Thickened water for dysphagia…any other s... - Cure Parkinson's

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Thickened water for dysphagia…any other suggestions?

Jennyjenny2 profile image
45 Replies

My 65 yo HWP has had dysphagia added to his list of symptoms a few months ago so has been put on thickened water etc to hopefully avoid aspiration pneumonia. I feel like the nagging wife as I’m all the time telling him to drink more water as he seems to avoid drinking it now as he struggles getting it down.

A blood test two weeks ago revealed ‘renal impairment’ and to retest again in 6 weeks.

Can anyone please suggest ways to get more fluids going through the kidneys? We have just started on canned fruits (without the liquid of course) as winter is approaching and not many fresh juicy fruits are available.

Any advice will be greatly appreciated.

Jenny

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Boscoejean profile image
Boscoejean

"Intravenous (IV) fluids and electrolytes can be used to treat kidney failure caused by extreme dehydration. IV fluid therapy is also a key part of treating and preventing acute kidney injury (AKI)"

driphydration.com/blog/iv-t....

"Foods for Healthy Kidneys

A balanced diet low in sodium, phosphorus, and potassium, while high in quality protein, is essential for healthy kidneys.

For example, red bell peppers are low in potassium (and high in flavor), which make them a great snack.

Additionally, cabbage and cauliflower provide anti-inflammatory effects, blood pressure regulation, and urine production support, making them a great side dish.

For fruits, try incorporating apples, which are high in fiber and anti-inflammatory compounds, and cranberries, which can protect against bladder infections by preventing bacteria from sticking to the bladder wall.

For proteins, incorporate fish, such as salmon, mackerel, and trout; and skinless poultry, such as chicken and turkey, which are easily processed by the kidneys; egg whites, which are known for their low phosphorus content and high-quality protein; and beans, a plant-based protein option that provides fiber and kidney-friendly benefits, are also great options."

jacksonhealth.org/how-to-bo....

Jennyjenny2 profile image
Jennyjenny2 in reply toBoscoejean

Thanks, Boscoejean, for all that info. I’ll go to the pharmacist and enquire if they have some electrolytes in a semi solid form instead of mixing it with water. I’ll enquire into the IV if we can’t get enough fluids in orally. Lots of good info re foods.

garygjs profile image
garygjs

Hi Jenny

You can buy fluid thickeners - usually starch based or xanthum gum based - to readily thicken most liquids. (I'm guessing you're already using something like this.)

All the evidence I've seen points to xanthum products as the better option (safer + more palatable):

dysphagiacafe.com/2018/07/2...

My mum did not get on with these commercially available products...they upset her digestion...

Therfore, we use thick milkshakes (you can add yogurt to thicken further if required) and water mixed with pureed fruit (sold as baby food) eg.

Very tasty.

ellaskitchen.co.uk/shop/ban...

7springshollow profile image
7springshollow in reply togarygjs

I thought dairy was not good for pwp?

amykp profile image
amykp in reply to7springshollow

If you like (or miss) dairy you should know there's no real proof of that--the studies are only associative. I tend to take all associative studies with a huge grain of salt.

And even if you want to be extra careful, the association that they've "found" seems to be pretty much with skim and lowfat options anyway.

Per that: ice cream might be a good option, especially homemade with less sugar!

7springshollow profile image
7springshollow in reply toamykp

I never quit dairy but I do limit because the protein does seem to mess with my meds uptake.

amykp profile image
amykp in reply to7springshollow

Oh, sure--that's a good point.

I only take a dopamine only once a day so it's not a problem--in the morning I only have coffee ... with heavy cream and there's not a lot of protein in that.

Jennyjenny2 profile image
Jennyjenny2 in reply togarygjs

Hi garygjs

Thanks for your reply. Yes he’s also not a huge fan of the fluid thickener from the pharmacy.

We have a smoothie daily with raw eggs, banana, soy milk, whey protein isolate (as we are both trying to put weight on) and a little honey.

He’s just consumed his first puréed fruit with water. Still experimenting with the ratio. Thanks.

Jennyjenny2 profile image
Jennyjenny2 in reply toJennyjenny2

Just letting you know that my husband doesn’t mind taking the puréed baby fruit with water. He only has 1 sachet a day but his fluid intake has increased and also includes coconut water diluted and thickened. Thanks for the suggestion.

