PPA (Primary Progressive Aphasia)
What is it?
People who suffer from PPA discover that they can't process language. They
have trouble "finding words." Both spoken and written communication are
affected. Many other causes result in a similar situation, including stroke,
head trauma, "normal aging", and early Alzheimer's Disease. (Some very mild
problems in thinking of words can occasionally occur as the result of normal
aging, but these are never significant enough to disrupt normal
communication.) However, at the onset of PPA, the person can otherwise
function normally: decision-making, activities and personality are
unaffected. PPA is often misdiagnosed by physicians who are unfamiliar
with the condition.
PPA is a clinical syndrome. That is, it's defined by a set of
symptoms, not by the specific brain disease that is causing the
symptoms. An MRI scan may (but not always, especially in the early stages)
show brain tissue shrinkage in the area of the left hemisphere that supports
language functions. A thorough explanation of PPA and its relationship to
other conditions appears on NU Medical's PPA
Handbook page.
Some Web sites (including NIH's) refer to PPA as "rare." That
classification is slowly changing, as neurologists learn to properly diagnose
PPA. PPA patients' caregivers commonly describe multiple occurrences of
misdiagnosis by physicians who are unfamiliar with the condition.
PPA is caused by a degenerative brain disease. The most common
degenerative brain disease is Alzheimer's disease, and in a subset of
individuals (about 20%) this may be the cause of PPA. However, the majority
of individuals with PPA have a non-Alzheimer's brain disease, although there
is no way to determine this until autopsy (by examining brain cells). At the
present time, there are many different theories being pursued to determine
what causes these brain diseases to begin, but the exact causes remain
unknown. There is no cure for any of the degenerative brain diseases at this
time, but medications have been developed that have been shown to be helpful
in slowing the rate of memory loss associated with Alzheimer's disease, and
NU is currently working on clinical trials to see if these medications are
also useful in PPA.
The word progressive means that PPA is not a static condition. How
rapidly the condition progresses and what brain areas (other than the
language areas) will be affected over time varies widely with each
individual. Caregivers new to PPA often ask, "What can we expect?" The answer
to that question (and to many others related to PPA) is "We can't tell." What
we do know is that the deterioration may progress into motor areas of the
brain, affecting such things as movement or swallowing. Or it may move into
the areas affecting emotion and judgment, producing inappropriate behavior or
bouts of anger.
PPA is a cruel condition. Unlike Alzheimer's Disease, which affects memory
and may also result in reduced awareness of the individual's cognitive
decline, most people with PPA are aware of the changes affecting them. And
caregivers have no way to predict the pace of deterioration or the direction
it will take. What is known, unfortunately, is that PPA is progressive and
causes a continued decline in thinking over time. And it can lead to reduced
functioning over time that can increase susceptibility to other fatal
illnesses (for example, pneumonia).
To put PPA in some perspective, a research staff member at NU's medical
school (see below) said, "PPA today is where Alzheimer's was twenty years
ago."
What's being done?
Northwestern University's Feinberg School of Medicine has a research
program, headed by the foremost researcher in the field. The program is
described on NU Medical's PPA page.
Useful sites
Here are some additional sources of information, many of which have been
suggested by members of the online PPA support group. Some of them also
appear elsewhere, but are repeated here for convenience. A site may also
appear in more than one category. (The decision of the judges is final.)
Please suggest sites that others would find useful.
When you click on a link, its associated page will open in a new window.
When you close that window, you'll return here.
The sites are divided into these categories:
Information & Reference
- Information on frontal lobe dementia from Northwestern University's
Medical Center.
- The Association for
Frontotemporal Dementias is a new Web site (as of January 2004), and
many areas are still under construction. The site includes an excellent
description of one type of PPA, called Progressive non-fluent Aphasia.
- Understanding Primary Progressive Aphasia: The affliction explained in
a question and answer format, from the National Aphasia Association. The
information is somewhat dated.
- National Library of Medicine (NLM) PubMed articles on
PPA: NLM is a service of the National Institutes of Health. The link
provides a "hit list" of PPA-related articles. Be aware that much of this
information is in medical terminology. It may nevertheless be useful.
- Northwestern Memorial Hospital?s PPA site: The site describes
the PPA program, includes back issues of the Northwestern Alzheimer?s
Disease Center?s PPA newsletter, and has a set of questions and answers
about PPA. This organization also sponsors quarterly PPA group meetings in
Chicago.
