Saliva pump

[VronB]

The neurologist has referred John to a dr for Botox injections. I've been hassling for an early appointment but have now been told he has been referred to St George's in London. Goodness knows how long that will take so please could someone suggest a saliva pump I could buy. Xx

[easterncedar]

Wish I could give you the one I have, VronB! I assume you have done all the atropine, hyoscine, glycopyrrolate trials?

[VronB in reply to easterncedar]

Yes. He’s choking and coughing. It’s incredibly noisy not like a normal cough at all. He’s in a bad way mentally as well so can’t follow simple instructions. I’m at my wits end as I don’t get any break at all at the moment but it is promised.

[Satt2015]

Bless you Vron, sorry I don’t have an answer

If it’s Dr Paviour then you could get a private referral (probably about £250) to see him urgently, I know he is now based at St. George’s but he could probably see you somewhere nearer initially........x

[VronB in reply to Satt2015]

I’m paying out so much. I will ring SALT I think. We’re in a nightmare situation at the moment John keeps on getting and falling and now he can’t follow instructions to get on his front. His head is full of bumps and cuts. Xxxx

[easterncedar in reply to VronB]

I was there. It is awful, but it won't go on forever, truly, although at the time it feels like it. The suction machine helped some for a while, but it was the drugs that got my guy through the worst of that horrible loud gagging and choking cough. The falling, oh dear. Nothing helped with that. Love, hugs and strength to you, VronB!

[VronB in reply to easterncedar]

Thank you. I have hurt my neck and shoulder and it’s making me very down I can’t get to physio because I can’t leave John. I truly hate PSP! Xxx

[terryswife in reply to easterncedar]

Hi there - my husband too has loud gagging fits and unproductive choking cough which go on for hours. He has been provided with a suction machine which helps a little and uses Atropine drops to dry up the drooling. He also has the use of a 'cough assist' machine which he uses several times a day but no drugs as such at the moment. The gagging and choking is very distressing (for both of us). What drugs were your partner prescribed. All the health professionals we deal with at the moment tell us very little is known how to treat this condition!

[VronB in reply to terryswife]

He has been using Atropine and it has proved very successful but unfortunately is no longer coping with the copious amounts. It must be a huge strain. Xx