Billionaire Richard Rainwater Dies with PSP

Local support group member Lynn forwarded me a link to this article about the death on Sunday of billionaire Richard Rainwater, who had PSP.  Several years ago Mr. Rainwater began the Tau Consortium, which funds PSP and tau research at UCSF among other places.  Tau is the protein involved in PSP and CBD.  It is also one of two proteins involved in Alzheimer’s Disease.

As part of the obituary in the Forth Worth Star-Telegram, there’s a 3-minute video from January 2015 featuring Mr. Rainwater’s son and Bruce Miller, MD, of UCSF’s Memory & Aging Center.  They note that the PSP research may also benefit Alzheimer’s Disease plus CTE, the disease that football players get.

Here’s a link to the obituary:

www.star-telegram.com/news/local/community/fort-worth/article36766056.html

Fort Worth billionaire Richard Rainwater dies
by Judy Wiley
September 27, 2015
Star-Telegram

Robin

“Caregiver Dementia: Oh Yea, It’s Real.” (US News)

Someone in our local support group recently sent me this June 2015 article from US News (usnews.com) about “caregiver dementia.” The author suggests that the condition is reversible. “Until caregivers are able to take proactive steps to overcome feelings of hopelessness resulting from the stress of caring for another person,” the symptoms of disorientation, forgetfulness, and depression will continue, she says.

I’m not so sure this is true but here’s one point of view…

Here’s a link to the article:

health.usnews.com/health-news/patient-advice/articles/2015/06/19/caregiver-dementia-oh-yea-its-real

Caregiver Dementia: Oh Yea, It’s Real.
There’s an overlooked type of dementia, and it’s more common than Alzheimer’s.
By Brenda Avadian, Contributor
June 19, 2015, at 10:50 a.m.
US News

Robin

 

“Living with Lewy Body Dementia” (US News, 9-22-15)

Today, Margaret, one of BSN’s brain donation case managers, shared this terrific article in US News & World Report on Lewy Body Dementia with me.  She knows that many of our local support group members are dealing with LBD.

Here’s a link to the article:

news.yahoo.com/living-lewy-body-dementia-164708586.html

Living With Lewy Body Dementia
US News By Samantha Costa
September 22, 2015 12:47 PM

Robin

“The Underbelly of Grief”

This article in the Huffington Post about one woman’s grief at the loss of a spouse (of 47 years) may be of interest to some of you.

There were several thought-provoking things said in this blog post — not all of which I agreed with.  Here are a few excerpts:

* “What fascinates me is that women today are more open about the pain of childbirth than they are about the pain of grief.  Grief is the new taboo. Few people openly talk about the agony of grief.”

* “I get daily calls from well-meaning folks asking how I am. I have learned never to ask a widow or widower how they are doing.”

* “There should be a pain barometer for grief. Doctors inquire about your back pain all the time. Is it a five or a seven today?”

* “I was amazed when a friend said to me, ‘I know exactly what you are going through. My mother died six months ago.’ What people don’t realize is that the loss of a spouse is different. When you lose a parent, you have siblings or family members to comfort you. When you lose a spouse, you lose your life partner and are alone.”

* “No one should look at grief before they must face it. But we should be prepared for its effect on our life. Maybe if we talk about it more, it will lessen the pain when it happens?”

Here’s a link to the article:

www.huffingtonpost.com/laurie-burrows-grad/pain-of-losing-a-spouse_b_8173264.html

DEMOTED TO LUNCH: The Underbelly Of Grief
by Laurie Burrows Grad
Huffington Post
Posted: 09/22/2015 8:00 am EDT

Robin

“Why I Lived a Double Life While Dealing With My Chronic Illnesses”

Local Brain Support Network member Candy shared this with me.  It’s about a woman, Stefani, with POTS (postural orthostatic tachycardia syndrome) and myasthenia gravis.  Stefani feels she was living a double life while dealing with these chronic illnesses.  She says:

“…now I can try to live a more authentic life. I’ve been lying to everyone and to myself for a long time — lying about what I’m really able to do and who I really am now. Maybe living authentically is easier for others with chronic illness, but I thought I was making illness look good. For whom?”

The link to the short article is here:

themighty.com/2015/08/why-i-lived-a-double-life-while-dealing-with-my-chronic-illnesses/

Why I Lived a Double Life While Dealing With My Chronic Illnesses
Stefani Shea
Aug 18, 2015

Robin

SF Bay Area Home Health Agencies Rated on Medicare Site

I recently posted that Medicare now rates home health agencies.  This post is about using the Medicare tool to find the 33 home health agencies in the San Francisco Bay Area that received 4, 4.5, or 5 star ratings.

