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!
Kindest regards.
Fiona
Written by
klimmy04
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Although I cannot offer you any advise regarding your husbands breathing problems, I certainly understand your isolation and grief. My Father is 75 and was diagnosed with PSP and MSA about 5 years ago. The disease has progressed very quickly. He can no longer walk, talk and battles to eat as well. We are also currently contemplating having a PEG inserted, but the worst thing is that he cannot communicate with us to tell us if he wishes it or not. The last thing we want to do is prolong his suffering, but we don't want to lose him either.
Please feel free to rant. I have found a lot of support through this site, and just knowing that there are people out there that I can relate to and share with, has given me the strength to deal with my grief. You and your family are in my thoughts and prayers.
I'm so very sorry to hear of the problems your husband is having at the moment, especially as he is such a young man (just a year older than me!!). It must be so incredibly difficult for both of you.
I'm afraid I can't give you much advice but I can certainly be a sympathetic ear or a shoulder to cry on should you need one.
As a physio myself I would say that if your husband is still requiring chest physio and suctioning in hospital he is not ready to come home yet. I would also suggest you talk to the physios and ask them to teach you some positioning techniques and how to vibrate his chest so that you can help him in clearing his chest. Is he able to cough at all? If he has a weak cough they may have something called a "cough assist" device which is less invasive than suctioning.
I would also suggest you contact the specialist nurse from the PSP association (contact details available on the psp website pspeur.org) who might have some other ideas and will be able to discuss the pro's and con's of having a PEG fitted.
My one question I would ask of you and the entire forum is WHY is your husband being allowed to leave hospital when he is clearly in need of expert medical care? With all the best will in the world, you are not going to be able to help him. It takes me back over 10 years ago when my sister was at home dying of breast cancer, the district nurse left my brother-in-law a botte of morphine and was told to give it to my sister when she was in pain. Sorry, but a true story.
I wonder what the medical profession is there for sometimes. Seemly very few doctors know of PSP, as far as most other health professionals are concerened, if they know anything at all about it they only pay it lip service, thank goodness for the psp nurses on the forum who are enormously helpful and supportive.
I am truly sorry for you and wish you all the luck and support in the world.
I can only be a sympathetic ear, but advice and comments from other members seem to have helpful and practical advice, I wholeheartedly agree with Dorothy and Kathy. x
Fiona, I dont have any sage advice for you, I sure wish I did. 49 is INSANELY young for psp....this disease has no rhyme or reason. Please take care of yourself too!!
We have had contact before but you seem in need of some more support right now. It sounds like you and your husband are going through so much at the moment and have alot of issues to discuss, it must so difficult for you right now. Please give me a ring when it is convenient for you on my direct dial number 01995 601533 I am at my desk during normal working hours Mon-Fri but if it is outside these times leave a message with your phone number and I will get back to you when I am back at my desk or email me on kat.haines@pspeur.org and I can hopefully give you some further support and guidance.
Fiona, I've heard that once a PEG (feeding tube) is in place it is almost impossible to have it removed once in use. This means that a PSP individual might wish to "pass on" but the PEG is keeping them alive and in agony due to inability to communicate and other PSP issues. I'd check and make absolute sure that if you or the family decide to let your lovedone pass on you can have the PEG removed. Perhaps others can verify this information for us both.
Thank you so very, very much for your comments, and advice.
Since writing my original posting, my husband has had the PEG procedure and it is now in place. He has started to be fed by it, and has also managed to eat a little bit of food too - which is fantastic - his weight had dropped further but I am hoping that with this PEG he will start to get some of the nutrients he needs, as he's only being fed via the PEG for a couple of days now.
He even managed to whisper just a few words (just one word at a time with a little rest in between) to me too, which was fantastic.
I would just like to say that for once after reading the postings each and everyone of you have made, and a telephone conversation with Kat, for the first time in ages I feel a little less isolated. I feel like saying "Hurrah" as there are other people out there in this world who realise what I am going through, through their own experiences. Thank you so very much.
I hope to be able to contribute to this Forum more often.
My kindest regards and very best wishes to you all.
My heart goes out to u both. I agree that there r many times when we feel alone. Have you had any contact with the community nurse? I also learned that Macmillan nurse can give support. The hospital can make contact with the community nurses for u. I have also learned that the word no can sometimes get positive results. We have to say no sometimes for the sake of our husbands/loved ones. Sorry I have no answers it does seem that being in different health authorities can be very much like a lottery.
my dad is exactly the same as your husband and has been in hospital for 9 months. We are in the progress of getting him home through social services with 24 hr care but this has taken months of upset/stress to all of us to sort out.
However my dad has a trackitomony, he breathes by self during the day and night and goes on a bit of warm air/humidification during the night to make his secretions not as thick and easier to get up.
Occasionally during the night his stats have started to drop to 20/30 from in their 90's but once he has been bagged, cough assist and suction his stats have come right back up.
I don't really know how to reply except to say it sounds as if you have done a remarkable job so far. I don't think any of us know what to expect next as each PSP sufferer experiences this dreadful disease differently. All I know is that I/we do the best we can including trying different things to see if they help. I also know that feeling alone is what most of us feel. I think this is because for many of us PSP lasts a long time, in our case we are in the tenth year, and friends and family can only give support for a short time. They have their own lives. Sorry this sounds so defeatist, I am just going through a low time at the moment. I sympathise with you and hope things improve.
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