
Amyotrophic Lateral Sclerosis - Therapy
Amyotrophic Lateral Sclerosis can not be healed, but
patients with Amyotrophic Lateral Sclerosis can be treated, and
they have to be treated.
The aim of therapy in Amyotrophic Lateral Sclerosis is to improve
and stabilize strength, funcitoning and especially independence in
activities of daily living. The best therapy can be obtained by an
interdisciplinary team consisting of physicians, nurses,
physiotherapists, occupational therapists, logopaedics,
psychologists and social workers. Since a few years there are
medical options, Riluzole is the first drug exhibiting an
improvement of the course of the disease.
Amyotrophic Lateral Sclerosis - Medication
Riluzole
The first drug proving effectiveness under controlled conditions
was riluzole. A mean extension of life duration of some months was
documented in that study. It seems to be especially effective in
patients with initial signs of dysarthria and dysphagia. In a
recent retrospective study as well as in an open prospective study
patients showed an increase of life duration of 21 or 12 months. It
is recommended to prescribe this medication as early as possible in
the course of the disease.
Creatine
Creatine is important in muscle energy metabolism. The mouse model
of motor neuron disease showed an effectiveness of Creatine on
survival of motor neurons. These results could not be reproduced in
man.
Some athletes use it to get a better strength of their muscles. So
patients tried it as well with the same purpose. The substance is
to be taken with much fluid (2 litres per day), but not with
coffee. In the first ten days of intake twice a day 4 grams are
recommended, then twice a day 2 grams. Uptake of this substance
into the muscle fibre is an active process. The activity of this
process gets downregulated when there is much creatine circulating
in the blood. So after three months of intake an interruption for
one month is necessary. Then one has to start with a loading dose
for ten days again. Before taking creatine one should consult the
general practitioner wether there are any contraindications,
especially in case of preexisting renal disease.
Vitamin E
Tocopherol (Vitamin E) is an antioxidative substance. It reduces
the effect of metabolic products of oxygen (radicals) in cells. In
high doses of 1000 mg per day a gain of life duration could not be
noticed in Amyotrophic Lateral Sclerosis, but the progression from
less severe to more severe stages seemed to be slowed.
Other substances
Some nerve growth factors were examined without success or
presented intolerable side effects. Anabolic agents, antiviral
medications, some hormones and immune suppressive drugs did not
show any effect at all.
Amyotrophic Lateral Sclerosis -
Physiotherapy
Weakness of muscles is the cause of most of the problems in
Amyotrophic Lateral Sclerosis. Patients with Amyotrophic Lateral
Sclerosis should train with low to moderate intensity, not aiming
an increase of strength but stabilisation of present functions.
According to the actual condition an increase of stamina and
function may be aimed. Too intensive training can result in further
weakness. Patients should be advised not to train until exhaustion.
They should learn to recognize warning signs like marked weakness
and muscle pain, especially continuing 24 to 48 hours after
training or enhanced cramps.
Training with low to moderate aerobic exercise, e.g. walking,
swimming and training with an ergometer, always dependent on the
individual condition can be done. So staying power and performance
of the cardiovascular system can be maintained.
Shortening of muscles has to be recognized and moderate stretching
has to be done, especially in case of wheelchair dependency .
In individual cases orthotic devices can lead to better movement
function. E.g. an ankle-foot orthosis can help walking without
stumbling in case of weakness of foot elevators.
In the course of the disease muscles of respiration are involved.
First symptoms may be sleep disturbances, morning headache and
dyspnea on exertion. In the last fifteen years increasing knowledge
in therapy of this condition was gained. Pulmonary function has to
be be trained by physiotherapy. If this is not sufficient patients
should be offered nasal ventilation, at first mainly used in the
night.
Further aspects of physiotherapy are massage, thermotherapy,
balneotherapy and electrotherapy. Their main issue is pain
reduction and relaxation of tense muscles due to unphysiological
use.
Amyotrophic Lateral Sclerosis - Occupational
Therapy
Occupational therapy has the same approach as physiotherapy, the
main focus lies on arm function and trunk control. A domain of
occupational therapy is providing patients with assistive devices
to support independence in daily living. When properly selected and
designed, they can maintain independence and often increase safety,
speed and acceptance. Simple assistive devices such as grab bars,
reachers or sliding boards can help with gross positioning and
activities. Clamp-On Raised Toilet Seat and safety frame may
support toilet use.
Amyotrophic Lateral Sclerosis - Logopaedics
Disorders of speaking and swallowing are the main subjects of
logopaedia. The disorder of speaking due to muscular problems is
called dysarthria. Patients have to train and learn techniques to
be better understandable. If this is impossible, they have to be
encouraged to write the message down or have to be provided with an
electronic communicator.
Swallowing problems need identifying early to minimize the risk of
aspiration-related infections developing and malnutrition or
dehydration. Management of dysphagia is an important clinical
province of logopaedics. Their strategies for dysphagia treatment
involve modification of either eating behavior, modifying the
consistency of food and drinks, or postural adjustment. They also
teach swallow techniques (facilitation and maneuvers).
If all other methods fail and the patient is not getting sufficient
nutrition and hydration, a percutaneous gastrostomy tube (PEG),
also known as a feeding tube, may be necessary. The decision to get
a PEG is highly personal. Patients are understandably reluctant to
undergo an invasive procedure that bypasses the normal eating
process, yet some are ultimately relieved after the surgery and
find they get some of their strength back after receiving adequate
nutrition again.
Amyotrophic Lateral Sclerosis - Psychology
Often patients suffer from depressive disturbences. Coping with the
disease or problems of social integration may be reasons. Patients
have to be informed about the course of the disease in an adequate
way. Sometimes it may helpful to give psychological support. Only
with a constructive attitude patients can deal with the disease in
the best way. Antidepressants can help to handle with the
depression, as well.
The family/partner of the patient also may need psychological
support. In many regions support groups for patients with
Amyotrophic Lateral Sclerosis do important work. The groups provide
a platform for persons with ALS and their partners to discuss any
relevant or personal issues, and professionals working in this
particular field are often featured speakers.
Amyotrophic Lateral Sclerosis - Inpatient
Rehabilitation
The Klinik Hoher Meissner provides a qualified rehabilitation
treatment program that helps patients maintain the highest possible
level of functioning. Following a complete evaluation, the
treatment team teaches individuals to improve movement and to
develop ways to compensate for any loss of function. Led by a
specialized physician the team includes nurses, physical,
occupational and speech therapists, psychologists and dieticians.
Together with the patient the team works out an appropriate
treatment plan. The aim of our inpatient rehabilitation is a
lasting improvement of functions and abilities.
The opportunity to live together with the patient in our clinic is
used by the spouses quite often. The patient can concentrate on the
therapies without labour, housework or other stressing factors of
home.
More questions? Your opinion?
Contact us by E - mail
Hardtstraße 36, 37242 Bad Sooden-Allendorf, Germany
Tel.: 0049 - 5652 - 55 861, FAX 0049 - 5652 - 55 814
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Aktualisiert am 10.10.2009