears and uncertainties would I feel in the face of this…diagnosis?”

I think this is good advice. But #1 is hard to achieve when the specialists aren’t even able to say with better than 50/50 odds what the neurological diagnosis is! So you learn all you can about one disorder only to learn a new diagnosis a year or so later.

The author notes that someone at the Lewy Body Dementia Association described LBD as a disorder that: “walks like Parkinson’s and talks like Alzheimer’s.” That sounds like a good description for some with LBD.

Here’s a link to the article:

health.usnews.com/health-news/patient-advice/articles/2015/05/01/the-2-most-important-caregiver-tips

The 2 Most Important Caregiver Tips
How to survive, thrive and even find joy in caring for a loved one with dementia.
US News & World Report | Health
By Brenda Avadian
May 1, 2015 | 9:00 a.m. EDT

Robin

Examples of difficulty “retrieving memories”

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There was an interesting post on the LBDcaregivers Yahoo!Group over the weekend that I thought I’d pass along. The information isn’t new but I really appreciated reading the examples given. (By the way, this issue isn’t unique to LBD; it happens in other non-Alzheimer’s dementias as well. The brain is a fascinating place!)

Last week, someone had posted about her LBD father putting all of his pills in a glass of water and then drinking the water. It seemed that the father had forgotten the right order of things.

Over the weekend, a second LBD caregiver replied this way:

“One way LBD differs slightly from Alzheimer’s is that there are more executive function difficulties with LBD. According to my research, Alzheimer’s patients have a great deal of trouble storing memory. That’s why they’ll repeat the same story 2 or 3 times in a ten minute conversation, for instance. They don’t remember that they’ve already told the story because that memory didn’t get stored in their brain. LBD patients don’t normally have trouble storing memory, they have trouble retrieving it correctly. Back when my husband was still capable of fixing his lunch, he would do things like put a hotdog on a plate, put it in the microwave, put ketchup on it THEN put it in the bun. He had all the steps, just not in the right order. One time, he filled a glass bowl with tomato soup, then put the bowl directly on the stove unit. Again, he knew soup went in a bowl and needed to be heated, but he left about the part about using a pan.”

“Her mother seemed to have classic dementia. Or did she?”

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This is a good article about the symptoms of normal pressure hydrocephalus (NPH).  Often, NPH is misdiagnosed as progressive supranuclear palsy or Lewy body dementia!

In this case, the sufferer’s cognitive symptoms improved immediately after brain suergery.

Here’s a link to the full article:

https://www.washingtonpost.com/national/health-science/her-mother-seemed-to-have-classic-dementia-or-did-she/2015/03/02/89b1ec1e-a736-11e4-a06b-9df2002b86a0_story.html

Her mother seemed to have classic dementia. Or did she?
By Roni Caryn Rabin
Washington Post
March 2, 2015