googie.cat
Member
- Joined
- Dec 13, 2012
- Messages
- 14
- Reason
- CALS
- Country
- US
- State
- District of Columbia
- City
- Washington
Hi all--
Been lurking for a while, but need to post. My 72-year-old mother was diagnosed with the language variant (PPA) of FTD in February of 2012. By the end of that month, she was already starting to exhibit some issues with swallowing and breathing, but it wasn't until just last month (November) that the FTD clinic at Johns Hopkins referred her to the JHU ALS clinic for evaluation.
However, with five weeks to go until that appointment, we are finding ourselves in need of more guidance on how to handle her swallowing issues, at least to get us by until hopefully the JHU people can help us out. (She's been seen by a speech therapist, had a swallowing exam done, but now that SLT is basically saying that Mom is beyond her help, since it's not mechanical anymore)
I'm trying to get Dad to have Mom permanently on softer foods, and I think he's finally seeing the light, after a few really bad choking incidents over the past few days. But one of the more confounding issues is how she will hold liquids in her mouth for 45 seconds or longer before initiating a swallow. And today, for the first time, I saw after about a 60-second hold that when she did swallow, some of the water came back out of her pursed mouth.
We're trying to keep her hydrated, and she seems to be amenable to Ensure shakes, but she's not getting water down real well anymore. We know about ThickIt, and sometimes that seems to help speed the swallow, and if we really keep talking to her about swallowing, that might speed it up, but otherwise she'll just keep holding the liquid for 45 or 60 seconds (this length of time has been steadily growing since the holding first started back in September). Is this just a symptom that we're going to have to work around?
Mom no longer speaks, and we really can't be sure how much she's absorbing what we're telling her. We try to lessen the choking on food by getting her to take smaller bites, chew, and swallow, but now she's tending to try to just keep putting food in since she's not swallowing well. She'll also go right back to eating after choking. And last night, before Dad could stop her, she put an entire meatball in her mouth to try to eat.
She also motions to the base of her throat often, as though that is where she's sensing difficulties.
Any thoughts on stop-gap measures until we get to the ALS Clinic? Or things we should be watching for? Good resources to read?
Sorry this is long. Thanks for any support. (and hi to a few familiar "faces" from ftdsupportforum!)
Googie
Been lurking for a while, but need to post. My 72-year-old mother was diagnosed with the language variant (PPA) of FTD in February of 2012. By the end of that month, she was already starting to exhibit some issues with swallowing and breathing, but it wasn't until just last month (November) that the FTD clinic at Johns Hopkins referred her to the JHU ALS clinic for evaluation.
However, with five weeks to go until that appointment, we are finding ourselves in need of more guidance on how to handle her swallowing issues, at least to get us by until hopefully the JHU people can help us out. (She's been seen by a speech therapist, had a swallowing exam done, but now that SLT is basically saying that Mom is beyond her help, since it's not mechanical anymore)
I'm trying to get Dad to have Mom permanently on softer foods, and I think he's finally seeing the light, after a few really bad choking incidents over the past few days. But one of the more confounding issues is how she will hold liquids in her mouth for 45 seconds or longer before initiating a swallow. And today, for the first time, I saw after about a 60-second hold that when she did swallow, some of the water came back out of her pursed mouth.
We're trying to keep her hydrated, and she seems to be amenable to Ensure shakes, but she's not getting water down real well anymore. We know about ThickIt, and sometimes that seems to help speed the swallow, and if we really keep talking to her about swallowing, that might speed it up, but otherwise she'll just keep holding the liquid for 45 or 60 seconds (this length of time has been steadily growing since the holding first started back in September). Is this just a symptom that we're going to have to work around?
Mom no longer speaks, and we really can't be sure how much she's absorbing what we're telling her. We try to lessen the choking on food by getting her to take smaller bites, chew, and swallow, but now she's tending to try to just keep putting food in since she's not swallowing well. She'll also go right back to eating after choking. And last night, before Dad could stop her, she put an entire meatball in her mouth to try to eat.
She also motions to the base of her throat often, as though that is where she's sensing difficulties.
Any thoughts on stop-gap measures until we get to the ALS Clinic? Or things we should be watching for? Good resources to read?
Sorry this is long. Thanks for any support. (and hi to a few familiar "faces" from ftdsupportforum!)
Googie