PSP and holding breath

[Rustington]

My husband (diagnosed with PSP Spring 2020) holds his breath. It has been going on for some time, but is now much more frequent and distressing. It occurs mostly in the morning and evening (and can be as frequent as every minute), with the middle of the day being calmer. He can breathe if I remind him to, and if I am out of the room he can breathe by himself, but if left to himself it can go on for up to 1.5 minutes, resulting in a big gasp and of course blue lips! His neuro team don't seem to have encountered this before, it may be anxiety, and basically say the worst that can happen is he will faint and then automatically breathe!

He has also lost a lot of weight (a stone in 2 weeks) despite being under advice from the Dietician and Speech Therapist re fortifying and blending his food - he is eating very little. He has hardly said a word for a few days now.

Do you think we are coming to the final stage?

[Ginger3Gi]

Hi, my husband holds his breath, he has been doing this for about a year now. He was diagnosed February of this year, but has had symptoms of PSP since 2016. Like your husband, he mainly does it morning and evening but he does not go blue, but does resemble a bee with the sound that he makes! I have asked him why he does it and he says he is anxious, but he is not always aware of doing it. I have linked this to his getting washed and dressed and getting undressed again at night and getting into bed. We have just had a visit to Neurologist this week and she seems to be of the opinion that my husband has advanced stage symptoms, mainly due to his speech being so bad and his loss of mobility. Wishing you all the best.

[Runner333]

My husband has been diagnosed with psp in Jan. 2021. Symptoms starting about 1.5 years before that. He forgets to breath too and it seems to me that it happens when he has to concentrate on something. I have been on the search for exercises to help him strengthen his breathing muscles. He uses “The Breather” tool (ordered from Amazon) to strengthen his inhale and exhale and he does speech practice from the big and loud program. I am always on the search for something that will help. All the best!

[Stephanielayell82]

This disease has no true warning end of life is here. All the classic symptoms of death can almost go out the window. My loved one has had all the classic signs weight loss, loss of appetite, shorter breathing, tired and lethargic since December/January. The speech therapist can give you breathing exercises to try we have had no luck however. My loved o e is almost curled in like a turtle from losing the ability to keep upper body straight up serve leaning to left as just drawn her torso in which dosen't allow her to deep breath. When her lungs have been checked sometimes they are of infants level others teenage level. So try to have him sit firmly up if possible not slouched. Best of luck to you and yours

[Runner333 in reply to Stephanielayell82]

Thank you for your suggestion. We will work on posture! Good idea! All the best!

[Ange57]

Hi my wife uses an AST breathing trainer, it’s like a puffer you blow through but it has built in resistance (adjustable) it helps with her voice volume and cough when clearing her throat. Seems to be working we got it through our SALT lady who is marvellous. Hope this is useful

[Rustington in reply to Ange57]

Thank you Ange57, and to everyone who has responded (sorry, I can't work out how to do a general 'thank you'!!) It's comforting to know that he isn't the only one holding his breath! I will try the breathing apparatus suggested.