continuous sounds

[kumar122]

All,

While I have been following all the posts here, this is my first post. My mom has been diagnosed with PSP in 2020. She has been declining slowly since then. She has been chair bound for the last 18 months and we have also started seeing swallowing issues. However, what concerns me, is some kind of sounds she has started doing these days. I am not sure if its an attempt to clear her lungs or attempt to cough. When we checked her oxygen levels during these sounds, it was 98%. These sounds are more when she sleeps and I think she is unable to sleep peacefully due to this. I am attaching the video link if anyone has any idea on what this is.

youtube.com/shorts/vc0GwNQi...

[Zerachiel]

Hi, I believe vocalising can just be part of the condition but on listening to the video it does sound like what my wife does when she has phlegm in her throat.

We use a suction device with a yankuer to clear the mouth and the top of the throat.

The drug Carbocisteine can help keep the throat clear and Glycopyrronim to reduce saliva production. Botox injections can also help to reduce saliva production.

Also in bed, do not lie her on her back, use pillows behind her back to keep her on her side.

[Stella315 in reply to Zerachiel]

Hi so my mother started to do that as well and turned out it was what they called involuntary vocal tick which happens when brain atrophy compromises the frontal lobe. For my mothers there was no pain associated with it and I used a CBD gummy with low dosage of THC and they helped her manage it. I literally had to take her to 4 neurologists to figure the above. Please ask your mother if she is in pain. And feel free to contact me directly if you would like me to share more details about it and our journey to managing it. Sending you strength

Jessica

[Mel547]

My sister in law makes noises like this on repeat almost , it can go on for hours ! We’ve been told it’s involuntary and just part of the disease x

[45purple]

my husband does this but he roars a lot. Neurologist said it was a tick due to his illness. Also has the flem problem Carbocisteine doesn’t really help. Not easy to deal with 💜

[Martina_MP]

Yes this happened to my mom at a couple of different stages. In the first case, it was bizarre but lasted a couple of days on and off. It does not reflect discomfort and the person can’t help it. You can see it discussed as ‘purposeless groaning’ with PSP or Parkinsonism if you Google it. Later in the illness, she made a lot of grunting / braying noises trying to clear her airway, when she could not cough effectively.