One patient’s approach to living

An online friend, Aletta, who has multiple system atrophy (MSA), posted the following recently to an online support group. She
has lived for nearly two decades with MSA so maybe there is
something to her advice!


Posted by Aletta
February 7, 2012
to the PSPinformation online support group

Personally I think much more needs to be done to help us live with the devastating symptoms, and to help slow down or even halt the progression of the disease to where we can have near normal lifespans.

So do a lot of reading and if you see something you want to try find a doctor who will let you try things and will monitor you thoroughly. If I had just sat back and taken this illness I would have been gone by now, and I really want to live to be eighty more than anything. I can’t be too unhappy with how it has gone until now, I am a few years past my expiry date, and still able to type and send you posts. I spent my weekend with my grand-kids already 8 and 6 years old, I almost did no live to see them at all. Find people who live longer than others, find out what they did and try doing that also. Never assume because a doctor read in his old textbook that you now have a lifespan of 2-8 years that this is gospel, it is not. Sadly believing something can result in the self fulfilling prophecy you might give up and dread the future, become depressed, and give up. If you have the will to fight and the desire to make every minute of what we have left count, just go on – enlist those who love you to help you out with it and decide on what you want to do and find a doctor who understands that, Ask lots of questions on groups like this one, find what works, what does not.

Look at the limitations you have and construct a different life reduce stresses, get lots of rest, learn to say no so you do not overdo it and find ways of filling that time at rest with laughter, books on tape, container gardening, art, crafts, music, whatever makes you happy and spend the time you have a with some energy being with those you love. Find some things that might help and are otherwise not dangerous (in my case cinnamon, flax seed, senna tea, video games, laughter, walnuts and blueberries) and have them often. Very importantly spell out what you need to those around you, they are not psychic.

Comparing survival time by dementia type (AD, DLB, FTD, VaD, mixed)

These Australian researchers reviewed the literature on survival time with Alzheimer’s Disease, mixed dementia, vascular dementia, frontotemporal dementia, and dementia with Lew bodies.

After reading this abstract, I wondered if the Australian authors were native English speakers.  Lots of sentences are hard to understand!

Example:  “Relative loss of life expectancy decreases with age at diagnosis across varying gender….”

I think this means:  The older you are, the lower your relative loss of life expectancy is.  And this was truth whether you are male or female.

Here’s another weirdly worded sentence:  “We found that the impact overall of dying from dementia decreases with increasing age…”

For me, the two key takeaways were:
* there aren’t enough studies in dementia with Lewy bodies to have a good idea as to survival time
* survival time “cannot be predicted accurately”

I think that’s enough about this paper for all of us.  The abstract is copied below.



International Psychogeriatrics. 2012 Feb 13:1-12. [Epub ahead of print]

Dementia time to death: a systematic literature review on survival time and years of life lost in people with dementia.

Brodaty H, Seeher K, Gibson L.
Dementia Collaborative Research Centre, University of New South Wales, Sydney, NSW, Australia.

Background: Life expectancy with dementia directly influences rates of prevalence and service needs and is a common question posed by families and patients. As well as years of survival, it is useful to consider years of life lost after a diagnosis of dementia.

Methods: We systematically reviewed the literature on mortality and survival with dementia which were compared to estimated life expectancies in the general population. Both were then compared by age (under 65 years vs. 65+ years), gender, dementia type, severity, and two epochs (prior to and after introduction of cholinesterase inhibitors in 1997).

Results: Survival after a diagnosis of dementia varies considerably and depends on numerous factors and their complex interaction. Relative loss of life expectancy decreases with age at diagnosis across varying gender, dementia subtypes (except for frontotemporal dementia and dementia with Lewy bodies), and severity stages. Numerous study deficiencies precluded a meta-analysis of survival in dementia.

Conclusion: Estimates of years of life lost through dementia may be helpful for patients and their families. Recommendations for future research methods are proposed.

PubMed ID#:  2232533  (see for this abstract only)

Grief has to do with failure to accept change

This is a lovely New York Times ( article by a gentleman whose grandmother JoAnn was diagnosed with Alzheimer’s seven years ago.  I think the message applies to our approach in coping with any family member’s diagnosis — not just a diagnosis of dementia.

Here’s a key excerpt:

“But what I learned from my grandmother’s journey through Alzheimer’s was that my grief regarding her condition had largely to do with my failure to accept the change she was undergoing.  Regardless of how I felt about it, JoAnn’s change was the truth. What was gone in her was not missing. And the more fully I understood that, the more present I was able to be during her final years.”

Tying in one tidbit from a webinar I was on earlier today, it sounds as if the gentleman was stuck in the “denial” phase of grief and had to get to the “acceptance” stage before he could adjust his thinking “to be present” with his grandmother.

Here’s a link to the full article:

Well Blog
Finding Joy in Alzheimer’s
By Robert Leleux
New York Times
February 16, 2012, 12:01 am

The author of the article, Robert Leleux, is the author of the book “The Living End: A Memoir of Forgetting and Forgiving.”

Happy reading!

Tasks associated with losing a loved one

This Wall Street Journal article from a couple of weeks ago is addressed to adult children but lots of the information applies to spouses and siblings as well.  The many tasks that come with losing a parent are detailed — sifting through belongings, taking care of financial matters, doling out heirlooms, and documenting tax deductions if items are donated to charities.

