I am very new to this Forum, and the world of PSP. My husband is 49 years old and having had Parkinson's Disease for around 8 years, he's now, very, very recently, had a diagnosis of PSP.
After a second serious bout of pneumonia he's now in a situation of having to breathe via a non-intrusive ventilator and the hospital say his chest muscles and lungs are very weak, and they expect him to come home with such a ventilator, as he can't manage more than a very short while before either his sats drop, or alternatively his sats stay in the high 80/90s, but his chest doesn't move and he appears not to be able to breathe at all well, and he starts to turn a deep redish colour - which is very scary indeed. Infact last Saturday his sats dropped from 92 down to 11 in a matter of a minute, and his face turned navy blue, luckily the chest physios were on the ward and came to vibrate his chest and suction up some mucus (due to the pneumonia) and eventually his sats came back up to the 90s again.
I have been informed by the medical staff that the PSP is the root cause of this in terms of the brain and the nerve damage basically telling the lungs to stop taking a breath.
They are also suggesting a PEG as they believe it is in his best interests to have one fitted now, so as if/when the time does come it's there and ready to use. He was coping with pureed food and thickened liquids so they say he can keep doing this until he needs to go to the PEG, however in recent days he has lost appetite and is only eating a small amount of weetabix for breakfast and then just yoghurt for lunch and dinner.
However I wonder does anyone have any advice they can give to me, or if they have had any similar issues, concerning the breathing issues, and the weakened heart/lung muscles?
Other than that, he's had many many falls over these years, has had Photo-phobia for at least 2-3 years, and his speech has virtually gone, he was previously whispering at times, but now he tries to do this when off the ventilator but no sound comes out. Re mobility he's been bedridden in hospital now for almost 6 weeks, and previously to that was getting as he was more or less confined to a wheelchair, as he was struggling on his rollator until February this year (2012). He tries to write on an etch-a-sketch, but now appears to have not only tunnel vision, but double vision too, and the ventilator mask means his glasses don't really fit him, and he can't stand the alternative masks.
Also he's now getting really very aggitated and confused also, but I'm wondering if this is due to the pneumonia. Today at the hospital has been particularly trying as he hadn't a clue where he was, why he was there, and why he couldn't come home. All worked out via me trying to lip read what he was trying to speak (very frustrating for both of us).
I hope to hear from anyone who can offer advice, or even a friendly ear, as I'm feeling pretty much isolated at present, especially due to our ages and this particular issue. Oh and just so you know I'm based in the United Kingdom (Staffordshire area).
Thanks for listening to my rant!