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AMYOTROPHIC LATERAL SCLEROSIS SOCIETY OF CANADA

SOCIT CANADIENNE DE LA SCLROSE LATRALE AMYOTROPHIQUE


3000 Steeles Avenue East, Suite 200, Markham, Ontario L3R 4T9
Tel. 905-248-2052 Fax: 905-248-2019 Toll Free:1 800 267-4257 www.als.ca

ALS WAYS TO HELP


Assisting families living with ALS
If you know someone with ALS, you
may want to help but dont know
where to begin. Here are some ideas.
ALS will affect the roles and responsibilities of family members.
Spouses, parents, and children can
find themselves providing care and
support to someone with ALS.
Caregiving can make recreation,
chores, and even employment difficult or impossible to maintain for the
primary caregiver.
Many caregivers report high levels of
stress and stress-related illness.
Caring for someone with ALS is challenging. As time passes, the need for
commitment increases. Eventually,
ALS requires round-the-clock care.
Friends and neighbours are important
sources of support for the family.
Whether you live close by or far away,
there is still plenty you can do.
KEEP IN TOUCH
Maintain contact with family caregivers. A card, a call, or a visit means
a great deal. Caregivers as well as the
person with ALS will benefit from
your visits or calls. Continue to send
cards or letters even if you dont
receive a reply. Its a simple yet
important way to show you care.

DO SMALL THINGS
Little things mean a lot. When cooking, make extra portions and drop off
a meal (in a freezable container). If
youre on your way out to do an
errand, check with the caregiver to
see if there is anything needed.
Surprise the caregiver with a special
treat such as a rented movie, a library
book, or a gift certificate for a massage or dinner out.
GIVE THE CAREGIVER A
BREAK
Everyone needs a little time on their
own. Offer to visit with the person
with ALS so the caregiver can run
errands, attend a support group meeting, do a favourite activity, or attend a
religious service. Even if the caregiver does not leave the house, this will
provide some personal time. Chances
are the person with ALS will also
enjoy your company.
HELP WITH A SPECIFIC TASK
Many caregivers find it hard to ask
for something specific. Ask the family to make a to do list of hard-toget-done chores such as laundry, yard
work, or shopping. Decide what you
can do, then spend some time on a
regular basis to help out.

| Fact Sheet

BECOME INFORMED
Learn about ALS and how it impacts
the person and their family.
Information is available at www.als.ca
or from your local ALS Society.
PROVIDE A CHANGE
OF SCENERY
Plan an activity that gets family members out of the house. Invite the
family to your house or to a nearby
park for a picnic or a walk.
LEARN TO LISTEN
Sometimes caregivers just need to talk
with someone. Ask family members
how they are doing and encourage
them to share. Be available when the
caregiver is free to talk without interruptions. Try not to question or
judge, but rather support and accept.
You do not need to provide all the
answers just be a compassionate listener.
TAKE CARE OF THE CAREGIVER
Caregivers need to eat well, exercise,
and get enough rest so that they can
remain healthy. Encourage caregivers
to take care of themselves. Pass
along useful information. Offer to
attend a support group meeting with
them. Information is available from
your local ALS Society.
Over

ALS. Three letters that change peoples lives. FOREVER.

| ALS WAYS TO HELP

REMEMBER ALL
FAMILY MEMBERS
The person with ALS will appreciate
your visits, even if they are unable to
show it. Hold a hand, give a hug, talk
with the person the way you would
want to be talked to. Spouses, adult
children, and even young children are
all affected in different ways by ALS.
Be attentive to their needs too.
GET INVOLVED
There are many things you can do to
help fight ALS. Consider making a
contribution to the ALS Society to
support research. Volunteer at your
local Society to raise funds for local
services for those affected by ALS.
Get involved with the WALK for
ALS or Hike 4 ALS in your area. By
choosing to do any of these, you are
providing help for today and hope for
tomorrow.

YOU MAY NOT KNOW THAT


ALS CAREGIVERS
often feel alone and isolated from friends
may need assistance, but are reluctant to ask
are often unable to do errands or complete household tasks
experience stresses that sometimes affect their health
need regular breaks from caregiving
may need someone to listen
PEOPLE WITH ALS
need to feel valued
face an uncertain future
may worry about being a burden to their families
need companionship
strive to maintain independence and quality of life

The ALS Society has information


and support programs. Find the
society nearest you and give them
a call. We are here to help.
You are not alone.

ALS. Three letters that change peoples lives. FOREVER.

