Suggestions on dealing with the coughing f... - PSP Association

PSP Association

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Suggestions on dealing with the coughing fits each evening and night caused by saliva slipping down the patient's windpipe.

MelvynS profile image
18 Replies

My brother-in-law Victor has PSP, and I do what I can to support my sister. Victor is in quite an advanced state of the disease, being totally immobile, on a PEG feed, and unable to communicate at all. In many ways Sylvia is fortunate insofar as she is on NHS Continuing Care, with carers visiting three time a day to change and wash Victor, and get him in and out of bed night and morning. She also has someone staying overnight. The main challenge in recent months has been balancing his various drugs for suppressing saliva and preventing constipation - Sylvia has a better handle on this than the medical staff who do not see him day-to-day. He produces a great deal of saliva which slips down his throat and causes awful bouts of coughing. He has had botox injections which didn't seem to help, and has patches that suppress it to some extent. Sylvia also has a pump device that sucks saliva out of this mouth. Victor has been into Hospital twice in the past six months, once with aspiration pneumonia (reportedly due to food coming up into his mouth and going into his lungs) and once with terrible constipation - the drugs to dry up his saliva had been too effective and dried up all his bodily fluids. Looking back over the entire period of his deterioration (which must be about 7 years since the initial signs of his condition emerged), the task has been to cope with the changes in his condition and responding to each as it arises. The GP has been of little help, and the best advice has actually come from Hospital medics and from the local Hospice Nurse who has had Victor on her books for a couple of years. Because every patient is different, and medical staff see few patients with this condition, the next-of-kin really has to be on the ball as the condition changes. All in all, this puts enormous strain on those looking after a loved one. There can be few more difficult challenges to cope with.

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MelvynS profile image
MelvynS
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18 Replies

Dear Vymnel,

Your brother in law seems tobe at the exact same stage as my husband, Geoff.

Geoff has atropine eye drops on his tongue to dry up his saliva, this seems to work better than the patches ever did!

My biggest problem is that he fights all the time, fights his PEG, climbs over bed rails, when he had a falls matress with a matress on the floor next to it he would climb out and try to pull it into the bed! We are well known to all the local paramedics and a and e wards in hospital because he always goes in with head injuries.........I would love some advice from anybody of what I can do.

Keep smiling,

San x

gloriashwaizer profile image
gloriashwaizer in reply to

You should buy him a hospital bed.

cabbagecottage profile image
cabbagecottage in reply to gloriashwaizer

Our hospital was arranged through the district nurses . I has asked if he could have an air cushion , I know they will dio their best

MelvynS profile image
MelvynS in reply to

Thank you for your suggestioin. We had heard of atropine in this context, but were having some difficulty persuading a reluctant GP. Your reply has encouraged me to have another try. Best wishes. Melvyn

There is medication for the control of saliva but the name escapes me. The PSP advisers can let your GP know about this-it really is a tiny half tablet and is a miracle worker. It is a crucial point of intervention so do ask , they are here to help!

Dianne

cabbagecottage profile image
cabbagecottage

Tha GP prescribed Kwells for my husband saliva control but after taking only half of a tablet he was seeing fairies!! I believe it contains Hyasine not sure of spelling .

I was have very sleepless nights getting in and out of bed to help clear his throat manually , I must keep the tissue companies in business lol

Tried using Robitussin as he gets into bed and bingo it's much better .

Just one dose has certainly helped a lot in our case .

I tilt the bed backwards but raise is knees and shoulders so he is sat in a dip .

It doesn't sound as if my husband is as far advanced SO FAR . Do Hope this help in some way .

MelvynS profile image
MelvynS in reply to cabbagecottage

Thank you for your reply. Yes, we have difficulty stopping Victior slipping down the bed. We will give Robitussin a try. Best wishes, Melvyn

easterncedar profile image
easterncedar

My sweetheart is in early stages, but a dose of pseudoephedrine antihistimine keeps his night-time coughing at bay. This is probably not helpful to you, since I suppose his problem is caused by post-nasal drip rather than excess saliva, but I thought I'd mention it.

MelvynS profile image
MelvynS in reply to easterncedar

Thanks foir this. Victor's problem is indeed excess saliva. I wonder if the pseudoephedrine anitihistamine would help? Your reply implies that it would. Best wishes melvyn

easterncedar profile image
easterncedar in reply to MelvynS

Sorry I was unclear. I don't know if antihistamine would help with excess saliva; it does help, a lot, with the night coughing caused by post-nasal drip.

MelvynS profile image
MelvynS in reply to easterncedar

Hi. Following your posting, we are going to try Actifed. This seems to fall into the category of pseudoephedrine antihistamine. Thanks in anticipation!! Best regards, Melvyn

easterncedar profile image
easterncedar in reply to MelvynS

I hope it helps. Please let me know!

MelvynS profile image
MelvynS in reply to easterncedar

Hi. Since we started sleeping Victor on his side, the problem of coughing has definitely eased so we have not had to resort to using Actifed yet. I will indeed let you know how well it works once we use it. Best regards, Melvyn

easterncedar profile image
easterncedar in reply to MelvynS

Thanks, Melvyn. Good to know that a change of position can help! My best wishes to you and your family, EC

joeprimeau profile image
joeprimeau

I am new at this and do not know what PEG means ? Also there was a mention of PSP adviser ---I am in Canada and would wonder how to contact an adviser.

God bless you all in your endeavors Jos..

MelvynS profile image
MelvynS in reply to joeprimeau

PEG means percutaneous endocopic gastrostomy - basically, a tube placed surgically into the stomach so that liquid food and medicines can be introduced directly into the stomach. In the case of PSP, one is used to overcome problems with swallowing. On the reference to PSP ASdviser, I assumed that the writer was referring to one of the team employed by the PSP Association. We have also been advised to contact the local "Parkinson's Nurse" for help, but have yet to do so.

laroux profile image
laroux in reply to joeprimeau

Hi, I'm also in Canada , I am wondering about that med for the drooling, I think we may be able to get info from the PSPA web site, there may be email contacts. Other wise the neurologists can be helpful. I deal with the Foothills Hospital neurology department in Calgary.

My husband has PSP and he can't stand the "slobering" as he calls it. As far as support goes, this site is amazing, not much offered in our part of the world, eh? ( had to add that! hahaha!)

Joan

deew profile image
deew

Hi Joan (laroux)

I'm with you,not much support for us as far as PSP goes.We live in Creston BC about 5 hours from you.I have pick up a lot of tips here .

Thank you all.

One day at a time

Deidre

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