How to Find Speech Therapy for Chorea

Chorea, a neurological disorder characterized by involuntary, jerky, writhing movements, often significantly impacts an individual’s speech and swallowing abilities. This can lead to dysarthria (slurred speech) and dysphagia (difficulty swallowing), making communication challenging and increasing the risk of aspiration. Finding the right speech therapy is crucial for managing these symptoms, improving quality of life, and maintaining independence. This comprehensive guide outlines a clear, actionable path to securing effective speech therapy for chorea.

Understanding the Need for Speech Therapy in Chorea

Chorea’s erratic movements can disrupt the precise coordination required for speech production and swallowing. The involuntary movements affect the muscles of the face, tongue, jaw, larynx, and diaphragm, leading to a range of communication and swallowing difficulties.

Common Speech Challenges:

• Dysarthria: Slurred, imprecise, or distorted speech due to difficulty controlling the muscles involved in articulation.

• Dysphonia: Changes in voice quality, such as hoarseness, breathiness, or a strained voice, caused by impaired vocal fold function.

• Prosodic abnormalities: Monotone speech, abnormal speech rate (too fast or too slow), or difficulty with intonation and rhythm.

• Reduced loudness: Inability to project the voice effectively.

• Difficulty initiating speech: Hesitations or blocks when trying to speak.

Common Swallowing Challenges (Dysphagia):

• Poor oral coordination: Difficulty chewing, moving food around the mouth, or forming a bolus (a chewed mass of food ready for swallowing).

• Delayed swallow reflex: Food or liquid remaining in the mouth for too long before the swallow is initiated.

• Incomplete swallow: Food or liquid residue left in the mouth or throat after swallowing, increasing the risk of aspiration.

• Incoordination of breathing and swallowing: Choking or coughing during meals, especially with liquids.

• Impulsivity/difficulty controlling intake: Taking in too much food or liquid at once, leading to difficulties.

• Weight loss and malnutrition: Due to difficulty eating safely and efficiently.

Early intervention with speech therapy is paramount. Even in the mildest cases, a speech-language pathologist (SLP) can establish baseline function, educate the individual and their family about potential interventions, and provide strategies to maintain communication and swallowing safety as the condition progresses.

Step 1: Secure a Diagnosis and Medical Referral

Before seeking speech therapy, a definitive diagnosis of chorea and its underlying cause is essential. This medical clarity will guide the selection of appropriate specialists and inform the speech therapy treatment plan.

Actionable Steps:

1. Consult Your Primary Care Physician (PCP): Your PCP is the first point of contact. Explain your symptoms thoroughly, including any involuntary movements, speech difficulties, or issues with eating and drinking.
   • Example: “Dr. Lee, I’ve noticed some uncontrollable jerky movements, especially in my arms and face. Lately, my speech has become slurred, and I’m finding myself coughing more often when I drink water. I’m concerned these might be related.”
2. Obtain a Referral to a Neurologist: Chorea is a neurological disorder, so a neurologist specializing in movement disorders is crucial for accurate diagnosis and management. Your PCP will likely provide this referral.
   • Example: Your PCP might say, “Based on your symptoms, I recommend you see a neurologist. I’ll send a referral to Dr. Chen, who specializes in movement disorders at City General Hospital.”
3. Undergo Neurological Evaluation: The neurologist will perform a comprehensive examination, review your medical history, and may order tests (e.g., MRI, genetic testing) to identify the specific type and cause of chorea.
   • Example: During your neurological appointment, be prepared to describe the onset, frequency, and severity of your involuntary movements, as well as any changes in your speech or swallowing. The neurologist might ask you to perform certain tasks, like holding your tongue out or rapidly repeating sounds, to assess motor control relevant to speech.
4. Request a Speech-Language Pathologist (SLP) Referral: Once a diagnosis is established, or even during the diagnostic process if speech and swallowing are significantly impacted, ask your neurologist for a referral to a speech-language pathologist. A neurologist specializing in movement disorders will often have connections with SLPs who have experience with chorea.
   • Example: After receiving your diagnosis, ask your neurologist, “Given my difficulties with speech and swallowing, could you recommend a speech-language pathologist who has experience working with chorea patients?”

Step 2: Finding a Qualified Speech-Language Pathologist (SLP)

Identifying an SLP with expertise in neurological conditions, specifically movement disorders like chorea, is vital for effective therapy. Not all SLPs specialize in this area.