The Medicare home health agency ratings aren’t super-easy to find but, after digging a layer or two down on the Medicare website, they can be discovered. Start at the Medicare home page of “Home Health Compare”:

www.medicare.gov/homehealthcompare/search.html

In the search box, type in “California,” indicating you want to search in the state of CA. On the right side, “Modify your search” by selecting a county, such as San Mateo County.

I also selected that I wanted to “Filter by” those agencies that provide all six services indicated (RN, PT, OT, ST, SW, HHA). Then I clicked on the green button for “Update search results.”

In that search, 73 agencies came up. Unfortunately you can only compare three at a time. I selected three agencies that I’d heard of previously.

If you select the “Quality of patient care” tab, you can see the star ratings.

Local support group member Dell did all the search work for us and compiled a list of 33 agencies in the SF Bay Area with 4, 4.5, or 5 star ratings.  Below, I’ve copied Dell’s list.

Robin


Wonderfully, local support group member Dell compiled a list of 33 agencies in the Bay Area that have a rating of 4, 4.5, or 5.

(Actually, this list could be longer because a single agency is typically listed in more than one city.  For example, I found CVH in San Mateo County while the list below shows them in San Ramon.  They have more than one office.  Perhaps the cities listed below are their main offices.)

RATING OF 5

INTERIM HEALTHCARE, SAN JOSE
DOMINICAN HOME HEALTH, SANTA CRUZ
ST CLAIRE’S HOME HEALTH, HAYWARD
LIFEGUARD HOME HEALTH, PLEASANTON
ASIAN NETWORK PACIFIC HOME CARE, INC, OAKLAND

RATING OF 4.5

SUNSHINE HOME HEALTH CARE, PLEASANTON
AMERICAN CAREQUEST, SAN FRANCISCO
CVH HOME HEALTH SERVICES, SAN RAMON
PREMIER HOME HEALTH PROVIDERS, SAN JOSE
MERIDIAN HOME HEALTH, NEWARK
TRUEMED, INC, SOUTH SAN FRANCISCO
CARELINK HOME HEALTH AGENCY, BURLINGAME
FARALLON HOME HEALTH CARE, BURLINGAME
MEDICS CHOICE HOME HEALTH, MILPITAS
QUALITY CLINICIANS CARE HOME HEALTH SERVICES, SANTA CLARA
LIFEGUARD HOME HEALTH SOUTHBAY & PENINSULA, MILPITAS
HEALTHFLEX HOME HEALTH SERVICES, OAKLAND
STAFFING HOME CARE, MILLBRAE
ASIAN AMERICAN HOME HEALTH CALIFORNIA, OAKLAND

RATING OF 4

SUTTER VISITING NURSE ASSOCIATION AND HOSPICE, SANTA CRUZ
SUTTER VISITING NURSE ASSOCIATION, NOVATO
PATHWAYS HOME HEALTH AND HOSPICE, SUNNYVALE
ACCENTCARE HOME HEALTH OF CALIFORNIA, SAN RAMON
VN HOME HEALTH CARE, SAN JOSE
PROHEALTH HOME CARE, SAN JOSE
AMEDISYS HOME HEALTH CARE, CAMPBELL
MARE ISLAND HOME HEALTH, VALLEJO
HOME HEALTH ALLIANCE, MILPITAS
ST JAMES HOME HEALTH, SAN JOSE
EMERITUS HOME HEALTH, SAN JOSE
AMITY HOME HEALTH CARE, HAYWARD
SAN BENITO HOME HEALTH CARE, HOLLISTER
INCARE HOME HEALTH SERVICES, SAN FRANCISCO

 

New Medicare Quality Ratings of Home Health Agencies

This email may be of interest to those with Medicare.

“Home health” is a Medicare benefit that few people seem to know about — unless you or a loved one ends up in the hospital or a rehab facility, and are then ready to be discharged to home again. If there’s a skilled need — RN, therapy (PT, OT, ST), or social worker — Medicare pays for a skilled professional to go to someone’s home to provide services. The person must be unable to leave their home, except to see an MD or attend a gathering in their faith community. When the “skilled need” is resolved or when a therapy cap is hit, the benefit ends. An MD must authorize “home health.”

As of July 2015, Medicare has started to provide quality ratings — one to five stars — to home health agencies in the US. Nine thousand home health agencies around the US were rated. Only 239 agencies in the US received five stars. In California, 1004 agencies were rated, with 42% receiving 4 or 5 stars.