AMYOTROPHIC LATERAL SCLEROSIS SOCIETY OF CANADA


SOCIT CANADIENNE DE LA SCLROSE LATRALE AMYOTROPHIQUE
3000 Steeles Avenue East, Suite 200, Markham, Ontario L3R 4T9
Tel. 905-248-2052 Fax: 905-248-2019 Toll Free:1 800 267-4257 www.als.ca

ALS & Cognitive Changes


| Fact Sheet

Until recently, it was believed that ALS


did not affect thinking or behavior.
Research in the last few years has shown
that ALS can cause cognitive and
behavioral changes in some people.
Cognitive changes (differences in how
people think, know, perceive and
understand) usually result from brain cell
degeneration in the frontal lobe. Some
people with ALS experience behavioral
dysfunction without cognitive change.
However, many people with ALS will
experience no changes in either thinking
or behaviour. The following facts will
help you better understand ALS and
changes in the brain that may occur. If
changes in behavior or thinking are
suspected, speak to your ALS medical
specialist for further assistance.
o Research suggests that certain
proteins, either tau or ubiquitin, may
contribute to cognitive impairment
o Chromosomes 17 or 9 may be
implicated in familial forms of ALS with
cognitive impairment
o Approximately 30 to 50 per cent of
people with ALS experience cognitive
difficulties
o Mild problems, such as inattention and
slowed thinking, are the most common
in people with ALS and are often only
recognized through neurological testing

o Approximately 20 to 25 per cent


acquire severe impairment, such as
frontal lobe dementia (FTLD), a
progressive condition involving selective
degeneration of the frontal and anterior
temporal lobes of the brain
o A 2003 study showed approximately
five per cent of participants met the full
criteria for FTLD, with 52 per cent
meeting criteria for possible or probable
FTLD

o People who are older than 60, have


bulbar onset ALS, poor breathing or a
family history of dementia may be more
susceptible to cognitive impairment
o Diagnosis occurs through
neuropsychological and neurobehavioral
evaluations

o FTLD appears as a change in


personality and/or behavior

o People with both ALS and cognitive


impairment may have shorter lifespans
than those with ALS alone, possibly
because they are less likely to choose
life-prolonging procedures due to loss of
insight into their ever-changing needs

o Symptoms include apathy, restlessness,


mood swings, loss of reasoning or
problem-solving ability, repetitive
behaviors

o Data suggest the pathologic process is


somewhat different in people who have
both diseases compared with those who
have one or the other

o Unlike Alzheimer's disease, behavioral


symptoms are usually the first to develop,
rather than memory loss, which may not
occur at all

o Cognitive problems can't be cured but


may be relieved by psychotropic
medications

o The most common subtype of FTLD


is frontotemporal dementia (FTD),
which is marked by early decline in social
and personal conduct, lack of emotion
and loss of insight
o The two other subtypes are semantic
dementia (SD) and primary progressive
aphasia (PPA). SD is characterized by
loss of vocabulary, poor word
comprehension, word finding problems
and loss of insight; PA entails non-fluent
speech, poor grammar but good
comprehension

o To accommodate cognitive
impairment, family, friends and
caregivers can speak slowly and simply,
modify the environment and make
decisions regarding health-care and
finances early in the disease's progression
o Caregivers may need to be involved in
the decision-making process when the
person with ALS can no longer make
appropriate decisions
o Caregivers may require more support
when dealing with both ALS and
cognitive impairment, as stress and
care-giving responsibilities are increased

ALS. Three letters that change peoples lives. FOREVER.

AMYOTROPHIC LATERAL SCLEROSIS SOCIETY OF CANADA


SOCIT CANADIENNE DE LA SCLROSE LATRALE AMYOTROPHIQUE
3000 Steeles Avenue East, Suite 200, Markham, Ontario L3R 4T9
Toll Free:1 800 267-4257 www.als.ca

ALS QUICK FACTS


| Fact Sheet
ALS is Amyotrophic lateral sclerosis
a - absence
myo - muscle
trophic - nourishment
lateral - side (referring to the spine)
sclerosis - hardening or scarring
The word "lateral" identifies the area
where nerve cells in the spinal cord that
nourish the muscles are located. As nerve
cells die, the muscles receive no nourishment and waste away. Sclerosis occurs as
the area affected deteriorates.
ALS may also be called
Lou Gehrig's disease
MND (Motor Neuron Disease)
SLA (Sclrose latrale amyotrophique)
Maladie de Charcot
ALS is a rapidly progressive neuromuscular disease
Motor nerve cells die
Voluntary muscles degenerate
The senses are unimpaired
The intellect may remain unaffected
ALS is not contagious
Some cases are hereditary
Less than 10 per cent are familial ALS
ALS is a fatal disease with no effective treatment and no cure
Eighty per cent of people with ALS die
within two to five years of diagnosis
Some people die within a few months
Ten per cent of those affected may live
10 years or longer
ALS is the most common cause of
neurological death in Canada
The mortality rate for ALS is
approximately 2/100,000 per year.
Approximately 2,500 - 3,000
Canadians over 18 currently live with
ALS

