Carbonated liquids may help swallowing dysfunction (small Swedish study)

This is interesting research from Sweden on the effect of carbonated liquid on swallowing dysfunction. Though the study was done on 48 patients with Lewy body dementia, the findings likely apply to all in the Brain Support Network community.

Two interesting points were made:

1- While 40 patients had swallowing dysfunction confirmed through videofluoroscopy, 14 of these did not perceive they had swallowing symptoms.

2- Out of the patients with swallowing dysfunction, 87% had “an overall improved swallowing function with carbonated liquid.” This was true even that the pharyngeal transit time of carbonated liquid was quicker than think liquid or thickened liquid.

Of course you can test whether carbonated liquids work (for you or for your family member) by requesting they be tried during videofluoroscopy.

The abstract is below.

Robin

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www.ncbi.nlm.nih.gov/pubmed/28848329

Clinical Interventions in Aging. 2017 Aug 8;12:1215-1222.

Effects of carbonated liquid on swallowing dysfunction in dementia with Lewy bodies and Parkinson’s disease dementia.

Larsson V, Torisson G, Bülow M, Londos E.

Abstract

BACKGROUND:
Swallowing dysfunction is an increasingly recognized problem in patients with dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD), which can result in aspiration pneumonia and death. Few studies have examined potential ways of improving swallowing function in this fragile patient group. The aim of this study was to evaluate swallowing dysfunction and carbonated liquid using videofluoroscopy in DLB and PDD patients.

METHODS:
A total of 48 patients with DLB and PDD were referred for a clinical examination with videofluoroscopy. Descriptive overall assessments were provided at the time of the examination regarding swallowing function and the effects of different modifications, including carbonated thin liquid (CTL). Additionally, a repeated measures quantitative retrospective analysis has been performed comparing 1) thin liquids; 2) thickened liquids and 3) CTLs, with regard to the quantitative variables 1) pharyngeal transit time (PTT); 2) pharyngeal retention and 3) tracheal penetration.

RESULTS:
In all, 40/48 (83%) of the patients had a swallowing dysfunction, which was confirmed on videofluoroscopy, with 34/40 (85%) patients having a pharyngeal-type dysfunction. A total of 14/40 (35%) patients with an objective swallowing impairment did not have any subjective swallowing symptoms. Out of the patients with swallowing dysfunction, 87% had an overall improved swallowing function with carbonated liquid. PTT for carbonated liquid (median 633 ms, interquartile range [IQR] 516-786 ms) was quicker than for thin liquid (760 ms, IQR 613-940 ms, P=0.014) and thickened liquid (880.0 ms, IQR 600-1,500 ms, P<0.001). No significant effect was seen in residue or penetration.

CONCLUSION:
The majority of patients with DLB or PDD had a swallowing dysfunction, sometimes without subjective swallowing symptoms, which improved with carbonated liquid. This highlights the importance of investigating patients with videofluoroscopy and to carry out a prospective interventional study to further evaluate carbonated liquid, also addressing the effects on quality of life, aspiration and mortality.

Results from AbbVie phase 1 study of tau antibodies in PSP

At the recent Alzheimer’s Association International Conference, reports were given on phase 1 trials of tau antibodies. Tau is the protein involved in Alzheimer’s, progressive supranuclear palsy, and corticobasal degeneration. Phase 1 studies are focused on safety, not efficacy.

Alzforum posted a summary over the weekend on this tau research that involved PSP volunteers. Basically, the experimental drug seemed safe, and AbbVie is proceeding to a phase 2 trial in PSP. UCSF is one of the trial sites.

You will hear plenty more about this research is you attend our October 28th PSP/CBD Research Update and Family Conference in the SF Bay Area. Registration will open soon. We are hoping that AbbVie will sponsor part of our conference. Keep your fingers crossed!

Here’s a link to the Alzforum summary about this PSP research:

www.alzforum.org/news/conference-coverage/high-dose-av-and-tau-immunotherapies-complete-initial-safety-tests

High-Dose Aβ and Tau Immunotherapies Complete Initial Safety Tests
Series – Alzheimer’s Association International Conference 2017
27 Aug 2017
Alzforum

Robin

 

Benefits of palliative care, and list of palliative care programs in Northern California

Recently I came across a research article on the emerging role of palliative care in multiple system atrophy (MSA) and progressive supranuclear palsy (PSP). The article makes the point that palliative care emphasizes “quality of life in progressive disorders” and is beneficial for all neurodegenerative disorders.

