The Tangled Neuron

The Thousand Mile Stare: A Conversation with Gary Reiswig

My friend Chuck Jackson was diagnosed with young onset Alzheimer’s disease at age 50.  It wasn’t a total surprise to him – his brother was being treated for Alzheimer’s and many of his cousins had it.  His mother and at least nine of her siblings had it.  Most had symptoms early in midlife; some died while still in their 50s.  Chuck and many of his relatives have a rare genetic variation called presenilin 2, or PS2, that almost guarantees a person will develop Alzheimer’s.

It’s only recently that the stigma attached to dementia has lessened.  For a long time, Chuck’s relatives didn’t talk much about their family history.  But since his diagnosis in 2004, Chuck has talked with support groups, participated in research and testified before Congress.
 
His cousin Gary Reiswig, who now knows he does not carry the PS2 gene variation, has gone even more public about the disease that has ravaged his family.  His new book, The Thousand Mile Stare: One Family's Journey through the Science and Struggle of Alzheimer's, is a very personal journey through generations of disease and tragedy.

The book opens in 1936, when Gary and Chuck’s grandfather, perhaps in the early stages of Alzheimer’s, drove his truck into the path of an oncoming train in rural Oklahoma.  He and one of his sons were injured, and his wife was killed.  From that story, so emblematic of the family’s problems, the book spans two continents and more than two hundred years.  The family’s roots as “Volga Germans” who left Germany to farm land along the Volga River in Russia in the 1700s are interesting, but it’s the little details of daily life with Alzheimer’s that make this book so riveting.   

MCI Symposium: Memory Loss and Exercise

Nicola Lautenschlager, MD, FRANZCP

I recently started running again, five years after a knee injury slowed me down.  It isn't pretty, but it might be good for my brain.

At last year’s MCI Symposium, Nicola Lautenschlager, Professor of Psychiatry of Old Age at the University of Western Australia, presented the results of a clinical trial of exercise to prevent cognitive decline. Those who took part in an exercise program actually improved their scores on tests of memory and thinking.

     Yonas Geda, MD

Since then, results of several studies on exercise to prevent memory loss or improve memory and thinking have been published, including a population-based study led by Yonas Geda at Mayo Clinic and a small trial led by Laura Baker at the University of Washington.

Laura Baker, Ph.D.

The results of these studies are being published so fast I can hardly keep up.  You can read what I've found out so far in my latest report on the MCI Symposium.

Johnson & Johnson Risperdal Kickback Allegations

Last week, the New York Times published an article about a U.S. government complaint that Johnson & Johnson paid kickbacks to the biggest nursing home pharmacy in the U.S. to increase prescriptions of the antipsychotic Risperdal and other drugs.  On her blog ElderCareTalk, Laura Bramly has posted a great analysis of what this means for people whose family members are in memory care units.

From AA to AD, A Wistful Travelogue: Book Review

Does memory loss bring wisdom?  It’s really a lifetime of many losses, not just memory loss, that Mike Donohue describes in his new book, From AA to AD, A Wistful Travelogue.  And those losses seem to have brought him wisdom.

A retired lawyer, Mike walks readers through the ups and downs of his life, including his recovery from alcoholism and the Alzheimer’s diagnosis he calls his worst loss.  He has come to see his alcoholism and recovery as the key to dealing with this new diagnosis.

Alzheimer's Research: Starting Over?

This past Thursday, the University of Pennsylvania’s Institute on Aging presented “A Conversation on Breaking the Treatment Barrier: Moving from Disease Modification to Prevention of Alzheimer's Disease.”  Russell Katz, MD (Director, Division of Neurology Products, Food and Drug Administration) and Zaven Khachaturian, Ph.D. (President, Prevent Alzheimer’s Disease by 2020 Inc [PAD2020] and Senior Science Advisor, Alzheimer’s Association) gave presentations, followed by a question and answer period.

While headlines are still focused on curing Alzheimer’s, finding disease-modifying treatments and reducing amyloid in the brain, it seemed to me that the experts and the audience at this event had moved far beyond these topics.

Mobile Phones, Alzheimer's and Brain Health

University of South Florida researchers have completed a unique study of the effect of electromagnetic waves on the memory and thinking of mice.  In their study, half the mice were “normal,” and half were genetically engineered to develop the plaques associated with Alzheimer’s.  The mice were exposed to an amount of electromagnetic waves meant to simulate the exposure humans get from using mobile phones.

This exposure to radiation seemed to improve memory and thinking in the “normal” mice and prevent dementia in the “Alzheimer’s” mice, according to the scientists.  Autopsies of the mice exposed to radiation seemed to show fewer plaques in their brains.

Does this mean you should stop worrying about potentially harmful effects of mobile phone use?  Or that using your mobile phone a lot will prevent memory loss?  Not according to Dr. William Thies, Ph.D., chief medical and scientific officer for the Alzheimer’s Association.

Professional Rememberers?

Anne Tyler’s new book Noah's Compass is out today.  It reportedly has a character who is a “professional rememberer.”

Is there such a profession?  Would the person perform functions that family members of people with memory loss often do?  Or is there more involved?

I’ll have to read the book.

MCI Symposium: Vascular Dementia and MCI, Part 1

        Vladimir Hachinski, MD, FRCPC, DSc

Dr. Vladimir Hachinski, a prominent stroke researcher, thinks that treating vascular diseases such as high blood pressure and “hardening of the arteries” can reduce your risk of both stroke and Alzheimer’s.  Several months after the 7th Annual Mild Cognitive Impairment Symposium, I’ve finally managed to report on Dr. Hachinski’s keynote speech at that event, and on his advice to people concerned about developing Alzheimer’s.

