It's 3:02 in the morning in Colorado. It's NOT a normal waking time for me. However, most of my friends around the world with Parkinson's Disease (PD) have fragmented sleep patterns and wake up in the middle of the night or too early in the morning. But the lack of sleep in PD patients is a story for another time.
There are too many deficits or "lacks of" with PD starting with the "lack of dopamine." In the middle of the night, I am stewing about my "lack of voice and speech." It happened again yesterday: the "lack of communication" when I was talking to a Deep Brain Stimulation (DBS) patient and his family at the hospital. I secretly admired the family member who had the guts to ask me: “How did DBS affect your voice and speech?” I knew he was worried about his father sounding like me after DBS.
My voice and speech have been impacted negatively by PD and worsened by DBS.
The organization DBS-STN conducted an interesting survey, "Speech in individuals with PD with and without DBS" at: http://www.dbs-stn.org/UserFiles/File/SpeechIn%20Ind_PD_rev_.pdf
The survey indicated the following:
“It is common for individuals with PD to experience monotonous and reduced pitch and loudness, variable rate of speech, short rushes of speech, imprecise consonants, and a breathy and harsh voice.”
“Some research has found that speech intelligibility (clarity in expressive speech) worsened following DBS, and speech sounded more slurred. DBS has also been found to have an adverse impact on intonation or rhythm, articulation, and intelligibility; the stimulation itself can cause changes in speech."
My voice and speech sometimes suffer from further “lacks”:
Lack of strength
Lack of volume
Lack of clarity
Lack of warmth
Lack of vitality
Lack of articulation
Lack of variety
Lack of speed
Lack of being heard
Lack of being understood
which result in my:
Lack of self-esteem
Lack of confidence
Lack of contact with people
Lack of feeling normal
I often feel like One Big Lack!
Occasionally my voice and speech seem almost like my pre-PD self. This is the reason that I refuse to delete my 10-year-old voice mail greeting which demonstrates my potential for a warm and clear voice.
At my last DBS programming session, my neutologist/programmer and speech therapist claimed that my voice sounded "perfectly fine," that the goal is understandable speech, and they can understand me (my interpretation was "So what's the problem?").
When 600 people were chatting in the lobby after the Rockyettes dance performance on June 11, my speech therapist commented that she heard every word I said above the roar of the crowd. It is ironic that I am satisfied with my dance performance but dissatisfied with my speech performance in a situation that requires no speaking.
I don’t know if the professionals are accustomed to such poor speech and voice in their PD patients, that my speech and voice sounds “perfectly fine” to them. But the medical folks are not there to witness the frustrated phone calls or the anger in the faces of the audiences when they can’t hear or understand what I’m saying.
It is similar to the experience that most of us have had when taking our car in for repair only to discover that our car works “perfectly fine” when the car mechanic is present.
During the past years, I’ve tried the following measures to improve my speech and voice. You'll notice that I'm no slacker.
- Before I was diagnosed with PD thirteen years ago, I went to an ear-nose-and throat physician because of my “lack of voice volume.” During the evaluation process, he discovered that my vocal cords didn't come together when I spoke. The only population he had seen this was in stroke patients. It was obvious that I did not have a stroke, but he never considered the possibility of PD. He suggested having a surgical procedure called a thyroplasty to correct vocal cord weakness. Patients with vocal cord weakness have a weak, breathy and hoarse quality to their voice and speaking requires considerable effort.
Traditional speech therapy
Lee Silverman Voice Treatment (LSVT) and post LSVT exercises including “Think Loud” at: http://www.lsvtglobal.com/
Voice Aerobics at: http://www.voiceaerobicsdvd.com/
Toastmasters International at: http://www.toastmasters.org/
DBS programming adjustments
The BREATHER – this device strengthens and acts like resistance training for respiratory muscles. Information about the BREATHER can be found at the following websites: www.blaismedical.com www.pnmedical.com www.beterairways.com
Blowing up balloons – to strengthen lung capacity
Humid climate or humidifier
Singing in the shower and car
White noise machine – to talk louder than machine to increase my voice volume
Metronome –to pick up the tempo of my voice
I have found that LSVT, Voice Aerobics, the BREATHER, and humid weather sometimes make my voice and speech almost seem normal.
Perhaps this is as good as it gets with PD and DBS. Perhaps I’m greedy and want it all – to talk and dance simultaneously–imagine that! Perhaps I need to lower my expectations and learn to live with it. However, despite my deficits with PD, I’m not ready to give it up and will keep on talking and dancing for as long as possible.