The Truth About MDA's ALS Support
Groups
by Kathy Wechsler
Whether you’ve recently received a diagnosis of ALS or have
been living with the disease for years, MDA’s ALS support
groups are there to help you express your individual concerns and
learn from others who’ve been dealing with the challenges
of ALS.
WHY GIVE IT A TRY?
There are several ready reasons to join a support group:
Education
“These groups are a wonderful means for sharing information
of vital interest and benefit to people with ALS (PALS) and their
family members,” said Sandra Till, a licensed social worker
from Canton, Ill., who facilitates the Central Illinois MDA ALS
support group.
ALS support groups that focus on the patient (rather than those
that focus on, for example, caregivers) usually meet once a month
in a fairly central location and have visiting professionals sharing
information about available resources, new treatments and clinical
trials that may be of interest. Experts also speak about end-of-life
issues, respite care, in-home care, transportation services, assistive
devices and other equipment to enhance quality of life.
Carolyn Shimek of Victoria, Texas, received a diagnosis of ALS
in July, and she has been consistently making the three-hour drive
to Houston for her support group ever since.
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Michael and Carolyn Shimek
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“I’m learning what kind of help is out there, like
with hospice,” said Shimek, 47, who attends with a different
family member each time. “Every time we go, we learn something
new.”
Advice
Besides obtaining practical information from experts, each participant
in a support group has the opportunity to share his or her own experiences
of living with ALS, voicing frustrations and getting advice from
others who have been in similar situations.
“It’s very empowering because you may be upset about
something, but somebody there has already been dealing with it,”
said Kathleen Scholl of Timonium, Md., whose husband, George Richard
— Rick — was found to have ALS in 2000. “You know
that [other members] understand what you are going through, or they
usually have some kind of practical advice to make you feel like
there is something you can do about it.”
Social Interaction
For some people, the support group meeting is their only source
of social interaction. As the disease progresses, it may make participation
in social activities more and more difficult.
“Socially, it’s kind of hard because during the day
now, I don’t get out much anymore... The group helps with
that,” said Shimek, who walks with a walker or cane.
Most ALS support groups throw holiday parties and put together
outings such as picnics.
“We’re not just together to share some kind of difficult
thing, we’re there to have a good time together with people
that we’ve come to like and enjoy,” Kathleen Scholl
said.
Other groups participate in fund-raisers for MDA’s ALS Division.
Comfort and Camaraderie
Till, who’s been leading her ALS support group for more than
two years, said that group members often tell her how important
the meetings are to them and that their fellow members are like
family.
Group members feel comfortable discussing their problems and challenges
with others because the meeting is totally confidential.
“Hearing other people’s stories helps [members] see
things in perspective with a realization that the emotions they
experience — ranging from outright anger to total despair
— are perfectly normal given the circumstances they are experiencing,”
said Till. “It helps that they can relate to one another and
help others go through the various stages of this disease.”
Rick Scholl, 58, and Kathleen regularly attend a support group
at an assisted living nursing home in Baltimore City.
“We have a couple of men who were particularly inspiring
to us that already passed away, and I think Rick is hoping to do
for some other people what they did for us — give them some
encouragement,” she said. “It’s been very helpful
to us emotionally, to learn and get over that and then give back
a little bit from what we’ve been through.”
Fear of the Unknown
It may take some time to get used to the idea of going to an ALS
support group, and everyone’s comfort level is on a different
timetable. People are usually concerned that meetings will be too
depressing or touchy-feely. They’re afraid to show their emotions.
“Some think that they won’t benefit from the [support
group], but in my experience, not a single person has retained that
fear after meeting with the group,” said Till.
Kathleen Scholl said that Rick, whose swallowing and speech are
affected and who uses a walker, was initially hesitant to go to
the group.
“He didn’t want to see other patients or tell anybody
that he was sick or that there was anything wrong,” said Kathleen,
who started going to the patient meetings by herself. “It
was hard for me in the beginning because the people are strangers
to you, and all you can see is yourself in that advanced condition,
but soon I started to know the people.”
“All of them have expressed feeling so much better after
our get-togethers,” Till said. “This is, by far, the
most personally rewarding group with whom I’ve been involved
as a professional social worker. I leave these meetings totally
uplifted and I can tell that they do, too.”
For more information on how to participate in your local ALS
support group, find your local MDA office by visiting als.mdausa.org and entering your zip code in the “Find Your Local MDA” search box or call (800) 572-1717.
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ALS Research Roundup
by Margaret Wahl
MDA-Funded ALS Registry Now
Online
A new, MDA-supported ALS registry, seeking to collect and examine
data from thousands of people with ALS, is now open on the Internet
at www.alsconnection.com.
