Category Archives: Alzheimer’s

Recommended Blogs – About Having Alzheimer’s and About the Final Phase of Life

Date
Posted by

The New York Times has a blog called “The New Old Age.”  It often has good articles on caregiving and aging.  Last Monday’s post is about two recommended blogs — one about having Alzheimer’s Disease, and the other on “the final phase of life.”  Both bloggers are physicians – one retired and one still active.  The blogs are:

“Watching the Lights Go Out”
davidhilfiker.blogspot.com
by David Hilfiker, a 68-year-old retired MD who was diagnosed with Alzheimer’s Disease in September 2012

“Life in the End Zone”
blog.drmurielgillick.com/2013/06/back-in-business.html
by Muriel Gillick, MD, a geriatrician and palliative care physician who cares for both elderly parents.  She is also the author of a book titled “The Denial of Aging: Perpetual Youth, Eternal Life and Other Dangerous Fantasies.”

I took a quick look; both blogs look very well-written.

Here’s a link to the New York Times article about these two blogs:

newoldage.blogs.nytimes.com/2013/06/24/two-blogs-worth-reading/

The New Old Age: Caring and Coping
Two Blogs Worth Reading
The New York Times
By Paula Span
June 24, 2013, 11:50 am

The New York Times post refers to a Washington Post article about David Hilfiker, who lives in Washington, DC.  Here’s a link to Dr. Hilfiker’s Washington Post article:

www.washingtonpost.com/local/a-dc-doctor-blogs-about-his-decline-as-alzheimers-claims-his-mind/2013/03/30/6b007452-9239-11e2-9cfd-36d6c9b5d7ad_story.html

Robin

Therapy Even if No Improvement – Big Change to Medicare Rules

Date
Posted by

Back in October 2012, it was reported that a settlement had been proposed that would affect skilled nursing home stays as well as home health and home therapy services for those with Medicare.

This Monday, the New York Times reported that Congress also took action to allow exceptions to what Medicare pays for physical, occupational, and speech therapy.  Plus, the proposed settlement had been approved by the court; Medicare is now prohibited from denying patients coverage for “skilled nursing care, home health services or outpatient therapy because they had reached a ‘plateau,’ and their conditions were not improving.”

This will have an impact on Medicare beneficiaries who have PSP, CBD, MSA, and DLB diagnoses.

The Center for Medicare Advocacy (different from the Centers for Medicare & Medicaid Services), has a webpage devoted to “explaining how to challenge a denial of coverage that is based on the lack of improvement.”  See:

www.medicareadvocacy.org/take-action/self-help-packets-for-medicare-appeals/

And, the Center for Medicare Advocacy “advises beneficiaries to show a copy of the settlement — also available from the Web site — to your health care provider at your next physical therapy appointment if you are concerned about losing Medicare coverage.”

See a highlighted copy of the settlement:

www.medicareadvocacy.org/wp-content/uploads/2012/12/Settlement-Agreement-for-Web.pdf

Here’s a link to the NYT article:

newoldage.blogs.nytimes.com/2013/02/04/therapy-plateau-no-longer-ends-coverage

The New Old Age: Caring and Coping
Finances & Legalities 
Therapy Plateau No Longer Ends Coverage
New York Times
By Susan Jaffe
February 4, 2013, 7:49 am

Robin

Bad News about Both PSP/CBD Experimental Trials in 2012

Date
Posted by

I wanted to be sure everyone saw the very bad news that came out in 2012:  the two experimental drug trials in PSP — Davunetide and Nypta.

Hopefully the search will continue for a medication that can slow the progression of PSP and CBD — both tauopathies.  And hopefully cures can eventually be found for these diseases.

Adam Boxer, MD, the neurologist at UCSF’s Memory & Aging Clinic and the principal investigator of the Davunetide trial, has spoken forcefully in the past about pharmaceutical companies using PSP — rather than Alzheimer’s Disease — as the testing ground for tau-modifying agents.  I hope the failure of Davunetide doesn’t mean that Dr. Boxer’s theory has been disproven.

A small number of people in our local support group participated in the Davunetide trial; UCSF was the lead institution.  (A total of 313 people participated worldwide.)  And a couple of our group members participated in the pilot trial of Davunetide done at UCSF in PSP, CBD, and FTD.  I don’t believe anyone in our group participated in the Nypta trial.  (UCLA was the nearest institution participating.)  I would like to thank those who participated.  Without their sacrifice, we would not have known whether this medication was effective or not.