ALS can strike anyone


The incidence rate (number of new
diagnoses) of ALS is estimated to be
2/100,000 people per year
Less than 10 per cent of cases of ALS
are hereditary
ALS can strike both men and women
ALS affects all ethnic and
socio-economic groups
ALS can strike young or very elderly
adults but is most commonly diagnosed
in middle and late adulthood
ALS affects the whole family
People with ALS require costly equipment and care
Eighty per cent of the burden of care is
shouldered by family members
ALS is a drain on the physical,
emotional, and financial resources of
caregivers
The ALS Society of Canada
Funds research for a cure
Supports the Provincial Societies
Provides information to build
awareness
Ten Provincial ALS Societies
Provide care and assistance
Provide information and referrals
Provide support for caregivers
Provide equipment for people with ALS
Advocate on behalf of people with ALS
June is ALS Awareness Month
ALS Canada and the provincial ALS
Societies work together to raise awareness of ALS and to raise funds for
research and support services. Please buy
a cornflower in June to support those
who suffer from this devastating disease.

TEN PROVINCIAL SOCIETIES

ALS Society of Alberta (and NWT)


250 - 4723 - 1st Street SW
Calgary, AB T2G 4Y8
403-228-3857
www.alsab.ca
ALS Society of British Columbia (and Yukon)
1233 - 13351 Commerce Parkway
Richmond, BC V6V 2X7
1 800 708-3228
www.alsbc.ca
ALS Society of Manitoba
493 Madison Street
Winnipeg, MB R3J 1J2
1 866 718-1642
www.alsmb.ca
ALS Society of New Brunswick
P.O. Box 295
Moncton, NB E1C 8K9
506-532-5786
www.alsnb.ca
ALS Society of Newfoundland & Labrador
P.O. Box 844
Corner Brook, NL A2H 6H6
1 888 364-9499
www.envision.ca/webs/alsnl
ALS Society of Nova Scotia
900 Windmill Road, Suite 113
Darmouth, NS B3B 1P7
902-454-3636
www.alsns.ca
ALS Society of Ontario and Nunavut
3100 Steeles Avenue East, Suite 402
Markham, ON L3R 8T3
1 866 611-8545
www.alsont.ca
ALS Society of Prince Edward Island
P.O. Box 1643
Summerside, PEI C1N 2V5
902-439-1600
als_society_pei@hotmail.com
ALS Society of Qubec
Socit de la SLA du Qubec
5415 rue Par, bureau 200
Montreal, Qubec H4P 1P7
514-725-2653
www.sla-quebec.ca
ALS Society of Saskatchewan
90 C Cavendish Street
Regina, SK S4N 5G7
(306) 949-4100
www.alssask.ca

ALS. Three letters that change peoples lives. FOREVER.

July 2011

AMYOTROPHIC LATERAL SCLEROSIS SOCIETY OF CANADA


SOCIT CANADIENNE DE LA SCLROSE LATRALE AMYOTROPHIQUE
3000 Steeles Avenue East, Suite 200, Markham, Ontario L3R 4T9
Tel. 905-248-2052 Fax: 905-248-2019 Toll Free:1 800 267-4257 www.als.ca

ALS, MS AND MD
| Fact Sheet

ALS, MS, and MD: How do they differ?


Often, the public confuses Multiple Sclerosis, Muscular Dystrophy, and Amyotrophic Lateral Sclerosis.
AMYOTROPHIC LATERAL
SCLEROSIS (ALS)
ALS is a form of motor neuron disease.
It involves the loss of the actual motor
nerve cells. The nerves affected are in
the spinal cord and those that travel to
the voluntary muscles, so there are
symptoms of both central and peripheral involvement, with weakness and wasting in arms, legs, and mouth/throat
(bulbar).
The loss of nerve cells results in secondary atrophy or wasting (amyotrophy)
of the muscles served by those cells. The
hardening in ALS involves the lateral
columns of the spine as a secondary
phenomenon, providing the lateral sclerosis part of the name.
Although people with ALS usually have
initial symptoms in one side more than
the other, both sides are involved and the
effects usually become more symmetrical
as the disorder progresses. Sensation is
not affected.
Approximately 3,000 Canadians live with
ALS. Two to three Canadians a day die
of ALS. Less than 10 per cent of all
cases of ALS are genetic.
Treatments for ALS are being developed
and while the cause of ALS is unknown,
research provides hope for a cure.
MULTIPLE SCLEROSIS (MS)
Multiple sclerosis (MS) is an unpredictable at times disabling disease of
the central nervous system: which consists of the brain and the spinal cord.

