Swallowing

[Rocksbeb]

Hello all, only posted once before. My husband is having great difficulty with swallowing liquids is ok with food and we have tried thickeners. Has anyone else had this happen?

[Yvonneandgeorge]

My husband coughs really badly when he eats and drinks, feel really sad when this happens, but thanks to PSP this is not unusual. He won't have thickener, he would not drink with it. There was a post on here that said about carbonated water, which is much better, he does not cough so much with it, please try it, hopefully it will work for your husband, not saying he does not cough at all, but he is better xxxxx

[Rocksbeb in reply to Yvonneandgeorge]

Thank you Yvonne I will try the water

[abirke]

A swallow study may help him see what he needs to promote safe swallowing. Often times a speech therapist can help strengthen muscles or in some other way positively effect swallowing. Yes if your husband has PSP, this is an issue brought on by this disease . It is called Dysphasia . For PSP it is when the epiglottis...the little flap that shuts over the glottis or the airway ....stops working.....the door no longer shuts and everything gets into the trachea and or lungs! thick fluid and or food stays as a glob and can pass more completely over the epiglottis whereas thin liquids find little nooks and crannies into the glottis and make for easy choking! Good luck with finding a good remedy....

AVB

[Wgrape in reply to abirke]

Best explanation I've ever heard!

Wanda

[abirke in reply to Wgrape]

haha I felt like I was over explaining its' like I could not stop....hahah

AVB

[Hidden]

Have you tried him with a straw. It worked well for my Dad but it is not recommended by the medics. But if you do get success with a straw stick to that only and don't alternate with a feeding cup. Dad managed to use has tongue to get better control and smaller sips which he could manage without choking. Good luck. X

[am2015]

My mum uses a straw as well with thickener. I don't know if your husband will notice the thickener if you start with a minimum amount. My mum didn't realise we were using thickener because the quantity of thickener was so small and increased over a period of 6 months. We even thicken the water that she brushes her teeth now. However we never added thickener to plain water because you can feel the grainess, it was added to juice or squash. As Nader has said a straw is a good idea (even though not recommended by professionals) it has worked for my mum. We control the amount of liquid that comes up the straw and pull the straw out of her mouth, so we can control how much she drinks in each sip. We also make mum bend her neck down and tuck her chin in as far as she can to minimise the risk of aspiration. Hope this helps.

[D0ttieL0ttie]

Hi

This is not uncommon with PSP. My husband has this too.

We have been told that, with PSP, when swallowing, if you swallow quickly or with head up, the brain doesn't have time to send the message to the epiglottis, the flap that covers the trachea and sends the fluid down the esophagus, so the fluid goes down the wrong hole.

It can also happen with food but swallowing food but because fluid goes down more quickly this is why.

We are under the SWAT team (UK based) and Geoff has thickening granules in his drinks too.

We also used a 'Nosey cup' about £12.00 from Amazon. This encourages Geoff to swallow with his neck down and more slowly.

Hope this helps

[Pentland]

Can I just add to the discussion on straws that although regular straws are not recommended, your Speech and Language Therapist should be able to provide u with a straw that has a valve attached. This restricts the flow of liquid going into the mouth. My husband has CBD and we have found it very useful. We were also given a plastic cup with a lid that has an internal straw with a valve. Good luck.

[Finoni]

We are still in the early stage of this being a problem. We always make sure my husband has a glass with a wide mouth, tipping his head back to get the drink causes him to choke. A bottle is hopeless. A travel mug with a small opening or kiddy one with a spout also works as they dispense the liquid more slowly. We have thickener, but hope to put off using it for as long as possible.

[Robbo1]

Which thickeners have you tried? We started on "Thick and Easy" but my husband, who never liked anything creamy, before PSP, hated it. We now have "Nutilis Clear", which is much more palatable and you only need to use a small amount. He will have drinks with this in them. The Speech and Language contact got it for us, now we have it on prescription. Because of problems with food we have been refered to to a dietician and are waiting for an appointment. For years, B.has never had cream, yogurt or anything of a creamy texture, even thick gravy, as they make him feel sick, so it's a real problem for us. Good luck! x

[Rowan8831]

My husband is in hospital now because he became dehydrated because he wasn't swallowing enough water. He has had 2 swallow tests which have shown a delayed swallow and is now on thickener. He likes it when it is in a fruit drink but not just in water alone.

I have promised him I will use it to thicken some wine when( and if) he gets home! Thanks for the advice about the straws. I will ask the SALT tomorrow.

[1RobK]

I'm sorry not an easy fix. We have had several swallow tests performed. I think they call it a barium swallow test to see what foods and liquids best to use.

At first food had to be puréed, second test showed syrup type liquid went down the best, now the care facility wants to stop feeding comfort food given a peg was installed three months ago.

Have a meeting on Tuesday, willing to have a waver drawn up not holding anyone liable for choking on food, as mom desperately loves eating.

[Gadgetgeek]

Yes! G's swallowing deteriorated at a rapid rate over the last few months, we use nutilis clear thickener for all drinks including water, at first G hated it but now is grateful for any drink. G had a PEG feeding tube inserted 2 1/2 weeks ago, this has been brilliant as I can now give her 1500ml through it in combination of water/meds/feed.

[Rocksbeb]

Thank you all for your advice. Tried straws that restricted the amount - but said too hard to get a drink. Tried thickener through speech & language. Have now got an appt for the swallow X-ray. Tried cup that restricted the amount, that did work but Pat didn't like and wouldn't drink out of it.

It doesn't help that he also has COPD and that also causes coughing. He doesn't choke when eating only drinking so hope test will help get something to help. I have not heard of a "Nosey" cup but will have a look on amazon

We are in Dunfermline Scotland, had to move house (there for 35 yrs) what I miss most is my garden. Had a greenhouse and raised bed for vegetables. Threatening to do guerilla gardening when weather is better.

Sorry for the rant and thank you all again

Anne

[5-4-3-2-1]

Hi there, my husband is also starting to have difficulty with swallowing. If you speak about thickeners, is it basicly water with something in to thicken it - help! I'm a novice!