MarionP profile image
MarionP

Have you been going to do consult with a dietitian and occupational therapist? You know where I live a lot of the supermarket chains have dietitians on staff and available by phone at least, for free,, they can talk to you about this, dysphagia which the consulting can be very nice and inexpensive and available while you were working your way to getting a clinician to help, can provide some ideas on posturing so that it is easier to swallow and understanding creating food it's different bolas sizes or consistencies, they call it "feeding and swallowing" strategies, corn starches and yogurts and cottage cheese and pudding etc being some common thickeners, hello, and whatever they use to make jelly and jam out of, that's usually very available in the baking section, pectin I think, I saw on some cough drop ingredients list it was in there too, fruit pectin.

As far as that, there are a lot people living in nursing homes encounter this need too, so most registered dietitians have knowledge and experience about how to counter with the foods, and food equipment like straws and other objects that help, and most of the registered ones have access to licensed sources of support they could link you up with that can specialize in it, so even your grocery store dietitian can provide links to people through their professional licensure network. And of course nurses, another related allied source. And from there then you can jump off into internet resources. Good luck!

Jennyjenny2 profile image
Jennyjenny2 in reply toMarionP

Thanks so much for all the useful advice. A dietitian is coming here next week, and she has a special interest in PD patients.

‘Grocery store dietitians’, that’s amazing. Afraid we have no such thing here in Australia.

So much info to wade through, thanks so much! I’ll pass it on to the dietitian to see if she’s up to scratch!

MarionP profile image
MarionP in reply toJennyjenny2

Well if you're in one of the bigger towns or cities and you have corporation chains of grocery stores, you might want to check in because they do it all over the USA here, it's part of their corporate sales efforts in general, that's one of the ways they market and advertise food products they have for sale. Been around for many years so you might want to check around. And so what if you're 300 miles from one of their chain stores, check their website and call their customer service, you don't have to tell them where you are, just ask them about do they have dietitians customers can talk to about using the products they sell at their stores. Happened to disclose that you're not near them, a good salesperson knows that you may tell your Aunt Nelly who is and will buy stuff at their stores for the goodwill value or maybe just because they do live in their local market areas. Competitive market chains want your business and that means they want you to tell people near them that there's a good reason to shop with them even if you yourself a ways away, you have people in your family or friends or online networks who do happen to live in their area and they'd like your networks to know what a great company they are to buy from. Good sales people do this all the time and they think about this all the time and they get paid to do it too. So have a nose around sometime, see if there's anything for you.

Jennyjenny2 profile image
Jennyjenny2 in reply toMarionP

Thanks again, Marion. So much detailed info you’ve written, it’s appreciated. I rang one of the biggest supermarket chains that we have and they have never heard of grocery store dietitians. Worth a try though.

Ghmac profile image
Ghmac in reply toMarionP

Goodness where do you live to have grocery story dietitians???? Oh man how cool is that?

MarionP profile image
MarionP in reply toGhmac

It's common sales here, very common in the US, and I would guess sales is like sales everywhere else, it's not rocket science. I would guess Australia has plenty of big towns and cities with corporate chains and that's part of their marketing effort, you can call them up and you don't have to say you're 300 miles from one of their stores, and even if you did they know that you just be grateful and will tell friends and networks that you're part of who do live in their local marketing areas that there's a good reason to buy from their stores, this is common in sales and good sales people think about this and the dietitians are hired explicitly to get the word out to any potential market routes, and are paid to think about this just exactly that way to get the word out as part of their advertising in general. So somebody from Gut Bust NSW as relatives are friend in their Facebook Network who do live near some of their places and you will tell them what a great thing they're doing that benefited you so return the favor by buying their yogurt. So have an internet nose around some of these places and see if there are people you can talk to about your dysphagia and recipes and tricks and contacts in allied fields that they may have, my guess is dietitians are friendly people just like everyone else and this is part of their business because they're in the sales industry for marketing things that you could use and you'll tell your friends and you'll tell people in your network and some of them are near some of their stores, then they'll make money by getting the word around that way.

Jennyjenny2 profile image
Jennyjenny2 in reply toMarionP

Love ‘Gut Bust NSW’ 😂😂

Ghmac profile image
Ghmac in reply toMarionP

I live in Idaho USA and have never heard or seen this availiable. Hope it comes to my town soon!

Ob6842 profile image
Ob6842 in reply toMarionP

I’m curious….what supermarket has dietitians?

