Swallowing Issues

[jimandsharynp]

I'm wondering if a PSP patient with beginning swallowing problems is better off sipping from a bottle (water) or drinking it (water) from a glass. Maybe it doesn't matter but I've often wondered.

Jimbo

[maeve]

Hi Jimbo,

From my experience looking after my sister with PSP she found it easier to drink from a water bottle with a "fruit shoot type top". We tried every conceivable type of drinking vessel.

Straws were no good even with a valve in them. Spout cups, feeding cups ordinary cups, glasses I have got them all languishing in my cupboard. It is a case of trial and error to find what suits.

Hang in there

Maeve

[dibber]

Hi

My Mum drinks through a straw Tea or juice. Not really able to hold a cup anymore she has no strength in her hands and unfortunately due to the severe sight deterioation she needs guidance to her mouth with food and drink as this most regularly ends up up her nose or down her front. She too has said she finds it hard to swallow but still eats normal food but very little and therefore severe weight loss has occurred quite rapidly.

dibber x

[jimandsharynp in reply to dibber]

Dibber, Thanks for the idea of using a straw. I can see where that might help.

Jimbo

[hazelb]

Hi Jimbo...as Maeve says, it's really trial & error. I too have a cupboard full of different types of cup etc. Frank was drinking from a beaker one day then next day needed a straw to prevent taking in too much. He couldn't use the spout cups...couldn't get the hang of them for some reason. He never really managed the " fruit shoot type top " either. Unfortunately everyone is different in their capabilities & needs. The main thing is to make sure they don't try to take in too much as this could cause choking or going down " the wrong way ".

Sorry I'm not much help. Take care & try to keep smiling. Love Hazel B xx

[jimandsharynp in reply to hazelb]

Hazel, thanks for the ideas. I may try them later on when swallowing gets to be a big issue. Just a minor one at the moment.

Jimbo

[Hidden]

My husband still drinks from a cup during the day (1 yr after diagnosis) but he uses a pop-top water bottle at night when he's half asleep and groggy. We've found that his food goes down much better with a carbonated (fizzy) drink, so I use fizzy water for him all day now. Helps those pills go down, too. I guess all we can do is keep trying things. I learn a lot from other carers here. It's so nice to be able to share info with others. Take care!

[jimandsharynp in reply to Hidden]

RosemarieLynn, thanks for the ideas.

Jimbo

[superman888]

We used to use small plastic dessert pots with a straw cut in half. Eventually PSP makes sucking through a straw difficult. Now every drink is thickened and simply spooned into the mouth. Also I use ice-cream which is solid when entering the mouth and simply melts in the mouth. I make my own ice-cream with milk, double cream, complan powder and protein powder.

[jimandsharynp in reply to superman888]

Good idea with the ice cream and straw. Thanks!

Jim P

[anne-cliff]

a referral to a speech and language therapist is vital - they are trained to help with swallowing problems. Insist on one. As the condition progresses the help they can offer is invaluable. However, make sure that the therapist is directed to PSP professional section for help as they may not be fully aware of all of the issues.

[jimandsharynp in reply to anne-cliff]

We went to a speech and language therapist early on because of voice level and swallowing. Swallow test didn't show anything at that point in time. Thanks for the ideas.

Jim P

[teena2]

Hello Jimbo and Sharyn,

My husband, Chris died on 6th June after his final bout of pneumonia. Like everyone else we tried everything that has already been mentioned, but i would emphasize very strongly that you get a referral to a speech and language therapist who will look the ability to swallow and if needed offer a special test for the ability to swallow without aspirating fluid down into the lungs. I was prescribed nestle thicken up for Chris and if this was the right consistency for any of the drinks it worked very well. I was advised by the speech therapist what consistency to use. Hope this helps. Hang on in there.

Teena2

[jimandsharynp in reply to teena2]

Thanks for your suggestion and help.

Jimbo

[dllera]

Hi Jimbo - a straw was really helpful for us -but it doesn't work for everyone -be careful because judgement is impaired so at times i would have to pull the straw out to make sure dad would swallow so he wouldn't get a mouth full and choke- -also -this is more of a trick of the brain -but if i would wipe my dad's mouth with a cloth or napkin -he would swallow -it don't know if that is all the training we've had over a lifetime -but it worked for us - - have you started thickening the water yet? Also -get some papaya enzymes -chewable - -at at GNC or supplement store -try eating several before and after meals -they really help with secretions. Seltzer water or club soda is also good in breaking up phlegm. There is a great webinar on eating I have found -good tips etc. I have attached it here

google.com/url?sa=t&rct=j&q...

[jimandsharynp in reply to dllera]

Dellera, thanks for the helpful hints and the slide show. Very informative and helpful. No major issues just minor at this time but I'm trying to arm myself for the future. Again, thanks.

Jimbo aka Jim P

[Emmyliz]

I have been told by medical professionals that using a straw can be helpful for one person but not another. The person has to be able to"suck" the liquid up the straw, and depending on the stage they are at, they may not be able to do that. Plus the liquid may come up to fast, and then the person can choke. When feeding my ex-husband, small sips of liquid from a cup worked ok. The caretaker/feeder must be very patient and wait for the person to swallow.