If you’d like to read the full article, check out this link:

www.sciencedirect.com/science/article/pii/S135380201630400X

Palliative Care and its Emerging Role in Multiple System Atrophy and Progressive Supranuclear Palsy
Parkinsonism & Related Disorders
January 2017, volume 34, pages 714

I had a feeling that if I shared this link, many of you would ask “where can I find a palliative care program?” Brain Support Network volunteer Denise Dagan created a list of as many palliative care programs as she could find on the Peninsula and in the South Bay. Since many of these medical clinics exist throughout Northern California — Sutter Health, Kaiser, PAMF, etc — this list should be useful to most of you on this list.

Robin

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PALLIATIVE CARE PROGRAMS ON THE PENINSULA AND IN THE SOUTH BAY
By Denise Dagan (Brain Support Network volunteer)
August 2017

California Pacific Medical Center (CPMC), in San Francisco, is part of Sutter Health. Information about their program can be found here: http://www.cpmc.org/services/palliative.html, or for more information contact Linda Blum, RN, NP, at 415-600-4576.

The Chinese Hospital, San Francisco Call 415-677-2349 for information.

Community Hospital of the Monterey Peninsula Ask your doctor for more information.

El Camino Hospital, Mountain View Call 650-988-7624 for information or visit https://www.elcaminohospital.org/services/palliative-care

Hospice By the Bay offers palliative care in collaboration with these hospitals:
Marin General, Sonoma Valley, Sonoma Acres and Broadway Villa Sonoma. Call 415-927-2273 for information.

Jewish Family and Children’s Services of San Francisco, the Peninsula, Marin and Sonoma Counties offers palliative care through Seniors At Home. Call 844-222-3212 or visit the JFCS’ Seniors At Home website.

Kaiser Permanente offers palliative care at several locations around the bay:
Oakland – Inpatient 510-801-7246, Outpatient 510-752-1834
Richmond – Outpatient 510-752-1834
San Francisco – Outpatient 415-833-0204
San Jose – Inpatient 408-972-6888, Outpatient 408-972-7311
https://thrive.kaiserpermanente.org/care-near-you/northern-california/sanjose/departments/palliative-care/
Santa Clara – Inpatient 408-851-7578, Outpatient 408-851-0537,
https://thrive.kaiserpermanente.org/care-near-you/northern-california/santaclara/departments/palliative-care/

Laguna Honda Hospital, San Francisco Call 415-682-1230 for information or to arrange a tour.

Mission Hospice & Home Care, San Mateo, offers in-home palliative care. Call the Clinical Outreach Team 650-554-1000 for information or visit https://www.missionhospice.org/services/transitions/.

Palo Alto Medical Foundation (PAMF) offers palliative care in several locations:
Dublin, Fremont, Mountain View, Palo Alto, Santa Cruz, and Sunnyvale

http://www.pamf.org/palliativecare/locations/

Pathways offers palliative care for any individual or private physician referral on the peninsula, south and east bay areas. Call 844-755-7855 for information.

Regional Medical Center, San Jose Call 877-868-4827 for information

St. Francis Memorial Hospital, San Francisco Call 415-353-6856 or 415-353-6180 for information.

St. Mary’s Medical Center, San Francisco Call 415-750-5907 for information.

San Francisco General Hospital offers inpatient palliative care in Comfort Care Suites. Ask your doctor for more information or visit http://hospital-zsfg.medicine.ucsf.edu/services/palliative.html.

San Mateo Medical Center, San Mateo County Health System Call 650-573-2381 for Information.

Santa Clara Valley Medical Center, San Jose Call 408-793-5974 for information.

Season’s Hospice and Palliative Care offers palliative care in both San Mateo and Santa Clara Counties. Call 855-812-1136 or email [email protected] for information.

Sequoia Hospital, in Redwood City, offers palliative care through Pathways. Sequoia Hospital is a co-owner of Pathways. Call 888-755-7855 for information.

Stanford offers palliative care in these locations:
Palo Alto – Lucile Packard Children’s Hospital. Call 650-497-8963 for information.
Palo Alto – Palliative Care at Stanford Hospital. Call 650-724-0385 for information.
San Jose – Cancer Center South Bay. Call 408-426-4900 for information.

