Slashdot Mirror

Robin Williams' Widow Susan Schneider Williams Pens Heartbreaking Essay About His Final Months

"It has been two years since Robin Williams died, and his widow, Susan Schneider Williams, continues to work to spread awareness of the brain disease that led to his suicide, Lewy Body Disease.

In a heartbreaking essay titled "The Terrorist Inside My Husband's Brain," Susan writes about her late husband's final few months and how the disease that he didn't know he had consumed his life. Sharing that Robin's many symptoms didn't fit any one diagnosis, Susan explains that he had to deal with not only physical limitations such as heartburn and poor sense of smell but also mental incapacitation.

"By wintertime, problems with paranoia, delusions and looping, insomnia, memory, and high cortisol levels - just to name a few - were settling in hard," she writes. "Psychotherapy and other medical help was becoming a constant in trying to manage and solve these seemingly disparate conditions.""

- Full Article:

http://www.eonline.com/news/79...

** Essay ("The Terrorist Inside My Husband's Brain"):

http://www.neurology.org/conte...
http://www.neurology.org/conte...
https://web.archive.org/web/20...

** Podcast: Dr. Ted Burns interviews Mrs. Susan Schneider Williams
September 27, 2016 Download Podcast:
https://tools.aan.com/rss/inde...

- About the podcast: "Dr. Ted Burns interviews Mrs. Susan Schneider Williams about her editorial on learning to deal with her husband's (Robin Williams) Lewy Body disease. Dr. Adam Numis is reading our e-Pearl of the week about X-linked myopathy with excessive autophagy. In the next part of the podcast Dr. Andy Schomer concludes his interview with Dr. Eelco Wijdicks about prognostic models and clinical findings of myoclonus."

Robin Williams' Widow Susan Schneider Williams Pens Heartbreaking Essay About His Final Months

"It has been two years since Robin Williams died, and his widow, Susan Schneider Williams, continues to work to spread awareness of the brain disease that led to his suicide, Lewy Body Disease.

In a heartbreaking essay titled "The Terrorist Inside My Husband's Brain," Susan writes about her late husband's final few months and how the disease that he didn't know he had consumed his life. Sharing that Robin's many symptoms didn't fit any one diagnosis, Susan explains that he had to deal with not only physical limitations such as heartburn and poor sense of smell but also mental incapacitation.

"By wintertime, problems with paranoia, delusions and looping, insomnia, memory, and high cortisol levels - just to name a few - were settling in hard," she writes. "Psychotherapy and other medical help was becoming a constant in trying to manage and solve these seemingly disparate conditions.""

- Full Article:

http://www.eonline.com/news/79...

** Essay ("The Terrorist Inside My Husband's Brain"):

http://www.neurology.org/conte...
http://www.neurology.org/conte...
https://web.archive.org/web/20...

** Podcast: Dr. Ted Burns interviews Mrs. Susan Schneider Williams
September 27, 2016 Download Podcast:
https://tools.aan.com/rss/inde...

- About the podcast: "Dr. Ted Burns interviews Mrs. Susan Schneider Williams about her editorial on learning to deal with her husband's (Robin Williams) Lewy Body disease. Dr. Adam Numis is reading our e-Pearl of the week about X-linked myopathy with excessive autophagy. In the next part of the podcast Dr. Andy Schomer concludes his interview with Dr. Eelco Wijdicks about prognostic models and clinical findings of myoclonus."

Someone please submit this story here. It won't allow me to submit the story unless I register.

====
Robin Williams' Widow Susan Schneider Williams Pens Heartbreaking Essay About His Final Months

"It has been two years since Robin Williams died, and his widow, Susan Schneider Williams, continues to work to spread awareness of the brain disease that led to his suicide, Lewy Body Disease.

In a heartbreaking essay titled "The Terrorist Inside My Husband's Brain," Susan writes about her late husband's final few months and how the disease that he didn't know he had consumed his life. Sharing that Robin's many symptoms didn't fit any one diagnosis, Susan explains that he had to deal with not only physical limitations such as heartburn and poor sense of smell but also mental incapacitation.

"By wintertime, problems with paranoia, delusions and looping, insomnia, memory, and high cortisol levels - just to name a few - were settling in hard," she writes. "Psychotherapy and other medical help was becoming a constant in trying to manage and solve these seemingly disparate conditions.""

- Full Article:

http://www.eonline.com/news/79...

** Essay ("The Terrorist Inside My Husband's Brain"):

http://www.neurology.org/conte...
http://www.neurology.org/conte...
https://web.archive.org/web/20...

Someone please submit this story here. It won't allow me to submit the story unless I register.

====
Robin Williams' Widow Susan Schneider Williams Pens Heartbreaking Essay About His Final Months

"It has been two years since Robin Williams died, and his widow, Susan Schneider Williams, continues to work to spread awareness of the brain disease that led to his suicide, Lewy Body Disease.