Actionable Steps:

1. Utilize Professional Directories:
   • American Speech-Language-Hearing Association (ASHA) ProFind: If you’re in the United States, ASHA’s “ProFind” tool allows you to search for certified SLPs by location and specialization. Look for keywords like “neurology,” “movement disorders,” “dysarthria,” or “dysphagia.”
     • Example: Go to the ASHA website, navigate to the “Find a Professional” section, enter your zip code, and then filter by “Adult Neurogenic Communication Disorders” or “Swallowing Disorders (Dysphagia).”
   • Local Professional Organizations: In other countries, search for the equivalent national or regional speech-language pathology associations (e.g., Speech-Language & Audiology Canada, Royal College of Speech and Language Therapists in the UK). These organizations often have searchable directories.
     • Example: If in Canada, visit the Speech-Language & Audiology Canada (SAC) website and use their “Find a Professional” tool, filtering by neurological conditions.
2. Ask for Recommendations from Your Medical Team: Your neurologist, primary care physician, or other specialists involved in your care (e.g., occupational therapist, physical therapist) are excellent sources for referrals to SLPs they trust and collaborate with.
   • Example: “Dr. Chen, do you have any specific SLP recommendations whom your other chorea patients have found helpful?”
3. Contact Support Groups and Patient Advocacy Organizations: Organizations dedicated to specific neurological conditions (e.g., Huntington’s Disease Society of America for Huntington’s chorea) often maintain lists of recommended specialists or can connect you with other individuals who have found effective speech therapy.
   • Example: Search for local or national support groups for your specific type of chorea. Many have online forums or direct contact information where you can inquire about SLP recommendations. “Are there any speech therapists in our area that others with chorea have had positive experiences with?”
4. Inquire About Specializations and Experience: When contacting potential SLPs, directly ask about their experience with chorea or other hyperkinetic movement disorders.
   • Example: “Do you have experience working with individuals who have chorea and related speech or swallowing difficulties?” or “What is your approach to managing dysarthria in patients with involuntary movements?”
5. Consider Telehealth Options: If mobility or travel is a challenge, or if specialized SLPs are not readily available in your immediate area, inquire about telehealth services. Many SLPs now offer virtual sessions, which can be highly effective for certain aspects of speech therapy.
   • Example: “Do you offer virtual therapy sessions? My mobility is sometimes unpredictable due to my chorea, and telehealth might be more convenient.”
6. Verify Insurance Coverage: Before committing to a therapist, confirm that their services are covered by your health insurance plan.
   • Example: “Could you please confirm if you accept [Your Insurance Provider] and what the estimated out-of-pocket costs might be?”

Step 3: Initial Assessment and Goal Setting

The first few sessions with an SLP will involve a comprehensive assessment to understand the specific nature and severity of your communication and swallowing challenges. This assessment forms the foundation for a personalized treatment plan.

Actionable Steps:

1. Prepare for the Initial Evaluation:
   • List Your Concerns: Write down specific difficulties you experience with speech (e.g., “people often ask me to repeat myself,” “my voice sounds flat,” “I choke on thin liquids”) and swallowing.

   • Medication List: Bring a current list of all medications you are taking, as some medications can affect speech or swallowing.

   • Questions for the SLP: Prepare questions about their approach, expected outcomes, and how family members can support the therapy.

     • Example: “What are the typical goals for speech therapy in chorea?” or “How often will therapy sessions be, and what can I expect to do at home?”
2. Undergo Comprehensive Assessment: The SLP will evaluate various aspects of your communication and swallowing.
   • Speech Assessment: This may include assessing your voice quality, articulation, speech rate, breath support, and prosody. The SLP might ask you to read a passage, produce specific sounds, or engage in conversation. They will observe how choreic movements impact your speech.
     • Example: The SLP might ask you to say “P-T-K” repeatedly and quickly, or sustain an “Ahhh” sound to evaluate breath support and vocal quality. They will listen for slurring, irregular rhythm, or changes in loudness.
   • Swallowing Assessment (Dysphagia Evaluation): This can involve a clinical swallow assessment (observing you eat and drink various textures), and potentially instrumental assessments like a Modified Barium Swallow Study (MBSS) or a Fiberoptic Endoscopic Evaluation of Swallowing (FEES).
     • Example: During a clinical swallow assessment, the SLP might offer you water, apple sauce, and a cracker, observing for coughing, choking, or signs of residue after swallowing. For an MBSS, you’d drink barium-laced liquids and solids while X-rays track their movement through your throat.
3. Collaborate on Goal Setting: Based on the assessment, the SLP will discuss findings and propose therapy goals. These goals should be specific, measurable, achievable, relevant, and time-bound (SMART goals).
   • Example: Instead of “Speak better,” a SMART goal might be: “I will improve speech intelligibility by 25% in conversational speech over 8 weeks, as measured by listener comprehension ratings.” For swallowing: “I will safely consume thin liquids without coughing or choking in 80% of attempts within 6 weeks, using compensatory strategies taught by the SLP.”
4. Discuss Frequency and Duration of Therapy: The SLP will recommend a therapy schedule based on your needs and goals.
   • Example: “We’ll start with two 45-minute sessions per week for the first month, then re-evaluate based on your progress.”