Sutter Health This page has a list of 33 palliative care doctors affiliated with Sutter Health (including, CPMC, Mills-Peninsula Medical Center, PAMF and Sutter Pacific Medical Foundation) in several locations:
Alameda, Auburn, Berkeley, Burlingame, Castro Valley, Fremont, Hayward, Modesto, Oakland, Palo Alto, Roseville, Sacramento, San Francisco, San Jose, San Mateo, Santa Cruz, Santa Rosa, Sunnyvale, and Yuba City
http://www.sutterhealth.org/findadoctor/northern-california-hospice-and-palliative-medicine-doctors-results.html?Nao=0&recPerPage=100&Nao=0

UCSF Medical Center offers inpatient and outpatient palliative care at both Parnassus and Mission Bay, and inpatient palliative care at SF General Hospital. Call 415-502-6861 for more information.

Veterans Affairs (VA) offers palliative care at several locations:
Palo Alto VA Health Care System – contact them through [email protected]
San Francisco VA Medical Center offers hospice and palliative care through Geriatric Services. Call 415-221-4810, ext. 2-3224 for information.

Visiting Angels offers palliative care in several locations:
Burlingame – Call 650-344-2178 for information.
Fremont – Call 510-284-0000 for information.
San Jose – Call 408-241-5100 for information.
Sunnyvale – Call 408-735-0977 for information.

Vitas Healthcare offers palliative care in several locations:
Milpitas – Call 408-964-6800 for information.
San Francisco – Call 415-874-4400 for information.
San Mateo – Call 650-350-1835 for information.

With Grace Hospice and Palliative Care, San Jose Call 408-444-5500 for information.

 

Stanford/BSN Webinar – Diagnosing PSP, Wed, Aug 30, 2-3pm PT – Register Now!

Brain Support Network is kicking off a webinar series with Stanford Movement Disorders Center, one of our Northern California partners.

Join us for a free, one-hour webinar on diagnosing progressive supranuclear palsy (PSP). The speaker is Stanford movement disorders specialist Kathleen Poston, MD. Please spread the word!

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Diagnosing Progressive Supranuclear Palsy

When: Wednesday, Aug 30, 2017
2-3pm Pacific Time (US and Canada)

Speaker: Kathleen Poston, MD, MS, movement disorders specialist, Stanford Movement Disorders Center

Register in advance for this webinar:

https://stanford.zoom.us/webinar/register/d19798267307ba908c34be5db4a05ad8

After registering, you will receive a confirmation email containing information about joining the webinar.

Note: If you can’t make it on August 30th, we encourage you to register for the webinar so that you will be alerted when the recording is available online.

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Further details on the webinar topic:

Dr. Kathleen Poston, a movement disorder specialist with extensive experience with PSP, will address these topics:

* how is PSP diagnosed?
* how many years does the average person wait for a diagnosis?
* what are the two main types of PSP?
* what’s the new diagnostic criteria for probable PSP?
* what’s the accuracy of a PSP diagnosis?

There will be time for audience questions on PSP.

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Further details on the speaker:

The speaker is Dr. Kathleen Poston, a movement disorders specialist at Stanford University. Dr. Poston research focuses on the development of novel neuroimaging biomarkers to improve diagnostic accuracy and monitor the efficacy of investigational treatments for Parkinson’s Disease and other movement disorders, such as PSP. She is the co-investigator for the NINDS-funded Udall Center of Excellence for Parkinson’s Disease Research.

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Further details on the webinar host:

The webinar will be hosted by Robin Riddle, who coordinates a Parkinson’s Information & Referral Center at Stanford. She is also the CEO of Brain Support Network, a nonprofit focusing on the four atypical parkinsonism disorders, including PSP.

Brain Support Network is organizing a research update and family conference on Progressive Supranuclear Palsy and Corticobasal Degeneration on Saturday, October 28th, in the San Francisco Bay Area. To be notified when registration opens for this conference, please join the PSP email list.

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Register in advance for this webinar:

https://stanford.zoom.us/webinar/register/d19798267307ba908c34be5db4a05ad8

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Questions? Please contact Robin Riddle.

BSN’s Allan Marcus Fund Gave Six Grants in 2017

The Allan Marcus Fund for Families in Need with PSP has successfully completed its giving for 2017.  The Marcus family and Brain Support Network (BSN) approved six grants to families with loved ones with progressive supranuclear palsy (PSP).

The grants to PSP families provided in-home caregiving, travel to family reunions, needed physical therapy, and more.  Congratulations to all the families in the US who received grants.  It was an honor to hear your stories and help make what we hope will be precious memories.

The Marcus family aims to provide this fund annually.  Please join BSN’s PSP email list to be kept informed as more information is available in the new year.