As a speech-language
pathologist, I specialize in helping people with ALS who have speech
or swallowing difficulties.
Speech therapists — or speech-language
pathologists, as they're usually called nowadays specialize in
helping people with speech, language, cognitive and swallowing
problems. People with ALS generally have deficits in speech and
swallowing sooner or later.
In ALS, which is progressive, we don't look so
much at trying to "fix" a speech or swallowing deficit as we do at
trying to compensate for the deficit. For example, as speech is
lost, we help people find alternative means with which to
communicate. As swallowing competence is lost, we look to change the
way an individual may eat or change what they eat to keep them
eating as long as possible.
Speech is affected mostly because of weakness
in the muscles of articulation — the tongue, the palate and the lips
— and because of lack of breath support for speech. It's the tongue,
which is composed of multiple muscles, that's primarily responsible
for forming the sounds that we make into words. So, even if you can
make a sound, it becomes very difficult to form it into words that
can be understood, because the tongue is no longer moving as
effectively as it once did.
Also, in ALS, the soft palate [back part of
the roof of the mouth] doesn't elevate as it used to, closing off
the nasal passage and separating the mouth from the nose. In ALS,
when the palate doesn't elevate, almost all sound will go up in the
nasal cavity and be resonated there. This is called hypernasality
and can have a dramatic effect on your speech.
The "energy" for speech and for sound is
breath support. When you breathe in and prepare to speak, the vocal
cords come together and you build up pressure below them. When you
begin to speak, they come apart, allowing the air to rush between
them and causing them to vibrate quickly, which generates sound.
In ALS, as the disease progresses, you usually
are unable to get good, deep breaths, so you have reduced breath
support for speech. Without adequate breath support, you're unable
to talk very loudly or produce long sentences.
Many of the muscles involved in speech are
also involved in swallowing, and they weaken in the same manner. As
ALS progresses, you can have problems with things getting "caught in
the throat," or with food or liquid going down the trachea into the
lungs instead of down the esophagus into the stomach. Sometimes it
can take so long to eat a meal (an hour and a half or so) that
people get tired and don't eat or drink enough to support their
nutritional and fluid needs.
Early on, we can educate and prepare a person
for the changes that will take place in speech and swallowing
functions as the disease progresses. Another thing that can be done,
if the person can get started early, is voice banking, which means
taping some messages so that you can use them later if you lose the
ability to speak. There are lots of devices that enable you to do
this, but the key is doing this early enough.
When people still have some functional speech
but it's no longer as clear as it used to be, we can teach
strategies that will increase their ability to be understood.
For example, most of my patients complain that
talking can be exhausting, so we teach them to budget their energy.
If you're in an environment where your spouse or family members are
familiar with your speech, it's not as important to use "good"
speech. However, with an unfamiliar listener, that's when you really
want to focus on good speech.