Project aims to improve lives of multiple sclerosis patients
- From: Jim Carter <spamfree@xxxxxxxxx>
- Date: Wed, 10 Aug 2005 13:46:45 -0400
Posted on Tue, Aug. 09, 2005
Helps secure benefits, services
By KEVIN HOWE
Herald Staff Writer
Its victims are often struck down in the prime of life, suddenly
transformed from independent, capable adult men and women to
helpless housebound or homeless people whose isolation makes them
invisible and who often find themselves in no man's land on the
battlefield of health care.
These are the sufferers of multiple sclerosis, an often
progressive, chronic, disabling disease that attacks the brain
and spinal cord and leaves them unable to walk, talk or care for
themselves.
There's no cure, but that's no reason to give up, according to a
group of Monterey Peninsula women who, five years ago, banded
together to help these particular victims.
"It's terrible for people to depend on the kindness of
strangers," said Dr. Lotte Marcus, a Carmel psychologist and one
of the founders of the Multiple Sclerosis Quality of Life
Project.
And, she said, it is "scandalous" that the home and hospital care
providers available for MS patients are untrained in how to
assist them, underpaid and sometimes unable to keep appointments
for home visits.
This month the MS Quality of Life Project received a $50,000
grant from the California Endowment, an organization that funds
programs for underserved persons with special needs, to provide
home-care services and extend help to homeless MS patients.
The Multiple Sclerosis Quality of Life Project, in cooperation
with the Silicon Valley Chapter of the National Multiple
Sclerosis Society, is a nonprofit corporation dedicated to
improving the quality of life for people with MS and their
families.
The organization is creating a pilot program in Monterey, San
Benito and Santa Cruz counties that is based on a needs
assessment conducted in May 2002.
The Quality of Life Project has raised an additional $40,000 in
the past three years from donations, including startup funds from
the Community Foundation for Monterey County and donations from
individuals and organizations.
The money is used to pay the salary of Andrea Dowdall, a medical
social worker who helps patients and their families cope with the
disease, obtain benefits, and get information on available
services. It also is used to pay a part-time office worker and
rent of a small office.
Dowdall sees a group of 47 patients scattered around the Central
Coast -- Hollister, Watsonville, Aromas, Gonzales and Carmel
Valley -- areas of low population where home services are
difficult to come by.
These clients were referred to the project by physicians, social
workers, veterans services officers and others who came in
contact with them.
In some cases, she said, her clients are suicidal, drug-addicted,
living in abusive situations or out on the street. She helps them
find housing, medical services, medication prescriptions,
equipment such as wheelchairs, and deal with employment issues.
In many cases, Dowdall said, patients are not told what resources
and services are available to them, and even social service
agencies are not aware of what is out there for them.
MS patients need special assistance if they become housebound,
wheelchair-ridden or bedridden, she said, and in-home service
providers, and even hospital nurses, are sometimes not trained in
how to move them properly when they must go to a medical facility
for treatment.
For some such patients, Dowdall said, the ordeal of being moved
isn't worth the benefit of the palliative treatments and
medications available for them. Some patients reject the drugs
that are prescribed to mediate MS because of side effects.
One of her clients, Dowdall said, would receive an injection on a
Friday that would leave her with flu-like symptoms Saturday and
Sunday, then go back to work on Monday. "What kind of life is
that?" she said.
Many MS patients are in their 40s and 50s, and can find
themselves in a long-term care facility where the average
patients are in their 80s and 90s, Dr. Marcus said.
Treasurer, secretary and founding member Cyndi Nelson said she
became involved after her father was stricken with MS while in
his 50s, lost his job and his long-term health care program and
became suicidal through despair and hopelessness. Helping him,
she said, opened her eyes to the effects of the disease on
patients, friends and family.
Marcus said the Quality of Life Program wants to expend the
safety net for MS sufferers and make in-home care more readily
available for them.
That, she said, will ultimately save hospitalization and
treatment costs as well as make life better for the clients.
She is writing a treatise, "House Calls," detailing how community
services can be provided to those with multiple sclerosis, and
the organization has a number of volunteers who do handyman work,
light housework, run errands or just visit with homebound
clients.
The Quality of life Project can use volunteers of all types,
Marcus said. Those interested may write to the project at P.O.
Box 223537, Carmel 93922-3537, call 625-7127 or fax to 624-5932.
--------------------------------------------------------------------------------
Kevin Howe can be reached at 646-4416 or
khowe@xxxxxxxxxxxxxxxxxxx
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