PSP Association

Speech and swallowing

Hi All

Quick question (in between running about like a maniac)

I saw my Dad today, last saw him Sunday, there is a definite decline in my Dads speech (much more difficulty getting the words out) what I want to know will swallowing be the next problem?

I totally appreciate everyone with Psp is different but is poorer speech followed by problems swallowing?

On top of that my dads confusion is horrendous! It’s NOT a urine infection!!

All answers gratefully received as always

X

36 Replies
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Sorry, Amanda. Its not definite but is likely.

Hopefully, it will be slow.

Love from Jean x

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Thanks jean, that’s what I thought!

I don’t want my Dad to keep suffering so personally I hope it’s not slow! ( no offence to anyone here)!!

Anyway jean, very kind of you to reply in your circumstances, how are you? X

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I also wouldn't want to upset anyone who feels differently but Chris and I always believed there was a time for him when the quality of life becomes too poor.

So I supported him in deciding it was time - but I didn't do a very good job at letting him go !!!

I'm as well as I can be !!!

What about you ?

love, Jean xx

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Bless you jean, I’m sure Chris understood! I think your extremely brave!

Me? Ha, rushing from here to there, got loads and I mean loads of work on! Then there’s stuff to at home and see dad and try in between give mum and I some kind of life, all a very tricky balance, but I’ll keep fighting x

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I know. Its exhausting. Then suddenly it all stops and its another learning curve !!

xx

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This is my fear Jean. Oh well.

Cuttercat

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Oh my you are amazing. I plum quit my job....Now I don't think I can ever go back!

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How you feel is probably how we all feel/felt .

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Hi Amanda

All I can say is Archie’s speech has been for a while regarding his swallow unfortunately he had the peg fitted in Feb but he also has a couch assist and a suction machine cause he cannot get things up on his own

Hope you and all are doing ok

Hugs

Sue xx

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Oh god, Sue, such a bloody nightmare isn’t it?! What is a couch assist?

As always I’m trying to prepare for every eventuality, stupid really where Psp is concerned! But forearmed is forewarned!

Me, tired, on the go constantly whilst awake and then finally I sleep! Keeps my mind busy if you get me?

How bout you sue? X

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I know what you mean there Amanda

The cough assist is what they put over his mouth and it helps sucks up what he cannot get up himself then the suction machine clears it we have been a lot better with it

Sue xx

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Thank you for sharing sue x

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Yes it does follow, but Steve's speech went long before his swallowing. I know this isn't what you want hear, it was a good 18 months his speech left him, before he couldn't swallow. Don't forget everyone is different!

Lots of love

Anne

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Thank you for sharing Anne, so sad, but I did want to know, so thank you! The truth for me, where Psp is concerned is very necessary.

Anyway how are you my darling? X

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You know.......... Oscar performance still going strong!

Lots of love

Anne

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Bless you darling x

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Hi. As I understand , the motor neurons transmitting signals from the brain to the throat for speech and swallowing get impacted nearly the same time - give or take a few weeks broadly.

Speech therapists help a bit but not definitively . What you may want to keep a track of is the blood tests and muscle atrophy when the food intake comes down since that impacts movement big time. Take care .

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Thank you, a most informative reply! X

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Hi Amanda, my dad can still swallow (pureed only) even though his speech went ages ago, he's completely bed bound, immobile and catheterised. Swallowing seems to be the last thing to go. I can't believe he's still here, three weeks after coming home in such a pitiful state. Food was always his greatest love though!

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Simply heartbreaking sasmock! Your Dad sounds like mine, a fighter!! X

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Just like Chris. When no longer able to swallow there was no point !!!

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That's how it happened for B. He was very difficult to understand and then could no longer swallow. The swallowing incidence happened much more quickly for B. He lost 20 lbs. *two stone?) VERY quickly and a PEG was used within weeks of a sudden(?) difficulty in swallowing.

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😥 again so sad, thank you for sharing x

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My moms speech has been severely diminished for over a year but she still eats everything - and I mean everything - so the two are connected but not necessarily causally linked. Our speech and language pathologist said some people with psp never lose their ability to swallow completely (of course, choking and aspiration are a persistent risk). My mom loves to eat and has refused a PEG (when/if the day comes), so I just hope she can enjoy food for as long as possible! Hang in there, Amanda.

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Bless you, thank you for you sharing x

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Make sure it's not a chest infection as higher risk of aspiration pneumonia in psp. yes swallowing problems generally follows this unfortunately x

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Thank you x

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We seem to be on the same timeline, (mom went into a facility 9 months ago when my sister - her primary career- died unexpectedly for neglecting her own care needs). Your posted care questions have nearly matched my thoughts (like a tv app, using a camera, and needing to supply briefs, etc.) these past 8 months. This week when visiting, I noticed a decline in the ability for mom to speak - and wondered how far off were the swallowing issues (she is definitely coughing more when eating).

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Wow! How very strange but equally so sad! How old was your sister? That must have been a terrible shock?!! Assume you are in the USA? How old is your Mom? X

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My sister was 49, my mom is 79. Yes we are in USA. Knowing this group is here has helped so much when the rest of the world does not seem to understand. And yes, I begged my mom and sister to set things up before the train derailed ( metaphorically) last winter; to get things in order, to put in place adaptive technology, to get care set up - but they just didn’t want to / couldn’t deal with things. Mom has CBD - though also crossover symptoms of PSP

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I think that was denial, that’s quite normal. Yes we are all here to help each other, and I’m so so grateful for this site, without it, I don’t know where I’d be!! X

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Dad lost his speech earlier this year, around Feb/March time. He's now struggling to swallow and any swallowing is accompanied by some bouts of coughing. Food intake is really very limited and is soft foods only I.e. Yoghurts, thick smoothies mixed with yoghurt, chocolate mousse and thick cream, anything to try and get calories in. The weight loss has been quick..... heartbreakingly so skinny......😢 And my dad used to love his food so much.... Now on second lot of antibiotics with a chest infection hoping it doesn't get to aspirational pneumonia...... Take care CJ xx

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Again simply heartbreaking, thank you for sharing and you take care too! X

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My husband is in hospital 10 days with aspirational pneumonia and sepsis pneumonia. He has been tube feed through the nose for a few days. He refused the peg couple of years ago and continued eating everything. They have put him back on a soft food diet but he is choking on this and liquid. Don't know where we go from

Here they have called in the palliative team. I can't believe we are at this stage but he has PSP 12 years now. Xx

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So sorry, Pentland. It has such as devastating effect on all the family.

Big hug from Jean xxx

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Simply heartbreaking and devastating to read! Huge hugs putland x

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