The Medicare home health agency ratings aren’t super-easy to find but, after digging a layer or two down on the Medicare website, they can be discovered. Start at the Medicare home page of “Home Health Compare”:

www.medicare.gov/homehealthcompare/search.html

A Kaiser Health News (KHN) article notes:

“Medicare applied the new quality measure to more than 9,000 agencies based on how quickly visits began and how often patients improved while under their care. Nearly half received average scores, with the government sparingly doling out top and bottom ratings. … The ratings are based on agencies’ assessments of their own patients, which the agencies report to the government, as well as Medicare billing records. The data is adjusted to take into account how frail the patients are and other potential influences.”

“There was a wide variation in scoring among types of providers, a Kaiser Health News analysis found. Visiting nurse associations and agencies with religious affiliations tended to get the most stars. Home health agencies run out of skilled nursing homes and agencies run or paid for by local governments tended to perform poorly.”

“The star ratings were designed to capture overall quality by summing up the results of nine of 27 measures Medicare already publishes on its Home Health Compare website. Agencies were evaluated by how quickly they started visiting a patient, whether they explained all the drugs a patient was taking either to the patient or their caretaker and whether they made sure a patient got a flu shot for the season. The agencies also were judged on how much their patients improve in skills like walking, getting in and out of bed, bathing, breathing and being able to move around with less pain. Finally, the agencies were rated on how many of their patients ended up going to the hospital. The current star ratings are based on performance from the fall of 2013 through the end of last year. Medicare will reassess the stars quarterly.”

“Some in the home health industry are welcoming the ratings, but there is concern that consumers will interpret the scores differently than Medicare intends. The government considers three stars to be solid performers, but in rankings for restaurants, hotels and other common services, three stars are often interpreted as mediocre. … Another concern is that many of the quality results are self-reported by home health agencies.” 

You can find the full Kaiser Health News article (July 16, 2015) here:

khn.org/news/home-health-agencies-get-medicares-star-treatment/

A more recent KHN article notes that the ratings have another limitation:

“Bill Dombi of the National Association for Home Care and Hospice says that for one, they emphasize improvement. ‘The population in home health tends to be fairly aged with multiple chronic illnesses, where stabilization may be the goal rather than improvement,’ he said. Dombi said it’s unrealistic for a patient with Parkinson’s disease, for example, to get much better. But home health can help that person maintain some independence.”

Here’s a link to the more recent article (September 18, 2015):

khn.org/news/how-one-home-health-agency-earned-five-stars/

Robin

Therapeutic interventions in CBD (Italian paper)

There was an interesting article published online last week by Italian neurologists about corticobasal degeneration (CBd).  Here are the highlights:

* CBD has low diagnostic accuracy — 25–56% of cases.

* The only way to confirm a diagnosis is through brain donation.  If it’s not CBD, what is it?  Alzheimer’s disease (AD), progressive supranuclear palsy (PSP), Pick’s disease, dementia with Lewy bodies (DLB), Creutzfeldt-Jakob disease (CJD), etc.

Robin’s note:  Of the many supposed CBD brain donation cases I’ve been involved with, we’ve seen all of these — AD, PSP, Pick’s, DLB, and CJD.  Probably we’ve seen more AD than anything else.

* People with confirmed CBD can be grouped into four main “clinical types” —

  • CBS (corticobasal syndrome)
  • frontal behavioral-spatial syndrome
  • nonfluent/agrammatic variant of primary progressive aphasia
  • progressive supranuclear palsy syndrome

* There are few randomized clinical trials of pharmacological treatment of CBS symptoms.  Physicians rely on expert opinion or anecdotal descriptions in prescribing medications.

* “Levodopa is…not particularly helpful in CBS.”

*  “Amantadine has been occasionally reported to improve akinesia and rigidity in patients with AP, but evidence is anecdotal.”  (AP = atypical parkinsonism)

* Botox “may be helpful for CBS-associated limb dystonia and may be used to alleviate abnormal posture, pain and for maintaining hand hygiene.”

* “Deficits in single cognitive domains have been described at disease onset in CBS, but dementia is not a classical presenting feature of CBS, and will occur in only about 25% of cases with advanced disease. Dementia is more frequent in CBD patients who do not present with classical CBS, occurring in the FTLD-tau phenotype in which the central presenting features are cognitive/behavioral symptoms.”

* “It is also important to consider that CBS patients who partially respond to AChEIs/memantine treatment may have underlying AD as well.”

* “For psychosis, aggression and agitation, antipsychotics (preferably atypical agents) are currently employed despite the possible adverse events that include extrapyramidal symptoms, cognitive deficits and also death; particular caution is needed when using neuroleptics in patients with overt parkinsonism.”

* “CBS patients also frequently report depressive symptoms. Selective serotonin reuptake inhibitors (SSRIs) provide effective treatment in these subjects.”

* “[R]ehabilitation therapies are an essential component of the multidisciplinary approach to CBS patients. The rehabilitation team may address mobility, safety, assistive devices, activities of daily living and communication.”

