Hi
My dad started choking on his own saliva 2 days ago and I had to rush him for throat suctioning - they had to do it 3 times and it was horribly painful for him
Does anyone know an alternative for this, if God forbid, it happens again? What if the patient is given a sedative to put to sleep so that their own reflex action possibly kicks in and it lets them swallow, maybe slowly...
Hi Sammy90210
By sound of it your dad needs to see a speech and language therapist who have methods for reducing saliva either Glycoperonate or in bad cases Botox to the saliva glands. M is on 5 Glycoperonate tabs a day but saliva getting worse so expect to move to Botox soon. Glycoperonate has been effective for almost 9 months but as with all drugs the body builds resistance.
How is his feeding if his swallow is going he might be losing weight get a dietician to check him out access through the GP.
Best wishes Tim
Thank you Tim, my dad is PEG fed (I mentioned in the title but not the body) - the palliative care doctor today suggested to have him seen by a physio who can massage his chest or back to help push up the sputum so he can cough it out - I am not actually sure if his throat and lungs are strong enough to cough it out even...
Sorry missed ref to PEG I agree about exercises by Physio and SALT teams may be too exhausting. There are ways to reduce saliva the drug I mentioned but also try natural tincture of sage it drys the saliva but has a horrid taste but we use it when M gets really bad it reduces the flow but also gives her something to fight.
Hope the can help your dad best wishes Tim
Does your spouse have any problems with the glycoperonate?
Sometimes I think that it is the root cause of all the bathroom trips in the night
Hi mthteach
The effect of Glycoperonate is beginning to wear off initially very useful but now on 5.5 tablets and saliva no longer fully under control, I note that it seems to cause night sweats but the toilet trips have not changed since before we started the tablet in March.
My thought toilet issues are a PSP effect with the nerve messages from the bladder not being fully understood, similar to a toddler learning potty training.
Tim
Amilazy, We now have another UTI 
Sorry to hear that, so far touch wood Margaret has avoided that horror, but I suppose it is only time. Hope the antibiotics work without upsetting your partner too much. Good luck and hope for a swift clearance of the UTI.
Tim
My wife has a PEG too and I often have to suction her mouth using a portable suction machine. She's not crazy about it, but she knows it helps. So far, I typically only have to use the suction machine after someone, usually me or her mom ... or mum as those in the UK say 
allow her to have something to eat. Even the smallest amount seems to trigger swallowing issues and then I have to suction her.
You don't necessarily have to go that deep to get the job done. Simply insert pass the lips, have them close their mouth to build up suction, and let it draw out the liquid/saliva.
This swallowing issue is quite common with people with ALS. PSP seems to have a combination of diseases all wrapped up into one unwanted package: ALS, Alzheimers and Parkinson's.
Good luck with your dad. God bless you for looking after him and searching out for help.
Thank you ketchupman
My dad is late stage PSP - he gets really angry and bites it and tries to punch me with his feeble hands - I try to do it quickly in the side of his cheeks and am joking with him all the time, trying to distract him - somehow I manage to get the sides done - but deep throat suctioning is different - in the last instance, it was too horrible - I would not have it done to someone I hate - he is also very sensitive to pain - my 6 month old nephew grabbed his finger and he had tears in his eyes...
I hear you. My wife (who is only 54 years old) is in the late stages as well. She bites down on the suction tube as well, which is why I usually use the flexible NT tubing. And when I brush her teeth, she really bites down hard on the toothbrush. Makes it really hard to brush the backside of her teeth.
I am so sorry, she is so young - my dad is 72 but I think he's really wanted to live you know, enjoy life and explore/experience as much as possible - even now it seems he gravitates between "i want this to be over already" and "when am I getting better, this can't be happening to me" - he always looked younger than he was, as late as last year my friend met him and said he looked like he was in his 40s
Bruce is 55. Probably has had it since he was 51. Starting to have swallow and spit problems.....though still independent, it's still getting rougher! Km, I'm sorry for you and your wife. We are so young....
AVB
Indeed. My wife was probably around 47 or 48 when first symptoms showed up. Very rare for females her age to get this. Usually in males in their late 60's.
We're actually in the hospital ER right now. This afternoon she was no longer able to stand or walk and facial expressions are comatose. They're running lots of tests and checking her lungs for aspirations. Of course, no one here has heard of PSP. I get to educate them. :-(. Ketchupman.
Best wishes for your wife and yourself - that happened to my dad once... I am not sure what happened exactly but it was most probably the evening or the day after he underwent a lumbar puncture (LP), it was suspected he may have NPH (webmd.com/brain/normal-pres... - he had 2 LPs and PSP was not diagnosed yet - and after every LP, his stage changed - I read somewhere on this forum that PSP patients cannot tolerate anesthesia or surgery and they actually go down a stage if they undergo either - I am not sure if this is scientifically proven/true or anecdotal but I did see it in my dad...
Interesting. My wife was getting regular epidural injections to the back (not sure how similar to LP). Her last one practically paralyzed her for 45 days (right before we were going on a 2 week Panama Canal cruise).
I am not sure how they are different - my dad couldn't walk by himself to the toilet after the first one - and after the second, he couldn't sit up and lost a lot of cognition capabilities - I told it to his neurologist - I don't think even he knew it...
Just checked on WebMD and basically they do a LP to get to the meds in the spinal column.
I am not sure if she will need deep throat suctioning, but if they say so, please be careful - it can cause damage as well - maybe there are alternatives, like massaging the chest or back to push the secretions to the base of the throat near the mouth and then suctioning from there...
Best wishes...
I am sooo sorry KM!!! where is her gp or nuerologist ? How are you holding up....We actually went home when B went through the window.....It was so late and we were 9 th in line half hour each.....we could get a good nights (?)sleep. before we came back. Do you think it was the PSP, or something else?
I do hope you get some answers....
AVB
Grrrrrrr.
One more additional comment ... my wife doesn't really mind having the suction via the mouth. What she really hates is when the NT suction tube is ran up her nose and down into her airway. She only had that done by nurses while in the hospital. I've never felt comfortable doing that myself and you have to really know what you're doing. The nurses tried a few different times and sometimes they weren't getting it to go when it needed to go.
I understand, thanks
Margaret had a NG fitted as emergency when her swallow reflex ceased and her weight plummeted they could not fit a RIG/PEG until weight stabilised. The nurses could not pass the tube so M had to be sedated for the NGT to be passed. So I could not use an NG tube for suction. I know the tube is quite tough but how does it survive the bite?
Best wishes Tim
My mom is having a trumpet installed, it's a semi permenent silicon tube inserted thru the noses down to the base of the throat. This tube acts as a conduit for a suction tube. The trumpet has to be changed every 4 days but makes it easier to suction.
Peg feeding and bowel movements
Dry throat and mouth
