“Hard Choices for Loving People” booklet

Most of us aren’t at the point yet when we are thinking about these things — feeding tubes, CPR, and end-of-life care — but it may be beneficial to review some of these decisions and information now with our loved ones.

There’s a book called “Hard Choices for Loving People:  CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness” that may assist in the discussion.  You can purchase the book online ($7). At the present time, it looks like you can read it online at no charge.  See:

www.hardchoices.com

The author, Hank Dunn, a healthcare chaplain, definitely has a point of view, which is that feeding tubes are not appropriate for those with dementia.

Note that “Hard Choices” is available in other languages as well, including Spanish and Chinese.

Robin

 

Differentiating CBD syndrome from PSP using brain atrophy patterns

Sharon, one of our group members, sent this to me today.  It’s an article about a study done at UCSF that shows that the patterns of brain atrophy are different in progressive supranuclear palsy and corticobasal degeneration.

Many of your loved ones see neurologists at UCSF. In fact, Sharon’s husband is one of the PSP patients in the study.

The abstract is copied below.

Robin


Archives of Neurology, January 2006, Vol. 63 No. 1

Patterns of brain atrophy that differentiate corticobasal degeneration syndrome from progressive supranuclear palsy.

Boxer AL, Geschwind MD, Belfor N, Gorno-Tempini ML, Schauer GF, Miller BL, Weiner MW, Rosen HJ
Memory and Aging Center, Department of Neurology, University of California, San Francisco, CA 94143-1207, USA. [email protected]

BACKGROUND: Progressive brain atrophy is associated with the corticobasal degeneration syndrome (CBDS) and progressive supranuclear palsy (PSP). Regional differences in brain atrophy may reflect the clinical features of disease.

OBJECTIVE: To quantify the structural neuroanatomical differences between CBDS and PSP.

DESIGN: A survey of neurologic deficits was conducted in all patients. Voxel-based morphometry was used to quantify structural neuroanatomical differences on magnetic resonance images in each subject group. SETTING: University hospital dementia clinic.

PARTICIPANTS: Fourteen patients who met clinical research criteria for CBD and 15 patients who met clinical research criteria for PSP, who were matched for severity of disease, age, and functional status, and 80 age-matched control subjects.

MAIN OUTCOME MEASURES: Statistically significant differences in regional gray and white matter volume, after multiple comparisons correction, between groups of subjects.

RESULTS: The patients with CBDS displayed an asymmetric (left > right) pattern of brain atrophy that involved the bilateral premotor cortex, superior parietal lobules, and striatum. Progressive supranuclear palsy was associated with atrophy of the midbrain, pons, thalamus, and striatum, with minimal involvement of the frontal cortex. Midbrain structures were more atrophied in PSP than in CBD, whereas dorsal frontal and parietal cortices were more atrophied in CBD than in PSP. The degree of atrophy of the midbrain and pontine tegmentum and the left frontal eye field differentiated the 2 patient groups with 93% accuracy.

CONCLUSIONS: Distinct patterns of brain atrophy exist in CBDS and PSP that can be used to differentiate the 2 diseases. Assessments of brain atrophy in these disorders should be focused on cortical and brainstem ocular motor control areas.

 

PSP and MSA can occasionally co-exist

An article was published earlier this week in a medical journal for neuropathologists.  Here’s the key point of this abstract:

“Based upon the findings in this case, the neuropathologic changes of PSP and MSA are distinct and independent processes, but they can occasionally coexist.”

Obviously these things can ONLY be known through brain donation.  I hope everyone in our group will consider that.

I’ve copied the full abstract below.

Robin


Acta Neuropathologica (Berlin).  2006 Feb 3; 1-7.

Coexistence of PSP and MSA: a case report and review of the literature.

Uchikado H, Delledonne A, Uitti R, Dickson DW

Department of Neuroscience, Neuropathology Laboratory, Mayo Clinic, 4500 San
Pablo Road, Jacksonville, FL, 32224, USA,  [email protected]

Progressive supranuclear palsy (PSP) is a neurodegenerative tauopathy characterized by Parkinsonism, vertical gaze palsy,  and early falls. The neuropathology is characterized by neurofibrillary tangles, tufted astrocytes, and
coiled bodies, but some brains show other pathologic processes. To investigate the frequency of alpha-synuclein pathology in PSP with immunohistochemistry and to report the clinical and pathological features of a case of PSP with
concomitant Multiple system atrophy (MSA) (PSP/MSA), 290 cases of PSP were screened for alpha-synuclein pathology withi mmunohistochemistry.  Double-labeling
immunohistochemistry was performed on a case of PSP/MSA. Among the PSP cases screened for alpha-synuclein pathology, a single case of PSP/MSA  was detected. The patient was an 86-year-old woman with clinical features consistent with PSP. She had no documented dysautonomia or cerebellar signs, and imaging studies were not diagnostic of MSA. Pathological examination showed tau-immunoreactive neuronal and glial lesions consistent with PSP as well as alpha-synuclein immunoreactive glial cytoplasmic inclusions diagnostic of MSA. Double-immunolabeling studies showed no co-localization of alpha-synuclein and tau in
most neuronal and glial lesions. Based upon the findings in this case, the neuropathologic changes of PSP and MSA are distinct and independent processes, but they can occasionally coexist.

