Speech Changes
 

My speech sounds different

Many persons with ALS notice changes to speech. This is caused by nerve degeneration, specifically to the nerves responsible for speech. Dysarthria is the motor speech disorder found in ALS. Patients and their families often describe speech as “slurred” or “slow,” while others will say “nasal” or “weak.”

What you should know?

  • For a diagnosis of ALS, upper and lower motor neurons must be involved.

    • Upper motor neurons start in the motor cortex of the brain and end in the brainstem.

      • Symptoms include weakness, speech changes, and spasticity.

    • Lower motor neurons start in the brainstem and spinal column and end at the muscles.

      • Symptoms include weakness, decreased reflexes, cramps, twitches, and muscle wasting.

  • If you start with speech and swallow symptoms, your onset type is bulbar.

  • Speech clarity will change over time

    • You may first notice changes to your rate of speech.

    • Over time, your speech may sound slurred, nasal, and weak.

  • Some PALS lose the ability to speak.

    • Keeping up with your SLP is very important; options for different ways to communicate
      should be discussed.

    • Starting the discussion early can give you ways to preserve your voice.

What does a SLP do?

  • Examines your speech, voice, and rate of speech.

  • Asks you to read a passage, say a sound like “ah” for several seconds, and/or read
    specific words or sentences.

  • Keeps track of the progression of your speech changes.

What can you do?

  • Early stage (no speech change or minimal changes)

    • Voice Bank

    • Message Bank

    • Story Bank

  • Moderate stage (speech is slower and/or slurred, but people can understand you.)

    • Face-to-face communication is best.

    • Monitor your fatigue: if you are tired, try avoiding long conversations.

    • Avoid noisy environments; it can be hard to speak over the noise.

    • Over-exaggerate your speech; say each word clearly.

    • If your friends and family do not understand something you say, encourage them to repeat back what they heard instead of saying, “What?”

    • If your main speech problem is a quiet voice, talk to your SLP about a voice amplification system to make your voice sound louder.

  • Late stage (when speech is not understood)

    • Consult with a SLP about Augmentative and Alternative Communication options. This may include:

      • No-tech

      • Low-tech

      • High-tech

Face-to Face Communication is Best.
Difficulty Swallowing
 

Trouble swallowing?

Many persons with ALS notice changes to swallow function. Dysphagia is the swallow disorder found in ALS. As swallowing changes, it becomes important to make adjustments to the ways you swallow and the types of foods and liquids you eat and drink.

What you should know?

  • Early stage changes affecting swallowing:

    • Difficulty moving foods around in your mouth.

    • Difficulty holding foods in your mouth.

    • Coughing when you drink liquids like water.

    • Pieces of foods remaining in your mouth after you swallow.

  • Later stage changes affecting swallowing:

    • Trouble handling your saliva

    • Choking on foods and liquids

    • Weight loss

    • Extended meal times

    • Fatigue from eating

What does a SLP do?

  • Tests your swallow function. You may need a swallow evaluation to see how you swallow foods and liquids.

  • Keeps track of the progression of your swallow changes and discusses your weight loss with the dietitian.

  • Provides safe swallow guidelines specific to you.

  • Discusses feeding tube timing along with neurologist, dietitian, and respiratory therapist.

What can you do?

  • Discuss options for easy-to-swallow foods with your SLP and dietitian.

    • Cooked veggies are easier to chew and swallow than raw veggies.

    • Foods that hold together may be easier to swallow
      (for example, mashed potatoes with gravy or green bean casserole).

    • Smaller bites and sips are better.

    • Prepare foods with sauces, gravies, and condiments
      (such as mustard, ketchup, and salad dressings).

    • Soft and moist foods are easier to chew and swallow.

  • Discuss high-calorie foods with dietitian

  • Monitor your weight on a weekly basis

  • Brush your teeth and keep your mouth clean after meals.

Considering a Feeding Tube
 

Timing of Feeding Tube Placement

Many persons with ALS notice changes to swallow function and/or weight loss. Dysphagia is the swallow disorder found in ALS. As swallowing changes, it becomes important to understand the reasons why your doctor, speech-language pathologist (SLP), and dietitian may endorse a feeding tube.

What you should know?

  • Many factors influence the need for a feeding tube. The timing is key. When should you consider a feeding tube?:

    • When you cannot eat enough food to keep your weight steady

    • When you cannot drink liquids safely

    • When ALS affects the muscles involved in eating: chewing,
      moving the food in your mouth, and swallowing

    • When your appetite decreases

    • When noticeable weight loss occurs

    • When you cough and choke on foods and liquids

    • Before lung capacity (FVC= forced vital capacity) falls below 50% of
      predicted, to decrease complications related to sedation

What does a SLP do?

