For the half a million patients in America with Parkinson’s disease, symptoms are an everyday occurrence. But they can have huge consequences for patients. In the public eye, symptoms have silenced Linda Ronstadt’s singing and ended Neil Diamond’s touring.
For example, imagine not being able to control certain tremors in your arms and legs. Imagine struggling with balance when rising from a chair. Imagine speaking too softly to have a conversation with friends and family — and not even realizing it.
But imagine, too, stealing something back you thought had been lost to the neurodegenerative disease that has no cure.
Treatments designed to help
Parkinson’s patient Kathleen Mangskau can speak more loudly and even play the piano again thanks to national training Sanford Health offers to Parkinson’s patients, designed to help with speech and movement skills.
Many clinics provide the Lee Silverman Voice Treatment (LSVT) intensive Loud and Big programs, including Mangskau’s in Bismarck, North Dakota. The Loud program addresses speech, and Big tackles movement. The Sanford Health LSVT speech and physical therapists who work with patients with Parkinson’s have specialized training and certification.
Mangskau said the programs have made her more aware of how Parkinson’s affects her body.
“One of the things I’ve especially noticed is I’m having an easier time getting up and down from chairs. I’m having an easier time doing some of the things like in the kitchen where I have to reach fairly high, I’m able to do that better,” said Mangskau.
During the LSVT Loud program, Mangskau practices sounds like “ahs,” which help her work on vocal intensity and quality.
“We do the highs and the lows, so up and down the scale, and those help your voice from being monotone-sounding,” said Karmen Steffan, a speech language pathologist at Sanford Health in Bismarck, North Dakota. “One pitch, you know when you’re talking, those highs and lows really help with that, and then we practice that loud voice in reading and in conversation as well.”
Recognition of effectiveness
According to the Parkinson’s Foundation, LSVT Loud is the first speech treatment for Parkinson’s proven to significantly improve speech after one month of treatment. The patient receives speech treatment four days a week for four weeks, along with exercises to perform. Continuing the exercises after the four-week session helps maintain the improvements.
The Michael J. Fox Foundation for Parkinson’s Research also recognizes the validity of LSVT treatment. The prominent organization founded by the actor diagnosed with Parkinson’s disease in 1991 helped fund LSVT Loud Companion. That’s an interactive software providing training that can be useful after completion of the program as well.
“With Parkinson’s, we know that it’s progressive,” Steffan said. “So as time goes on, the voice gets softer, it gets more monotone, it gets breathy and hoarse. With the Loud, you build that voice and that intensity and that breath support so that you are able to maintain the volume of your voice. So it doesn’t get to the point where you speak so softly that you are not able to be heard.”
On another high note, LSVT has allowed Mangskau to start playing piano again. She says the therapists at Sanford Health adapted the program to meet her needs and added specific exercises to help her with daily activities that are challenging.
“I think the program has made me more aware of how Parkinson’s has impacted my body. The thing that it is doing is helping me to deal with that. So, it’s really more of a preventative, I think. It can help me to know what exercises to do in both speech and physical therapy so that I do a better job of communicating and of dealing with how Parkinson’s impacts your body.”
‘I wasn’t being heard’
In her prime, Joan Patterson of Vermillion, South Dakota, never thought of herself as shy and quiet. But as Parkinson’s disease started to take hold of the 86-year-old Sanford Care Center resident’s body, it also stole her voice.
Initially, she noticed changes in fine motor skills such as writing. Years later, as with nine out of 10 people with the disease, she and her family noticed changes in her voice and speech.
“I wasn’t being heard,” Patterson said, adding that she often would have to repeat herself.
Common vocal effects of Parkinson’s include reduced loudness, a monotone pitch, hoarse voice quality, imprecise articulation and even reduced facial expression. Just 3 percent to 4 percent of patients seek and receive speech therapy to improve their functional communication.
Patterson sought help after being introduced to the LSVT Loud program by Sanford Health speech language pathologist Candace Zweifel.
Patients will think they’re talking loudly and at a normal volume when they’re actually barely whispering, Zweifel said.
“By targeting the use of a new Loud voice, we are teaching patients how to get back their ‘normal’ volume,” she said.
Decades of research affirm LSVT Loud’s effectiveness, and both the clinical and functional outcomes have proven true for Patterson.
“I know I am louder. And am more aware of when I need to adjust (my voice),” Patterson said.
People around her have also noticed her louder voice. They can understand her better, can hear her on the phone or when driving in the car, and even those with hearing loss are able to communicate with her now.
“It’s much easier to understand Mom,” said Patterson’s daughter, Sue Jopling, of Vermillion, adding that her brother agreed that their mother sounds better than she has in years.
LSVT Loud also shows promising outcomes for those with other neurological diseases or general difficulties with voice and speech.
“I didn’t realize I was talking so softly before. Now I can speak out and be heard,” Patterson said.
Dr. Lorraine Ramig established LSVT in 1985 in honor of a woman with Parkinson’s whom Ramig had helped through a series of voice and speech therapy sessions. Loud was the initial program, and Big was created more recently.
In addition to those, follow-up graduate programs can help keep patients motivated to continue the exercises they learn in Big and Loud.
Anyone interested in either of the LSVT programs must have a doctor’s referral before registering for the Sanford Health classes.