Category Archives: MSA

Stanford/BSN Webinar – Orthostatic Hypotension in PD, MSA, and LBD, 9/18

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Stanford/BSN Webinar – Orthostatic Hypotension in PD, MSA, and LBD, 9/18

Brain Support Network (BSN) is pleased to announce its second webinar with Stanford Movement Disorders Center, one of our Northern California partners.

Update:  See our notes from the webinar here.

Join us for a free, one-hour webinar on orthostatic hypotension in Parkinson’s Disease, multiple system atrophy, and Lewy body dementia. The speaker is Stanford movement disorders specialist Veronica Santini, MD. And the host is long-time BSN MSA group member Candy Welch.  Please spread the word!

What is orthostatic hypotension?  It is the sudden drop in blood pressure upon change in position such as sitting up from lying down in bed or standing up from a seated position.

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Orthostatic Hypotension in Parkinson’s Disease, Multiple System Atrophy, and Lewy Body Dementia

When: Monday, Sept. 18, 2017
2-3pm Pacific Time (US and Canada)

Speaker: Veronica Santini, MD, movement disorders specialist, Stanford Movement Disorders Center

Register in advance for this webinar:

https://stanford.zoom.us/webinar/register/32ffda459570534466858a512be5123a

After registering, you will receive a confirmation email containing information about joining the webinar.  Save that email as it contains an important link with the meeting ID embedded.  You will receive reminders.

Note: If you can’t make it on September 18th, 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. Veronica Santini, a movement disorder specialist, has extensive experience with orthostatic hypotension in the context of three disorders — Parkinson’s Disease (PD), multiple system atrophy (MSA), and Lewy body dementia (LBD).

Dr. Santini will address these topics:

  • what is orthostatic hypotension (OH) and how is it diagnosed?
  • is OH different in PD, MSA, and LBD?
  • what are the non-pharmacological treatments?
  • what are the pharmacological treatments?

There will be time for audience questions on OH.

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Further details on the speaker:

The speaker is Dr. Veronica Santini, a movement disorders specialist at Stanford University. Dr. Santini has special interest in the autonomic system.  She takes a holistic approach to patient care and seeks to integrate conservative and alternative therapies where appropriate.

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Further details on the webinar host:

The webinar will be hosted by Candy Welch, whose husband Bob had multiple system atrophy (MSA), confirmed through brain donation. She is on the Board of Brain Support Network, a nonprofit focusing on the four atypical parkinsonism disorders, including multiple system atrophy and Lewy body dementia. Candy will be speaking about brain donation for multiple system atrophy at the national MSA conference in October in Nashville.

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Register in advance for this webinar:

https://stanford.zoom.us/webinar/register/32ffda459570534466858a512be5123a

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Questions? Please contact Robin Riddle.

Carbonated liquids may help swallowing dysfunction (small Swedish study)

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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.

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

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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.

 

Apathy – description and treatment

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Apathy – description and treatment

Brain Support Network volunteer Denise Dagan came across this article in a recent Parkinson’s Disease (PD) organization’s newsletter about apathy in PD.  Certainly apathy occurs in many of the disorders in the Brain Support Network community as well — especially progressive supranuclear palsy (PSP).  That’s why I’m sharing the article within our network.

These statements in the article caught Denise’s eye:

“Persons with apathy generally do not recognize the symptoms, so caregivers will need to bring it to medical attention. … It is important to assess for apathy because those with apathy are 2.5 times more likely to report poor quality of life in comparison to those without apathy. Apathy is also associated with more severe motor impairment. PD patients with apathy are less physically active and may not adhere to medical recommendations. Relationships may suffer as well since caregivers often experience more frustration and stress.”

The author of the article is Rosa Chuang, MD.  She may be familiar to some in our multiple system atrophy (MSA) group.  She used to practice at Stanford but is now in Seattle.

The article is copied below.

Robin

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www.apdaparkinson.org/community/northwest/about/newsletters/

Apathy in Parkinson’s Disease
Parkinson’s Pathfinder (Newsletter by APDA Northwest)
Summer 2017
By Dr. Rosalind Chuang

Apathy is a common non-motor symptom of Parkinson’s disease but often times not recognized or commonly mistaken for depression. Some studies show that 30-40% of PD patients have apathy, but the frequency can range from 20-70%, depending on how patients are asked. It can occur at any stage of PD and can even occur before motor symptoms develop. It is important to assess for apathy because those with apathy are 2.5 times more likely to report poor quality of life in comparison to those without apathy. Apathy is also associated with more severe motor impairment. PD patients with apathy are less physically active and may not adhere to medical recommendations. Relationships may suffer as well since caregivers often experience more frustration and stress.

