My husband searches for the right word to communicate and is often at a loss which causes frustration to him and the care giver,but it compounds the problem further because he is not able to speak clearly. His voice is feeble but also as if is is super drunk.
Are there any voice stimulators available that will can be placed on the voice box to enhance and will project words with correct pronounciaion ?
There isn’t any voice enhancement device that I know. Speech is part of what goes as the muscles lose strength. Larry will rattle on and on. I have little idea what he is saying. I have to get him to speak slowly and enunciate clear as he can. It’s like pulling teeth most of the time.
Jeff, you are a blessing to this site. My son is gone, but I still scan the site daily. You always find the time to be helpful to those new to this site. Thank you!
I remember what it was like to get going on this site. Once in it’s hard now to say things.
For a rare disease a lot of new people show up almost daily.
That seems to be a common issue as the patients progress. Dad, who had CBD, experienced it also. His speech therapist once explained it takes about 140 actions in the human body to produce speech. Any part of that complex chain breaks and speech becomes affected. These diseases definitely affect parts of that chain.
Ron
This eventually happened with my dad... We to communicate by hand. If he wanted somthing and it was a yes squeeze once, no squeeze twice.
This is when (as hard as it will be) you will have to adjust to a new way of communication and observe how he reacts to his comfort, which eventually can become hard as the disease advances...
Patience will be key. Other things that may also help is speech therapy. If you don't have access my mom use to do have my dad go over is vowels, names of family members, names of general items to keep him from practicing.
My heart is with you and i hope you can find a way to communicate.
Jessica
Hello there
We saw our SLT last month as Chris's speech is also going. She gave me a letter sheet with the alphabet and some basic words but asked me to compile pages of his most frequent phrases.
Hopefully this will help.
Keep on keeping on
Anne
It is heart breaking when communication starts to fade. I do remember my dad being obsessed with certain things, then would repeat himself over and over again but we had no idea what he was going on about as his words didn’t make sense.
Hi Melhukin,
This is what my husband (CBD) is going through right away now. It is heart wrenching! 😢
I’ve noticed another problem my dad, he’s getting locked jaw. I’ve tried researching it on PSP but can’t find much information.
Oh dear! I thought for sure I had seen posts re lockjaw on here before, but when I search now I don’t see anything either. I must have been looking at a google search? I’m sorry I don’t have any answers for you but maybe someone else will be able to respond. You might want to try running a second post titled Lockjaw?
I hope that you can find something soon and that your dad feels better. This disease is such a nightmare!
❤️ SewBears
Our speech therapist recommended a voice amplifier ( discuss with them) I purchased one but only found it mildly useful. Other than that I bought door bells, hand bells and anything that helped for him to call me. The baby video monitor was also very useful if I needed to be in other rooms and needed to see that he was OK. Hope that helps.
Love Kate xxx
Weuse our mobĺle phońès when in different rooms. X
Hi a very familiar scenario, I'm afraid. Mum has been given exercises by a speech therapist - doing arrghs - as loud and as long as possible, standard ones, then ones where you change pitch either up or down. Also a list of well used phrases "cup of tea please", "Alison where are you" to repeat. She has also lent us a portable microphone to amplify the voice, I tend to only use it when we are out as I want Mum to use her voice as much as possible (use it or lose it) and not rely on the mic.
Hugs
my husband would say something and we cauldnt understand him ,we would keep trying to gues what he was saying and then he would say quite annoyed forget it which came out as clear as anything
BadDisease,
What you are describing was the same for my wife. Voice therapy worked the best, especially the LOUD program, however it only slowed the decline for a couple months. The volume and finding the right words continued to decline. Communication was probably the thing she enjoyed most, and was painful to her as it was taken away. She loved coffees with friends and the chats she had.
As her abilities in this area declined, it forces me to listen to body language and contextual cues as to what she wanted. Her eyes spoke volumes to me.
Not only is this a bad disease, but also a cruel disease. I wish you patience, strength and compassion as you care for your husband.
Bobby
When my late wifes voice started going. I got her a tablet. That way she could communicate with me texting thru the tablet. It helped in many ways. She was able to go on to the internet, play music, I know for a fact that it helped, she thanked me many times during the last few years of her life. I know it made a big difference to her. Also when the doctor talked to her he could ask her questions and she could answer. Good luck in your journey down this road.
PSP is a horrible illness. We used the same method as you, 1 squeeze for yes, 2 for no. The words my father spoke were very quiet almost a whisper and difficult to understand. I think it is one of the most heart breaking symptoms of the vile illness, as far as I know. I wish you all the best.
Dear Baddisease
Has your husband had a recent Speech and Language therapy (SALT) assessment there are so many different aids available. From apps which convert text to speech, word boards, memory joggers hand signs. Hope you find something which helps
Love Tippy xxx
Hi baddisease!
These are our experiences:
We intend an App but It was not possible to use it for more than few months. As her dexterity deteriorated, she had problems placing her finger on the appropriate word or letter and we were able to buy a plastic screen cover that had an opening for each key on it; this helped to direct her finger and keep it one the right letter. Another problem she developed was the inability to tap her finger in a key or letter, and as such she would often have several letters in a row. For example if she tried to tap the letter A, it would show as AAAAA because she could not get her finger off the letter A quickly enough.
Now we use a plastic laminated A3 sheet with the alphabet in large letters (40x40 mm) supported on a music stand at the height of the patient's eyes.She points to the letters and another person writes on a blackboard the letters that she indicated.
You can also prepare "communication panels" with the alphabet and some pictograms that patient can be marked with a pointer. Up to the present time it is the best system we could find. Over time the pictograms become useless and it is necessary to use only letters, as large as possible.
The communication with a patient of PSP is one of the most difficult problems to overcome.
When the patient can still verbalize it is important to know that saying NO requires less muscular effort than saying YES.
When verbalizing is almost imposible and the “communication panels” don´t work, to say YES by showing the thumb from the fist and saying NO by hitting the fist on a surface could be a solution. Alternatively taking the ”more active” patient´s hand and establishing that a squeeze is YES and no squeeze is NO.
There will come a time when the answers are slow and even erratic. In this case, it may be better to prepare the patient and tell that you are going to ask for a response later to a question that you are verbalizing at that moment. When the disease progresses, the response is slower, until making a thumb gesture or squeeze your hand may need at least 20 seconds.
To write down a big YES, NO on a sheet of paper and the patient could point to the correct one seems to be a good alternative.
Hoping to be useful.
Hugs and luck.
Luis
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