Strange noises

[Westerngirl]

My husband makes keening noises like a child when upset.I find all the noises difficult.Growling,moaning etc,he has the full range.Are they dementia symptoms?I feel so sad for my big man .

[bsilverman]

I don’t think I get exactly that but the sounds coming from my guy are also disturbing. I don’t always understand what he wants and the sound of his struggle just tears me apart. I know my guy has cognitive issues for sure. I wonder if it’s all connected to both word finding along with lack of insight .

I’m sorry for all of us who are living this difficult disease.

[NHGrace]

My mom did this too. I didn’t take it to be about cognition - she couldn’t speak, so these more guttural sounds would come out. Especially when she was sad, frustrated or angry. It was dreadful. I wish I could say I was always patient/tolerant of them, but I wasn’t. The cruelty hit me in a place I’d never felt before during those outcries. Hang in there, and certainly don’t beat yourself up for being disturbed by them.

[Marian_M]

Hello Westerngirl.

I am not really very active on this community. And we live in Holland. But my dad has PSP and he has the same symptom you describe.

He has lost control of his voice, so he makes wailing noises, especially when he is emotional. And as his PSP progresses this symptom is more manifest.

My father is a smart man, but as he lost control of his voice and his ability to speak in a proper way, he became more silent. Which makes it even more difficult to differentiate if it is PSP or dementia. With my father I do not believe it is dementia, but just his loss of control of his voice.

Here in Holland, I spoke with the speech therapist, and I asked for a device with pictograms (a kind of tablet device) with a computerised speaking voice, so we can communicate in a way with the help of that device.

This device is also used for people with speech problems (aphasia).

Forgive me if my english is not so well...

And it is very very awful to watch our loved ones suffer so much….

Wishing you both the best!

Kind regards,

Marian

[AliBee1]

Dear Westerngirl. My husband can talk and sometimes quite coherently, although others find him harder to understand, but like your husband he also has the complete range of moaning, groaning and grunting noises. No one can explain it to me. We try to laugh about and have told him we are going to nick name him Bear which he laughs at. I did ask him if he could walk without grunting the other day and got a clear reply of No. It happens when he is having to concentrate or if he is agitated and can often carry on a lot of the night. Sorry no answers. All the best AliBee

[easterncedar]

Emotional incontinence is a common symptom of PSP. That may be contributing. My guy would sometimes moan and weep at movies. It passed.

[Marian_M in reply to easterncedar]

the "emotional incontinence" description in a way it is like that...

[pankaj911]

My mom suffers from PSP. She also had this phase where she would constantly groan, growl and moan throughout the day. Nothing ever worked for her and we couldn't really stop it. I did some research online and I guess they make this sound (albeit unknowingly) because of changes in their vocal chords. This continued for 3 months and then eventually stopped.

Sometimes, distracting them might work. My mom would always sing along songs and hymns if I played on our music system. Not sure what might work for your big man!

More strength to you....take care!

[Sonic47]

My mum makes wailing noises as well. We've got used to them now,and she sometimes does them in her sleep. Often they don't mean anything but they are upsetting, especially to begin with.

[Cuttercat]

The device mentioned is a GoTalk. Very helpful. Let me know if you’re interested. I can provide information.

My husband didn’t grunt but did moan. It’s very hard for them and us. Hang in there.

Cuttercat

[Baytalon in reply to Cuttercat]

Cuttercat, we are getting close to needing communication help. Can you PM me the info on Go Speak?

[raincitygirl in reply to Baytalon]

While you're waiting for Cutter, go online and check out the downloadable app "Go Talk" and "Go Talk Now". There is a free "sampler" version. You download onto your ipad.

Good luck!!

❤️❤️❤️. Anne G.

[LuisRodicioRodicio]

Hi Westerngirl!

6.5 years ago from the first symptom of the PSP.

From the 6th year the most elementary communication systems (Pointer pointing to a board with letters, nodding, using the thumb, squeezing the hand, pointing with the index finger, etc.) have been reducing their effectiveness quickly. The answers are more erratic and very slow. Deciphering a phrase can take 30'- 40'.

At the same time she has developed grunting or groaning sounds to indicate that she feels uncomfortable with something or that she wants something. She produces sounds until we can guess what it is about.

It is very stressful and exasperating for her and her caregivers.

We have not managed to improve this situation.

Sorry. Hugs.

Luis

[grafixapn]

There are a lot of unknowns when someone has PSP. My wife has what I call night terrors. She will scream, laugh, cry, talk and fight with I'm not sure who. Her doctor said that giving her some meds would most likely cause her to be more unstable and fall the next day. So at night I wear earplugs. I also have a machine that plays sounds like rain, and others, what they call sleep aids. Having a medical bed where I can raise her head also seems to help. The sad fact is in the end, there is little that I can do to stop all of it. PSP is a horribke disease. The fact that you are there I feel is the best medication. If you could swap places, what would you want? If you think about it, you will quickly say having your loved one's company. That is what you are doing, and I'm sure your loved one would agree. So stop beating yourself up. PSP isn't easy, and the only way to go foward is to take things one day, one second at a time. Things most likely won't get easier tommorow, but you have each other. I call it unconditional love. It's something you can't buy, but it's priceless.

If nothing else, just remember that you are not alone. We all have days that seem longer than others. Hopefully tomorow will be shorter and better. I call it hope. Without hope we all are lost.

Andy