On the up

[shelly21]

Hi all. I haven't been posting much. I've had a rough 10 days after getting my first UTI. I didn't realise how blooming nasty they are.

Had to have antibiotics for 10 days but its finally gone !!!

I have a new OT and she put in a request for hoists in November and tomorrow they get fitted.

I know its been talked about lots but can I ask you all good things that worked for saliva. Its just started for me as speech and swallow have dived. I have watery saliva and then use atropine. However then my saliva goes thick etc. I drink pineapple juice.

Can anyone add ways that worked or helped the saliva problem.

[JamesW]

Hi all. I haven't been posting much. I've had a rough 10 days after getting my first UTI. I didn't realise how blooming nasty they are.

Had to have antibiotics for 10 days but its finally gone !!!

I have a new OT and she put in a request for hoists in November and tomorrow they get fitted.

I know its been talked about lots but can I ask you all good things that worked for saliva. Its just started for me as speech and swallow have dived. I have watery saliva and then use atropine. However then my saliva goes thick etc. I drink pineapple juice.

Can anyone add ways that worked or helped the saliva problem.

Hi Shelly,
I can’t help with the saliva but wanted to ask if you are catheterised if it’s okay to ask?

[Ellie]

shelly21 Sorry to hear you've been unwell, glad that the UTI has finally cleared up.

Re saliva: (I never took atropine) is the saliva constantly thick; I wonder if the dose is a tad high; could you try glycopyrronium or hyoscine; are you still taking lots of water?

Managing secretions can be notoriously difficult, a balancing act, and can take a while to find a suitable medication and a suitable dose.

Hope you find a workable solution asap. xx

[Zante]

shelly21 I cant help with the saliva advice, but wanted to say I am sorry that you have had a rough time of it lately, and really hope things can improve for you asap. xx

[shelly21]

JamesW no I'm not catheterisation.

[shelly21]

Ellie you've got it in one! So gp said 4 drops of atropine. However, last night I read on the association for professionals that its 2 drops!!

Who deals with saliva issues? Is it SALT? I haven't seen him for months so I've asked for a visit.

I know from reading lots of posts how difficult it is to manage x

[shelly21]

Zante thank you for your message. I'm so glad to be feeling better.
Just looking at the next step re swallow loss and speech. Hope you're well x

[Zante]

shelly21 Yes I also wouldnt know which department the saliva issues would come under, can you phone your mnd nurse or email for advice?

I am not too bad thanks, painful shoulder and ankle aside! Having a little break from appointments for a few weeks because having sometimes 3 or 4 a week was too much for me. take care and keep warm! xx

[Ellie]

Who deals with saliva issues? Is it SALT?

For me, it was the Neurologist initially, then my Palliative Consultant and GP. The SALT discusses saliva v-a-v swallowing but never made med recommendations, probably because it's well managed, and it's also something my Dietitian asks me about. xx

[Hope]

shelly21 sorry to read you have been unwell. I have been using atropine drops for a while now. I started with 1 drop and am now using 3 drops, 3 times a day. They have not caused thick saliva but can be a bit hit or miss in efficiency at times. My prescription says a maximum of 4 drops, 4 times a day. x

[shelly21]

Zante you've certainly been in the wars. Luckily for me I don't have many appointments now. They do get hard on us and very tiring x

Ellie thank you for re who deals with what etc. The palliative doctor is due to visit February. I don't have regular appointments with my neurologist. In fact I've only had 1 appointment with him in 21 months.

Hope thank you for your input. I agree it is hit and miss re atropine. I think I may ask for the patch.

Thank you ladies x

[Claireflo]

Hi shelly21 sorry to hear you've been feeling rough although that's good that the antibiotics have finally worked. Saliva issues can be so difficult, I hope reducing your drops help.

Thick mucus has been a major issue for my Dad for 9 months. We went to a consultant appointment today and saw a different doctor who has suggested trying botox injections and has agreed to trying hyscine patches or altropine drops. He's given us more options to try in 5 minutes than the previous consultant gave us in 9 months, despite me asking about all of these things and simply being told that he's 'not missing out on a miracle cure'. I'm back to hoping something will help him and even if it doesn't I've got a bit of hope for a while.

Secretions seem to fall between areas, our speech therapist has not been involved, the usual consultant has supposedly been 'chipping away' but doing very little and the NIV team have tried to help with the cough machine etc but it doesn't seem to be fully in their area.

[shelly21]

Claireflo I know you have struggled re your dad and its nice knowing you have finally had more offered in the way of advise.

I know of botox and the patches. I'm having a mixed bag of dry mouth, due to meds & niv. Then thin and warery. I've ordered xmelts which are for dry mouths in hope they might reduce the thick stuff they are only £10 on amazon so worth a try for me.
x

[Hope]

Hope thank you for your input. I agree it is hit and miss re atropine. I think I may ask for the patch.

shelly21 i tried the patches but they made me nauseous so I had to give them up even though they were helping. Hopefully you will be ok with them if you try them. I was told Botox would be my next option but I am not keen on trying that. x

[Ellie]

Meds shouldn't be "hit and miss" - you ought to be able to rely on them doing the job...

I didn't get on with the Hyoscine patches either as they made me dizzy and affected my vision - Hyoscine crosses the blood-brain barrier so can have more side effects, although obviously not everyone gets them.

I have great success with Glycopyrronium, been taking it for a long while.