ALS Tips

Source: Cleveland Clinic Foundation

• Assistive devices
• Assistive devices and adaptive equipment
• Bathing
• Cleaning
• Communication partners
• Dressing
• Eating and Drinking
• General Guidelines
• General Hygiene and Self-Care Activities
• Information
• Tips for Improving Communication
• Nonverbal communication
• Occupational therapist
• Other Useful Tips
• Preparing for emergencies
• Shopping
• Speech-language pathologists
• Tips to maintain and enhance communication
• Working in the Kitchen

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:

• Built-up utensils
• Electric beds or mattresses
• Grab bars
• Reach devices
• Sliding boards
• Splints
• Wheelchairs

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:

• 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 surface.
• 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 grasp.

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

• bathing,
• cleaning and shopping.
• dressing,
• eating and drinking,
• general hygiene and self-care activities,
• toileting,
• 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.

Dressing

• 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 additional assistance.

Bathing

• 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 don't slip.
• Put a towel on the back of your chair and rub your back against it to dry.
• Or, use a terry cloth robe instead of a towel to dry off.

Toileting

• 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.

General 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 toothbrush.

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

• 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 opened.
• 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 manage containers.
• 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.

Cleaning

• 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.

Shopping

• Call ahead to make sure the store has the item you need.
• 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 location.
• Use telephones with oversized buttons.
• Do not keep throw rugs on the floors to avoid slipping or tripping on them.

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:

• Hoarse or strained voice
• Muffled or nasal-sounding voice
• Unclear or slurred speech

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:

• 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.

Tips to 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 intelligibility.
• 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 understood.
• Establish the topic before speaking.
• Use telegraphic speech - leave out unnecessary words to communicate the meaning of the topic.

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:

• 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 communicate.
• Alleviating the pressure to speak.
• Allowing the person to be more relaxed and come across in a more intelligible manner.

Assistive devices

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 voice fatigue
• 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 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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