* Transcranial direct current stimulation “may represent a promising tool for cognitive enhancement and neuro-rehabilitation but further studies in a larger cohort are necessary.”

* “[A]dvanced CBS patients ideally require assistance in specialized palliative care units, with the specific aim of alleviating the burden of symptoms, and of preserving patients’ autonomy and supporting their families.”

* “In particular, aspiration pneumonia and urinary infections are the two main causes of death in CBD patients. All these problems are common in advanced stages of neurodegenerative disorders and clinicians need to recognize and discuss their implications with the patient and the family. For example, patients with dysphagia should be immediately referred for swallowing evaluations with fibrolaryngoscopy. As the disease progresses, patients, relatives and caregivers have to be informed about the opportunity to place a percutaneous endoscopic gastrostomy (PEG) tube, especially if all other aspects of quality of life are preserved. Moreover education and support of caregivers and families by the multidisciplinary team members is recommended where these services exist.”

I think this is adequate for most of you (and maybe even too much already!).  For those who want to read more, I’ve copied the abstract below.  You can link from the abstract to the full article; there may be a fee to purchase the full article.

Robin

————————————————————-

Parkinsonism & Related Disorders. 2015 Sep 9.  [Epub ahead of print]

Therapeutic interventions in parkinsonism: Corticobasal degeneration.
Marsili L, Suppa A, Berardelli A, Colosimo C.

Abstract
Corticobasal degeneration (CBD) is a progressive neurodegenerative disorder resulting from pathological accumulation of tau protein and is included in the spectrum of Atypical Parkinsonism. The typical clinical phenotype of CBD is characterized by the Corticobasal syndrome (CBS). In recent years it has become clear that the clinical picture of CBS may be caused by different pathological conditions, resulting in frequent misdiagnosis. CBD has high morbidity and poor prognosis with no effective therapies. In this review, we will discuss the symptomatic treatment, the palliative care and the disease modifying strategies currently in use. Symptomatic treatment in patients with CBD may sometimes be useful for improving motor (parkinsonism, dystonia and myoclonus) and non-motor (cognitive-behavioral) symptoms, but the effects are often unsatisfactory. In addition, non-pharmacological strategies and palliative care are useful integrating components of the multidisciplinary therapeutic approach for patients with CBD. Despite many efforts, a disease-modifying treatment is still unavailable for CBD.

Copyright © 2015 Elsevier Ltd.
PubMed ID#:  26382843

“5 ways to care for yourself while caring for a loved one”

Here’s a very short message from Harvard Medical School’s HEALTHBeat enewsletter.  The message addresses five ways to care for yourself while caring for a loved one —

  • recruit help
  • quell guilt
  • stay active
  • stay connected
  • relax and enjoy yourself

Certainly attending a local Brain Support Network caregiver group meeting can help you quell guilt and stay connected!

Robin

————————————————————-

www.health.harvard.edu/staying-healthy/5-ways-to-care-for-yourself-while-caring-for-a-loved-one

5 ways to care for yourself while caring for a loved one

Caring for an aging parent or a loved one who is ill or disabled is often deeply rewarding. But it can also consume a lot of time, as well as physical and emotional energy. You may feel overwhelmed by myriad responsibilities — home, work, other family needs, and caregiving. But it’s just as important to care for yourself before you burn out. Try our five tips below to help rejuvenate yourself.

1. Recruit help: You don’t have to “do it all” yourself. In fact, it’s best to have more than one person involved in caregiving. Whether it’s accompanying your loved one to appointments, helping with housework, or cooking dinner one night a week, ask other family members to lend a hand. And if someone asks if he or she can pitch in, don’t be afraid to say yes!

2. Quell guilt: At times, you may feel like there’s something more you should be doing, or something you should have done differently. Rather than ruminate on what could or should be, give yourself credit for all that you do. If feelings of guilt are especially strong, it can help to talk them over with a counselor or social worker.

3. Stay active: Frequent exercise delivers proven health benefits, such as lowering cholesterol and blood pressure — and it can be a powerful energy- and mood-lifter, too. Try to get 30 to 60 minutes of exercise on most days of the week. If that amount doesn’t seem doable, don’t worry — some exercise is always better than none.

4. Stay connected: Catch up with friends by phone or email, or plan weekly walks or a regular lunch or movie. Ask people to drop by and visit with you, or the person you’re helping, so that you can take a break and feel connected with the world outside your caregiving role.

5. Relax and enjoy yourself: Listen to music you like, take a luxurious bath, dabble in creative pastimes, or even splurge on a massage. You can also learn meditation or other relaxation techniques through a class, tape, or book (yoga is a great relaxer as well).