Step 4: Engaging in Speech Therapy Techniques and Strategies

Speech therapy for chorea is highly individualized and focuses on compensatory strategies and rehabilitative exercises. The aim is to maximize existing abilities, teach new ways to communicate and swallow safely, and educate both the individual and their communication partners.

Actionable Techniques and Strategies:

For Speech Intelligibility (Dysarthria Management):

1. Rate Control: Slowing down speech can significantly improve clarity, as it allows more time for articulatory movements to be completed despite involuntary movements.
   • Practical Example:
     • Pacing boards: Use a physical board or a digital app where you tap a space for each syllable or word to maintain a slower, more deliberate pace.

     • Metronome: Practice speaking to the rhythm of a metronome set at a slower beat.

     • Short phrases: Break down long sentences into shorter, more manageable phrases. “Instead of saying ‘I would like to go to the grocery store to pick up some milk and bread,’ try ‘I would like to go to the grocery store.’ [pause] ‘To pick up some milk.’ [pause] ‘And bread.'”

2. Over-articulation/Exaggerated Movements: Deliberately over-enunciating words can enhance clarity.

   • Practical Example: Practice speaking with exaggerated mouth movements in front of a mirror. For instance, when saying “potato,” really emphasize the lip closure for “p,” the tongue tip for “t,” and the rounded lips for “o.”
3. Breath Support and Phonation Exercises: Improving respiratory control can lead to louder, more stable speech.
   • Practical Example:
     • Sustained ‘Ahhh’: Take a deep breath and sustain the “Ahhh” sound for as long as possible, maintaining a steady volume.

     • Expiratory Muscle Strength Training (EMST): Use a device that provides resistance during exhalation to strengthen respiratory muscles. Your SLP will guide you on appropriate resistance levels.

     • Pursed-Lip Breathing: Inhale through your nose, then exhale slowly through pursed lips, making the exhalation twice as long as the inhalation. This helps control airflow.

4. Loudness/Volume Control (e.g., LSVT LOUD): For individuals with reduced vocal loudness, specific programs like Lee Silverman Voice Treatment (LSVT LOUD) can be highly effective. This intensive program focuses on increasing vocal intensity.

   • Practical Example: LSVT LOUD involves daily exercises where you practice saying words and phrases with a consistent, loud voice. The core principle is “Think Loud!”
5. Communication Partner Strategies: Educating family and friends on how to facilitate communication is crucial.
   • Practical Example: Advise listeners to maintain eye contact, minimize background noise during conversations, be patient, and avoid interrupting. Encourage them to ask “yes/no” or multiple-choice questions if comprehension is difficult, rather than open-ended questions. “Are you hungry?” instead of “What would you like to eat?”
6. Augmentative and Alternative Communication (AAC): As chorea progresses, or for individuals with severe dysarthria, AAC devices can provide alternative ways to communicate.
   • Practical Example:
     • Alphabet boards/picture boards: Simple, low-tech tools where you point to letters or pictures to convey messages.

     • Speech-generating devices (SGDs): High-tech devices that “speak” messages typed by the user. Some advanced systems use eye-tracking technology if hand movements are too impaired. Your SLP can help you explore and trial different AAC options.

For Swallowing Safety (Dysphagia Management):

1. Diet Modifications: Changing the consistency of foods and liquids can make swallowing safer.

   • Practical Example:
     • Thickening liquids: Using commercial thickeners to achieve nectar, honey, or pudding consistency can slow down liquids and make them easier to control.

     • Soft/Pureed foods: Avoiding dry, crumbly, or tough foods in favor of soft, moist, or pureed options (e.g., mashed potatoes, yogurt, well-cooked vegetables).