- A
university site with a PPA bibliography: This site is at the University
of Nebraska at Lincoln. The bibliography is from a book that was to be
published in 2000. The articles might be available through NLM's PubMed
(see the PubMed reference).
- The Agency for
Healthcare Research and Quality (AHRQ) "The Agency for Healthcare
Research and Quality (AHRQ) research provides evidence-based information on
health care outcomes; quality; and cost, use, and access. Information from
AHRQ?s research helps people make more informed decisions and improve the
quality of health care services. AHRQ was formerly known as the Agency for
Health Care Policy and Research."
- The AMA's Program on Aging and Community Health "The AMA's
program on Aging and Community Health serves to enable physicians to
prevent and postpone disease and disability and to maintain the well-being,
independence, and mobility of an aging population."
- Tips on Choosing a Care Facility "Don't choose a home for
today's care needs. Too often people choose a facility for an elderly
person based on their care needs today. Choose a care facility that is
going to meet your needs tomorrow, six months, a year, two years down the
line. If your relative or friend is going to need more help-not less-as
time goes on, make sure that the home you choose has the services they are
going to need."
- Check Drug Interactions: You select two or more drugs
from the list, and the site shows potential interactions among them, and
with foods as well. Disclaimer: "Not all drug interactions are known or
reported in the literature, and new drug interactions are continually being
reported. This information is provided only for your education and for you
to discuss with your personal healthcare provider."
- MayoClinic.com's drug information page: search for a
drug by name or browse by name or category.
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Support Groups
-
The UK-based Pick's
Disease Support Group Web site explains and provides support and
information about this and related conditions. They also have a support
group on Yahoo.
The support group is described as follows: "The Pick's Disease Support
Group is an International Support Group set up by carers of people with
various types of fronto-temporal dementia: Pick's disease and Frontal
Lobe Degeneration, Dementia with Lewy Bodies, Corticobasal Degeneration
and Alcohol Related Dementia. The group meets several times a year in the
United Kingdom and produces a newsletter which is always available on the
internet, all other newsletters are also available. This discussion list
allows carers to communicate with one another in a supportive
environment."
- The PPA support group is a Yahoo group, whose original members
came from a contact list in Northwestern Memorial's PPA newsletter.
- Northwestern Memorial Hospital?s PPA site: The site describes
the PPA program, includes back issues of the Northwestern Alzheimer?s
Disease Center?s PPA newsletter, and has a set of questions and answers
about PPA. This organization also sponsors quarterly PPA group meetings in
Chicago.
- The Well Spouse
Foundation "Illness and accident attack without warning and can happen
to anyone. No two people are living in the same situation and no two
illnesses exact the same toll. Alzheimer's is different from MS, heart
disease is different from Parkinson's, stroke is different from accident.
But all well spouses face similar problems of anger, guilt, fear,
isolation, grief, and financial threat whether they are full-time
caregivers or whether their partners have only moderately disabling
illnesses. "Well Spouse is a national, not for profit membership
organization which gives support to wives, husbands, and partners of the
chronically ill and/or disabled. Well Spouse support groups meet monthly.
Here, our members can share their thoughts and feelings openly with others
facing similar circumstances in a supportive, non-judgmental environment.
WS support groups are also an excellent source for information on a
wide-range of practical issues facing spousal caregivers. Well Spouse
support groups exist or are being formed in many areas of the country." The
site has a support group locator, to help you find a group near you.
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Caregiver Information & Services
- The Alzheimer's
Association, a national network of chapters, is the largest national
voluntary health organization dedicated to advancing Alzheimer's research
and helping those affected by the disease.
- H.E.L.P. is a
not-for-profit Torrance, California-based non-profit service for older
adults and their caring families and friends. Since its inception in 1996,
it has helped thousands of people meet aging-related legal and care
challenges. Its services include public classes, private consultations, and
telephone and Internet assistance.
-
The Eldercare Locator
Web site is the online portion of a larger, more comprehensive
telephone-based service of the U.S. Administration on Aging that "helps
older adults and their caregivers find local services for seniors."
However, to get more specific information, call the Eldercare Locator
toll-free at 1-800-677-1116. Its Information Specialists can access to a
database of more than 4,800 entries. The Eldercare Locator service
operates Monday through Friday, 9 AM to 8 PM Eastern time.