Anecdotal evidence in at least one local participant suggested
Davunetide was effective.  I guess that was placebo effect?

The manufacturer of Davunetide, Allon Therapeutics, had a phone call with investors the day the results were announced in mid-December 2012. Janet Edmunson, the chair of CurePSP, listened to a recording of the call.  One point that she passed on — that was not in the press release — was that perhaps not enough of the medication was given. Would a higher dose work?  Allon said the results are being further analyzed to “determine if there is any evidence of an effect or explanation for the absence of an effect.”

Apparently, the bad news about the worldwide Nypta trial came out in early 2012.  UCLA was the nearest participating medical center.  I don’t think Dr. Boxer mentioned this failed trial at the October symposium.  Noscira, the manufacturer of Nypta (tideglusib), said that the experimental medication failed in PSP but a trial in Alzheimer’s Disease would continue in 2012.  No results of that have been announced yet.

This seems to be the path of most medical research — some steps
forward and lots of steps back (or sideways).  We’ll just have to keep hoping for a breakthrough as the researchers continue to plod away.

If you’d like to read the details on the bad news, check out:

Allon Therapeutics press release regarding Davunetide
www.allontherapeutics.com/2012/12/allon-announces-psp-clinical-trial-results/
Excerpt:  “The study had co-primary outcome measures: the Progressive Supranuclear Palsy Rating Scale (PSPRS), and the Schwab and England Activities of Daily Living (SEADL).  Data analysis failed to detect an effect on either the PSPRS or the SEADL.”

Noscira CEO letter regarding Nypta (tideglusib)
www.noscira.com/noscira.cfm?idIdioma=2&idArticulo=97

Robin

“3 Questions to Ask About Assisted Living Memory Care Communities”

Date
Posted by

This post will be of interest to those who may be looking at memory care facilities for their loved ones with dementia.  (This is the name given to care facilities that specialize in caring for those with dementia.  Since the most common dementia is Alzheimer’s Disease, and AD has prominent memory issues, these facilities use the word “memory care” rather than “dementia care.”)

Steven Russell, BSN’s treasurer, recently came across a column in the Huffington Post in December 2011 on three broad questions to ask memory care facilities:

1- how good is the quality of care?
2- how rich and individualized is the activity program?
3- how well-designed and maintained is the place?

For each broad question, there are many sub-questions provided.  The article was written by Marguerite Manteau-Rao, the Palo Alto-based social worker who is a long-time BSN friend.

Here’s a link to the article:

www.huffingtonpost.com/marguerite-manteaurao/memory-care-communities_b_1155043.html

3 Questions to Ask About Assisted Living Memory Care Communities
by Marguerite Manteau-Rao, LCSW
Huffington Post
Posted 12/21/11

Robin

 

 

WSJ Article About Tau Researcher

Date
Posted by

This post is about tau protein. Tau is the protein involved in PSP, CBD, and Alzheimer’s Disease.

This Wall Street Journal article is on researcher Claude Wischik, tau protein, and Alzheimer’s research. Dr. Wischik “has long backed a minority view: that a protein in the brain called tau – not plaque – is largely responsible” for Alzheimer’s. Since this article is from the WSJ, there is an investment focus to part of the article.

For me, the most interesting part of the article was one sentence in parentheses. Dr. Wischik founded a company called TauRX Pharmaceuticals. They did a small study of a tau drug, called Rember, in Alzheimer’s patients. They never published the full results. “(Dr. Wischik says it didn’t to protect the company’s commercial interests.)”

There’s also a 5-minute video that focuses on the tau vs. amyloid debate. (This is sometimes called the “tauists vs. the BAPtists.” BAP = beta amyloid protein.) I’d recommend watching the video and then reviewing the article, if you are still interested.

Robin

5-minute video (after 15-second ad) on tau tangles, why Dr. Wischik focused on tau, why the rest of the community focused on amyloid, and what else is going on besides protein accumulation:

http://online.wsj.com/article/SB1000087 … bs%3Dvideo

http://online.wsj.com/article/SB1000087 … %3Darticle
(I was able to view the full article this morning though it’s listed as “subscriber content only.” Probably this website error will be fixed soon)

HEALTH INDUSTRY
Updated November 9, 2012
Wall Street Journal

An Outcast Among Peers Gains Traction on Alzheimer’s Cure
By Jeanne Whalen

Some people collect stamps, others vintage cars. As a young Ph.D. student at Cambridge University in the 1980s, Claude Wischik was on a mission to collect brains. …