As we celebrate the beginning of a new year, we wanted to share our most visited blog posts and articles from 2019. It is our hope that we have provided meaningful resources to those with neurological disorders, their families, and their caregivers.
OUR MOST VISITED POSTS OF 2019
Four Stages of PSP (PSP Association, UK)
Last month, a terrific article was published on progressive supranuclear palsy (PSP) in a nursing journal. The article shares a list of symptoms in the four stages of PSP from the PSP Association, based in the UK. The four stages are:
* early stage
* mid stage
* advanced stage
* end of life stage
This post is about five phases of Lewy Body Dementia, according to a group of caregiver spouses.
Some members of the LBD_caringspouses Yahoo!Groups list have been working on the “LBD Approximate Phases” for a year now. I just received from Sue Lewis this final version of the Phases. This caregivers’ view of the five phases of LBD is a worthwhile document, especially for those new to the world of LBD. They’ve been working on this list on and off for so long that, at this point, they are not inviting your suggestions on how to modify the document. But they welcome any general comments (primarily positive ones, I think)! You can send comments to me and I’ll pass them on (unless you know Sue Lewis’ contact info from the LBD_caringspouses list).
“Gone From My Sight” – terrific online video+booklet
Many hospice organizations distribute the blue booklet “Gone From My Sight: The Dying Experience” by Barbara Karnes, a hospice nurse. (You can order a copy online from gonefrommysight.com.) It’s a terrific booklet. Barbara notes that “When you are at the bedside of a loved one who is dying, you don’t really see what’s happening.” The blue booklet is all about what we don’t really see.
PSP Stages/Phases, by two caregivers
This August 8, 2000 document on the phases/stages of progressive supranuclear palsy (PSP) was written by two caregivers who were members of the now-defunct Johns Hopkins PSP Listserv. Many neurological diseases, such as Alzheimer’s and Parkinson’s, have “stages.” So this was an attempt by two PSP caregivers to have the same guide posts for the PSP community.
Apps to increase vocal loudness and improve fluency (speech therapist’s favorites)
This article from September 2016 by a speech therapist lists several apps that augment voice volume, measure voice volume, or improve fluency of speech. Though this article addresses those with Parkinson’s Disease (PD) with these voice and speech problems, the apps certainly apply to anyone dealing with these problems. Many in the Brain Support Network community have low voice volume and poor fluency of speech. The speech therapist who authored the article emphasizes that these apps “require little cognitive effort.”
The apps mentioned include:
INCREASE VOCAL LOUDNESS
* Speak Up for Parkinson’s, by Sandcastle
* Decibel 10th [or Decibel X], by Skypaw Co. Ltd
* Voice Meter Pro
* Sound Meter Pro
* Parkinson’s Speech Aid
* Speech Pacesetter Lite
* DAF Professional
“The A’s of Dementia” – Amnesia, Atypical Depression, Aphasia, Agnosia, Apraxia
CaregiverTeleconnection is a service offered by WellMed, a charity based in San Anontio. These are one-hour conference calls (audio only) on topics of interest to caregivers and family members. You can find information on these conference calls at caregiverteleconnection.org.
In late May 2017, one of the audio talks featured Tam Cummings, a getontologist. Her topic was the “A’s of Dementia.” She covered:
* amnesia: loss of memory; see in Alzheimer’s
* atypical depression: causing irritability and aggression, often treated with dangerous, ineffective, antipsychotics
* aphasia: loss of the ability to understand and express speech
* agnosia: inability to recognize people, objects, sounds, shapes, or smells
* apraxia: inability to have purposeful body movements
Brain Support Network (BSN) focuses on three non-Alzheimer’s dementias including Lewy body dementia (LBD), and two rare dementias, progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD).
Certainly atypical depression, aphasia, and agnosia can happen with any of the BSN disorders. Amnesia can happen in any of the BSN disorders *if* Alzheimer’s co-occurs. And apraxia is part of the diagnostic criteria for CBD.
The speaker begins the talk by explaining that there are many types of dementia. She notes that as more and more of the brain is engulfed in the disease process, neurological symptoms of each type of dementia overlap. She also explains how damage to specific parts of the brain result in loss of certain skills.
Brain Support Network volunteer Denise Dagan listened to the talk and took some notes.
Constant groaning in PSP (case report)
This recently-published letter to the editor in a medical journal article describes “characteristic constant groaning” in late-stage PSP. The authors, members of a top PSP researcher team in the UK, believe that the constant groaning is “often misinterpreted as due to pain.”
Sharon’s Treatment Regimen for CBD (revised in 2012)
Sharon gave me her permission to circulate three recent posts in early 2012 about her treatment regimen (using supplements). As CBD and PSP are similar disorders, her approach may be of interest to those with PSP (progressive supranuclear palsy).
One insignificant change I made to her posts is that I substituted “CBD” for “CBG.” The old acronym for CBD was CBGD.
“Treating PSP, MSA, and CBD – What can be done?” – Webinar Notes, Recording + Resources
Brain Support Network and Stanford University co-hosted a webinar last Wednesday, February 27th about “Treating PSP, MSA, and CBD – What can be done?” The webinar focused on what treatments are possible for progressive supranuclear palsy, multiple system atrophy, and corticobasal degeneration. Most of the presentation and question-and-answer session apply to Lewy body dementia and advanced Parkinson’s Disease.
Bay Area Organizations to Donate Equipment/Supplies and to Borrow Equipment
Recently we had a small gathering of those who have lost their loved ones to Lewy Body Dementia and Corticobasal Degeneration. Out of that gathering came a request to share details on giving away used caregiving equipment or items. In addition to sharing that list with the attendees of that gathering, we also thought we’d share it with our local Brain Support Network. Thanks to two social worker friends– Susan Weisberg and Ann Blick Hamer — for some of the resources below.
“The Big Four” dementias – AD, LBD, FTD, and Vascular
There’s a wonderful article in the November/December 2009 issue of Neurology Now magazine. It features Jerome and Renata Rafferty; Jerome had Lewy Body Dementia and Renata was his caregiver.
“Caregiver Stress Syndrome: Identifying Symptoms, Finding Solutions”
This article is about “caregiver stress syndrome” (also called “caregiver syndrome). The author, Rob Harris, who was a caregiver for his wife, states that this syndrome “is an overwhelming feeling that engulfs you as a result of your caregiver duties, responsibilities, constant anxiety, and the loss of self.”
This syndrome is “a new way to categorize the emotional, physiological, and psychological changes one experiences from chronic stress created by the continuous and seemingly endless caregiving activities one is confronted with on a regular basis.”
First Steps after a Dementia Diagnosis
Hurley Elder Care Law offices are based in Atlanta. In the August 2007 issue of their publication “The Elder Issue,” they offer some guidelines for families to follow once a family member has been diagnosed with Alzheimer’s or any dementia type.
Some of the steps families should follow include:
* Organize a family meeting
* Assess your loved one’s abilities
* Learn about Alzheimer’s disease
* Find a good healthcare provider
* Make long term plans
* Create a support network
* Investigate resources for local support