Learning the Hard Way: My Inability to Speak

By Maria DeLeon - December 26, 2017 

Inability to speak is social suicide

Over the years as a physician, I have had the privilege to care for many patients who had difficulty speaking due to various neurological illnesses. I always tried to make sure we found a solution if one was available. I never really understood how difficult and frustrating it was not to be able to use any form of communication, which differentiates us from other mammals.

Rage & frustration 

When a patient suddenly developed aphasia (loss of speech) due to stroke, they seemed to have an emotional shift as well. Oftentimes, patients express themselves through cursing or extreme gesturing. You would, too, if you could not communicate your wishes to others. Until recently, their rage elucidated me – but then I began having trouble speaking myself.

On the one hand, when our voice becomes extremely soft (hypophonic) – those around us may feel frustrated in attempting to engage us because they have to spend extra time and effort understanding what we are trying to convey. Thus, the art of conversation in social settings becomes a chore rather than a pleasure. Plus, the need to repeat things because they can’t hear or understand us can lead to a sense of failure, social withdrawal, and isolation.

Others may feel uncomfortable not knowing how to engage us

At times, due to the lack of verbal communication on our part, others may conclude that there is not much going on upstairs. I am embarrassed to admit that I too have been guilty of this assumption. In reality, the lack of speech or softness in Parkinson’s patients has no reflection on brain capacity. Retrieval of information is simply slower than normal. Muscles involved in speech are weak and/ or stiff, thus preventing normal flow of speech and volume. Friends and relatives like me jump to erroneous conclusions and avoid verbal interactions, or engage in minimal cursory conversation (which may take the form of loud and slow voice as if we were deaf or slow).

Emotional and physically isolation

As I mentioned before, the struggle can be real to both parties attempting to communicate and trying to understand. For instance, at times when my voice has become very low, I tended to withdraw to avoid family asking me to repeat myself over and over. I have also lost few old friends who were used to me calling and speaking for hours with them on the phone or in person. However, since my voice tires easily and becomes extremely soft, I no longer can do that. Long distance relationships, which were maintained by speaking regularly or at length, my voice changes have been a downfall.

Prevention & treatment

1. First is recognizing the problem and taking steps to modify your lifestyle. (e.g., rest your voice and save for important events).
2. Rule out other causes of voice weakness (e.g., acid reflux, tumors)
3. Let others know your limitations (also know your own limitations – my voice tires after an hour typically especially if speaking in loud places)
4. Talk to doctor about treatments (e.g. Botox, Collagen injections, increasing levodopa, participating in an LSVT program). I take a higher dose of levodopa if I am going to do extensive public speaking
5. Consult a speech therapist (ask about communication devices if speech impediment severe)
6. Don’t ever withdraw but rather find quieter places to speak and have more intimate conversations with a small group or one on one. Maybe even use a voice amplifier.

https://parkinsonsdisease.net/living/learned-hard-way-inability-speak/