WHAT IS APATHY?

Apathy is defined as:
• Loss of motivation or lack of initiative
• Loss of pleasure
• Decreased goal directed behaviors
• Decreased goal directed cognitive activity
• Decreased interests and emotions (reduced display of emotions)

WHAT TO LOOK FOR IF YOU ARE CONCERNED ABOUT APATHY

A common complaint from family and friends is that the PD patient just “sits around” or “doesn’t seem to care about anything.” Nothing gets done and a person often declines social activities if given a choice. This can be misinterpreted as fatigue, laziness, or lack of empathy/ uncaring.

Persons with apathy generally do not recognize the symptoms, so caregivers will need to bring it to medical attention. Medical providers may ask specific questions from the Starkstein apathy scale to determine apathy. Some questions on the scale include:

• Any interest in learning new things?
• Does anything interest you?
• Do you look for things to do?
• Are you concerned about your condition? Or unconcerned about many things?
• Does someone have to tell you what to do each day? Do you need a push to get started on things?
• Are you neither happy nor sad, just in between?

As you can see, these questions are similar to those to assess for depression, so sometimes it can be difficult to separate apathy from depression. Often times, patients can have both depression and apathy, but in ~10- 28% of time, patients can have apathy alone.

WHY IS IT NOT DEPRESSION?

In both depression and apathy, a person may no longer enjoy things. However, someone with depression may endorse feeling “blue” or sad. Other “negative” symptoms of depression include inappropriate guilt, loss of appetite, loss of sleep, or thoughts of death. An apathetic person does not cry frequently or have suicidal thoughts.

TREATMENT

It is important to evaluate if the symptoms are from apathy alone because it can affect treatment. If apathy is associated with depression or anxiety, treatment of co-morbid conditions can help reduce apathy. Sometimes isolated apathy can also respond to the SSRIs used to treat depression, but generally studies don’t show good response. Dopamine medications (levodopa or dopamine agonists) may also improve apathy. (In some patient who have undergone deep brain stimulation for PD, rapid withdrawal of their PD medications resulted in apathy.) In one trial, PD apathy responded to rivastigmine, a medication used for dementia, even though the patients did not actually have dementia.

For isolated apathy, I generally recommend non-pharmacologic treatment. These include:

• Write down at least 3 daily goals and 3 weekly goals. These goals can be physical, social, or thinking activities.
• Daily goals should be specific and can be reasonably achieved.
• Create a schedule: be specific when each task will should be accomplished.
• Review the written list at breakfast, lunch and dinner to remind yourself of the next goal.
• Cross off each task as you complete them.
• Say “yes” to at least one thing every day even if you don’t feel like it.
• Maintain routine: continue to do things you used to do, even if you don’t feel like it.
• Recall an activity that you used to enjoy and try to restart that activity.
• Exercise even if you don’t feel like it.
• Must leave the house at least once a day

Even though apathy is not as easily treated as the motor symptoms of PD or other non-motor symptoms such as depression, simply recognizing and understanding apathy is an important part of overall management of Parkinson’s disease.

July 2017 Parkinson’s Support Group Meetings – Guest Speakers – NorCal + Central CA

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July 2017 Parkinson’s Support Group Meetings – Guest Speakers – NorCal + Central CA

Here’s a list of guest speakers at many Northern California and Central California Parkinson’s Disease (PD) support group meetings for July 2017.

With my Brain Support Network atypical parkinsonism (DLB, PSP, MSA, CBD) hat on, these meetings are especially appealing to me (because of the guest speakers or topics) BUT remember that these are PD support group meetings:

* Lodi, Monday, 7/3: a neurologist is speaking on Parkinson’s and essential tremor. I know nothing about this neurologist but it seems to be a unique opportunity to hear a neurologist speak in Lodi.

* Soquel, Wednesday, 7/5: physical therapist addresses practical solutions to daily challenges

* Yuba City, Monday, 7/10: social worker talks about the importance of sleep for caregivers. Hopefully everyone in this area knows about the Del Oro Caregiver Resource Center. If not, please attend the talk just to learn about their services.

* Bakersfield, Tuesday, 7/11: fitness instructor demonstrating exercises and yoga

* Turlock, Wednesday, 7/12: social worker describes coping skills for dealing with Parkinson’s (for both those with a diagnosis and caregivers). Certainly many of these coping skills will be applicable to those in Brain Support Network.

