Source: Cleveland Clinic Foundation
Because activities of daily living including leisure activities - can
cause fatigue much quicker in people with amyotrophic lateral sclerosis
(ALS), it's important to modify activity levels. The occupational therapists
can offer many energy-conserving and work-simplifying tips in order to help
people with ALS function independently and successfully.
Occupational therapist assist
individuals in maximizing their level of functional independence. They
offer: Individualized treatment to ensure that the needs of each patient are
addressed, following an accurate assessment of each patient's current level
of functional performance. Ongoing evaluation and appropriate treatment
strategies to optimize the range of motion and muscle strength of upper
extremities (arms and hands). This helps people with ALS successfully
complete activities of daily living such as dressing, eating, toileting and
bathing. After evaluating people with ALS, the occupational therapist can
help them maximize their functional performance by suggesting appropriate
exercises, assertive devices and adaptive equipment.
Assistive devices and
The occupational therapist can recommend a variety of assistive devices that
are designed to make home care and daily activities more comfortable. Some
- Built-up utensils
- Electric beds or mattresses
- Grab bars
- Reach devices
- Sliding boards
Along with appropriate exercise, this equipment can help people with
ALS maintain their independence.
With all activities of daily living, keep the following guidelines in mind
to stabilize yourself and maintain your balance:
- Keep your arms as close to the middle of your body as possible.
- Bring the activity as close to the middle of your body as possible.
- Always have arm support: For example, hold on to the bathroom sink
while brushing your teeth.
- Support the joint above the one you are using during an activity: For
example, securely hold your elbow on the table when writing.
- Support one arm with the other while performing activities such as
shaving or applying make-up.
- Stabilize the arms and legs which are not moving: Keep your feet flat
on the floor if you are sitting, and rest your inactive arm on a firm
- Use a splint to help support your hand during activities. Splints may
also be used to provide rest and comfort to your arms and hands.
- Add longer handles to hair brushes, combs, toothbrushes, razors or
other home gadgets if you have shoulder weakness.
- You can also build up handles with foam rubber if you have a weak
Following is a list of the most common recommendations that assist
- cleaning and shopping.
- eating and drinking,
- general hygiene and self-care activities,
- working in the kitchen,
Not all of these recommendations may benefit your personal situation.
Your occupational therapist can help determine which of these
recommendations is best for you.
- Get dressed while sitting in a chair that has arm rests - this
will help you keep your balance.
- Roll from side to side to get pants over your hips. You can do
this while sitting in a chair or lying down on your bed.
- Wear clothes that are loose-fitting and have elastic waistbands.
- Choose wrap-around clothing instead of the pull-over type. Also
choose clothing that opens in the front, not the back.
- Wear clothing with large, flat buttons or use Velcro closures.
- Use a button hook to button clothing.
- Use a dressing stick if you have shoulder weakness to get your
coat or shirt on or off.
- Use a zipper pull or attach a leather loop on the end of the
zipper to zip pants or jackets.
- Use devices such as a sock aid and long-handled shoe horn for
- Install grab bars inside and outside the bathtub or shower.
- Use a bathtub transfer bench or a shower chair with a back support.
- Put extended lever handles on faucets to make them easier to turn.
- Put a non-skid mat in the bath tub.
- Use a hand-held hose for showering and bathing.
- Use a long-handled sponge or scrubbing brush.
- Use soap-on-a-rope, bath mitts or sponges with soap inside or a soft
soap applicator instead of bar soap.
- Use lukewarm water, as very hot water can cause fatigue.
- Sew straps on towels to make them easier to hold while drying.
- Place a towel on the floor outside the tub to dry your feet so you
- Put a towel on the back of your chair and rub your back against it to
- Or, use a terry cloth robe instead of a towel to dry off.
- Use an elevated toilet seat and/or safety rails to assist standing from a low surface.
- Do not use towel racks or bathroom tissue holders to help you stand.
- Put extended lever handles on faucets to make them easier to turn.
Hygiene and Self-Care Activities
- Use hair brushes and combs with built-up handles
or handles with finger loops.
- Use toothbrushes with built-up handles or use an electric
Eating and Drinking
- Rest your elbows on the table to provide more motion at your wrist and
- Sit with your knees and hips bent at a 90-degree angle in a
- Use utensils with built-up, lightweight handles, or use a "spork" - a
spoon and fork in one. Use a rocker knife for cutting food.
- Use a non-skid mat (made out of a material called "dycem") to
stabilize objects on the table.
- Use a plate guard or plate with a raised lip to prevent food from
- Use a long straw with a non-spill cup or use a plastic mug with a
Working in the Kitchen
- Use electrical appliances whenever possible.
- Use a jar opener for tightly sealed containers.
- Don't close jar lids or containers too tight once they have been
- Use an extended lever to assist with lift-tab cans.
- Use pans with a wide base that can not be knocked over easily.
- Use a food processor for vegetable cutting and peeling.
- Use plastic containers to avoid breakage.
- Use a non-skid mat (made out of a material called
"dycem") to stabilize bowls and plates.
- Store food and beverages (such as milk or juice) in small, easy to
- Place utensils, pots, pans and measuring cups on
a peg board or in an accessible cupboard instead of in lower cupboards which require
bending. Sit when getting things out of lower cupboards.
