Choking and disease progression - PSP Association

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Choking and disease progression

Denisejoy1
Denisejoy1

Hi everyone, I have a question for the more knowledgeable of you ( I am still new to this really) . My mum has PSP and I think is probably in mid stage of the disease. On Friday she choked when taking her medicine. So I am wondering is this the start of the loss of swallow reflex or just a coincidence? I feel super sensitive to anything that spells disease progression so am keen to understand a bit more.

Thanks in advance,

Best wishes

Denise

10 Replies
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The decline is a long process from my experience to date. Larry’s been choking for years. As long as he can breath I don’t get overly concerned about it.

To be honest Denise it could be anything.

I wouldn’t worry unless it’s a really violent choke, or it happens all the time, but it is something to keep an eye on.

If it only happens with liquids, it could be worth investigating the thickeners that you can get.

If the choking episodes are becoming more frequent ask her doctor about doing a swallow test. Dad had least 2 tests done during his progression.

Ron

John was choking almost every time he had a drink but is now on thickeners which has helped. We have been told no jelly or ice cream because it turns to liquid as soon as it goes into his mouth. Xx

Dear Denise joy1

My husband has been coughing and choking on fluids, foods for years so probably this is part of your mom”s progression. Suggest time for a SALT (speech and language therapy) assessment.

As others have said there are lots of interventions liquid or crushed medication may help for example or thickener added to fluids.

Love Tippy

Hi Denisejoy1!

I'm sorry PSP has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

By private mail I send you our particular experiences on PSP-RS that we hope you can find useful.

Hug and luck.

Luis

Hi

If she continues to have trouble with her medicines, talk to her GP about different formats available. Mum's arranged a visit from a Pharmacist and he went through all Mum's meds and changed quite a lot to ease the burden, so in one case 2 capsules were swapped for one small tablet that is taken with rice pudding, in another we tried a tablet that dissolved on the tongue, that didn't work so it was dispersed in a little water, still not good, so now we are trying a capsule that can be opened and the contents mixed with rice pudding, additionally mum has been moved from alendronic acid tablet to a 6 monthly injection. So there are lots of options out there, they are most likely more expensive so you may have to push for them but it is worth it to reduce the stress on both of you.

I have PSP and choke sometimes but it doesn;t indicate what part of the process I am in.

I suggest a swallow study to evaluate the choking. Not being able to take medication is a significant issue. Different types of medication can be considered, with the assistance of an MD and pharmacist.

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