Hi
Mum has PSP, struggling eating and drinking, won't be peg fed or have her food blended. But she is very upset about her constantly dribbling. She has been a woman conscious with her manners and looks so this is distressing her. Although so much more to worry about i'd like to try and stop this! everything we are told to try just makes her sleep all the time. If anyone has any suggestions that would be great. I'm in Australia, thanks
We used atropine eye drops, by prescription, under the tongue. Have you tried that? It really helped with the excessive saliva, and you can start with one or two and work up, so if it makes her too sleepy, you could back off. My guy generally had, I think, 6 drops twice a day,
Thanks so much, it's the tiredness we are worried about but think will give it a try now it's getting so bad.Thanks again
Hi Snaggy, can you make/purchase scarves to coordinate with her outfit that she could use to wipe her mouth? Need to be cotton for best absorption. A bib is another option - but can imagine they would be greeted with some resistance, however fancy!Have no experience with this problem, but feel for your mum! I understand the atropine drops may help.
All the best!
Hugs
Jen xxx
Hello there
My husband had this. We used Atropine drops (usually for eyes) which helped. However when it got worse, we tried botox injections given at the county hospital. This worked but wore off adter a few months but we were unable to go back due to his general deterioration. We were then prescribed Solpadeine patches (usually used for seasickness) which were very effective.
He wore bibs, as he too was very aware of how he looked.
I'm sorry to say that this was all towards the end. He too didn't want a PEG but ate pureed food for about a month before he gave up.
Hope you find a solution that helps. Keep on keeping on.
Anne
Hi Snaggy!These are our experiences about the symptoms you describes:
•Excess salivation - drooling: In our case and at the moment it is working:
•Drink plenty of liquid. In this case we use juice of “mango” and the juice of 1/4 lemon (*) for each 250 c.c. of mango juice, adding thickener until it reaches an adequate viscosity so as not to have choking problems.
•After hydrating with the mango fruit and lemon juice, the patient nibbles the remains of lemon Pulp (*). The pure lemon (*) is astringent and makes it easy to control excess salivation.
(*) It is necessary to test the use of lemon as there are cases that produce the opposite effect.
•Some caregivers have mentioned that the physician has prescribed Botox for drooling problems. In addition, the doctor who does the injections also prescribes pill, glycopyrrolate, that seems to extends and enhances the effect.
•Others use “Hyoscyamine patches” behind the ear or “Buscopan”.
•On our case, excessive salivation is a PSP symptom which decrease but not disappears as the illness progresses.
•pspaireland.ie/quick-index/...
Hoping to be useful.
Hug and luck.
Luis
All medication, including Atropine and Solpadeine, gave my husband side effects, tiredness and rashes. Someone on this site recommended a suction pump which we managed to get and used for several years. When we went out, he wore a triangular adult neckerchief. We had many of different colours. There are lots available for women on the internet made from absorbent and very pretty fabric.XxxX
Hi my mum suffered from this. She was also prescribed atropine and hycine patches. Both gave dreadful side affects, although they did help with the drooling. We decided not to use them, pleased check with your doctor and monitor if you are prescribed them. All the very best my mum found the drooling most distressing xx
Thanks so much. Have another appointment with neurologist this week.This week she is having trouble eating anything so I suppose we have worse things to worry about now.
This disease is just the worst and I can't solve anything!
Thank you
Hi, thinking if you and good luck with your next appoint. We were very lucky, we had an excellent Consultant and Parkinson’s nurse based in South Manchester at the Withington Movement Disorder Clinic. Gillian xxx
Hi snaggy
From a personal point of view and as a method of trying to cope. Look after yourself. It’s important.
Don’t try to solve. Try to modify.
For a long time treating my late FIL we tried to solve problems as they presented themselves. This led to huge mental issues for us as his carers as we always felt we were failing him.
One we got our head around how best to tackle the situation and modify it for the better we found that so so much easier mentally to cope with as we felt we had achieved something by changing it for the better so even if only for a while until the next thing presented it we felt we were helping him and making his situation ‘better’.
Even something as simple of instead of trying to stop (solve) the dribbling (which you can’t) finding a way of dealing with (modify) it (ie maybe cotton neckerchief style bibs). .
Sounds silly I know but for us as his family and as his primary carers we were able to react so much more positively mentally with everything happening around us and him.
Still didn’t change anything happening but did in a small way reduce the frustrations as such but at least as carers we were looking after our own mental health.
At the end of each day just reflect on what you HAVE achieved. It will make tomorrow just a little bit easier to handle.
Hello there. I am in Australia, Victoria and I also have a mum on this terrible journey. I wish I could help you but we are having the same problem and no one around can help. How can we expect the health professionals to help when they know nothing about PSP.
I know more about this by researching and reading the many posts on this site. I thank the day my sister found this group. The chats have helped us so much infact I think if the care manager hears me say one more time ‘ I read this on the psp group’ he will scream.
I am sitting with mum at the moment and wiping her dribble. How cruel is this disease.
It seems to be very rare in Australia. It breaks my heart to watch this strong intelligent women waste away. Thanks for listening.
Oh so true, it really is rare in Australia. We only knew because our Speech Path (worked in the UK) said to ask about it and the neurologist had heard about it but hadn't experienced it.
It's the worse disease ever, some days I wish she just had Parkinson's, which is ridiculous.
I really feel for you and your mum and you. Just wasting away in a body that isn't working. Mums brain is fine and her love has always been food and conversation and both are now taken away. She can still talk a little. And she is just so annoyed with everything, especially the dribbling and choking. I'm worried she is giving up, as I would. I don't know what to say or do to make it better.. it's so horrible.
Thanks for listening also, take care.
Hi SnaggyWhat part of Australia do you live in.
PSP has been a huge shock to mum and our family but the lack of knowledge and support associated to this terrible disease has not helped.
Reading the many post on this sight indicates that UK and USA seem to have a lot more awareness and support to sufferers than Australia.
My family are very busy with mum at the moment but bringing more awareness of this to Australia will be a project later on. Too late for mum all we can do is hold her hand and tell her how much we love her.
We don’t know each other but understand what we are both experiencing.
Take care.
Hi Goroos
I live in Newcastle in NSW.
And you are so right, UK especially seems so much more advanced in understanding PSP. Very hard to find a neurologist here that's had experience with other patients. Mums doctor is amazing but has never had a previous patient with this insidious disease.
Mum can still slightly talk but weekly I see a dramatic increase in the worsening of symptoms. I'm sorry for your situation with your mum 😩
Thanks for reaching out to me, like you said we don't each other but we can understand what we are both experiencing.
MyMom took pills for drooling and also got Botox shoots in her saliva glands every 4 months. It did the trick, however her mobility at some point affected her eating habits more than the saliva.
Hi, my Dad has Botox in his saliva glands every 3-4 months which really helps. We've not noticed any side effects from them such as an increases in swallowing issues or speech issues. As it wears off and becomes more pronounced again he uses soft cotton hankies which he keeps tucked up by his collar on his t-shirt so he can get to them easily. We're in the UK and he's been fortunate to have been able to keep having them even in the current situation xx
mum in so much pain with her arms :(
Wheelchair?
Why is my Mum so tired when going out to the shops in her wheelchair being pushed by us, it can take 2 days to get over a 2 hour outing?
Is there something else we should be doing?
