Plagued By My Voice

Photo of Lauren Bacall

For as long as I remember, my voice has been husky, with a breathy, sexy quality to it like Lauren Bacall's. I only wish I had her sultry good looks.

But now I’m plagued by my voice, which is no longer sexy since Parkinson’s (PD) and Deep Brain Stimulation (DBS). My current voice is frequently hoarse, monotone, quiet with words that are garbled or slurred. Often my voice is so slow and hesitant that despite having two advanced degrees, I sound like I’m mentally retarded. I know that the politically correct term is “developmentally disabled” but right now I’m too PD’ed about my voice to care.

My PD voice worsened since DBS. Due to a possible “spill over” of stimulation into nearby brain regions, I have difficulty moving my jaw and tongue which has translated into poor articulation.

When I speak, it feels as though I’m shouting, while listeners experience it as a whisper. I often don’t answer the phone, make phone calls or venture out when my voice is particularly bad. When I phoned to schedule speech therapy, one of the prospective speech therapists hung up on me thinking I was a crank caller (Needless to say, I didn't choose her as my speech therapist).

I grew tired of my husband Tom asking “WHAAAAAT?” before I even completed my sentence. He had assumed that he wouldn’t be able to understand. A negative communication pattern developed between us that we’ve nipped in the bud by him repeating portions of my message that he heard or understood, and I clarifying parts that he didn’t hear or understand.

When I call my brother on the phone, he calls me back with a phone that amplifies my voice. When my 86 year old aunt called and wanted to talk early one morning, Tom tried to explain that my meds hadn’t taken effect and that I had no voice. Even though I wasn’t on the phone, I heard her respond with “What do you mean that she can’t talk?” There is nothing wrong with my hearing.

And I’m not suggesting that my voice and speech is always like this. Sometimes out of the clear blue, a normal voice inexplicably emerges surprising me and everyone else.

My heart broke when I observed someone with advanced PD mouth the words to her husband, describing her PD voice as “I feel as though I’ve lost my zest.”

Although eighty-nine percent of those with PD experience communication difficulties, only 3-4% of those with PD receive speech therapy. Tomorrow I begin the Lee Silverman Voice Treatment (LSVT) for PD folks with speech and voice problems. I’ve participated in a modified version of LSVT in the past, but tomorrow I start the real deal (four times a week for four weeks). I’m both excited and skeptical, knowing that it’s going to take a lot more than “think loud” to resuscitate my PD voice. I’ll keep you posted.

Comments

[Joe]

I hear you.(No pun intended)I don't have the monotone voice yet, but I find more and more that I have to repeat myself, especially if I am trying to have a conversation in a crowded place like a restaurant, or if I am trying to talk over the phone.

[Kate Kelsall]

Hi Joe,

I hear you too (pun IS intended).

After completing two weeks of Lee Silverman Voice Treatment, my loud ah's have progressed from 4 seconds to 12+ seconds. Let's see if I can translate this into my real-life voice.

Kate