Let’s talk about talking with Parkinson’s disease

Communication issues (such as soft voice, imprecise speech, lack of inflection, and others) can become a problem for people living with Parkinson’s disease (PD). Recently APDA published a new booklet entitled Make Your Voice Heard! Healthy Communication and Parkinson’s Disease which can be downloaded from our website for free or ordered by mail at no cost to you. Lisa Sommers, MA, CCC-SLP Clinic Director and Clinical Assistant Professor, in the Department of Communication Disorders at University of Massachusetts Amherst, is a Speech-Language Pathologist (SLP) and an expert in speech and communication issues for people with PD and was one of the authors of this extremely informative publication. She is also an advisor to our APDA Massachusetts Chapter. Recently, I was able to talk with Ms. Sommers about the value of speech therapy for people with PD at all stages of the condition and what someone with PD might expect from a visit with an SLP.

1. What are the common reasons that someone with PD may see a Speech-Language Therapist for an evaluation?

Often people with PD are referred to an SLP by their physician when they begin to have difficulty communicating or swallowing. Unfortunately, by the time people receive an evaluation from a SLP they have likely been experiencing subtle symptoms for quite a while. People with PD as well as their family members and friends often start being aware of communication issues when the person with PD’s voice becomes too soft to communicate effectively. The communication symptoms begin very gradually, so they may first experience difficulty projecting their voice in a noisy environment, or when ordering at a drive-thru window. Over time they begin to experience more and more issues being heard and understood by others. Some people may gradually develop some imprecise/slurred speech and/or a hoarse or breathy voice quality. Communication can also be negatively impacted by changes in nonverbal communication, such as reduced facial expression and speaking with a monotone inflection.

Swallowing issues are often not detected until the person with PD is coughing significantly during meals or struggling to chew and swallow food safely and efficiently. The changes in swallowing can also happen so gradually that people assume symptoms are just related to aging or some other external factor, when in reality, these changes are directly related to the sensory and motor issues associated with PD.

One additional area that is often ignored is adverse changes in someone’s cognition, which can also play a role in communication issues. Changes in attention, executive functions, and memory can have a profound impact on a person’s independence and safety, and SLPs evaluate and treat these areas as well. Often a person with PD will be referred for speech, voice, and/or swallowing issues, and the SLP will also observe changes in cognition which can impact the person’s ability to fully engage and learn the exercises and techniques being taught in therapy.

2. How do you know it’s time to see a speech-language pathologist for an evaluation? What signs and symptoms should people with PD and their care partners look out for?

People should be aware that changes can occur in multiple areas of the body that contribute to communication. People may find that they are being asked to repeat themselves frequently. They may find that their voice is hoarse or breathy, or that they are clearing their throat frequently to “turn on” their voice. They may feel that they are running out of air and need to speak in shorter sentences. They may be misunderstood by others because of the reduced clarity of their speech or their soft voice. People may give them feedback that they appear bored or upset due to the use of a monotone voice and reduced facial expression. These changes often occur gradually and those close to the person with PD may not notice. It is good to be aware of how well strangers understand the person with PD in order to gauge whether or not there are changes in verbal and nonverbal communication.  If you’re experiencing any of these symptoms on a somewhat regular basis, it is time to see an SLP. You do not need to (and should not) wait for symptoms to be severe in order to seek professional help. Early intervention can make a positive difference.

In terms of swallowing, a frequent early sign of change is how long it takes someone to finish a meal (this is a separate issue from tremors impacting use of utensils). People often take longer to chew and swallow their food. They report that they are the last ones at the table and sometimes begin consuming less food and losing weight from the combined effects of self-feeding and swallowing changes. It is important to be aware that frequent coughing associated with meals is an indication of a swallowing issue. Another sign of a possible swallowing problem is a copiously runny nose when eating or drinking. If any of these symptoms becomes apparent, it makes sense to be evaluated by an SLP.

3. For our readers who may be curious about what to expect during a speech therapy session – can you describe a typical speech therapy session for PD?

A session can vary quite a bit from patient to patient, as we tailor treatment to the person’s specific issues. SLP therapy sessions are only provided after a detailed evaluation is completed and a treatment plan is developed. It is best to see an SLP who has experience with PD and uses evidence-based techniques when developing an individualized plan for the person with PD.

One of the gold standard treatments for communication impairments associated with PD is called LSVT LOUD®. LSVT LOUD® has strong evidence associated with it, and it requires that the SLP be specifically trained and LSVT-certified. To preserve treatment fidelity and ensure best outcomes, the sessions must be four times per week for four weeks (some patients may need a longer duration), with each session lasting one hour. The initial part of the session involves specific voice exercises focusing on loudness and pitch range. The last half of the session focuses on functional communication activities that carry over this normalized volume and voice range into everyday speech in everyday situations.

There is another evidence-based approach also utilized to treat the soft voice associated with PD and this is called the SpeechVive™. This device is worn in the ear to introduce babble noise which causes the person with PD to increase their speaking volume automatically. This device also requires that the SLP be specifically trained for its use. The sessions involve an initial calibration of the device with subsequent follow-ups scheduled.