The disease attacks the protective myelin


covering of the central nervous system,
causing inflammation and often destroying the myelin in patches. The severity of
MS, rate of progression, and specific
symptoms cannot be predicted at the
time of diagnosis.
While symptoms may be similar to those
of ALS (weakness and wasting of the
arms and legs) sensation is often affected
in MS because of demyelination in parts
of the nervous system where sensation is
transmitted.
The actual word sclerosis comes from a
Greek word meaning scar. Scarring in
MS distorts or blocks nerve signals.
An estimated 50,000 Canadians have
multiple sclerosis. Canada is a high-risk
area for MS, which occurs more often in
countries which are further from the
equator.
MS is not a fatal disease. The vast
majority of people can be expected to
live a normal or near-normal lifespan,
thanks to improvements in the treatment
of symptoms and in other therapies.
The cause of MS is unknown but
researchers are closer to finding the
answer.
MUSCULAR DYSTROPHY (MD)
Muscular Dystrophy (MD) is the name
of a group of about 40 different muscle
disorders that are characterized by progressive weakness and wasting of the
voluntary muscles that control body
movement. As muscle tissue weakens and

wastes away, it is replaced by fatty and


connective tissue. MDs are not diseases
of the central or peripheral nervous system, but exclusively of the muscle.
Two-thirds of MD strikes children,
although dystrophies such as opthalmoplegic (affects muscles of the eyes and
pharynx) and late-onset MD strike in
adulthood.
MD is inherited or caused through
genetic mutation.
Although there is no cure for muscular
dystrophy as yet, physiotherapy and
occupational therapy can help people
with muscular dystrophy achieve their
maximum level of independence in daily
living. In some cases, certain surgical
procedures can also improve the quality
of life for many individuals with muscular dystrophy.

ALS vs MS
How to explain the
differences
ALS is a rapidly progressive and fatal
neuromuscular disease.
MS is a scarring and hardening of the
sheath around the nerves in the brain,
spinal cord, and optic nerve.
MD is a muscular disorder with
specific kinds of MD involving
different muscles in the body.
MD is almost exclusively hereditary.
MS is sporadic with some familial
tendency. ALS is sporadic in all but
10 per cent of cases.

ALS. Three letters that change peoples lives. FOREVER.

AMYOTROPHIC LATERAL SCLEROSIS SOCIETY OF CANADA


SOCIT CANADIENNE DE LA SCLROSE LATRALE AMYOTROPHIQUE
3000 Steeles Avenue East, Suite 200, Markham, Ontario L3R 4T9
Tel. 905-248-2052 Fax: 905-248-2019 Toll Free:1 800 267-4257 www.als.ca

ALTERNATIVE TREATMENTS
| Fact Sheet

A diagnosis of ALS is devastating to


all concerned, as it is a rapidly progressive disease with no known cure
yet and no effective treatment.
Rilutek, generically known as riluzole is the only FDA-approved drug
for use in treatment of the disease. A
costly drug that may have significant
side effects in some people, it has
been shown to prolong the life of a
person with ALS up to several
months. No other drug or treatment
besides Rilutek appears to alter the
course of ALS.
Faced with the limitations of available treatment, people with ALS and
their caregivers may be inclined to
seek alternative treatments. It is
important to be aware of the potential dangers in this pursuit, as there
are some people who will take financial advantage of those who are desperate to find a treatment or cure.
The global community of
ALS/MND health professionals is a
small but dedicated group that keeps
abreast of current developments in
ALS research and communicates frequently through scientific meetings,
the internet, and newsletters. Anyone
who maintains membership or contact with a recognized ALS/MND
association or society may be sure
that they are receiving up-to-date

information on the latest research


and therapies.

CONVENTIONALLY
APPROVED DRUGS

While the internet provides an invaluable tool for communication among


ALS professionals, it is also a source
of a great deal of misinformation
generated by unscrupulous or illinformed sources of therapies and
even "cures" for this as yet incurable
disease. Even respectable news
sources, including radio, television,
and newspapers, contribute to the
misinformation, as health news
becomes a more and more marketable commodity among an aging
population, and competition among
news agencies becomes fiercer. The
gains in understanding ALS being
made by the research community are
not generally the headline-grabbing
sort; and, there is a tendency among
newsmakers to overstate such glimmers of hope as "miraculous breakthroughs," creating false hope in
those who have ALS and placing
pressure on the medical community
to grant access to new therapies.