- Use a spike board to stabilize vegetables, fruit and potatoes so
you have both hands free to peel or chop them.
- Use two hands to pour liquids.
- Use scissors to open cellophane packages.
- Use a box top opener to open boxes.
- Use long handles on sponge mops, cleaning
brushes, dust pans, brooms or window washers.
- Sit to fold laundry, wash dishes, iron clothes, use the sweeper, mop the floor or to
plug in appliances at low outlets.
- Call ahead to make sure the store has the item
- Call ahead to reserve a wheelchair or tri-wheel cart if you aren't
planning to bring your own.
- Call a taxi or ask a friend or family member to drive you.
Other Useful Tips
- Always keep emergency numbers in an accessible
- Use telephones with oversized buttons.
- Do not keep throw rugs on the floors to avoid slipping or tripping
Information Tips for Improving
As the muscles weaken in the voice box
(larynx), throat (pharynx), roof of the mouth (soft palate) tongue and lips, people with
amyotrophic lateral sclerosis (ALS) may find it difficult to pronounce words clearly. Some
resulting speech impairments may be:
- Hoarse or strained voice
- Muffled or nasal-sounding voice
- Unclear or slurred speech
Speech-language pathologists can help
people with ALS maintain as many communication skills as possible. They also teach
techniques that conserve energy, including non-verbal communication skills.
Speech-language pathologists are also available to:
- Recommend appropriate communication technologies
to provide treatment that will aid in the success of daily activities.
- Treat all types of speech, language and communication problems.
- Evaluate swallowing function and recommend changes as necessary.
maintain and enhance communication
- Choose an environment with reduced noise, it
can be quite tiring to try to
"talk over" the television or radio.
- Speak slowly.
- Be certain your listener can see your face. Look at the person
while you are talking. A well-lit room enhances face-to-face conversation, increasing
- Use short phrases -- say one or two words or syllables per breath.
- Over-articulate your speech by prolonging the vowels and
exaggerating the consonants.
- Choose a comfortable posture and position that provide support
during long and stressful conversations.
- Be aware that exercises intended to strengthen weakening muscles
may be counter-productive. Always ask your speech-language pathologist which exercises are
right for you.
- Plan periods of vocal rest before planned conversations or phone
calls. Know that fatigue significantly affects your speaking ability. Techniques that work
in the morning may not work later in the day.
- If you are soft spoken and your voice has become low, consider
using an amplifier.
- If you are on a respirator (with fully inflated cuffs), an
electro larynx or respiratory tube that provides an alternative air source may be used.
If some people have difficulty understanding you, the following
strategies may help:
- If you are able to write without difficulty,
always carry a paper and pen as a backup so you can write down what you are trying to say.
- If writing is difficult, use an alphabet board to point or scan to
the first letter of the words that are spoken.
- Spell words out loud or on an alphabet board if they are not
- Establish the topic before speaking.
- Use telegraphic speech - leave out unnecessary words to
communicate the meaning of the topic.
Nonverbal communication, also called
augmentative and alternative communication (AAC), is a method of communicating without
spoken words. When communication needs cannot be met through speech, the following
techniques can be practiced by people with ALS:
- Residual speech (or, making the best use out of what speaking
ability is left).
- Effective use of expressions and gestures.
Non-verbal communication can help people with speech difficulties
actually speak better by:
- Reducing the frustration and stress of being unable to
- Alleviating the pressure to speak.
- Allowing the person to be more relaxed and come across in a more
Here's a sample of the
assistive devices that are available to help people with ALS communicate more clearly.
- Palatal lift -
a dental apparatus that is similar to a retainer. It lifts the soft palate and stops air
from escaping out of the nose during speech.
- Amplification -a personal amplifier that
can be used to increase vocal loudness in soft-spoken people. The amplifier also decreases
- TTY telephone relay system -a telephone equipped with a keyboard so speech can be typed and read by
a relay operator to the listener. Either the whole message can be typed or just the words
that are not understood can be typed.
- Low technology devices -notebooks and
language boards can be used as an alternative communication techniques.
High technology electronic speech enhancers, communication
with voice synthesizers and dedicated communication devices are available. Patients who
are interested in purchasing an electronic communication aid should discuss this with the
speech-language pathologist before contacting sales representatives for these
Here are some ways in which listeners can help people
who have difficulty speaking and communicating:
- Talk to the person only
face-to-face and look at the person as he/she is speaking.
- Ask questions that require a "yes" or "no"
- Repeat the part of the sentence that you understood. (For example,
"You want me to go upstairs and get the what?")
Ask the person to repeat what he/she has said, or ask him/her to
speak slower or spell out the words that you did not understand.
Preparing for emergencies
- Use an intercom system or baby
monitor to alert others that there is an emergency.
- Use bells or buzzers if you are not able to speak. Use
"codes" that signify urgency for example, a tinkling bell may mean, "I'd
like company" while an air horn means there's an emergency.
- Carry a portable phone that is equipped with pre-programmed
- Pre-program all of your telephones so they can automatically dial
the necessary emergency numbers.
- Consider a "Life Call" button if you spend time alone.
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