Swallowing therapy sessions usually last 45-60 minutes and involve exercises tailored to the specific parts of your mouth and throat that are causing the swallowing problem. This kind of specific diagnosis often requires an assessment of swallowing function using specialized testing equipment before a treatment plan can be developed. The most common type of assessment is called a Modified Barium Swallow Study, in which the patient is given different consistencies of barium to drink and moving x-rays are taken that follow the barium as it is swallowed. This x-ray video pinpoints the areas of the swallow that are problematic and helps the SLP determine the correct exercises to address the problem. Sessions may also involve practicing compensatory swallowing strategies with various types of foods in order to maximize safety and efficiency while chewing, drinking, and swallowing.

Cognitive-linguistic treatment sessions focus upon specific aspects of everyday life for which the person with PD may be encountering frustration or failure due to their cognitive issues. Usually family members and support people are included in these sessions and various compensatory strategies are trialed. Some people with PD use technology well and can use a variety of assistive technologies to compensate for memory or executive function challenges, while others need low tech solutions. SLPs also train and educate support people to assist or modify an activity to maximize independence while ensuring activities of daily living are completed safely and effectively. These sessions are often 2-3 times per week and may taper in frequency as various techniques are trialed and implemented.

4. Are there reasons that someone with mild PD may benefit from a speech therapy evaluation?

Yes! As with physical therapy, there are many things to teach a person with even mild symptoms. A baseline evaluation is an excellent idea, as many people are already exhibiting changes – of which they might not even be aware – in their volume, pitch range, voice inflections, and facial expression. Early treatment and education about the correct exercises can be very effective, particularly for younger people with PD who are not yet ready to reveal their diagnosis to others (especially in the workplace). The subtle communication impairments can significantly impact work relationships and effective communication and the perception of competence. People often tell me that they wish they would have known about the value of speech-language pathology services earlier. They are often so focused on their gait or tremor that they do not realize the impact of their communication impairment on their work and home life. Even subtle changes can signal challenges ahead and having a baseline evaluation and a treatment plan that can be amended over time is empowering and effective.

Swallowing issues can also start very subtly and should be addressed as soon as possible. When swallowing is impaired more severely, it can result in significant health implications, such as aspirationnd/or the decreased ability to take in enough calories in a safe way. There is ample evidence that swallowing exercises can be effective for people with PD, but obviously, a mild problem is much easier and faster to treat than a more severe one!

5. It is common to see singing and choir programs for people with PD. What are your thoughts on this type of activity?

There is still much to learn about how singing impacts the communication of people with PD. At this point in time, when asked, I tell people that we don’t have enough evidence to say that singing can be used as a substitute for skilled speech-language pathology services. Given that there are such excellent, evidence-based treatments that specifically target the communication problems that people with PD experience, I advise people to pursue SLP services early and as often as needed, and view singing/choir experiences as a wonderful supplement to what they learn in therapy. Occasionally, people with PD can have voice difficulties that affect how they should use their voice during singing, so it is best to consult the expert first. This is much the same as seeing a physician and physical therapist before you launch into a new exercise program. Singing is a wonderful way for people with PD to use their new voices that have been rehabilitated in therapy. It also promotes social engagement and offers opportunities to communicate and be cognitively stimulated. It is a wonderful mood booster to combat the depression and apathy that can sometimes occur with PD.

6. If a person with PD finds his/herself in a loud room trying to have a conversation, what are some tips to keep in mind?

Many people have difficulty conversing in noisy rooms, and it can be so frustrating that people start avoiding social situations or don’t attempt to engage with others. In these situations, it is particularly important to be aware of your speaking volume. In addition to this, try these simple things:

• Make sure that you have the visual attention of your listener so that they know you are trying to communicate with them.
• Stand closer to the person whom you are talking to or ask if you can step out to a quieter area.
• Make sure that you are standing in good lighting; this will enable the other person to see your lips and expressions.
• Check in with your listener, “Can you hear me okay?”
• Be clear about the topic of conversation. If your listener knows the topic, it will help them predict what words you might be apt to use.
• If you are misunderstood, try to rephrase your message using alternate words and shorter sentences.
• Use gestures and any other nonverbal communication to supplement your words.

Tips and Takeaways

• Communication difficulty can be a very impactful problem in PD, but can be addressed and improved with the help of a knowledgeable Speech-Language Pathologist.
• Subtle communication problems can start early in the disease course and it may be helpful to consult with an SLP even with mild PD.
• Swallowing difficulties can also start subtly. Slow eating, weight loss, and coughing with eating may all be signs that a person’s swallowing should be evaluated. Swallowing therapy can help improve swallow function and safety.
• SLPs also perform cognitive-linguistic therapy utilizing both low and high tech solutions to maximize cognitive functioning.
• Check out our new booklet entitled Make Your Voice Heard! Healthy Communication and Parkinson’s Disease, co-authored by SLP Lisa Sommers for much more information on this important topic.
• As always, if any symptom is interfering with the quality of your daily life, be sure to discuss it with your doctor as it may be something that can be improved with treatment or modifications. If your doctor doesn’t specifically bring up seeing an SLP, do not hesitate to ask him/her about it.