Unless one is on guard, Parkinson’s disease will steal your voice.
We are all aware that many men and women with PD find that their voices have become softer and more difficult to hear. Some discover that they have greater difficulty forming words clearly. There might be a loss of prosody resulting in speech that is flat, monotonic, and far less able to express underlying emotion. This is the literal loss of voice.
It is important to remember, however, that we also possess a figurative voice. It is the latter that individuals with young onset PD are most vulnerable to losing. This is voice as metaphor for the Self, and its diminishment can be one of the most devastating aspects of the disease.
Our figurative voice is our perceptible presence in the world. It is our opinion, our beliefs, our thoughts given outlet or expression. It is the utterance of what we hold most important, in fact it is the very right to make such utterance. In the English language we inherently recognize this in a number of expressions. We talk of “giving voice” to our beliefs, “voicing our concerns”, of “having a voice” in a family, group, or political party. When taken as a verb, voice means to state or assert. My dictionary tells me that some additional synonyms for the verb form are expound, give, raise, state, vent, express. More importantly to this discussion, it indicates that antonyms for voice are words like stifle and suppress.
Parkinson’s can stifle and suppress a person’s presence among others. In conjunction with lost prosody, facial masking renders a person less able to express one’s inner state. The communication of the emotions can also be lost when spontaneous body movements decrease. To others, the person with PD may appear pleasant enough but detached and disinterested, no matter how engaged that person actually might be.
Parkinson’s can suppress the speed with which thoughts rise into awareness, ready for expression. Conversations often move rapidly and if one’s thoughts lag even a little, the discussion may move past in the direction of another topic. When this happens enough, a person with PD can become frustrated and adopt silence as a habit. Silence can feed into the masking, leading to a perception of disengagement, even haughtiness that can cause others to withdraw.
A lost voice can mean isolation, the ultimate suppression and stifling of a person’s inner being. In isolation, there is not even a place for a voice because a medium for socialization is of little use when there is no way to interact with others.
Speech therapy is always a good first step for a voice that is literally being lost. Reclaiming our metaphorical voices is more complex but possible. The first step is to be on guard to determine when it is happening. Get feedback from trusted friends and family members about how you are being perceived. Practice programming in some movements that are consistent with how you are feeling. These may feel a little stilted at first but hand gestures, a more dynamic body language, and good eye contact will provide others at least some clues as to what is going on in you. As necessary, slow conversations down by telling others how the PD affects you in social gatherings. Stress, however, that you are alert and interested in what others are saying.
Reclaiming a voice that is being lost to PD will take some effort. However, it is worth it. Your voice needs to be heard because you need to be heard.