Let’s talk about Augmentative and Alternative Communication and Parkinson’s disease

Many people with Parkinson’s disease (PD) find that their speech and communication skills are impacted as their disease progresses.  Low voice volume, imprecise speech, lack of inflection, rapid speech and other issues can become problems for some people living with PD. There are steps you can take early on that will help strengthen and preserve your voice, so it is important to educate yourself.

Discover free resources to learn more about Parkinson’s and how it affects your voice

An informative APDA booklet entitled Make Your Voice Heard! Healthy Communication and Parkinson’s Disease can be downloaded from our website for free or ordered by mail at no cost to you. This book delves into many of the speech and communication concerns of people with PD. We also had a great conversation about PD and communication with a certified speech language pathologist (SLP) that you may find useful.

Augmentative & Alternative Communication (AAC) for Parkinson’s

PD affects everyone differently, and for some, speech and communication issues can become much more profound than the issues mentioned above, so much so, that as the disease progresses the person with PD is not able to make their needs and thoughts understood verbally. This can clearly have a major impact on quality of life, not only for the person with PD but for care partners, friends and family. If this occurs, there is hope and help available for you. Augmentative and Alternative Communication (AAC) is a set of methods and technologies that are used to supplement or replace speech for those whose abilities to communicate are impaired. Specially-trained occupational therapists can help people with PD implement effective communication strategies to improve quality of life.

Partnering with an Occupational Therapist

One such occupational therapist is Holly Cohen, OTR/L, ATP, SCEM, CDRS, who works at Rusk Rehabilitation, NYU Langone Medical Center in New York City. She is an expert in AAC and works frequently with people with PD.

Recently, I was able to ask Ms. Cohen about her work.

Our Conversation with Holly Cohen

Q: What barriers to communication can occur because of Parkinson’s disease?

A: There are many communication issues that can occur because of PD.  Commonly, I see individuals with low voice volume or difficulty projecting their voice. We also see individuals whose voice quality varies throughout the day, for example, the voice is more impaired when their dose of medication is due. Some individuals are unable to speak at all or are so difficult to understand that they stop trying. I hear from the majority of the individuals with whom I work that they no longer attempt to speak because they feel as if they cannot be understood anyway.

Q: What are some types of AAC devices that are available?

A: The range is wide, varying from low- to high-tech options. A low-tech option can include an alphabet board that people use to spell out the words that they want to say, or a whiteboard, notebook, or index cards to write the words.  High-tech options can include specific apps on an iPad or the text-to-speech features on a smart phone. These applications can be text based, picture based, or text and picture based. Two of my favorites are proloquo4text and predictable.  There are also devices that can be accessed in novel ways for those who have difficulty with physically utilizing what is available for an iPad or smart phone. The use of an AAC device is compensatory, that is, the device is compensating for the communication impairment that the individual is experiencing.

Q: When should a person with PD who has a communication barrier consider using an AAC device?

A: They should consider a device when they cannot be understood, cannot make their needs known, feel isolated because of their speech difficulties, or overall cannot participate in communication with familiar and unfamiliar listeners.  If an individual feels that their challenges with speaking have impaired their ability to participate in medical decisions, talk to their family members or friends, or overall negatively affect their quality of life, then a referral to an occupational therapist or speech language pathologist who specializes in AAC needs to be considered.  When we work with a person with PD, we are doing it in conjunction with a speech language pathologist to make sure that all of their communication needs are being met.

Q: How does a person know which is the best AAC device for his or her problem?

A: Deciding on the best AAC device is a team approach. The individual should consult their doctor and SLP for options. They also should have a comprehensive evaluation with an occupational therapist who specializes in AAC.  During this evaluation they will be able to try out various devices to determine which device works best for their individual needs. They will also receive education on the pros and cons of the available options.  It is highly recommended that they include their family and/or caregivers as part of the team so that everyone understands the potential benefits and pitfalls of each option.

Q: Do you advise someone who has an AAC device to continue speech therapy?

A: This is a great question for the doctor and the SLP who are working with the individual.  The SLP can be instrumental in making recommendations on incorporating the AAC device into daily communication.  In addition, they can make recommendations on energy conservation and ways to continue to use the speech that is preserved.

Tips and Takeaways

  • For some people, PD causes such significant problems with speech that it can be difficult for the person with PD to be understood. This can substantially affect quality of life.
  • When this occurs, there are Augmentative and Alternative Communication (AAC) devices that can be used to help such a person express themselves.
  • Occupational therapists with training in AAC can evaluate the person with PD, recommend devices and explain the pros and cons of each option.
  • It is important to talk to your doctor if speech and communication issues are becoming problematic. If addressed early on, there are steps you can take to help strengthen your voice and delay the progression of speech issues.

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