Giving a Voice to Parkinson’s

I wondered what the wife of the Parkinson’s group member was thinking as she strained to hear our devastated voices. She attended the Parkinson’s Disease support group on behalf of her husband who was getting cold feet while being evaluated as a Deep Brain Stimulation (DBS) candidate. I was relieved he did not attend because his cold feet might have turned to ice at the meeting.

While I didn't know what she was thinking, I was pondering the question of "How is it that so many of us who have had DBS, have experienced major voice and speech problems?" Our voices are soft, slow and slurred. We stutter and hesitate as we struggle to convert our thoughts into words. While as a group we are intelligent and highly educated, we must sound inarticulate to outsiders.

Not only has Parkinson’s affected my voice, but also DBS and subsequent programming have impacted my voice negatively. Even after 20 sessions of Lee Silverman Voice Treatment (LSVT) since DBS, my voice still has its “on” and “off” moments. Sometimes following the LSVT’s mantra of “thinking loud, clear, and big” is just not enough.

For example, on my recent weekend trip to New York City, I had five full body pat-downs because of the pacemaker to my brain. I quickly became aware of the high security at the airport in Denver, Empire State Building, United Nations Building, Statute of Liberty, and the airport at LaGuardia. My speech became garbled after that trip, possibly because my DBS settings shifted or perhaps because of the stress of having five full body pat-downs.

Meanwhile, at the end of the meeting, the caregiving wife asked for emails from those who experienced benefits from DBS. I could imagine her carefully scrutinizing the incoming emails. “Nothing too scary,” she emphasized, as she stressed communicating by “email, not phone.” She must have been worried about her husband’s cold feet not proceeding down the DBS path.