     • Adding sauces/gravies: Making foods moister with gravy, sauce, or mayonnaise can aid in bolus formation and transit.

2. Compensatory Strategies/Postural Techniques: Adjusting body or head position during swallowing can redirect the food or liquid to a safer path.

   • Practical Example:
     • Chin tuck: Tucking your chin towards your chest before and during the swallow can narrow the airway entrance, reducing the risk of aspiration.

     • Head turn: Turning your head to one side can close off one side of the pharynx, directing food down the stronger side. Your SLP will determine if this is appropriate for you.

     • Multiple swallows: Taking several small swallows for each bite or sip to clear residue.

3. Swallowing Maneuvers: Specific techniques taught by the SLP to improve swallow strength and efficiency.

   • Practical Example:
     • Effortful swallow: Swallowing as hard as you can, as if swallowing a large pill.

     • Supra-glottic swallow: Taking a deep breath, holding it, swallowing, and then immediately coughing to clear any material that might have entered the airway, followed by another swallow.

4. Oral Motor Exercises: Exercises to improve strength and coordination of the tongue, lips, and jaw.

   • Practical Example:
     • Tongue exercises: Pushing your tongue against a tongue depressor, moving it side-to-side, or lifting it to the roof of your mouth.

     • Lip exercises: Practicing lip closure (e.g., holding air in your cheeks) or lip puckering.

5. Expiratory Muscle Strength Training (EMST): As mentioned for speech, EMST also strengthens cough effectiveness, which is crucial for clearing aspirated material.

   • Practical Example: Regular practice with an EMST device to improve cough strength.
6. Mealtime Environment Modifications: Creating a calm, distraction-free environment for eating.
   • Practical Example: Turn off the TV, minimize conversation, and ensure you are seated upright with good head support during meals. Take small bites and sips, and pace yourself.
7. Oral Hygiene: Meticulous oral hygiene is critical to prevent aspiration pneumonia, as residual food and bacteria can be inhaled.
   • Practical Example: Brush your teeth and clean your mouth thoroughly after every meal and before bed.

Step 5: Ongoing Management and Adaptation

Chorea can be progressive, meaning symptoms may change over time. Effective speech therapy involves ongoing assessment, adaptation of strategies, and continuous support.

Actionable Steps:

1. Regular Reassessment: Your SLP will regularly reassess your speech and swallowing abilities to track changes and adjust the therapy plan accordingly.
   • Example: Every few months, your SLP might repeat parts of your initial assessment to measure progress or identify new challenges.
2. Adaptation of Strategies: As symptoms evolve, the strategies and exercises you use will need to be modified.
   • Example: If your speech clarity begins to decline despite current strategies, your SLP might introduce AAC options earlier than initially planned. If swallowing difficulties worsen, further diet modifications or alternative feeding methods may be discussed.
3. Caregiver and Family Training: Empowering caregivers and family members with the knowledge and skills to support communication and safe eating is essential.
   • Example: Your SLP might hold dedicated sessions with your family to demonstrate communication strategies, safe feeding techniques, and signs of aspiration (e.g., persistent coughing, wet voice after swallowing).
4. Interdisciplinary Collaboration: Speech therapy is most effective when integrated into a broader care plan. Your SLP should communicate and collaborate with your neurologist, occupational therapist, physical therapist, dietitian, and other healthcare providers.
   • Example: Your SLP might discuss your swallowing status with your dietitian to ensure adequate nutrition and hydration, or with your physical therapist to coordinate breathing exercises.
5. Emotional and Psychological Support: Living with chorea and its impact on communication can be emotionally challenging. Your SLP can provide emotional support and, if needed, refer you to mental health professionals.
   • Example: If you express feelings of frustration or isolation due to communication difficulties, your SLP might suggest connecting with a support group or recommend a psychologist.

Conclusion

Finding effective speech therapy for chorea is a proactive journey that requires a systematic approach. By securing a clear diagnosis, diligently searching for a qualified speech-language pathologist, actively engaging in the assessment and goal-setting process, and committing to the recommended therapy techniques, individuals with chorea can significantly improve their communication and swallowing abilities. This empowers them to maintain greater independence, enhance their quality of life, and stay connected with the world around them. Remember that speech therapy is a dynamic process; consistent effort, collaboration with your healthcare team, and a willingness to adapt are key to navigating the challenges of chorea and optimizing your communicative and swallowing function.