In a heartbreaking essay titled "The Terrorist Inside My Husband's Brain," Susan writes about her late husband's final few months and how the disease that he didn't know he had consumed his life. Sharing that Robin's many symptoms didn't fit any one diagnosis, Susan explains that he had to deal with not only physical limitations such as heartburn and poor sense of smell but also mental incapacitation.

"By wintertime, problems with paranoia, delusions and looping, insomnia, memory, and high cortisol levels - just to name a few - were settling in hard," she writes. "Psychotherapy and other medical help was becoming a constant in trying to manage and solve these seemingly disparate conditions.""

- Full Article:

http://www.eonline.com/news/79...

** Essay ("The Terrorist Inside My Husband's Brain"):

http://www.neurology.org/conte...
http://www.neurology.org/conte...
https://web.archive.org/web/20...

Took some digging, but here is the original study (paywalled).

Contrary to the click-baity Telegraph article linked, the brains were not shrinking -- there was a correlation between the most strongly linked genes to Alzheimer's and relatively smaller/thinner areas of the brain associated with things like memory and executive function. There was also a correlation between these thin areas and reduced ability of the tested children.

If reproducible, this result would be absolutely shocking. Our current understanding is that the genes in questions (APOE 4) are not even associated with early-onset Alzheimer's, only late-onset, and even then the association is so weak that screening is unjustifiable.

Seems these people and the OP have already given themselves stupidity...

To be fair, the causation implied by the idiotic headline in both the summary, and TFA, did not come from the study. The authors were very careful to say that the effects were only "associated".

Presumably, the same way owning a car and getting audited by the IRS are "associated."

Seems these people and the OP have already given themselves stupidity...

To be fair, the causation implied by the idiotic headline in both the summary, and TFA, did not come from the study. The authors were very careful to say that the effects were only "associated".

First, my deepest sympathies to everyone who loves her. Second, I hope some of you asshats NEVER deal with this but that you grow up! Third, give her time it's not been a week since she went through a major trauma. Make sure she gets to have her baby near her for both of them. She may not be able to hold the baby but it can lay on her or beside her. Let her rest. Previous posters said keep the conversation positive and easy to answer questions. Make sure her body is getting lots of massage and movement to prevent atrophy and for stimulation. I found this also http://www.northeastern.edu/ne... this is a PDF on another method http://www.neurology.org/conte... I think the first link would be most affordable but all info is worthy of investigation. I think time is going to be most beneficial and positive thinking. I hope for the best for all of your family.

Objective: To determine the presence of chronic traumatic brain injury in professional soccer players.

Methods: Fifty-three active professional soccer players from several professional Dutch soccer clubs were compared with a control group of 27 elite noncontact sport athletes. All participants underwent neuropsychological examination. The main outcome measures were neuropsychological tests proven to be sensitive to cognitive changes incurred during contact and collision sports.

Results: The professional soccer players exhibited impaired performances in memory, planning, and visuoperceptual processing when compared with control subjects. Among professional soccer players, performance on memory, planning, and visuoperceptual tasks were inversely related to the number of concussions incurred in soccer and the frequency of "heading" the ball. Performance on neuropsychological testing also varied according to field position, with forward and defensive players exhibiting more impairment.

Conclusion: Participation in professional soccer may affect adversely some aspects of cognitive functioning (i.e., memory, planning, and visuoperceptual processing).

If it happens in adults, isn't it also likely to happen in kids? They may be hard-headed at times, but still ...

It is even worse than that. They just measured various blood nutrient levels. The study says nothing about diet at all. The purpose of the study was to develop an assay to detect vitamin levels, because people with dementia cannot remember well enough to accurately fill out questionnaires. And why can't the journalist cite the study? It is not difficult, they must have the paper right in front of them. What is the problem?

Abstract:
Objective: To examine the cross-sectional relationship between nutrient status and psychometric and imaging indices of brain health in dementia-free elders.

Methods: Thirty plasma biomarkers of diet were assayed in the Oregon Brain Aging Study cohort (n = 104). Principal component analysis constructed nutrient biomarker patterns (NBPs) and regression models assessed the relationship of these with cognitive and MRI outcomes.

Results: Mean age was 87 ± 10 years and 62% of subjects were female. Two NBPs associated with more favorable cognitive and MRI measures: one high in plasma vitamins B (B1, B2, B6, folate, and B12), C, D, and E, and another high in plasma marine Ï-3 fatty acids. A third pattern characterized by high trans fat was associated with less favorable cognitive function and less total cerebral brain volume. Depression attenuated the relationship between the marine Ï-3 pattern and white matter hyperintensity volume.

Conclusion: Distinct nutrient biomarker patterns detected in plasma are interpretable and account for a significant degree of variance in both cognitive function and brain volume. Objective and multivariate approaches to the study of nutrition in brain health warrant further study. These findings should be confirmed in a separate population.

http://www.neurology.org/content/early/2011/12/28/WNL.0b013e3182436598.abstract?sid=eb3fd0d2-1d51-4d8f-b8b3-7fdfb6904a7b

I next googled Google Research and got 3,120,000 results.

