Breathing issues

Hi. My dad is in the early stages of PSP and over recent months he has had breathing issues.

He can be sat watching TV relaxing and the difficulty starts. He pants & struggles to take a deep breath and speak. This can last for 10 minutes to over an hour. According to the gp his is not asthmatic, his chest is clear and the consultant says that it's nothing to do with the psp.

Has anyone else's loved ones experienced this?

Thanks

PJ

37 Replies

oldestnewest
  • I'm sorry to hear of your father's difficulties, PJ. It must be very distressing. That said, I haven't seen anything like that in my guy nor have I read any posts describing such symptoms, although PSP attacks on so many fronts and varies so from person to person that it's impossible to dismiss almost anything as potentially psp-related. Your doctor will have confirmed that there's no heart trouble involved, I assume.

    I hope someone comes up with a useful answer, but I didn't want you to wait too long for a first reply. I'm glad you asked; the questions that are hard to answer often bring up the most useful information from the community.

    Best wishes, Ec

  • No George has not got anything like that, so sorry can't help you on this one xxxx

  • So true ...If question is not asked then patient continually suffers....

  • Thank you both. The consultant said it wasn't related but just wanted to ask. My parents are going to the gp next week so they can push this a little more with him.

    Dad did have a quadruple bypass 23 years ago but was informed fairly recently that his grafts were perfect so we are happy that it's not heart related.

    Thanks again ladies

    Pj x

  • My husband had difficulty with breathing ////g however it was due to the inability of the brain stem (autonomic resonse) to communicate with the lungs...for you it may be different...ask your neurologist his opinion...Speech therapy may ber a good way to go....it does nto cure but it may help the pateint figure out how to breathe try it.......

  • It was the neuro consultant who said it was nothing to do with the condition. I am not yet convinced of this. We will persevere with the gp and see how he goes. Thanks

  • The nurse did say that Bruces lungs were clear........however when I sent him to the hospital the same day , they found that his his left lung was fully encompassed by pneumonia....

  • No, my Dad had PSP for 3yrs and never once had a breathing problem? I don't think it's related?

  • My husband has had PSP for 8 years and we have never had that problem.

    Tillyhugs

  • I have noticed that sometimes John's breathing is very noisy. He is not struggling for breath but almost as if he has run a race. Sort of fast breathing through mouth. SALT have referred him to respiratory dr. I'll report back. Xx

  • Hi. Dad is a bit like that. Very short of breath as if he has just been exerting himself but he is sat down. He does that pant gasp through his mouth and nothing via his nose. I will get mum to ring the salt team on Monday.

    Thank you xx

  • Hi VronB, you have just describe my husband's breathing, he was diagnosed with PSP just over 2 years ago. His GP referred him for cardiac tests, and he has just one more to go in 2wks time. If these are clear will ask for him to be referred to respiratory Dr. So glad you posted. Love Nanny857xx

  • We help each other as we can. I've learnt loads from you guys. Xx

  • Does he nod off to sleep whilst watching TV and then difficulty with breathing follows?

    My husband has PSP and was diagnosed whilst having investigations for that with sleep apnoea. He uses night (or daytime) CPAP .

    Maybe worth a check.

    Xx

  • Hi. It isn't in sleep. He is definitely awake and he saw the sleep team last year as part of his psp diagnosis so we know he is ok with that at the moment

    Xx

  • My wife has also some respiratory problems; And to me it is clearly related to her PSP.

    In her case PSP generates muscular control problems for all functions in the higher part of her body: respiration, elocution, vision, deglutition (is it an english term?) and swallowing problems (referred to as "fausse route" in french!) etc....

    This problem of controlling all kind of muscles is really typical of PSP. In the case of my wife it applies to all kind of muscles but specially the ones at top of her body.

    We tried everything in terms of drugs until I realised problems were not related to a specific problem but just a muscle control problem.

    That being said, except for a few hallucinations time to time her brains reasoning and memory are intact. Usually much better than mine in the case of memory; And some people claim it is also true for the reasoning! But I think they just pull my leg!

  • Hi. Dad has the speech and swallowing issues so this could be similar to your wife and it is effecting his breathing muscles. My parents are seeing the gp next week and they can dicuss this further with him

    x

  • Yes. When someone says a symptom isn't psp, I am always doubtful. Our neurologist took the opposite view and used to say if there was a problem we should test and see if it might be caused by something that could be treated before we ascribed it to psp. Psp attacks everyone differently to some extent and attacks on so many fronts. It makes sense that breathing would be affected as you describe.

