Dorothy-Thompson Has anyone got any advise for controlling saliva, preferably complimentary or alternative medicines rather than eye drops?

[dorothy-thompson]

[MaddyS]

Hi Dorothy

My husband takes 10mg of Amitriptylene, one tablet before going to bed. It works well. It dries the mouth a little and seems to give him a good nights sleep in the bargain. The neurologist prescribed it.

Take care, maddy

[carolinesimmons]

Of the 10 medications my husband takes (only 2 for PSP) the only one that I can tell that he gets a good response from is the one to help him manage his saliva. It is a transdermal patch for Scopolomine. He wears it behind his ear on the skin that has no hair on it and it is changed every 3 days. If he doesn't have it on, he will begin coughing so hard and choking on the fluids that he cannot manage. He has been unable to swallow for over 1 1/2 years and is on a JPEG tube.

I think in the UK they use something different - Hyosine. In my notes that I have taken from this and other sources, I have written down that amitriptyline and atropine drops (under the tongue) also help manage saliva. We have only had the patches. The hospice doctor thought we were taking it for nausea (I guess that is its normal use) but our speech therapist suggested this over a year ago. I think it is expensive - maybe $10/patch. But it is absolutely necessary.

Hope this helps!

[Kathy]

Hi Dorothy,

You can try pineapple juice or papaya enzymes (available at most Health food shops) for short term relief.

[JoJo-K]

Hi Dorothy

Here in the UK my mum tried the hyasin patch (I'm quite certain I've spelt this wrong but it is the correct pronunciation). It's a patch that sticks just behind the ear. Unfortunately it sent mum high as a kite so was removed after 2 days. Next the speech therapist who keeps a regular check on mums swallow recommended it might be worth trying Botox injections directly into one of the saliva glands, so a referral was made to an Ears, Nose & Throat consultant. Mum doesn't have a drooling problem as such, only occasionally, but her savila was collecting in her throat making her cough.

We met with the consultant we went through the pros and cons of trying this treatment. The injection can last between 3-6 months, downside is that it could make the mouth much to dry, which in turn makes the mouth incredibly sore.

He had never tried the Botox on a PSP patient so with no data to indicate what the outcome would be, thought it best not to try. He did say he's had good results with Parkinson's and motor neutrons patients. He was going to write to mums neurologist for advice, but this was February and haven't heard a peep back. Need to do some chasing up when I get back to the UK after our holiday.

How are things going with you lovely?

Love & hugs Jo xxx

[dorothy-thompson in reply to JoJo-K]

Hi Jo

Thank you for this information, I have got some papaya enzymes and pineapple juice, I'll let you know how we get one

As to how I am, it's not been a bad week, mainly I think because we are both getting a good nights sleep. I ask my GP for something to help my husband relax or at least make him less aggressive and he prescribed Quetiapane, 12.5mgs a day which is an extremely small dose I was reluctant to start it at first because after a few attempts he seemed much worse, but I was told to persevere and at the moment things seemed to have settled a bit. I have also changed my attitude to his behaviour, I now walk away when he gets abusive or aggressive and tell him to behave himself. I know I do the very best I can for my husband under the circumstances and I look after him very well. None of us wanted to be where we are right now but we and I tell him we have to make the most and the best of it.

Thank you all so much for your love and support as always. By the way there's going to be a family gathering for PSP sufferers in Kent in October, is anyone going?

Dorothy-Thompson

[JoJo-K in reply to dorothy-thompson]

Hi Sweetie

Glad to hear things have settled down if only by a small amount. You are doing an amazing job. As for the get together in Kent...I live on the North Wales coast so sadly it's a 6 hour plus drive for me too far.

Hugs

Jo xxx