Intermittent Swallowing stopping

[Scottoppy]

Hi My wife is now 9 years into her journey with PSP. Now can no longer speak and is on level 2 liquid diet only. Totally immobile and incontinent. Two days ago she suddenly could not swallow at all for a whole day. We called the medics in as she has an AD to prohibit PEG feeding and we thought that this was a difficult, terminal situation. However the following day she managed a small amount of Fresubin and the day after she was back to 'normal', whatever that is. She has a permanently locked jaw which precludes the use of a spoon so back to the syringe feeding. Has anyone else experienced this 'relearning' of the ability to swallow once it disappears?

[Simlez]

Hi, your situation sounds a bit like what happened to my mum a couple of months ago. Like your wife, my mum also suddenly couldn’t take in any food for a day and only occasionally swallowed some puréed fruits. She also stopped talking at the same time. And this lasted for about 2 weeks. My mum is around 7 years into the disease, is immobile and has incontinence too. My mum also didn’t want any tube feeding and we thought perhaps this is the end. In between I also brought forward neurologist and speech therapist appt to get their opinion and advice. Was referred to palliative just in case my mum deteriorates rapidly. However, my mum started recovering and could now finish a full meal on a good day. She has definitely deteriorated overall but recovered some of the chewing and swallowing ability after. She’s been somewhat stable for a month now. So yes, when we thought all is lost somehow there’s a chance that they might recover some function. I hope things go well for your wife.

[PineEater]

Hi, Scottoppy Sorry to learn of your wife's condition. Regarding 'relearning' of the ability to swallow. I would like to know did your wife's swallowing problem start before or alongside the locking of her jaw or after that? What reason(s) were you told behind the swallow problem by the SLP if you contacted any? Did the SLP get any tests done to discover the reasons? What were the results if you got those tests done? Did the SLP advise any exercises? How long has she been experiencing the swallowing problem? Did it start with the solid food followed by the liquid foods or the other way around? How long did it take her to go to level 2 liquid diet? What thickener are you using to help with the swallow and how long have you been using them? Further, please also let me know did the neurologist or the GP prescribe any medicine for swallow improvement. If yes, what medicines were prescribed and what were your experiences about the medicines? Please take your time to reply. Please be self-motivated in this fight. Best wishes