  • I just want to say thank you to everyone who has replied. The information has certainly given us something to think about. My parents are seeing the gp next week so they can discuss this further and I think its definately worth contacting the salt team for further discussions. I will update you all when we have had their feed back

    That's again Pj xx

  • Hello PJ. PSP will affect people differently. In my case, I would agree with @loustalet, it can affect muscular control problems associated with breathing... and it has with me. I was referred to a respirologist a few months ago because of some breathing concerns over and above my sleep apnea for which I've been using a CPAP machine for well over three years now. The testing results- my lung capacity is fine...no lesions or anything out of the ordinary worry about. No asthma or other concerns that way. The problem... the muscles that control my breathing- inhaling+exhaling according the testing, are only working at 38% and 42% respectively of what they should be. The respirologist said this is directly related to my PSP and the weakening of the relevant muscles including those required for swallowing... and most of here know all about that.

  • Could it be a panic attack? I have never had one, but I believe they can start at any time for no apparent reason. Although I imagine these episodes panic all of you!

  • Let me know how you get on. Perhaps we've found another horrible PSP symptom! Xx

  • I will keep you updated x

  • My husband pants a lot. He had a special piece of equipment to ware on his finger last night so they can see how he is breathing at night , most peculiar.

  • We have an oximeter to check his stats and his oxygen levels are good at 96 to 97 percent so he isn't struggling with oxygen. Its quite distressing to watch and not able to assist. I am asthmatic so I understand what it's like not able to get your breath.

  • Dear PJ

    Charles does this as well. We have him on oxygen and it helps. He is in the last stages of PSP.

    Cuttercat

  • Thank you for your reply. Sending you hugs and strength to deal with this darn illness xx

  • My husband has episodes of panting as well, most peculiar and he seems totally unaware of it. He was diagnosed in January after a backwards fall landed him in hospital. 😟

  • I think it will turn out to be another psp symptom. I do hope that your husband has recovered from his fall.

    And I will let you know how things progress with our breathing investigation

    Pj x

  • My dad has had this issue with breathing as of late. I noticed it when he got very worked up and aggravated (he has this paranoia issue about my mom having a boyfriend - which is obviously not true...probably a side effect of being on carb/levo for so long?). He was adamant that all the nurses were telling him about my mom's "boyfriend" and then clenched his fists and breathed harder and then just stopped. My mom and I got up from our seats and I was patting his back hard, calling to him. We called the nurses (he's currently in a facility) and they patted his chest and called his name and then he resumed breathing again. He's been doing that off and on. The hospice agency told us we should just "let" him not breathe...and not do full code...but this just makes me frustrated and angry because it's not like it lasts for a long time and he always starts breathing again...but this sure is a scary thing to deal with so I feel for you. Sigh. The many ugly faces of PSP that keep showing up.

  • Oh, so you did go home. I think if your father is holding his breath in rage, he will start again as soon as he faints, which will happen if he keeps it up. I'm not saying it's good for him to go that far, but I also don't think it causes a great deal of harm. People faint all the time, make themselves faint, too. Try to relax about it as much as you can. Take care, ec

  • I was home for 3 weeks in February, but now back in HI. My mind and heart I constantly across the ocean in WI though. I helped my mom pack some stuff for the house...she's supposed to move at the end of May into an apartment so we can sell the house. It's very bittersweet but she's not handling it very well. Didn't want me touching any of her stuff or my dad's (clothes, anything in kitchen, basement or garage). Said everything is from years and years ago...since they came to America together...so I respected it but am also worried how it will be in May when I fly out there to help with the move. She hasn't really started her packing process and there is a LOT of stuff to go through...I packed all the family photos and I'm glad I was the one to do it. It brought me to tears. My dad was always superman. To see his old photos from just a few years ago to how he is now...just hurts. I just keep praying for grace, for His mercy.

  • Yes, moving from the family home hurts. We had to help my mother do it after my father died. She was tough about it, and is content where she is, but can't bear to drive past the old neighborhood any more.

  • My husband,diagnosed with PD 8 yrs ago,andPSP 1 yr ago,has lots of breathing issues.His breathing is labored most of the time.He "growls" with each exhale.He sometimes holds his breath as in sleep apnea(which he does have,he uses a CPAP at night) ,but in the daytime when he is awake.I am constantly telling him to breathe,and when I remind him,he does,it comes out in a burst.

    I am tired of neurologist telling us things are not related to the PSP when to me clearly they are.Neurologist said his incontinence is a prostate problem.

  • Same here. Neurologists would tell us these symptoms not part of PSP....obviously they are! I think maybe because there are very few who have experience with PSP. My dad had incontinence issues too so they put him on medication to help with it and he took it at night. After a while didn't need it anymore. These symptoms - new ones will pop up and some may go away but then are replaced with new surprise ones.

  • You are right there!

    My husband has just begun the medication for the incontinence and I am beginning to think it is helping with the frequency.

    Maybe the neurologists need to be reading these forums.

  • Pj

    My mom has psp. Same breathing problem, like she is running a race then she calms down. Its been going on for several months if not a year now. When it first happen her oxygen level was checked and same as yours OK. Mom other symptoms blurry vision, red eyes, very light-sensitive, involuntary jaw movement, extramarital swallow problems. We communicate with figure movement answers to questions.

You may also like...