* Palo Alto/Avenidas, Wednesday, 7/12: a palliative care social worker and hospice nurse will be addressing palliative care and hospice at home for those with neurological disorders (not just Parkinson’s). Many in the Brain Support Network group apply for palliative care. Come learn about what this is!

* Walnut Creek, Saturday, 7/15: movement disorder specialist Salima Brillman, MD, will be talking about the diagnosis and treatment of Parkinson’s. She is very familiar with the disorders in our group.

* Sacramento/Arden Arcade, Thursday, 7/20: an excellent physical therapist addresses physical therapy for PD. She may be familiar with the disorders in our group.

Generally, I recommend driving no more than 30 minutes to attend any of these meetings. If you attend a meeting and learn anything, please share with me so that I can share with others!

Do you need to know the support group meeting location, day/time, contact info, and how to RSVP if required? Please refer to the Stanford Parkinson’s website for all Northern and Central California support groups:

parkinsons.stanford.edu/support_groups.html

As always, I’ve deleted the deep brain stimulation-related talks.

Robin
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Lodi
Monday, 7/3, 10-11am
Guest Speaker: Mohammad Kazmi, MD, neurologist, Lodi
Memorial Hospital, Lodi
Topic: Parkinson’s Disease and Essential Tremor
RSVP?: No.

 

Soquel (Santa Cruz County)
Wednesday, 7/5, 1-2:30pm
Guest Speaker: Ruby Straehley, PT, physical therapist
Topic: Practical solutions to everyday challenges facing those with Parkinson’s
RSVP?: No.

 

Yuba City (Tri-Counties)
Monday, 7/10, 1-2pm
Guest Speaker: Dorene Fanning, LCSW, family consultant, Del Oro
Caregiver Resource Center
Topic: Insights into challenges and the importance of sleep for caregivers
RSVP?: No.

 

Bakersfield
Tuesday, 7/11, 2-4pm
Guest Speaker: Deb McCormack, Bakersfield Mind & Body Studio
Topic: Exercises and yoga for PD
RSVP?: Yes to group leaders Linda Feist, 661-304-9227, or Bill
Burgemaster, 661-343-2707

 

Pacific Grove (Monterey County)
Tuesday, 7/11, 3-4:30pm
Program: Discussion groups – people with Parkinson’s and care partners
RSVP?: No.

 

Davis – regular and caregivers groups together
Wednesday, 7/12, 12:45-2:15pm (special day/time for July)
Guest Speaker: Marg Bartosek
Topic: Experiential presentation of Feldenkrais awareness through movement
RSVP?: No.

 

Turlock
Wednesday, 7/12, 1-2pm
Guest Speaker: Nancy Neufled Silva, PhD, LCSW, counselor, Turlock
Topic: Coping skills in dealing with PD for patients and caregivers
RSVP?: No.

 

Palo Alto/Avenidas
Wednesday, 7/12, 2-3:30pm
Guest Speakers: Libby Hagman, RN, clinical outreach coordinator, and Anthony Lupian, MSW, Transitions program coordinator, Mission Hospice and Home Care, San Mateo
Topic: Palliative care, hospice at home, and hospice house for Parkinson’s – recommended services and what’s new
RSVP?: No.

 

Sonoma/Vintage House
Thursday, 7/13, 10-11am
Guest Speaker: Margot Schaal, certified Feldenkrais practitioner
Topic: Feldenkrais
RSVP?: No.

 

Walnut Creek (Mt. Diablo)
Saturday, 7/15, 9am-noon (speaker 10:45am-11:45am)
Guest Speaker: Salima Brillman, MD, movement disorder specialist, The
Parkinson’s Institute, Sunnyvale
Topic: Diagnosis and treatment of Parkinson’s
RSVP?: No.

 

Elk Grove
Wednesday, 7/19, 10-11:30am
Guest Speaker: Christy Adams, RN, MPH, trauma prevention coordinator,
UC Davis
Topic: A matter of balance
RSVP?: No.

 

Merced
Thursday, 7/20, 10am-noon
Guest Speaker: Lisa Clawson, LVN, HealthSouth Rehabilitation, Modesto
Topic: Rehab services for PD
RSVP?: No.

 

Sacramento/Arden Arcade
Thursday, 7/20, 10am-noon
Guest Speaker: Christine Shade, DPT, physical therapist, Kaiser Roseville
Topic: Physical therapy and outdoor exercises for PD
RSVP?: No.

 

Mill Valley (Marin County)
Friday, 7/28, 1-3pm (guest speaker 1-2pm)
Guest Speaker: James Nevin, Sr., attorney
Topic: Estate planning and end of life issues
RSVP?: No.