Rilutek is currently the only


approved drug for the treatment of
ALS/MND.

The following information is intended to provide an overview of therapies either in development or on the
market, and to assist in making
informed choices in the treatment of
ALS.

THERAPIES THAT SHOW


PROMISE IN ANIMAL MODELS
Coenzyme Q10, COX-2 inhibitors,
minocycline, and creatine are a few
examples of drugs that have shown
promise in the superoxide (SOD1)
mutant mouse model that was created to mimic a pattern of familial ALS
present in 20 per cent of inherited
cases. None of these, or any other
experimental drugs have translated
into the same degree of efficacy in
the human form of the disease.
OFF-LABEL DRUGS
"Off-label" describes the legal use of
a prescription drug to treat a disease
or condition for which the drug has
not been approved. Such use of prescription drugs may present a problem, because they are often prescribed by a physician who is not
familiar with ALS. Without rigorous
testing, there is no knowledge of the
correct dose or of interactions with
other medications used in the treatment of ALS patients. While the use
of drugs in combination, or polytherapy, may be an approach to the

ALS. Three letters that change peoples lives. FOREVER.

| Fact Sheet

treatment of ALS, without testing on


specific drug combinations, optimal
combinations and doses remain
unknown. Most insurance companies
will not reimburse people with ALS
for the cost of a drug that is not
specifically directed for use in the
treatment of that disease.
NON-CONVENTIONAL
(ALTERNATIVE)
MEDICATIONS
Non-conventional, alternative, and
"natural" therapies form the broadest
spectrum of available treatments, and
are the most likely to come from
questionable sources. An online
search for ALS treatments will turn
up substances to "target and reverse
the brain and neurological imbalances," ways to "beat the system"
through nutrition, special supplements, and detoxification, and
"cures" that will help your body
"regain its natural state of health and
vibrancy." At best, some of these
treatments may or may not be harmless, at worst is they hold out cruel
hope for a cure that does not yet
exist.
On the less extreme end, many
people with ALS use readily available
over-the-counter treatments, nutrients, herbal supplements, and natural
therapies that they feel are helpful
with managing symptoms. For the
most part, these treatments do no
harm. Since there are few formal
trials involving these products, there
is no evidence showing their benefits.
In addition, many natural medicines

contain the same active molecules as


chemical drugs, but produced from a
plant source rather than synthetically.
Therefore, it is necessary to discuss
taking these with your medical
doctor.
Canada has recently passed legislation
to govern the production, labeling,
and sale of natural health products
(NHPs) under which manufacturers,
importers, packagers, and labelers of
NHPs in this country will be required
to comply with stringent regulations
regarding medicinal and nonmedicinal ingredients, source,
potency, and recommended use.
Health claims for NHPs sold in
Canada will require standards of
evidence such as traditional references, observational studies, expert
committee reports and clinical or trial
data. These regulations should make
it easier for people to make informed
choices when using alternative
medicines.
STEM CELL THERAPY
Stem cell research presents hope for
the treatment of many diseases,
including ALS. While this research
holds promise, it is in its early stages,
and since ALS is a complex disease, it
is unlikely that stem cell therapy will
offer a simple cure in the near future.
Uncontrolled, non-approved stem
cell therapy is available in certain
parts of the world, and people have
paid great sums of money for treatments that may be dangerous and
have no guarantee of success, or
worse, show evidence of failure.

COMPLEMENTARY
THERAPIES
Complementary therapies are not
used as a replacement but in conjunction with conventional medicine.
They are not meant as a cure, but
may provide relief from symptoms
and make day-to-day life more comfortable for people with ALS.
Complementary therapies include
meditation, hypnosis, acupuncture,
massage, and other physical and
mental therapies used to relieve
anxiety, stress, stiffness, pain, and
discomfort. To learn more about
these options, please refer to ALS
Canada's fact sheet, Complementary
Therapies.
SOME USEFUL RESOURCES:
International Alliance of
ALS/MND Associations
http://www.alsmndalliance.org/
The Motor Neurone Disease
Association (U.K.)
http://www.mndassociation.org/
index.html
The ALS Association (U.S.)
http://www.alsa.org/
Rilutek ALS Info Web Site
http://www.alsinfo.com/index.jsp

ALS. Three letters that change peoples lives. FOREVER.

By: Elaine MacNeill