Have you ever been told to “speak up” when you felt like you were already speaking at a normal volume? For people with Parkinson’s, this isn’t just an occasional comment, it’s a frustrating daily reality. This points to a challenge that’s harder to notice than the more visible motor symptoms of Parkinson’s. It’s called a “sensory deficit,” and it’s where perception doesn’t always match reality.
What are Sensory Deficits in Parkinson’s?
Sensory deficits in Parkinson’s refer to impairments in how the brain processes and interprets sensory information. These changes are often subtle and less visible than motor symptoms like tremors or stiffness, but they can significantly affect daily life. People with Parkinson’s may have difficulty sensing their body’s position (proprioception), detecting movement (kinesthesia), or recognizing how much effort they’re putting into everyday actions. For example, when walking, many people with Parkinson’s feel as though their gait is normal, but in reality, they’re taking small steps or shuffling their feet.
One of the most noticeable effects of this impaired sensory feedback is a reduced awareness of soft speech. Research shows that up to 90% of individuals with Parkinson’s develop speech difficulties, often speaking more softly than they realize.
To them, they feel their voice sounds normal. They may even insist the problem lies with the listener’s hearing. There is a disconnect between how loudly they think they’re speaking and how soft they actually sound.
Even when asked to repeat themselves or speak up, it can be difficult to realize that their speech is too soft or unclear. This mismatch between perception and reality is a clear example of how sensory deficits affect communication in those with Parkinson’s.
Over time, if the person with Parkinson’s continues to use soft speech and the muscles aren’t actively used to their full capacity, they can weaken. Since these same muscles are also responsible for chewing and swallowing, untreated speech difficulties can lead to serious, life-threatening swallowing complications.
Improving Communication Through Consistent Vocal Exercise and INTENT
At Parkinson Voice Project, the SPEAK OUT!® Therapy Program strengthens the speech and swallowing mechanism with a combination of individual and group speech therapy, daily home practice, and teaching individuals with Parkinson’s how to speak with INTENT.
By learning to be deliberate and purposeful when they speak and swallow, people with Parkinson’s override the sensory deficit and come to understand that how their speech FEELS to them is different from how it SOUNDS to others. SPEAK OUT! Therapy helps build awareness so people with Parkinson’s can recognize the amount of effort they need to put forth when they’re speaking. With diligent practice, they learn to accept that what feels too loud actually sounds normal.
This process takes time, though. It is not unusual for it to take six months to two years for someone with Parkinson’s to become comfortable with putting forth the amount of effort necessary to be adequately heard and understood. The SPEAK OUT! Therapy Program was developed to address the sensory deficit in Parkinson’s. This highly effective program is outlined using the “Circle of INTENT“, which consists of seven components:
- SPEAK OUT! Evaluation by a Certified SPEAK OUT! Provider
- Digital SPEAK OUT! Therapy Booklet and Flashcards (provided by Parkinson Voice Project for no charge to any person with Parkinson’s enrolled in the program)
- Patient and Family Education using the What is Parkinson’s? Video
- Individual SPEAK OUT! Therapy
- Weekly SPEAK OUT! Therapy Groups
- SPEAK OUT! Refreshers every 6-12 months
- Daily SPEAK OUT! Home Practice
Through structured practice and continuous encouragement and support, SPEAK OUT! Therapy empowers individuals to REGAIN and RETAIN their ability to speak and swallow, using INTENT as the foundation.
The Important Role of the Care Partner and Family
SPEAK OUT! Therapy is most effective when paired with consistent support at home. Care Partners and adult children (even grandchildren) play a key role in reinforcing the use of INTENT and helping individuals with Parkinson’s stay motivated and confident.
Here are ways Care Partners and family members can support the process:
- Attend the SPEAK OUT! Evaluation and Therapy Sessions: Parkinson’s speech and swallowing issues are complex to treat. It’s important that care partners and family understand the sensory deficit, assist with home practice, and provide appropriate support.
- Set a Daily Routine: Establish a regular time each day to complete the SPEAK OUT! Therapy exercises using the SPEAK OUT! Therapy Booklet, the online SPEAK OUT! Home Practice Sessions, or the digital flashcards.
- Practice Together: Spend 15 minutes each day using the digital SPEAK OUT! Therapy Flashcards with a family member or friend. Hard copies of the flashcards can be purchased from the SPEAK OUT!® Therapy Store.
- Address Sensory Misperception: If the person you’re supporting says, “I feel like I’m yelling,” reassure them by saying: “I know it feels loud to you, but your voice really sounds good when you speak with INTENT.” Use audio recordings and also record and listen to voicemail messages so the person with Parkinson’s can hear how their voice really sounds.
- Celebrate Successes: Offer positive feedback when they produce a voice that is easy to hear and understand. Try phrases like: “I like that voice” or ”That’s the voice I fell in love with,” or “Your speech sounded great tonight at the party. You didn’t have to repeat yourself even once.”
- Encourage Real-World Practice: Suggest speaking with strangers to become comfortable with speaking with INTENT. Greet store clerks or restaurant servers with confidence (like at a job interview) and pay attention to how others respond. Call businesses and ask, “How late are you open?” using an intentional voice, and notice whether or not a repetition was needed. This extra practice builds confidence and reinforces the need to put forth more effort when speaking.
Moving Forward with INTENT
Sensory deficits can quietly erode communication and compromise safety for people with Parkinson’s. If someone doesn’t recognize how soft their voice is, they won’t seek out treatment. The speech and swallowing muscles will become weak. This can lead to frustration, isolation, and serious swallowing complications. But by recognizing the soft speech and actively participating in SPEAK OUT! Therapy, individuals can strengthen their voices, improve swallowing, and rebuild confidence. With consistent support of care partners and families, the journey to a stronger, clearer voice, powered by INTENT, improves connections within the community and enhances family gatherings and social interactions.