Another Study Links Diabetes to Dementia

British researchers have published study results suggesting that if you have been diagnosed with Mild Cognitive Impairment, having diabetes increases your risk of developing full-blown dementia.

Ginkgo Fails Again

Late last year, initial results from GEMS, the Ginkgo Evaluation of Memory Study, showed that ginkgo did not prevent older people from developing Alzheimer’s or other dementias during a six year follow up period.

But did it help prevent smaller changes in memory and thinking in study participants?  What about the milder memory loss considered normal with aging?  In an analysis of GEMS data published this week, ginkgo failed to slow these smaller declines in memory as well.

Speaking Our Minds: Book Review

Thoughtful.  Dignified.  Funny.  That’s how I would describe the seven people profiled in the new edition of Lisa Snyder’s Speaking Our Minds: What It's Like to Have Alzheimer's.  Lisa is a clinical social worker at the University of California, San Diego’s Shiley Marcos Alzheimer’s Disease Research Center, and the editor of the Perspectives newsletter.

There’s not a lot about loss of self or long goodbyes in the stories of these seven men and women.  In their own words, they tell how Alzheimer’s has changed their relationships, their daily routines and their philosophies.  Lisa’s own narrative, woven around each story, adds context.

You can read Lisa’s thoughts on what we can learn from people with Alzheimer’s and why she published this revised edition in our Q & A with Lisa Snyder.

More Evidence Linking Sports-Related Head Injury to Memory Loss

Today's New York Times has a good article on brain injury and memory loss in a professional hockey player.

Alzheimer's Clinical Trial Setbacks

A clinical trial of an Alzheimer’s treatment has failed, and another has been modified due to serious side effects.

Surgery and Memory Loss Revisited

Judging by the comments on my previous post on surgery, anesthesia and memory loss, it's common to have cognitive problems after surgery.  But a new study by researchers at University of Washington in St. Louis shows that surgery does not necessarily lead to memory loss.

These results conflict with those of other studies, and more research is needed.

Analyzing a Famous Brain

The Brain Observatory, a lab based at the University of California, San Diego, studies the structure of the human brain.   Its new project – analyzing the brain of a man who developed amnesia in 1957 after surgery to treat seizures – is generating a lot of publicity.

Family History of Alzheimer's and High Blood Pressure

Summary:   Middle-aged people whose parents were diagnosed with Alzheimer’s tend to have higher blood pressure and, at least in the lab, their blood produces more proteins that contribute to inflammation.  These characteristics may increase their risk of developing dementia.  Controlling high blood pressure in this group could lower their overall risk.

         Eric van Exel, MD, Ph.D.

A new study led by Eric van Exel at VU University Medical Center in Amsterdam compared characteristics of 206 middle-aged people whose parents were diagnosed with Alzheimer’s to those of 200 people of similar age whose parents were cognitively normal.As expected, more children with a parental history of Alzheimer’s carried the APOE4 genetic variation that increases the risk of dementia.  Independent from their APOE4 status, these children also had higher blood pressure and in the lab, their blood produced more of certain proteins that contribute to inflammation.

Another Video, Another Grim Portrayal

Last month, a group of people with memory loss, their families and doctors successfully petitioned the French Alzheimer’s Association to drop plans to promote a video of people who appeared to have very advanced dementia in dire situations.

This week, I got an email invitation from the national Alzheimer’s Association to view a similar video of a young daughter dealing with her confused and paranoid mother.  It has the same feel as the French Alzheimer’s Association video – stark and flat, with dark music in the background.

This video may represent one family’s reality.  But with the help of treatments, adjustments to lifestyle, coping mechanisms and friends and family, people diagnosed with Alzheimer’s and other dementias often lead interesting and pleasant lives.  Why not a video showing someone volunteering in the community, enjoying his family, or playing a musical instrument?

There’s still too much shame and horror about a diagnosis of dementia, and some of that is fed by one-dimensional portrayals like this video.  We need to balance our view by focusing on the strength and dignity of people with memory loss. 

German Institute Cites Lack of Evidence for Alzheimer's Treatments

The Institute for Quality and Efficiency in Healthcare has issued a new report on Alzheimer's treatments.  Comissioned by the German government, the report concludes:

• there is not enough proof that memantine (sold as Namenda in the U.S.) is effective in treating Alzheimer's
• cholinesterase inhibitors can "slightly delay" a decline in memory and thinking
• the evidence on ginkgo is mixed
• there's not enough proof that non-drug treatments are effective.

Brain Fitness Trial Online

Brain fitness is a controversial topic.  Can you really prevent or slow memory loss by "training your brain?"  Do improved scores on brain fitness programs translate to improved functionality in everyday life?

There's not enough evidence to answer these questions.  But scientists will have some data to analyze when the results of Brain Test Britain are announced next March.  The study aims to test whether a specific program of brain training can improve performance on unrelated tests of brain function.

The study is being conducted online, so anyone can participate.  I signed up, but have had a hard time finding the 10 minutes, three times per week that is required.  My inbox is full of messages like this one:  "You haven't done a Brain Test Britain training session for ages. This is your last reminder!"

Richard Taylor's New DVD

I just watched Richard Taylor’s new DVD “Be With Me Today.”  The DVD is from his presentation to professionals at the Person-Centered Dementia Care Conference in Atlanta.

In the 51 minute video, he talks about what caregivers (family and professional) can do for people with dementia.

The most interesting part of the presentation is when Richard talks about how people with dementia process things differently than people who don’t.  That seems like a simple insight.  But when I think back to when my father was alive, I wonder if I just assumed he wanted what I would want.  Maybe I should have thought more carefully about what he needed in the last phone conversations and visits we had…

I recommend Richard’s DVD for anyone living with or caring for someone with memory loss.  You can order it through Have a Good Life.