Yes, you should put the search terms in quote.

If you had bothered to click on the links you would have seen I did not use quotes for either search.

Even on the very first page of your search results, none of the hits are for "Research"

Let's see... The first result is Diagnostic criteria for research studies: Report of the NINDSAIREN International Workshop*. Notice how "research is in the title. However there is a problem with that page, the only place with Google is a link for Google Scholar searches. There's nothing about Google research.

Now let's try the second result... Research Commentary: Technology-Mediated Learning—A Call for Greater Depth and Breadth of Research, again has research in the title. But like the first there's nothing about Google research.

Do you still stand by your assertion there was not a result on the first page of result for Google Research without research being there? Oh, I just thought of some thing. Perhaps what you meant was "research" was not capitalized. Nope that doesn't explain it because it is capitalized in the title of the second page linked to. Now I wonder if you tried to apply the same (lack of) reasoning to the search for Microsoft Research. I bet I can go through and find the same things in those results.

It should be noted though that, so far as I know, Google doesn't have a dedicated pure R&D department like MSR;

Google labs isn't about research or development? If you don't think it is then I don't know what your definitions of research or development are. The Google FAQs even say it, Who builds these things, anyway?
"Google engineers and researchers do."
I added the bold to highlight the word being highlighted. Of the 8 other questions there was another one where research was used.

Falcon

Just because it's "common sense" doesn't mean it's true. Actually, some research is showing just the opposite:
Body mass index and cognitive decline in a biracial community population
Change in body mass index and risk of incident Alzheimer disease
The metabolic syndrome is associated with decelerated cognitive decline in the oldest old

Just because it's "common sense" doesn't mean it's true. Actually, some research is showing just the opposite:
Body mass index and cognitive decline in a biracial community population
Change in body mass index and risk of incident Alzheimer disease
The metabolic syndrome is associated with decelerated cognitive decline in the oldest old

Just because it's "common sense" doesn't mean it's true. Actually, some research is showing just the opposite:
Body mass index and cognitive decline in a biracial community population
Change in body mass index and risk of incident Alzheimer disease
The metabolic syndrome is associated with decelerated cognitive decline in the oldest old

DCA is not in any medical formulary that I have seen. The prospects of it being accepted as safe and efficacious for anything look rather thin, in view of the neurotoxicity seen in a recently reported clinical trial for a different possible medical indication ----

see "Dichloroacetate causes toxic neuropathy in MELAS, A randomized, controlled clinical trial "
P. Kaufmann, MD, MSc, et al, NEUROLOGY 2006;66:324-330
[see http://www.neurology.org/cgi/content/abstract/66/3 /324 ]

[excerpts:-]

"Objective: To evaluate the efficacy of dichloroacetate (DCA) in the treatment of mitochondrial myopathy, encephalopathy, lactic acidosis and stroke-like episodes (MELAS)."

[...snip...]

"Conclusion: DCA at 25 mg/kg/day is associated with peripheral nerve toxicity resulting in a high rate of medication discontinuation and early study termination. Under these experimental conditions, the authors were unable to detect any beneficial effect. The findings show that DCA-associated neuropathy overshadows the assessment of any potential benefit in MELAS."

It seems that the researchers at Alberta have not put DCA into any patients yet, and so we can't know how the effective human dose (if there even is one) for discouraging the growth of cancer cells relates to the toxic doses (which unfortunately do exist) seen in the reported clinical trial for another potential medical indication.

This begins to smell to me of hype.

-wb-

• DCA and a related chemical TCE were both found to play a prominent role in creating liver cancers with DCA accelerating the growth rate of liver cancer

• Later research found that DCA and its metabolites may have different roles in the cancer process and that dose-response is very non-linear because DCA inhibits its own metabolism.

• DCA has such serious side effects on the human nervous system that in a recent study 15 out of 15 test patients had to be taken off experimental DCA treatment because of toxic neuropathy and the study was terminated early.

• DCA has been found to prevent and reverses pulmonary high blood pressure

"DCA at 25 mg/kg/day is associated with peripheral nerve toxicity resulting in a high rate of medication discontinuation and early study termination. Under these experimental conditions, the authors were unable to detect any beneficial effect."

http://www.neurology.org/cgi/content/abstract/66/3 /324

You might be interested to read the original research paper:

Relation between body mass index and cognitive function in healthy middle-aged men and women
M. Cournot, J. C. Marquié, D. Ansiau, C. Martinaud, H. Fonds, J. Ferrières, and J. B. Ruidavets
Neurology, Oct 2006; 67: 1208 - 1214.
http://www.neurology.org/cgi/content/abstract/67/7 /1208

(Free abstract; Full text or PDF for those who have subscription: your university/library/... computers might have full access)

(Why are submitters/slashdot crew not not doing the little effort to hunt down the original research papers for such stories?)

--
Frederik Questier