 

Free Recordings or Tapes – National Federation of the Blind

This post is about two free services available for those who can no longer read.

My father hasn’t been able to read a newspaper or a book since November.  He thinks it’s because he’s been sick; he says his eyes are tired.  I assume it’s the downward gaze palsy worsening.  He loves the Sunday New York Times.  Whenever I visit, I tried to read some of that paper for an hour.  I get very sleepy reading, however!  I’ve been trying to find someone (to pay) to come read to him.  I “auditioned” one college student who had to ask me how to pronounce every 5th word or so.  So that was a disaster.  I didn’t realize it was such a skill to read the NYT and to read aloud.

Yesterday I came across something that might work.  It’s called Newsline.  The National Federation of the Blind offers this service.  There’s a long list of national and local papers that are recorded, including USA Today, The New York Times, the Washington Post, Los Angeles Times, The Christian Science Monitor, and the Wall Street Journal.

You call a number (presumably local or tollfree), push some buttons, and recordings of the articles you want are played for you.  Obviously, this will work best if there’s a speakerphone.  Apparently you can set up “favorites” and the service will recognize the phone # you are calling from, some hopefully the button pushing at my Dad’s end will be minimal.  I figure that if he can’t do it however, I should be able to get an aide to help out.

You can find info online to sign up — nfb.org/newsline-how-sign.  There is a very easy one-page application.  There needs to be some certification of blindness or visual impairment.  We have a letter from Dad’s eye doctor (OD) saying that he has downward gaze palsy due to PSP.

I’ve also found that the Library of Congress has a National Library Service for the Blind.  The NLS offers many books on tape, even nonfiction books (history and biography).  It distributes these tapes via affiliated state libraries.  The affiliated libraries in northern CA are:

Library for the Blind and Print Disabled
San Francisco Public Library – Serves: San Francisco residents only
Civic Center
100 Larkin Street
San Francisco, CA 94102
Librarian: Martin Magid
Library Code: CA1C
Telephone: (415) 557-4253
FAX: (415) 557-4375
E-mail: [email protected]
Web site: http://sfpl.lib.ca.us/librarylocations/accessservices/lbpd.htm
Hours of Operation: 1:00-6:00 M, Th; 10:00-6:00 T, W; 12:00-6:00 F

Talking Book Library for the Blind
Fresno County Public Library – Serves Fresno, Kings, Madera, and Tulare counties
Ted Wills Community Center
770 North San Pablo Avenue
Fresno, CA 93728-3640
Librarian: Wendy Eisenberg
Library Code: CA1B
Telephone: (559) 488-3217
Toll-free (In-state): (800) 742-1011
TDD: (559) 488-1642
FAX: (559) 488-1971
E-mail: [email protected]
Web site: http://www.fresnolibrary.org/tblb
Hours of Operation: 9:30-5:30 M-F

Braille and Talking Book Library
California State Library – Serves all of Northern CA not served by SF or Fresno Libraries
P.O. Box 942837
Sacramento, CA 94237-0001
Librarian: Aimee Sgourakis
Library Code: CA1A
Telephone: (916) 654-0640
Toll-free (In-state): (800) 952-5666
FAX: (916) 654-1119
E-mail: [email protected] or [email protected]
Web site: http://www.library.ca.gov/html/pubser05.cfm
Hours of Operation: 9:30-4:00 M-F

(I got the preceding info from the web page http://www.loc.gov/nls/find.html and by calling the SF librarian.)

You don’t have to visit the library in person to get these materials.  A special tape player (slower than regular ones) and the tapes are mailed out.  There is usually an application that has to be filled out to get a patron #, and typically some sort of certification is required.  (Many different sorts of people and institutions can provide the certification.)

Both the Newsline service and the NLS service are free.  If you try out either of these services, let me know how it goes!

Robin

Advance Notice: 4/8/06 PSP Family Conference

I just got word this morning that there will be a PSP Family Conference in the SF Bay Area on Saturday 4/8/06.  It is being put on by the Society for PSP.  It will be held either in SF or somewhere near SFO.  We are being asked to offer suggestions on location and speakers, so let me know if you have any thoughts.  The ’04 conference was attended by 100 people.  The expectation is that this year’s conference will have even more attendees as there is a chance an announcement will be made about a Hollywood personality becoming a spokesperson for the Society for PSP.  I thought the location of the ’04 conference was good (UCSF conference center) and suggested that again.  Hotels, in general, will be more expensive unless we have an “in.”  I thought the UCSF speaker last time on swallowing issues did a great job.  In particular, the Society for PSP is looking for practically-oriented speakers (like speech therapists, swallowing specialists, OTs, and PTs).  I’ll keep you posted as I learn more.
Robin