  • Tests your swallow function. You may need a swallow evaluation to see how
    you swallow foods and liquids.

  • Keeps track of the progression of your swallow changes and discusses
    your weight loss with the dietitian.

  • Provides safe swallow guidelines, and discusses the need for a feeding tube.

What can you do?

  • Discuss options related to feeding tubes early with your care team. This will allow you to be prepared with questions.

  • Consider the advantages and possible reasons for not getting a feeding tube.

    • Advantages:

      • Stabilizes weight

      • Increases quality of life

      • It is a safer way to take medication

      • Decreases risk of choking, chewing, or swallowing problems

      • Reduces the length of meal times

      • Ensures a balanced diet with adequate hydration

      • You can still eat and drink the foods and liquids that are safely swallowed

    • Possible reason for not getting a feeding tube1:

      • Feeding tube placement is a surgical procedure

      • Slight risk of infection

      • Does not prevent progression of ALS

Keeping up With Communication
 

Many people with ALS will have difficulty talking over time. Losing the ability to speak is frustrating and overwhelming. A speech-language pathologist (SLP) can help you to continue to communicate with augmentative and alternative communication (AAC) options.

What you should know?

  • Speech clarity can change over time

    • You may first notice changes to your rate of speech.

    • Then, speech may sound slurred, nasal, and weak.

    • When changes to your speech occur, speak to your SLP about AAC options.

  • Types of AAC:

    • No-tech: writing, gestures, sign language.

    • Low-tech: communication board with pictures or letters, voice amplification.

    • High-tech: speech-making devices that have eye gaze or text-to-speech
      abilities.

What does a SLP do?

  • Completes the assessment and forms for insurance. This process can take 8-12 weeks.

  • The AAC evaluation must happen before entering a skilled nursing facility, home health, or hospice.

  • Helps you find ways to text and email if you have hand weakness.

  • Helps to find you the best system that will work for you.

  • Develops a primary communication system and a back-up system.

  • Training to you and your family.

What can you do?

  • Start the AAC conversation with your SLP early.

  • Voice or message bank before you need the AAC system.

Ways to Bank Your Voice
 

What you should know…

  • Changes to speech can occur because of ALS.

  • “Banking” your voice can preserve it at its best quality.

    • Banking also means saving your voice as an audio recording.

    • Anyone and everyone should consider message, voice, and story banking.

    • Your SLP can help provide guidance.

    • What you should do…

    • There are different ways to “bank” your voice.  Message, voice, and story banking are three ways.

  • Message Banking:
    • This simply involves recording meaningful messages.

    • These messages may include your personal communication style.

    • You can record greetings, discussion starters, and your wants and needs.  

    • You may record using applications on a smart phone or a digital recorder.

    • Remember to save each file based on what you record. Saving the files as MP3 makes it easier to transfer to a communication device later.

  • Voice Banking:

    • You produce a custom-made, synthesized voice based on recordings of your voice.

    • This requires special software.

    • You will record a large number of sentences chosen by someone else1.

    • Visit www.modeltalker.org for specific instructions. There is a $100 fee.

    • Visit www.vocalid.co for instructions on how you can blend your voice to a donated voice. There is a $1,499 fee.

  • Story Banking:

    • You can record stories about your life.

    • This is a special way to store your life and family history.

Oral Health
 

For many persons with ALS keeping the mouth clean becomes more difficult over time. Brushing your teeth may be harder due to weakness. You may need help from family, friends, or health care workers. You may also feel that you have more saliva. This saliva is due to weakness in the mouth and face.

What you should know…

  • Regular oral care:

    • Keeps your mouth more comfortable and less dry

    • Helps with bad breath

    • Keeps your mouth healthy

    • Helps to reduce thick saliva

 

  • Difficulty with saliva:

    • Some people have a lot of saliva that can cause drooling or choking.

    • Some people have thick saliva; this can be uncomfortable and hard to swallow.

 

  • Some people have  saliva:

    • Keep your lips moist using lip balm. This will keep your lips healthy.

    • A suction machine can be used to help reduce saliva in the mouth. Only use as needed.

    • Your doctor may have a medicine that can reduce your saliva.

What you can do…

  • Keep it clean

    • Brush your teeth and mouth at least twice daily and after meals.

    • Floss or use a Water Pik®, if you are safe to do so.

    • Keep regular dental appointments. You may need help from your dentist, for example, ask your dentists not to tilt the exam chair too far back.

    • If you can safely drink water, rinse your mouth after meals. This s a good way to remove food left over from your meal.

 

  • Manage the saliva

    • Avoid dehydration by drinking water, if you are safe to do so.

    • Suck on hard candy, if you are safe to do so. This can help make saliva and encourage swallowing.

    • Stay away from drinks with caffeine in them (soda pop, coffee). These drinks can cause dehydration. 

 

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