Here’s a link to the full article:

Wall Street Journal
The Pearls Are Mine!
By Kelly Greene
February 4, 2012



UCLA uses PET scans to study tau tangles

This news out of UCLA on Monday February 13th has relevance for the PSP (progressive supranuclear palsy) and CBD (corticobasal degeneration) communities.  Both PSP and CBD are disorders of tau.  In Alzheimer’s Disease (AD), tau is a problem along with a second protein called beta amyloid.  A couple of years ago, researchers out of the University of Pittsburgh developed a compound that attaches itself to amyloid in the brain such that PET scans can help identify those with a high chance of having Alzheimer’s Disease.  A year or so ago, it was announced that researchers at UCLA had developed a compound that attaches itself to tau in the brain such that PET scans can help identify those with tauopathies, such as AD, PSP, and CBD.

This study published out of UCLA this week is about using this new PET scan compound to identify which subjects had tau tangles in the brain and predicted which subjects would experience cognitive decline.  Though this particular study focused on mild cognitive impairment (which can “convert” to Alzheimer’s Disease), it has implications for the PSP and CBD communities.

The full press release is copied below.  (Note that there are quite a few typos in this press release.)



UCLA brain-imaging technique predicts who will suffer cognitive decline over time
By Rachel Champeau
UCLA Newsroom
February 13, 2012

Cognitive loss and brain degeneration currently affect millions of adults, and the number will increase, given the population of aging baby boomers. Today, nearly 20 percent of people age 65 or older suffer from mild cognitive impairment and 10 percent have dementia.

UCLA scientists previously developed a brain-imaging tool to help assess the neurological changes associated with these conditions. The UCLA team now reports in the February issue of the journal Archives of Neurology that the brain-scan technique effectively tracked and predicted cognitive decline over a two-year period.

The team has created a chemical marker called FDDNP that binds to both plaque and tangle deposits — the hallmarks of Alzheimer’s disease — which can then be viewed using a positron emission tomography (PET) brain scan, providing a “window into the brain.” Using this method, researchers are able to pinpoint where in the brain these abnormal protein deposits are accumulating.

“We are finding that this may be a useful neuro-imaging marker that can detect changes early, before symptoms appear, and it may be helpful in tracking changes in the brain over time,” said study author Dr. Gary Small, UCLA’s Parlow–Solomon Professor on Aging and a professor of psychiatry at the Semel Institute for Neuroscience and Human Behavior at UCLA.

Small noted that FDDNP–PET scanning is the only available brain-imaging technique that can assess tau tangles. Autopsy findings have found that tangles correlate with Alzheimer’s disease progression much better than do plaques.

For the study, researchers performed brain scans and cognitive assessments on the subjects at baseline and then again two years later. The study involved 43 volunteer paricipants, with an average age of 64, who did not have dementia. At the start of the study, approximately half (22) of the participants had normal aging and the other half (21) had mild cognitive impairment, or MCI, a condition that increases a person’s risk of developing Alzheimer’s disease.

Researchers found that for both groups, increases in FDDNP binding in the frontal, posterior cingulate and global areas of the brain at the two-year follow-up correlated with progression of cognitive decline. These areas of the brain are involved in decision-making, complex reasoning, memory and emotions. Higher initial baseline FDDNP binding in both subject groups was associated with a decline in cognitive functioning in areas such as language and attention at the two-year follow-up.

“We found that increases in FDDNP binding in key brain areas correlated with increases in clinical symptoms over time,” said study author Dr. Jorge R. Barrio, who holds UCLA’s Plott Chair in Gerentology and is a professor of molecular and medical pharmacology at the David Geffen School of Medicine at UCLA. “Initial binding levels were also predictive of future cognitive decline.”

Among the subjects with mild cognitive impairment, the level of initial binding in the frontal and parietal areas of the brain provided the greatest accuracy in identifying those who developed Alzheimer’s disease after two years. Of the 21 subjects with MCI, six were diagnosed with Alzheimer’s at follow-up, and these six subjects had higher initial frontal and parietal binding values than the other subjects in the MCI group.

In the normal aging subjects, three developed mild cognitive impairment after two years. Two of these three participants had had the highest baseline binding values in the temporal, parietal and frontal brain regions among this group.

Researchers said the next step in research will involve a longer duration of follow-up with larger samples of subjects. In addition, the team is using this brain-imaging technique in clinical trials to help track novel therapeutics for brain aging, such as curcumin, a chemical found in turmeric spice.

“Tracking the effectiveness of such treatments may help accelerate drug discovery efforts,” Small, the author of the new book “The Alzheimer’s Prevention Program,” said. “Because FDDNP appears to predict who will develop dementia, it may be particularly useful in tracking the effectiveness of interventions designed to delay the onset of dementia symptoms and eventually prevent the disease.”

Small recently received research approval from the U.S. Food and Drug Administration to use FDDNP–PET to study people with mild cognitive impairment to determine whether a high-potency form of curcumin — a spice with anti-amyloid, anti-tau and anti-inflammatory properties — can prevent Alzheimer’s disease and the accumulation of plaques and tangles in the brain.

UCLA owns three U.S. patents on the FDDNP chemical marker. The Office of Intellectual Property at UCLA is actively seeking a commercial partner to bring this promising technology to market.

Small and study authors Jorge R. Barrio and S. C. Huang are among the inventors. Disclosures are listed in the full study.

Additional authors included Prabha Siddarth, Linda M. Ercoli, Alison C. Burggren, Karen J. Miller, Dr. Helen Lavretsky and Dr. Susan Y. Bookheimer, all of the UCLA Department of Psychiatry and Biobehavioral Sciences, and Vladimir Kepe and S.C. Huang, who are part of the UCLA Department of Molecular and Medical Pharmacology.

The study was funded by the National Institutes of Health and the U.S. Department of Energy.