Swallowing difficulty in PSP

[rmpalod]

My father was diagnosed with PSP 6 years ago. He is findings huge difficulty in swallowing food & liquid. Can anyone suggest what can be done to handle this problem?

[jzygirl]

Has he been seen by a speech and language therapist. Does he have his food pureed that does help. Also have you tried a thickner in his fluids.

I puree all food and Brian has his drinks thickened to such an extent that i have to feed it to him with a spoon.

Janexx

[D0ttieL0ttie]

If your are in the UK speak to your GP or care team and they will refer you to speach and language who also deal with problems with swallowing and choking. My husband is under them for choking when he swallows fluids and they will do exercises with your dad to improve his swallowing. They can also provide thickening agents in drinks and advise on liquidizing and best diet. Good Luck.

[formercarer]

Nourishing soups are good, Scrambled eggs, pease pudding etc. as are panna cotta type puddings. It does take a very long time to feed a person who has difficulty swallowing. They WILL swallow, but it is no longer voluntary. The more they TRY to swallow, the less likely they are to succeed. It is important to WATCH their throat for that involuntary swallow before offering the next teaspoonful. In mums last six months, it would easily take a couple of hours to get a small meal into her so I would have to re-heat several times. She lost a lot of weight despite my best efforts, so high calorie foods are fine. It is probably time to have that PEG conversation... Warm wishes to you both.

[abirke in reply to formercarer]

Good post fc. B never got to the point of pureed food. We went straight from choking to PEG! I may have jumped the gun...but it was inevitable ....I watched Bruce's swallow study...for speech purposes....so Interesting his glottis did not seem to close at all ...that he could swallow the food he did is beyond me ...but thank you for putting the purred food as number one approach to patients needs!

How are you doing?

AVB

[Amilazy]

Loss of tongue control which is the cause of swallow is major symptom of PSP. Get in touch with your speech therapist urgently, they will advise on swallow assistance. If you have not got the SALT team direct number get your GP to arrange an emergency consultation.

This is important as poor swallow can lead to lots of life threatening issues: choking, aspiration to lung infection, lack of fluids leads to body break down or constipation or UTIs, lack of food leads to starvation which opens up body to infection. Sounds bad but there are strategies to help swallow function.

You and your father need to also discuss what happens when the swallow fails does he want to have a PEG for direct fluid and food intake again that information is available from your GP and district nurses.

Best wishes Tim

[abirke in reply to Amilazy]

Wow between you and formercarer we could write a pamphlet fo what to expect and how to deal with it....I love you guys ...I love this site!

[Robmatlol]

As everyone has mentioned, puréed food, thickener in drinks and contact the speech therapist for further advice.

Good luck xx

[Cuttercat]

We're in the same boat. Just puree things and thicken drinks.

One other thing that has helped me, applesauce in the squeeze pouches. He has them by his bed at night so he doesn't gag on the pills. It's has helped so much.

Ice cream is his favorite and I've just said to myself, let him have it whenever he wants. It helps to keep his weight up.

Cuttercat

[abirke in reply to Cuttercat]

Yah if I can get B to "eat" it will be applesauce and or icecream.....

[abirke]

My husband who was diagnosed with PSP in 2013, was administered a PEG tube for food. He now gets all of his nutrition from a special formula. He also has a suction machine and medicine to take care of his extra saliva that he can no longer swallow. Your husband may not need all of this yet but ask your DR about a swallow study and the placement of the PEG tube. The most important thing I can tell you about any of your husbands needs is that you will most likely be the one who figures out what he needs. The doctor will be the one who can prescribe it....Don't rely on them to figure out what your husband needs but utilize them to get his needs met....so in sum

Doctor

Swallow Study

PEG Tube

Suction machine

Saliva reduction Meds

AVB

[longsuffering in reply to abirke]

100% right with your advice

[bazooka111 in reply to abirke]

Gosh .. this site blows my mind --- every time I have a concern, I can find it on here. Thank you all for the contribution for this journey

[enzo501]

my wife ...in 4th year is also doing the same ...She likes straws to in jest liquids ..still chokes a bit and thicker is better ...she has a dnr on the tubes doesn't want it ....think quality not quantity

[Tttp]

Good morning sorry your father is having such a difficult time, I swear on using the crockpot you can fix from soups to whatever, chicken, meat, everything comes out very tender that is what I started doing for my brother he still has problems but not as much, still a problem with liquids tho. Best to you and your father. Nettie

[longsuffering]

Tim is right. Get a PEG. If food goes down the wrong way then aspiration pnuemoia and possibly death. A PEG is by far the lesser of THOSE 2 evils. We have had a PEG (my husband that is) for 2 years and 2 days ago came back from a cruise. I ate in the dining room feeling a bit guilty as usual but put a drop of food on his tongue just for taste-it eventually falls out onto his serviette but at least he has a taste sensation, then off to a quiet place or the cabin balcony for a PEG feed. Also took the suction machine-bit heavy to carry-but necessary and the nebuliser with saline, acetelcysteine and permulcort for nebulising. A lot of bother BUT we got to go-even went on a small vessel to a marine park to see fish turtles etc-they got him onto the barge by putting him in this plastic wheel chair with great big tyres and pushed it across the sand, through the shallow water and up a ramp onto the barge-wish I knew how to atach photos!!

Good luck and don't dehydrate that can be fatal as well.

[abirke in reply to longsuffering]

I would love to see those photos those should be worthy of PSPA booklet

[longsuffering in reply to abirke]

Dear Abirke

I can't send them by email-don't know how! But am happy to send them to your mobile. If you are not in Australia, I would need the numbers that come first-you know the whole number. We are in Australia and my mobile is 0418260595.

This whole site on the internet is amazing as well

[abirke in reply to longsuffering]

I know others know how to get them from phone to post! I have done it once a year ago when I sent a picture of my husband and his new ramp! So...

Does anyone know how to put a picture from phone to this site?

AVB

[Mamalou59 in reply to abirke]

just click ‘more’, click edit, then click the landscape/gallery icon on the right. then click photo library, now choose your photos. I hope you will be able to do it. 😊

[Mamalou59 in reply to longsuffering]

how I wish we could still do those things. we went on a cruise to Mexico last March 2018 ( he was diagnosed end of 2015) when my husband was participating in a clinical trial at Mayo clinic Arizona. He was already on a wheelchair then and could still get up and walk a few steps. He already had swallowong diiculties then. A year after we came back to the Philippines (April, 2020), we had a PEG inserted because he couldnt eat anything. Now he is on tube feeding for liquids, medicine and ensure( milk formula). we feed him pureed food through his mouth and he seldom chokes anymore. but he is now too weak to walk (PSP progressed). And with the pandemic, travel is no longer possible for us, even locally. We cherish the memories and grateful that we have still him with us…

[lesauerbach]

If it gets to the point where he cannot swallow, the peg tube is the next step. My wife had one for 2 years.