“New Drug Trial Seeks to Stop Alzheimer’s Before It Starts” (NYT)

The New York Times covered the story of the Colombian family with Alzheimer’s back in 2010. Here’s an updated story about a clinical drug trial starting with family members who do not yet have symptoms but who carry the genetic mutation for Alzheimer’s.


May 15, 2012
New Drug Trial Seeks to Stop Alzheimer’s Before It Starts
New York Times
By Pam Belluck
May 15, 2012

Let’s hope they succeed!

Here’s an accompanying BSN post about this article:


“Gregor Wenning: unravelling the mysteries of MSA”

This is a short article about Gregor Wenning, who is one of the world’s experts on multiple system atrophy (MSA). He is based in Austria.



In Context
Gregor Wenning: unravelling the mysteries of MSA
by David Holmes
The Lancet Neurology – Volume 11, Issue 4 (April 2012)

We all need our hobbies; something to take our minds off the daily grind. For some of us it’s stamp collecting, or poetry, or amateur dramatics. For Gregor Wenning it’s musing on the life of Saint Augustine. “I’m fascinated by this really interesting conversion from a rather loose type to a Bishop”, says Wenning, and it turns out he’s not the only one. “The current Pope is really very much influenced by Augustine”, he explains, “and actually, last year in June, I was received by the Pope and I gave him the three volumes that I’ve published on Saint Augustine. To many people it sounds a bit ridiculous, but to me it meant quite a bit. I find philosophy interesting; it’s one of the things that helps to distract me a little bit”. All of which begs the question: if penning theological treatises is a welcome distraction from the day job, what on earth is the day job?

According to Clare Fowler, of the Institute of Neurology at Queen Square, University College London, UK, “Gregor is at the forefront in world understanding of multiple system atrophy (MSA).” As head of clinical neurobiology at the University of Innsbruck in Austria, “his personal efforts have done a tremendous amount to get us to our current level of understanding about how the condition fits with other neurodegenerative diseases”, Fowler explains. No easy feat, considering the fiendish complexity of MSA. “It has so many clinical facets”, explains Wenning. “It’s not only the pathology that is diverse, but also the clinical presentation. It still happens many times that patients are misdiagnosed as having Parkinson’s disease, and they even have invasive therapies, but in the end it evolves into MSA”. Theological pursuits seem simple by comparison.

Born in 1964, in Horstmar, Germany, Wenning’s first experience of neurodegenerative disease came in the most unfortunate of circumstances. “I entered the field of neurodegeneration through my own family story, because my father actually died of motor neuron disease when I was 15”, he recalls. The family was contacted at the time by the eminent neurologist Albert Ludolph, who was just starting to study motor neurone disease at the nearby University of Münster. A few years later, Wenning would find himself in Ludolph’s department studying for his MD, “looking into transcranial magnetic brain stimulation, which at that time [1985] was a very new and exciting tool.”

More excitement was to come when, in 1986, Wenning spent his first clinical year in London at King’s College. “It was the first time I met Niall Quinn and David Marsden, at the movement disorder clinic, and I actually saw my first MSA patient there, presented by Niall Quinn. That was a turning point, and I decided I would really like to go into these movement disorders.” Quinn recalls his first impressions of Wenning as someone who “stood out, as someone who was very bright, and also naturally very inquisitive. He gave me his CV and a photo and said that if ever I was looking for a research fellow he would love to work for me”. It was an initiative that would later pay dividends.

After graduating from Münster in 1990, Wenning worked briefly at the University of Tübingen in Germany researching ataxia, before being made an offer he couldn’t refuse. “Niall Quinn phoned me up and told me there was a job possibility at the UK Parkinson’s Disease Society to spend a 3-year PhD grant on MSA research, and would I be interested? And I just dropped everything—it was the chance of a lifetime”, he recalls with relish. “To have this exposure in Queen Square; to have all these brains around you; it really set off an enormous amount of activity; different types of projects looking at MSA and working out animal models”. It was during this period that Wenning produced what he calls his “best personal paper”: a description of the clinical features and natural history of 100 patients diagnosed with MSA, published in Brain in 1994.

He also met his future wife, Roberta, during this period; and when the 3 year PhD period was up, the two of them started looking for posts together in Germany. Coincidentally, Werner Poewe had just become head of the department of Neurology at Innsbruck, and he was on the lookout for “youngish people to join him to build up the movement disorder unit”, Wenning recalls. “So my wife and I were offered jobs at Innsbruck and we just decided that’s logic; we have to go there and we’ve been there ever since, 17 years now”.

