Navigating the effects of Parkinson’s disease on speech, part 1
Speech difficulties can make a patient feel alone and misunderstood
First in a series.
I recently heard a rumor that I wasn’t doing very well. An old friend dropped by and spoke to my husband, John. The friend said he’d heard from someone else that my health was failing. Near death, by the sound of it.
Communication can be tricky, I know.
I’ve mentioned this several times, but one of the results of having deep brain stimulation surgery for Parkinson’s disease — a procedure that involves implanting electrodes in the brain to regulate abnormal brain activity — has been slow speech. It has to do with the settings on the stimulator and where the speech center is located in my brain, right beside the part that causes my tremors. If I completely get rid of the tremors, I not only struggle to get words out, but it also feels like somebody is choking me. If the settings are adjusted so that my speech sounds “normal,” then my tremors go wild. Right now, I’ve struck a balance, with a bit of a tremor and a slight speech impediment.
Why we’re misunderstood
I have many friends in the Parkinson’s community who also have problems with communication, mainly due to speaking very softly. We’ve had many discussions about our speech issues, and generally, we all feel the same: frustrated, alone, and deeply misunderstood.
For instance, I’m frustrated when I can’t hear others, and when I realize they can’t hear me. You can only hear or say “I beg your pardon?” or “Come again?” so many times.
The worst is when someone interrupts me to finish my sentence when I speak too slowly. I know they do this out of care, but it makes me feel small and unimportant.
So what can you do as a friend or caregiver of someone with Parkinson’s speech issues? The answer is simple: Be patient. It may take me a bit longer to get all of my words out, and I might not tell a joke as quickly as I used to, but it’s still my joke!
Also, when well-meaning acquaintances direct their questions about my well-being to my husband rather than asking me directly, it can make me feel overlooked and unimportant. Hello, I’m right here!
My husband usually responds with, “Why don’t you ask her yourself? She’d be more than happy to talk to you about that.” This simple act of recognition can make a world of difference.
Parkinson’s disease can make us feel small and invisible. The only way for us to be seen and heard is by speaking up, so please allow us to do just that.
In part two of the series, I’ll discuss what happens when we can’t get our words out. Please join the conversation in the comments below.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Jane Ann Nelson
I totally agree with the speech issues you raise - that's me.
Christine Scheer
We need to start a club, although I don't know if anybody would actually want to join!
Freddy Romero
I was diagnosed 4 years ago with PD. So far my symptoms are not too bad : a little tremor, a little drooling,and the volume of my voice getting lower. I work as a medical interpreter so my voice is a very important part of what I do. I went for speech therapy, and learned some exercises that help. The funniest thing is I do a lot of my exercises as I drive, and at red light I get strange looks from people that watch me with my mouth wide open" talking to myself out loud". I would recommend for all people with PD to register for some of these classes. It's bad enough we have to deal with our balance etc to also get a lot of "what did you say?"questions from family and friends
Richard
Hi! 18 months since DBS. Most days my voice can be a problem if I don’t make a very deliberate effort to look at the person I am speaking
to and speak “forcefully” (not rudely). If I am with friend or family
I can moderate this process and relax. Generally my voice is lower
than it once was - make any sense? By end of most
days, my voice leaves me entirely, even in middle of speaking.
Jim Comes
I am not a religious person, but I've dscided to say my prayers out-loud.to focus on my voice
Christine Scheer
Hi Jim, This a a great idea. The more we speak, the better we should be at it -theoretically, anyway. I often read my column aloud before I send it in to be published.
Monica
This is very true when it comes to listening to my husband who was diagnosed with Parkinson's in the last three months! He's very soft spoken and I really have to listen to understand. I know he has had the disease for a couple of years or more! When, I ask him to repeat , it , or come again ,sometimes if can be very frustrating for him! Patience is the key for working with him. I also have worked in nursing for over twenty years and realize it comes with a lot of patience! Thank you for sharing!
Christine Scheer
Hi Monica, Yes, patience is key, so kudos to you. I probably should've mentioned that there are speech therapy lessons that are available for us PwP, many are on-line. I found they helped, as long as I practiced.
All my best to the both of you,
Christine
Martie Mycoff
As a speech pathologist who now has PD, yes I have noticed several changes since having the DBS procedure: out of breath more, slightly softer volume, etc. but the worst has been falling backwards! Yuk.... Very bad.
Susan Rooks
I definitely can relate to the speech issues and falling backward. I've also had DBS and knew the speech issues were related to DBS but didn't know the falling backwards were related! I thought to was just me!
Christine Scheer
Hi Martie,
Yikes! Falling backwards? That sounds a bit scary. Have you told your neurologist about that? Maybe the settings need to be adjusted? Good luck with everything.
Christine
LaVaughn Jarvis
I find myself trying to tell something and the words won’t come out. It’s almost like I’m suffering.
Christine Scheer
Hi LaVaughn, I get that as well. I wish I had a solution to all of this.
Hang in there, Christine
Genevieve Edwards
I can see and feel the words in my mouth I just can't get them out
Bastien
Christine- thank you for sharing this. I have a lot of difficultly with communication. I feel very articulate and witty in conversations I have in my head . But in real life I struggle and labor to speak, to find words, to understand what you said - often I am exhausted and unhappy seeing version of myself.
