Haims: Parkinson’s and communication
If you are caring for a loved one with Parkinson’s disease, you are probably familiar with two of the hallmark physical symptoms: tremors and impaired gait.
However, another issue that can be disruptive is that the disease frequently affects a person’s ability to communicate. The disease can often weaken muscles in the mouth, lips, tongue, and diaphragm, therefore causing difficulty in communication between caregivers and your loved one with Parkinson’s.
Communication is important to both emotional and physical intimacy.
Another manifestation of the disease is a lack of facial expression. This can make it appear as though a person isn’t listening or engaged. People with Parkinson’s may also have softer voices that sound hoarse or blurred. Some people with the disease begin to speak rapidly and may stutter.
For those experiencing communication challenges, enlisting the assistance of a speech-language pathologist can be quite helpful. By teaching strategies that make communication easier, a speech-language pathologist can assist in maintaining and regaining communication skills lost to muscle weakness.
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Strategies for caregivers
For those who care for loved ones with Parkinson’s, they should be aware of the importance they play in facilitating communication. While caregivers can assist their loved ones to communicate and be better understood by others, they can also be an impediment. It is important to always be cognizant not to become a loved one’s voice and speak over or for them.
While the approach for Parkinson’s patients to communication will need to change as the disease progresses, there are ways to help:
Time it. Medications used to treat the disease can cause “on” and “off” times for patients. Take advantage of your loved one’s “on” times to talk and let them know how much he or she is valued. Be proactive and speak to medical providers about dosages and times medications are taken. Be aware that Parkinson’s medications often create cycles throughout the day. As medications take effect, there is often an uptick to one’s abilities. However, as medications wane, the opposite occurs. Attempting to disrupt such cycles by adjusting dosage times may not work the way intended. Consistency is key.
Focus. When talking with a person who has Parkinson’s, try to maintain eye contact. Sit down if necessary to be at eye level. Parkinson’s can make it difficult for someone with the disease to talk while doing something else (like walking), so conversations may require a concentrated effort from both parties. Group communication may be overwhelming for someone who requires a bit more time to form a response. One-on-one conversations are more manageable.
Keep it simple. Ask “yes” or “no” questions and avoid complicated sentences. If you are talking about other people, use names instead of pronouns to help clarify the conversation. Make it clear when you change subjects.
Be patient. Avoid finishing the other person’s sentences. Finding the words can be difficult for a person with Parkinson’s, but interjecting can add to his or her frustration. Be understanding and cognizant that communication challenges can have an impact on one’s mood and social participation.
Use new tools. Parkinson’s can take a toll on handwriting as well, so written communication may be difficult. Amplification systems are available that use a small, wearable microphone to make a person’s voice louder (this can be especially helpful if you as a caregiver have hearing loss). Some systems include a receiver that the caregiver can wear, making it easier to communicate from separate rooms. Video calling services, like FaceTime or Skype, can help caregivers who aren’t close by maintaining the relationship and monitoring their loved one’s overall condition.
While there are many tools that speech-language pathologists use to assist Parkinson’s patients with improving voice and swallowing, the Speak Out program may be one of the most widely recognized and used. Speak Out is a speech therapy program developed by the Parkinson Voice Project. The program educates people on how to transition speech from being an “automatic function to an intentional task.”
Don’t go it alone
Communication challenges can make both caregivers and their loved ones with Parkinson’s feel very isolated. Reach out to professionals to help you manage the responsibilities of care.
Your voice counts. As you work to hear your loved one with Parkinson’s, make sure your voice is heard, too.
Caregiving is stressful. Be sure to discuss your needs, feelings and fears with family, a trusted friend or a mental health counselor. Ask questions about the disease and take advantage of the information provided by medical professionals.
As with many aspects of caregiving, the more you know, the better you can handle challenges. Be proactive and support those living with Parkinson’s by helping them live every day to their fullest ability. Get educated and seek the guidance of medical professionals.
Judson Haims is the owner of Visiting Angels Home Care in Eagle County. He is an advocate for our elderly and available to answer questions. His contact information is VisitingAngels.com/comtns and 970-328-5526.