Communicating Challenges With Lewy Body and Dementia
Hello:
This discussion is being put together allow LBD patients and caregivers a place to exchange ideas on our communication challenges.
As a LBD patient - I like to share some insight into what things look like from the patient side. I call it  - from "in here".
I encourage other patients to chime in. 
I will be posting some tips daily for communication - if that is what you would like.
Looking forward to growing this discussion and learning from and with all of you.
Caregivers - always remember that we love you and appreciate what you do for us everyday. Even if we can't say it or even seem cognizant of it - our heart knows.
Peace
Larry H
Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.
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Thank you! So grateful for this upcoming dialogue and grateful for your continuing abilities that allow you to give so deeply to others.
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5 ReactionsHello @larryh123
I'm so glad that you started this discussion group about communication difficulties for those of us who have Parkinson's (PD) or LBD or post-stroke symptoms. The speech problem makes ordinary communication difficult and swallowing can be a challenge as well.
Regarding speech, I've learned to speak intentionally (not off the cuff) to use "the pause" in my speech.
Has anyone else tried reading out loud on a regular basis? This helps to keep your speech in tune and to practice "the pause."
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9 ReactionsGood food for thought about speaking intentionally - not off the cuff.
When you are mentioning “the pause” in your speech, are you referring to the cadence of your speech?
I can definitely see how reading aloud can help with that.
I’m going to try and do that during my morning devotional study. I read, listen and now will speak the Word I am studying.
Peace
Larry H
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10 ReactionsToastmasters is a good organization for practicing speaking skills and learning how to use a pause is one of the techniques you learn. As much as I hate speaking in front of a group, I know that it helps me. Sigh, have to get back to preparing my speech for Friday. If you can find a local close Toastmasters club, it helps by providing examples from experienced members and new members for off the cuff and prepared speaking techniques/skills.
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9 ReactionsI want to share what I find good resources on the subject of communication.
Here is a document with some info.
https://eatspeakthink.com/wp-content/uploads/2021/02/LBD-communication.pdf
Take a look.
Do any of these seem like they might be beneficial to your situation?
As a patient - I can say all of the tips are good.
I will pick out a few and give an example - from “in here” of how a certain tip helps me.
Maybe it might shed some light.
Patients - please share your thoughts!!
Peace
Larry H
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9 ReactionsTruly appreciate any helpful suggestions or insight to how this disease is impacting my husband , as each day seems to look different. Thankyou for sharing with us caregivers as the uncertainty of the future is difficult . Just doing our best to take it one day at time !
Thankyou. Kelly
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5 ReactionsHi @larryh123,
When I say "the pause" I'm referring to speaking slowly and including a pause as I speak. This gives me better control. If I start talking quickly, I really lose the quality of my speech. When I was in speech therapy and was reading out loud, the speech therapist would instruct me to pause when I got to the end of a sentence or paragraph. It does help your speech to be intentional. Intentional is a great concept when you have any neurological problem.
I also use "the pause" when I'm eating and drinking. Intentionality is very important to me. While some might think that I'm "slow" it is not really the case.
@johnbishop, As you mentioned "the pause" in Toastmasters can you offer an explanation as to how you use it?
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5 ReactionsHere is an article about the cognitive and social value of reading out loud, https://www.literaturelust.com/post/4-reasons-why-reading-out-loud-is-actually-good-for-you
This article reports that reading out loud will improve your memory, comprehension, etc.
I would love to see your comments after you read the article
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6 ReactionsThanks for explaining that a bit more. I can see how this would be of great help. If I get going to fast then I stumble for words, voice tapers off and then my mind cant keep up with my mouth.
Time for a pause to let my brain catch up.
Peace
Larry H
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8 Reactions@larryh123 Right, talking too fast always gets me in trouble. Rehearsing what I'm going to say is always the better route. If I'm talking about something that's important to me I really slow the pace down because I realize that the stress of the topic can make me jumble my words.
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