I 've thought about BIRD WATCHING clubs as a good social group for me: generally there's almost no talking LOL
Christine Scheer
Hi Bastien, Yes, I've become a good listener these past few years. Like you, in my mind I am witty and articulate, but the reality is quite different. HAHA to bird watching, have you got the Merlin App? It is fantastic for bird watchers!
All my best,
Christine
Aziz Husain
Jim, besides praying out loud, another thing I have triedf out is reading your daily newspaper out loud. Quite a te sted medicine!!
Christine Scheer
Hi Aziz,
Yes! the more we exercise our voices the better!
Thanks for your comment.
Christine
Jackie Hunt Christensen
Christine, thanks very much for sharing this. This very topic is the driving force behind "Come Talk To ME," the feature-length documentary that I'm currently producing. We hope to have it completed by next summer
Here is our first trailer.
https://vimeo.com/929669552/57ab7869df
Brief summary of "Come Talk To Me" documentary:
"Come Talk To Me” follows Parkinson’s disease (PD) activist Jackie Hunt Christensen, her husband Paul, and a diverse group of friends with PD as they reflect on the many types of communication that are necessary to allow them to participate fully in relationships with their families, friends, communities, and healthcare providers as the disease progresses. Because communication is everything.™"
Christine Scheer
Hi Jackie,
I just watched your trailer, and I can't wait to see the whole thing!
Yes, communication is everything.
Thanks for reading,
Christine
Mike
My wife speaks very softly and in loud restaurants I cannot hear what she is saying so I bought a pair of JBL 2-in-1 earpod/hearing aids I do not have a hearing issue and for $99 these allow me to hear her and muffle the restaurant noise. They can also be used as ear pods for your phone.
Christine Scheer
Hi Mike,
I love this idea!
Thanks for this great idea for care partners.
Christine
Judy Facchin
My husband was diagnosed in2006. He has had the DBS surgery which has been a life saver for us. The surgery has affected his speech, as others have mentioned. We have participated in a "Speech and Communication" session via Zoom through the Parkinson's society but without practicing everyday his voice is weakening and I find it quite difficult to understand him. The strength in his legs has also got much worse so he doesn't want to exercise anymore. It's sad to see him "go downhill" and not be able to do much to stop the progression. ):
Christine Scheer
Hi Judy,
It's hard to see our loved ones suffer, thats for sure. There are many on-line options for exercises for PwP. There are probably seated exercises as well that might be a good way to get him started exercising again, especially if you (or somebody else) did it with him.
The Parkinson's Foundation has a great program:https://www.youtube.com/watch?v=AZV3_NfcpVs
All my best!
Thanks for reading!
Christine
C Michael Dreher
I have had PD since May. Early stage one with no tremors. On October 11th I had a small stroke. Prior to my stroke, PD was more of a nuisance than anything. My PD affects my right side and my stroke my left side. I just began a speech program for PD called Speak Out!, a Parkinson's Voice Project program. It is an 18 session outpatient program. I live in New York City, and able to begin the program. I have finished four sessions. The key to improve speech and everything with PD is all about the Voluntary autonomic nervous system, as disease progression impacts our involuntary movements, like speech. Everything/all movements must be done purposely with I n t e n t! There is another PD speech program called L S V T. Both programs require a physician referral to a speech pathologist certified in either program. There are lots of online resources available to patients who are enrolled in an outpatient program.
Christine Scheer
Hi,
Thanks for this. Yes! I should've mentioned that there are resources available. Lots of stuff on-line, and I know our local Parkinson's society offers a program at no charge.
Thanks for the info and for reading my column!
Christine
Jon D Cluff
My current DBS setting controls my tremors very well, but it is difficult to talk. I joined a singing parkinson's group called Tremble
Clefts in the Sun City, Arizona area which helps. Singing is a great way to exercise your voice.
Christine Scheer
Excellent idea! Now, if i could only hold a tune...
Thanks or the info!
Christine
Kathy Dykes
My soft spoken husband , whose voice has become increasingly soft and rather slurred, has recently been diagnosed with PD. We were referred to LSVT Loud, for speech therapy, and LSVT Big for Physical Therapy, both developed for Parkinson’s patients. Both are well worth the time and effort.
Christine Scheer
Great programs!
Thanks for joining in on the conversation.
Christine
John M McDonald
Have you researched SpeechVive? Its a wearable device that raises PD voice volume instantly by 30-50%.
Christine Scheer
Hi John,
I just looked it up now, and it looks fantastic. Have you tried it? I'm very curious.
Thanks for the info!
Christine
Teresa
The Parkinson's Voice Project is a nonprofit that specifically targets Parkinson's patients and their difficulties with speech and swallowing. You can learn much more from their website. My husband has benefited greatly from this program.
Christine Scheer
Hi Teresa, Thanks for the information!
Christine
Brian Purdy
What a super site there is just so much avaliable, I came on the site looking for help with my speech,but then I found myself doing 1 to 2 hours plus of seated exercises, phew! I feel much better for the experience,.Thanks to all concerned for your inputs its greatly appreciated. I shall definitely be visiting again!