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ALS Tips

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

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 adaptive equipment

The occupational therapist can recommend a variety of assistive devices that are designed to make home care and daily activities more comfortable. Some examples include:

Along with appropriate exercise, this equipment can help people with ALS maintain their independence.

General Guidelines

With all activities of daily living, keep the following guidelines in mind to stabilize yourself and maintain your balance:

Following is a list of the most common recommendations that assist patients in

Not all of these recommendations may benefit your personal situation. Your occupational therapist can help determine which of these recommendations is best for you.

Dressing

Bathing

Toileting

General Hygiene and Self-Care Activities

Eating and Drinking

  1. Rest your elbows on the table to provide more motion at your wrist and hand.
  2. Sit with your knees and hips bent at a 90-degree angle in a straight-back chair.
  3. Use utensils with built-up, lightweight handles, or use a "spork" - a spoon and fork in one. Use a rocker knife for cutting food.
  4. Use a non-skid mat (made out of a material called "dycem") to stabilize objects on the table.
  5. Use a plate guard or plate with a raised lip to prevent food from spilling.
  6. Use a long straw with a non-spill cup or use a plastic mug with a large handle.

Working in the Kitchen

Cleaning

Shopping

Other Useful Tips

Information Tips for Improving Communication

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:

Speech-language pathologists

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:

Tips to maintain and enhance communication

If some people have difficulty understanding you, the following strategies may help:

Nonverbal communication

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:

Non-verbal communication can help people with speech difficulties actually speak better by:

Assistive devices

Here's a sample of the assistive devices that are available to help people with ALS communicate more clearly.

High technology electronic speech enhancers, communication devices -Computers 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 devices.

Communication partners

Here are some ways in which listeners can help people who have difficulty speaking and communicating:

  1. Talk to the person only face-to-face and look at the person as he/she is speaking.
  2. Ask questions that require a "yes" or "no" answer.
  3. 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

  1. Use an intercom system or baby monitor to alert others that there is an emergency.
  2. 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.
  3. Carry a portable phone that is equipped with pre-programmed numbers.
  4. Pre-program all of your telephones so they can automatically dial the necessary emergency numbers.
  5. Consider a "Life Call" button if you spend time alone.

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