- The Hoffmann Family Journal: Caring for a Spouse with Early Onset
Alzheimer's "Shirley was diagnosed in February of 1995 with 'probable'
Alzheimer's Disease. The diagnosis was later updated at the Mayo Clinic in
May of 1995 to be 'probable' Pick's Disease. Both are variations of a class
of progressively degenerative neurological diseases for which there is no
prevention or cure. Shirley was 50 years old when diagnosed, which is much
younger than normal for Alzheimer's victims and is referred to as
Early-Onset or Young-Onset. She died on August 1st, 1998 at the age of 54.
She was cared for at home by her family throughout this period. These pages
contain the family's journal and experiences while dealing with the
illness. It is our hope that our experiences may benefit others following
this same path."
- Management of Agitation Behavior (in Alzheimer's here,
but applies to other situations as well).
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Products & Services
-
Products to help people with PPA: I wouldn't normally list
commercial products or services. But Interactive Therapy seems to have
their corporate head on straight. The link is to their "For Families"
section, but there are also sections for practitioners. If you?re working
with a speech therapist or other professional, some of the tools sold
here may help both you and the practitioner.
In particular, Interactive Therapeutics sells communicators, looseleaf products in pocket size and larger,
holding cards with common words or pictures organized into useful
categories to aid communication. Note that pages contain either words or
pictures, not both.
- The Augmentative and
Alternative Communication Centers at UNL. "Augmentative and alternative
communication is an area of clinical practice that attempts to compensate
(either temporarily or permanently) for impairment and disability patterns
of individuals with severe expressive communication disorders." More
simply, these folks find devices and methods to help people communicate.
One of a number of such places. See the Rehab Institute of
Chicago entry for another.
-
The Rehabilitation Instititute of Chicago's Technology Center for the Computer, Environment and
Communication "strives to meet the needs of persons experiencing
difficulties in the following areas:
- communicating their needs, wants, and ideas using speech
- accessing their telephone quickly in cases of emergencies
- controlling their telephone, lights, TV, VCR, stereo, and/or
hospital bed
- accessing a computer for school, work, or personal use
- Medical identification jewelry: when you can't explain your medical
condition. Medic Alert
is the grandmother of all ID-bracelet organizations. It has a personal
medical data repository that emergency medical staff can consult. It is a
for-fee service.
- The Alzheimer's Association Safe Return Program " is a
national, government-funded program of the Alzheimer Association that
assists in the identification and safe, timely return of individuals with
Alzheimer?s disease and related dementias who wander off, sometimes far
from home, and become lost."
-
The Eldercare Locator
Web site is the online portion of a larger, more comprehensive
telephone-based service of the U.S. Administration on Aging that "helps
older adults and their caregivers find local services for seniors."
However, to get more specific information, call the Eldercare Locator
toll-free at 1-800-677-1116. Its Information Specialists can access to a
database of more than 4,800 entries. The Eldercare Locator service
operates Monday through Friday, 9 AM to 8 PM Eastern time.
- The Family
Caregivers links page of the Region One Area Agency on Aging. Although
this agency serves Maricopa County, Arizona (Phoenix), the links page has
some useful national entries. The site notes that it "is part of a national
network of organizations established under the Older Americans Act (OAA) to
respond to the needs of older adults. There are more than 650 Area Agencies
on Aging throughout the United States."
-
The National Association of
Area Agencies on Aging (N4A) has an Eldercare Locator to help you
find a local Area Agency on Aging.
The organization is " the umbrella organization for the 655 area
agencies on aging (AAAs) and more than 230 Title VI Native American aging
programs in the U.S. Through its presence in Washington, D.C., N4A
advocates on behalf of the local aging agencies to ensure that needed
resources and support services are available to older Americans. The
fundamental mission of the AAAs and Title VI programs is to provide
services which make it possible for older individuals to remain in their
home, thereby preserving their independence and dignity. These agencies
coordinate and support a wide range of home- and community-based
services, including information and referral, home-delivered and
congregate meals, transportation, employment services, senior centers,
adult day care and a long-term care ombudsman program."
-
The Caregivers Marketplace™ is a group buying service with
many other services. You must enroll, but there is no charge.
The organization describes itself as: "An innovative approach to
easing the financial burdens of caregiving. [It] is the nation's first
free cash back and discount service for everyone who gives, gets or needs
care. The mission of The Caregivers Marketplace is [...] to provide the
community of 27 million Americans currently caring for a loved one at
home with education, resources and - of course - everyday savings on the
products they use and rely on."
- MediSaveCanada.com, a site to buy Canadian prescription
drugs.
Please suggest links that others would find useful.
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