Its data will be used to help determine risk factors for ALS, as
well as which interventions are beneficial and which educational
approaches are best.
“This is an opportunity for all patients to participate in
ALS research and enter their data into a national registry, even
if they are not at one of the large centers that currently is active
in ALS CARE,” said Robert Miller, a neurologist who heads
the Forbes Norris MDA/ALS Center at California Pacific Medical Center
in San Francisco.
The ALS CARE database (see www.outcomes-umassmed.org/als),
sponsored by Sanofi-Aventis Pharmaceuticals, has been collecting
similar information since 1996 and has enrolled some 6,000 patients.
However, it’s paper-based, whereas the ALS Connection is Web-based;
and it operates mainly through the largest ALS centers in the United
States, while the Connection is aimed at people getting care for
ALS anywhere in North America. Miller is an adviser to both registries.
Copaxone Results Encourage Investigators
Paul Gordon, associate medical director at the Eleanor and Lou
Gehrig MDA/ALS Center at Columbia University in New York, and colleagues,
have found that glatiramer acetate (Copaxone) was safe and
well tolerated in people with ALS, and that the participants in
a clinical trial showed evidence of altered immune-system activity
with the drug.
Gordon reported the results at the 16th International ALS/MND Symposium,
held in Dublin, Ireland, in December. The yearly symposium is sponsored
by the British Motor Neurone Disease Association.
Thirty people with ALS participated in this six-month trial of
Copaxone, a drug approved for use in multiple sclerosis. Those who
received Copaxone injections were compared to an untreated control
group (from another study).
The mechanism by which Copaxone is thought to help in multiple
sclerosis is through boosting production of cells that suppress
the immune system, the suppressor T-cells.
Gordon, who hopes to take trials of Copaxone in ALS into the next
phase, says the results are meaningful “because we showed
that we can alter the immune system in ALS patients the same way
that it’s done in patients with multiple sclerosis, where
the treatment is effective in slowing the course of the illness.
Whether these changes will correlate with clinical outcomes needs
to be determined in trials powered to assess clinical efficacy.”
Potent Antioxidant Found Safe, Well Tolerated
Single injections of AEOL 10150, made by Aeolus Pharmaceuticals,
are safe and well tolerated in people with ALS at a variety of dosages,
reported neurologist Robert Miller at the ALS/MND symposium last
month. Miller is the director of the Forbes Norris MDA/ALS Center
in San Francisco.
AEOL 10150 is purported to be a potent antioxidant, targeting superoxide,
hydrogen peroxide and other dangerous byproducts of cellular metabolism
that have been implicated in ALS and other degenerative disorders.
A multicenter trial of the compound, given twice daily by injection,
is planned.
Large-Scale ALS Factors Study Enters
Phase 2
A large-scale, MDA-funded study of genetics and epidemiology (disease
patterns) in ALS has entered phase 2 at the Eleanor and Lou Gehrig
MDA/ALS Center at Columbia University in New York.
Phase 1 tested the reliability of the questionnaire used in the
study, while phase 2 will compare 100 people with ALS to 300 without
ALS, using the questionnaire and DNA analysis.
The study seeks to determine what, if any, relationships exist
between the development of ALS and one’s genetic makeup or
environmental exposures.
Participants with ALS cannot have had ALS for more than a year,
and participants without ALS must meet several study criteria. The
investigators are giving preference to New York state residents,
although arrangements can be made for out-of-state participation.
For details, see www.mda.org/research/view_ctrial.aspx?id=134,
or contact Linda Ali Cruz, at (212) 342-5529, or lcruz@neuro.columbia.edu.
Umbilical Cord Blood
Stem Cells to Be Tested
Saneron CCEL Therapeutics, a biotechnology company associated
with the University of South Florida-Tampa, has announced it will
soon begin enrolling 50 people in India (spring 2006) and Taiwan
(early 2006) for a study of umbilical cord blood stem cells in ALS.
Umbilical cord blood, extracted from a vein in the cord right after
a baby has been born, has recently been found to be an excellent
and noncontroversial source of stem cells, primitive cells that
can mature into various kinds of tissue.
For information as it develops, see this publication and www.saneron-ccel.com.
Biotech Bill Change
Could Help ALS Research
MDA has joined some 30 other organizations that fund medical research
in urging Congress to ease restrictions on small business awards
for new biotechnology companies. Saneron CCEL (see
above) has benefited from this type of award.
Recent changes in the government’s Small Business Administration
grants program have excluded companies that rely heavily on outside
investors (venture capitalists), which describes most biotech startup
firms. The Biotechnology Industry Organization (BIO) is sponsoring
a bill (H.R. 2943 and S. 1263) to lift this restriction.
