Hello, My dad has been suffering from PSP for about 7-8 years he was officially diagnosed in 2011. He has developed a cough...

[jessybx19]

which has increasingly become worst. my theory is that is choking on his saliva but can it be something else? It is very loud and at times is a an extended cough and mostly at night. we sit him up put him on the side and nothing seems to help much. He doesn't sleep and much less my mom (who takes care of him) due to this cough. is there any remedy for this? we have tried cough syrup and doesn't help.

Issues #2:

He has also developed bad order in his genital area. we constantly clean him but doesn't seem to help. can this be related to PSP or seborrheic dermatitis, which i think he has also developed.

Not sure if he may be in the advance stages of this illness but any information would be much appreciated and welcome.

[peterjones]

hi jesse19 well the first part of your question I might be able to answer I think does your dad eat biscuits or have a meal late in the evening if he does it mi9ght be the crumbs annoying him at night making him cough when he lays down if it is excess mucas \please try dark grape juice it shoiuld break the mucas up and give your dad and you some peace and its a pleasant drink anyway the other end of the scale I cant help you with but theres plenty of knowledgeable people on here good luck let me know if your dad settles down ok peter jones queensland Australia psp sufferer

[peterjones]

hi jesse 19 the first part of your question I maybe able help you with does your dad like a biscuit or have a ]=meal fairly late in the evening if hje does==the crumbs might be annoying him later when he has laid down for the night thats what used to happen o me if it is mucas then try dark grape juice it will not harm him unless he is a diabetic then check the sugar content

its apleasant drink anyway you can get it from the grocery store or woolworths or coles depending on where you live good luck with that please let me know how you get on the other end of the scale I cannot help you with but there is a lot of knowledgeable people on here someone might come up with something all the best peter jones queensland Australia psp sufferer

[nigelvaughan]

It sounds like your Dad is exhibiting "explosive coughing", which is part of the progression of PSP. The speed of the degeneration seems to vary according to the person. Apparently in PSP the swallowing reflex is affected and that leads to the problem with the saliva and coughing. In the case of the person that I have been involved in the care of the speech therapist was brought in to examine the difficulty and she came up with a series of dietary changes, which included pureeing food and avoiding certain foods that can be drawn into the lungs during coughing and so lead to aspiration pneumonia, which is the real danger. So, may I suggest that you consult the doctor to see what can be done to help. In addition to the food that is eaten we found that the coughing was exaggerated by stress and strain. So, keeping the situation calm and making sure that the PSP sufferer does not become overly strained is important. I hope that helps. Nigel.

[Hidden]

Hi Jesse 19, as Nigel says, your dad may be experiencing coughing due to changes in his swallow. You may find it helpful to have a look at section 1 of the PSP Association's Personal Guide to PSP. This contains a section on swallowing problems. You can find it on our website here: pspassociation.org.uk/getti...

Very best wishes

Liz

[Hidden]

Dear jessybx19,

My thoughts on your Dad's situation is that you should check out with his doctor about something called 'silent pneumonia'. My father was not well for a good few weeks with a cough and although I was aware of it, he was in a nursing home and so I thought that they knew what they were doing and did not insist on a doctor's visit, but shortly this developed into need for admission into hospital with pneumonia proper. I had never heard of 'silent pneumonia' ,also I think that sometimes with PSP the sufferer does not register a temperature with low grade infections. Because of your post, which rang bells for me, I have looked up about 'silent pneumonia' again on WebMD.com and it says on there that this condition is caused by a bacteria called 'mycoplasma pneumoniae' and this can enter the lungs from inhaled food. It goes on to say with this condition some people also can have and ear infection,anaemia or SKIN RASH.It also mentions explosive coughing.

Perhaps you should check this out urgently. My father died shortly after this with a second episode of pneumonia.

[easterncedar]

Regarding the odor problem, I don't know if this might apply to your father, but some drugs given to psp patients and others for incontinence make the urine smell quite powerfully awful. If there's anything to be done about that, I don't know of it!

[jessybx19]

Thank you all for your response. I will continue to consult with our doctors. even with professional help this has been such a difficult journey since many of my questions often remain unanswered because many doctors are not familiar with this disease.

[groovychick]

Please get this checked out ASAP if you haven't done so already. Aspiration pneumonia is critical and it took my dad away from me. It's silent and progresses so the sufferer doesn't even know it's happening half the time as the cough reflex gets weaker with PSP. Food ends up going into the lungs and creates bacteria which leads to the infection. Each bout of aspiration pneumonia Knicks down the PSP sufferer a lot and by the third and final bout dad gad no fight left in him. Please let us know how you get on xx

[nomansland]

as my wife was suffering this continuous cough also ,she is on a peg tube,and has been for 2 and one half years,I tried a spray(mist,one shot) in her throat once or twice a day of benzydamine oral rinse and it has made a big difference ,again in her case,regards,rollie