Worsening of Speech Attributed to DBS by Some Persons with Parkinson’s

I was upset but not surprised by the results of the study, Speech in Individuals with Parkinson’s Disease With and Without Deep Brain Stimulation, prepared by DBS-STN.org, an affiliate of The Parkinson Alliance. DBS has been found to adversely impact speech in a number of Parkinson’s (PD) patients. Although I have observed the devastating effect of DBS on my own speech and the speech of many PD patients with DBS throughout the years, I didn’t realize the magnitude and severity of the problem until reading this study.

Also troubling is that so many patients were not informed before their DBS about the possible adverse effect of DBS worsening their speech.

If you are the person struggling to be heard and understood, it is no consolation that so many folks also experience speech problems after DBS.

Now that the secret is out, what can be done to remedy this problem? This is a complex issue requiring complex solutions. It requires a village--patients, speech and language pathologists, neurologists, neurosurgeons, Medtronic, DBS programmers and researchers--all working together to generate creative solutions.

A complete report of the study can be found at:

http://www.dbs-stn.org/media/file/DBS-SpeechReport-withReferences.pdf

Some of the findings in the report are below:

First the Bad News

One of the objectives of the study was to compare and contrast speech symptoms for DBS and Non-DBS patients in both a Younger PD group (50-69 years of age) and an Older PD group (70+ years of age).

For both the Younger and Older PD groups, there were statistically significant differences in speech disturbance severity between the DBS group and the Non-DBS group, with the DBS group reporting more severe symptoms.

For the Younger PD group, 75% of the DBS group (versus 29% of the Non-DBS group) characterized the severity of the speech problems as moderate to severe.

For the Older PD group, 81% of the DBS group (versus 48% of the Non-DBS group) characterized the severity of the speech problems as moderate to severe.

Low volume was the “most troubling speech symptom” for DBS and Non-DBS participants in both the Younger and Older PD Groups.

Slurred speech is one of the most common speech symptoms and appears to be the symptom most negatively impacted by DBS for both the Younger and Older PD groups of the DBS group.

The frequency of swallowing difficulties is greater in the DBS group as compared to the Non-DBS group.

In both the Younger and Older PD Groups, the DBS group had higher ratings of voice disturbance that interfered with their daily life and indicated that due to speech difficulties, they were communicating and socializing less often than the Non-DBS group.The DBS group reported having greater emotional difficulties in response to their voice problems.

More Bad News

The second objective of the study was to compare and contrast speech symptoms as it relates to duration of PD (Advanced PD 6-10 group and the Advanced PD 11+ years group).

For both the Advanced PD 6-10 years and the Advanced PD 11+ years groups, there were statistically significant differences in speech disturbance severity between the DBS group and the Non-DBS group, with the DBS group reporting more severe symptoms.

For the Advanced PD 6-10 years group, 74% of the DBS group (versus 42% of the Non-DBS group) characterized the severity of the speech problems as moderate to severe.

For the Advanced PD 11+ years group, 81% of the DBS group (versus 52% of the Non-DBS group) characterized the severity of the speech problems as moderate to severe.

Low volume was the “most troubling speech symptom” for DBS and Non-DBS participants in both of the Advanced PD 6-10 years and the Advanced PD 11+ years Groups.

Slurred speech is one of the most common speech symptoms and appears to be the symptom most impacted by DBS in both of the Advanced PD 6-10 years and the Advanced PD 11+ years Groups.

For both of the Advanced PD 6-10 years and the Advanced PD 11+ years groups, the frequency of swallowing difficulties is greater in the DBS group as compared to the Non-DBS group.

For both of the Advanced PD 6-10 years and the Advanced PD 11+ years groups the DBS group had higher ratings of voice disturbance that interfered with their daily life and indicated that due to speech difficulties, they were communicating and socializing less often than the Non-DBS group. The DBS group reported having greater emotional difficulties in response to their voice problems.

DBS Participants

66% of the DBS participants perceived that their speech worsened as a result of DBS, as compared to 34% of the DBS participants who perceived improvement of their speech symptoms.

50% of those DBS participants who perceived that their speech worsened following DBS said that it was unexpected.

For those who perceived worsening of speech to be attributed to DBS, low volume, slurred speech,word-finding difficulties and swallowing were the symptoms most frequently indicated as being adversely impacted by DBS therapy.

94% of the participants indicated they are satisfied with outcome of their DBS therapy based on overall symptom improvement received from DBS, even in the context of having some side effects.

Despite speech disturbance following DBS, 97% of the participants reported that DBS has improved their overall quality of life.

Comments

[kaitlyn roland]

thanks for sharing this information... low volume speech can be incredibly frustrating for some people and swallowing difficulties can be very dangerous! this is important information that all people considering DBS should be made aware of.
Thanks!
http://kaitlynroland.wordpress.com

[mary spremulli]

Perhaps your final comment, Kate is the reason people will often put up with less than satisfactory speech. It is the seemingly miraculous improvement in gross motor symptoms post DBS. Hopefully, as DBS surgery and programming techniques are improved upon, these speech side effects will be less of an issue. In the meantime, patients should undergo pre/post speech/swallowing assessment with a licensed speech-language pathologist prior to undergoing DBS or any other surgery, for that matter when there is some risk of further decline in these important functions.

[John Dean]

I agree that in many situations, the relief from the motor symptoms often seems to trump the potential speech (and swallowing and cognitive) side effects. I think that is often a outlet for both individuals with Parkinson's undergoing the procedure as well as many of their physicians. Anecdotally, I know that the settings of the DBS are almost always optimized for improving motor symptoms rather than speech and swallowing. However, with some of the newer technologies, this should eventually be possible (or may be possible now?) to have different settings for different environments that can be toggled by the PwP.

[John Dean]

I sometimes wonder if one of the factors preventing Michael J. Fox from pursuing DBS (or an additional thalatomomy) is the very real likelihood that it could have a significant impact on his ability to communicate. I realize that the core vision of his organization is to find a cure for Parkinson's disease rather than a temporary solution but the implications of him losing the ability to communicate his message would be devastating on many levels.