Breathing Problems

[Birdman42]

Hi Everyone - Although I read the posts to the sight, particularly the diagnostic ones, I am not a social animal and do not join in myself. However I really could do with some advice. My wife, Margaret, was diagnosed a year ago with PSP, as usual misdiagnosed for at least three years before that, she uses a wheelchair, her sight is failing and she can only speak very quietly. Margaret has now developed breathing problems. We had a discussion, over the phone in this Covid-19 time, with the PSP specialist’s assistant and I described Margaret’s problem as ‘panting’ particularly after eating. I thought it was probably muscular therefore classic PSP but she disagreed and referred us to the GP. The GP found nothing and her blood oxygen level was 99 which is good, he now wants to refer us to respiratory specialist. If I changed my description to ‘laboured breathing particularly after eating’, which is probably more accurate, would you agree with me that it’s the dreaded PSP?

Hope you can help. Alan

[Hidden]

Looked up labored breathing after eating on google and got this:

The two most common conditions associated with shortness of breath after eating are gastroesophageal reflux disease (GERD) and chronic obstructive pulmonary disease(COPD). GERD is a digestive disorder that affects the band of tissue (sphincter) that separates our esophagus from our stomach.

[Birdman42 in reply to Hidden]

Thanks Jeff166 I will look these conditions up

[NannaB]

My husband had periods when he would appear to have difficulty breathing. Not after eating but at other times. It always settled after a while so one day I filmed the episode so I could show the GP. He called it a “neurological blip”. One day when I went to collect my husband from the day centre at the hospice, he was having a blip and they had put a tube down his throat and were trying to suck something out. He was very distressed. They said they were preparing a bed for him to keep him in. I told them to remove the tube, if nothing had come up there was nothing there. I had to get quite assertive and told them I was taking him home as this would not last. They insisted a nurse went with me. He had started breathing normally again before we even got to the car. It happened fairly often and I found that speaking quietly to him and telling him he would be OK, calmed him and settled breathing down to normal again.

XxxX

[Birdman42 in reply to NannaB]

That was really helpful NannaB I have been doing something similar when Margaret has problems. Glad I am on the right track.

[Bhakthan]

Try to connect her to an oxygen cylinder on a permanent basis. My wife had the same problem and the oxygen cylinder helped, despite the good oxygen level. The muscles of the body start failing one by one. All the treatment of the world cannot help, if it's truly PSP. We did everything we could, but to no avail! The neural network of the brain had already snapped, which caused all the problems. A good neurologist who can repair the brain and it's shrinkage is the only solution. All others are superficial.

[Birdman42 in reply to Bhakthan]

We don’t use an oxygen cylinder yet but we will bear that in mind. Thank you

[Richard33]

Ruth (who has CbD) finds breathing laboured when she lies flat on back and it can be at other times too. I think it is just an effect of the disease although it is not a usual symptom.

Richard

[Birdman42 in reply to Richard33]

Thanks Richard

[Heady]

Sorry Alan, not anything I came across. It won’t hurt to get her checked out with a specialist, but I agree, it probably is PSP. The message isn’t getting through from the brain to breath properly. Trying to swallow and breath at the same time, is, I suspect, causing a slight panic. Keeping her calm during an episode is probably the only answer and giving her time to breath in between mouthfuls of food, if you are feeding her yourself.

Sending big hug and much love

Lots of love

Anne

[Birdman42 in reply to Heady]

Thanks Anne I will continue with the appointment

[daddyt]

It sounds like the muscles that control breathing aren't working at their full capacity - mine are not, as evidenced by a pulmonary function test. The respirologist who has some knowledge about PSP, said this was disease related.

Tim

[Birdman42 in reply to daddyt]

We’ll see what the respirologist has to say. Thanks for the reply

[AJK2001]

Yes we did see this with Mum. The Community Matron used to listen to Mum's chest on her regular visits to check Mum's chest was clear of infection and said she was only breathing in the top part of her lungs due to as Tim says the muscles just not working properly. Then every so often she would literally "pant" for a short while and then return to her normal breathing. Her oxygen sats were always OK, so no-one worried about it and we just accepted it as one of those things.

If it doesn't distress her to go for tests there is no harm in following up with a respiratory specialist but there came a time with Mum when I had to pick & choose which appointments we attended as the effort to go and the recovery time (days) was not worth it in some cases.

[Birdman42 in reply to AJK2001]

We arestill at the stage where Margaret is prepared to go to all test to try and get some relief. Thanks

[HilsandR]

Good that you’re getting it checked out but it sounds like another unwanted gift from PSP. My husband had something similar, which would strike at any time of day but most often on waking, when he’d say he couldn’t breathe and would get panicky. It never lasted long and talking to him calmly always helped settle him. It disappeared after a few months only to be replaced by something else. Hang in there and drop in on here when you need a bit of support - there’s always someone ready to help.

Best wishes,

Hils

[Birdman42 in reply to HilsandR]

Thanks Hils I don’t know who worries more sometimes me or Margaret.

[HilsandR]

Completely understand. Just don’t feel alone because everyone on here has gone through/is going through the same challenges so we all absolutely ‘get it’.

[Katiebow]

Ben didn’t have this problem but I suspect it is probably the messages from the brain not working properly. I hope you get to the bottom of things so that you can help her to be more comfortable. It is a wretched disease.

Sending love

Kate xx

[Birdman42 in reply to Katiebow]

Thanks Kate

[Baytalon]

My husband has had this problem for the last 5 days. His hospice nurse prescribed Atavan to relax and bring the breathing back to normal. He also uses supplemental oxygen at night and when he has one of these episodes and we are waiting for the Atavan to kick in. Steve has been fighting PSP for at least 5 years...he's 4 from diagnosis. We saw his PCP today to be certain it wasn't his heart that was causing the issue. It isn't.

[Hidden]

I have not been diagnosed with PSP or MSA, but have similar symptoms with dystonia, a secondary type. It often accompanies atypical Parkinson's or Parkinson's disease. Many muscles can be affected and I have a type that is in the middle part of my body so it affects digestion and swallowing as well as cranium, face and neck and makes them stiff as well as slow digestion so the esophagus muscle. I notice myself panting and after eating when it feels becomes stronger. I am on levodopa which seems to relieve the stiffness. When L-dopa wears off breathing is off too. It's worse in the morning before my dose and worse at night I so I associate it with off times even during the mid day. Maybe the diaphragm since it's a big muscle?? Possibly your wife has dystonia too.