PSP swallowing issues. What to look for?

[journeyofjoy]

Sandy has always had seasonal allergies with some post nasal drip so I'm used to hearing him clear his throat mildly. Recently he has done a lot of much louder throat clearing and he says he wakes in the night with a lot of liquid in his throat. He has choked on water just a couple of times, which is something any of us can do from time to time. Any thoughts on whether this is the beginning of this phase? I know I'm asking all of you to answer a question that you may not be able to do but your input is appreciated.

My best to all of you out there.

[NannaB]

My husband choked on water quite early on so I avoided it by giving him thicker drinks a long time before he needed drinks thickened. He tolerated well, Rubicon fruit juice as it is naturally thick. I also gave him drinking chocolate and packet mix cappuccino which he liked. Colin’s throat clearing became very loud and we joked about it sounding like a rutting deer but it was good to know at that time that he could still cough. Eventually he had to have all drinks thickened and also a saliva pump to remove excess liquid from his mouth but you may still be a long way from that. I know some folk can tolerate water well but Colin didn’t but fortunately by avoiding it, he never had aspiration pneumonia or any chest infections.

XxxX

[journeyofjoy in reply to NannaB]

Thank you for your reply. I am wondering if this could be the beginning of swallowing problems. Do they start out mild like this? I suppose everyone is different...just like most symptoms of this disease.

[NannaB in reply to journeyofjoy]

Yes, everyone is different and so can every day be. Sometimes Colin would go for quite a while not coughing when eating and drinking and then he would have problems and then it would seem OK again. A real roller coaster. I would be led into a false sense of security when things appeared a new normal and then wham! Something else would happen. I learnt on the job, as you have been doing and will continue to do so.

Best wishes to you both.

XxxX

[Hidden]

Larry chokes all the time. As long as he can breath I’ve learned not to get too concerned. There is normal choking (most every time he drinks anything) and distress choking (when something gets stuck at the back of his throat). There have been only two distress choking episodes. The first time it happened I called the rescue squad. Was told he had something stuck at the back of his throat not in his throat. The second time it happened I waited and he did clear the back of his throat on his own.

[journeyofjoy in reply to Hidden]

Thanks Jeff. From an earlier post of yours, it sounds like you and Larry are heading into a new phase. Prayers for strength and peace on your journey.

[AJK2001]

Has he had his swallow assessed by a Speech & Language Therapist? They can advise whether thickened liquids would be helpful, this helps reduce the number of choking incidents but won't eliminate them totally. As the swallow reduces liquids can be thickened more.

[journeyofjoy in reply to AJK2001]

We haven't had an assessment because he's really not into that phase yet. He's only choked once a few weeks ago and he's been noticing a lot of fluid in his throat when he wakes up at night. In addition, he clears his throat loudly.

I don't know if these are PSP symptom or seasonal allergies. Still watching.

[Cuttercat]

Thickeners in the water and all liquids. This is the number one problem for PSP patients. Swallowing liquids. But many things are liquid so soup, jello etc will augment fluids.

We had three different machines to help with saliva and choking. This is the future I’m afraid.

Bless you

Cuttercat

[journeyofjoy in reply to Cuttercat]

How long have you been dealing with the swallowing issues?

[Cuttercat]

My husband Charles passed away last June. He had issues for many years before diagnosis but for two years very bad at the end.

Cuttercat

[journeyofjoy]

I'm sorry to hear that. If you don't mind me asking, did he have swallowing issues the last two years or prior to that? Or do you even recall? Sometimes we lose track of these things. I used to think I was going to keep a journal, but who has time?