Not a moment has been wasted. Wenning quickly secured European Union funding to establish a consortium for clinical studies of MSA: the European Multiple System Atrophy Study Group (EMSA-SG), and “his energy and thoroughness meant that the EMSA-SG has really produced a large number of important papers on the topic and clinicians and scientists in Europe forged connections”, says Fowler. Quinn agrees, and credits the EMSA-SG with producing some of the most “important multicentre studies on the clinical features, imaging, natural history of MSA, and also trials of potential disease-modifying treatments for the disease”. Under Wenning’s careful stewardship, his laboratory has now grown to a 20 person multidisciplinary team and continues to go from strength to strength. It will, he says, keep plugging away, looking for disease mechanisms, drug targets, and validating new treatment approaches for a disease that Wenning still describes as fascinating, but one that would test the patience of saints.

For more on EMSA-SG see http://www.emsa-sg.org

Copyright © 2012 Elsevier

“Six Signs Memory Problems Could Be Serious”

Johns Hopkins Health Alerts has a good (but alarming!) list of six key signs that memory loss could be serious. The six signs include:

* difficulty with routine tasks
* getting lost
* loss of recent memory
* forgetting simple words
* poor judgment in financial matters
* mood change

The full article is copied below.



Six Key Signs That Memory Loss May Be Serious”
Johns Hopkins Health Alerts

At least three-fourths of people over age 50 report that their memory is not as good as it was. The reality is that more than 90 percent of those who do complain about memory impairment do not have Alzheimer’s or dementia. Many memory complaints reflect changes in ability over time but appear to be relatively minor and due to normal age-related changes in the function of the brain.

So how do you know if your loved one is part of the minority whose changes in memory are more serious and warrant an evaluation by a health professional?

Red flags. Momentarily forgetting someone’s name or a specific word is actually normal and does not necessarily worsen with age. The following behaviors, in contrast, may be signs that something more serious is taking place.

Difficulty with routine tasks. Trouble completing tasks that a person has done many times before, like figuring out a tip at a restaurant, filling out tax forms or managing a checkbook, is a real reason for concern.

Getting lost. Another red flag is when a person becomes lost while walking or driving in a familiar place, even if the person says the navigational difficulties were due to inclement weather or having to make a big detour. This too is a potential warning sign of early Alzheimer’s or dementia that needs to be investigated further.

Loss of recent memory. Forgetting what you had for dinner the day before or what movie you watched a few hours earlier is not always a sign of normal brain aging. Other warnings include forgetting important dates or events or repeatedly asking the same question.

Forgetting simple words. People with Alzheimer’s or dementia may also have difficulty following or joining in a conversation. They may stop in the middle of a sentence and be unable to pick up where they left off. This is different from the occasional difficulty coming up with a name or word.

Poor judgment in financial matters. It’s not uncommon for people with Alzheimer’s or dementia to buy things they don’t need, to give away significant sums of money to telemarketers or unscrupulous salespeople, or to repeatedly make donations in response to mailed or telephoned requests to legitimate organizations.

Mood change. People with Alzheimer’s or dementia may exhibit confusion, suspicion, fear, depression or anxiety, traits that they never had before.

Finally, when a person regularly complains about poor memory and mentions that it is worsening from the year before, it should be looked into.

“Should You Purchase Long-Term-Care Insurance?” (WSJ)

Caregivers may want to consider purchasing long-term-care insurance for themselves. The Wall Street Journal recently asked two financial planners if people should purchase long-term-care insurance. Here’s a link to the “yes” and “no” responses:


Should You Purchase Long-Term-Care Insurance?
Wall Street Journal
May 14, 2012

Let me know what decision you make!

“Making Alzheimer’s Moms Happy With Just a One-Minute Call a Day”

This is a sweet article by my friend Marguerite Manteau-Rao, LCSW.  She’s a Palo Alto-based social worker who focuses on helping caregivers to those with dementia cope throughout their journey.

In the article, she shares her experience of calling her mom for one minute every day.  Her mom lives in France, so Marguerite is a “long-distance caregiver.”

Her suggestions include:
* Make that daily call
* Call at the same time
* Be fully present when you call
* Pack your talk with emotional goodies
* Don’t get hung up on reality

Here’s a link to the full article:


Making Alzheimer’s Moms Happy With Just a One-Minute Call a Day
Huffington Post
by Marguerite Manteau-Rao, Co-Founder of Presence Care Project
Posted: 05/04/2012 3:43 pm