MarionP profile image
MarionP in reply toOb6842

Hy-Vee, Fareway.

glenandgerry profile image
glenandgerry

I have the same problem with my HWP. He also has Parkinson's Dementia and is very stubborn and obstinate. He doesn't drink enough, and I have to thicken all his drinks (except wine - he won't let me thicken that!) He won't eat fruit and doesn't like vegetables or salad. His diet is very bad. I often have to throw healthy food away because he won't eat it. He'd rather have a sandwich or a pork pie or biscuits!As the old saying goes 'you can lead a horse to water, but you can't make it drink'

Jennyjenny2 profile image
Jennyjenny2 in reply toglenandgerry

Sorry that you are having such a difficult time. It’s hard enough with all the worry about the AP, but your worry is more than doubled with the dementia. Totally agree with the old saying, I’m sounding like a broken record here! Take care.

LAJ12345 profile image
LAJ12345

what about jelly? You can make savoury and fruit ones. I remember a craze in the 70s when aspic jelly was a must with very salad! I remember cucumber and carrot with orange jelly, mint, lime and pineapple and cottage cheese, and all manner of horrendous combos. But I digress. Maybe you can come up with some palatable ones? I’d just use gelatine.

google aspic jelly images

here’s one

ukrainian-recipes.com/veget...

Jennyjenny2 profile image
Jennyjenny2 in reply toLAJ12345

Hi LAJ12345. Thanks so much for the jelly suggestion. It has given me a few more things to pursue. I have some agar agar I can use to make the jelly. Appreciate your input.

jeanette2372 profile image
jeanette2372

Hi Jenny. That must be very frustrating for you both!

I remembered Maggie Beer (famous Australian cook) heads a foundation to help people with eating difficulties. Her foundation has produced a book. I don't know if it would be any help, but I thought I'd share it with you...

shop.hammond.com.au/product...

Jennyjenny2 profile image
Jennyjenny2

Hi Jeanette. Thanks for the link to Maggie’s book. I’ll look into it.

Hope you and your husband are going ok over there in SA.

Take care

Despe profile image
Despe

Hi Jenny! Hubby is going through same. . . He had a feeding tube after his fall back in 2021. He was hospitalized for 3 weeks, and during that time, hospital speech therapists were testing his swallowing until he was cleared for regular diet. He was given instruments and exercises for his swallowing, which he ignored. 😟 About a week ago, he started having swallowing problems again, mainly with water. Seeing his doctor today to examine him and most likely send him for another swallowing test to see what exactly is causing his coughing, water or solids. He has no problem with solids, just liquids. He hasn't used his feeding tube for 2 years which doctor recommended to leave it in just in case. . .

Did your hubby ever have a swallowing test by a speech therapist?

Jennyjenny2 profile image
Jennyjenny2 in reply toDespe

Hi Tina

Sorry to hear you’re going through all of this, again!

My husband’s speech therapist has tested him. He attends a regular group session with her also so she’s keeping an eye on him. He also has problems with thin liquids.

His constant coughing had become worse over time so the speech therapist has put him on the Atropine (eye) drops 1% for under his tongue. This dries up all the excessive saliva in his mouth so therefore stops it going down his airways into the lungs 🤞

I bought some hydralite today to add to the thickened water and it has made it more palatable. He managed to drink more today so let’s hope he continues. Mind you, still not enough, but it’s a start.

Hope all went well with the doctor today!

Despe profile image
Despe in reply toJennyjenny2

Thanks, Jenny. Doctor will send a speech therapist to evaluate his swallowing this coming week. Of course, we will follow the therapist's advice/recommendation. I suspect it's mostly his saliva that he doesn't swallow, causing him to cough.

Good luck to both of you and keep fighting PD!

Jennyjenny2 profile image
Jennyjenny2 in reply toDespe

Good luck to you both too, Tina 🌷

LeharLover62 profile image
LeharLover62

Jello is a great way to get liquid (maybe find one with nutritious value as well.) we make custom high nutrition milk shakes also, but that’s a lot of work. I can share the recipe if your interested.

Also his speech therapist comes to the house once a week and monitors his swallowing regularly.

Jennyjenny2 profile image
Jennyjenny2 in reply toLeharLover62

Thank you so much for your reply.

I’m sorry but I don’t think jello is available in Australia? Maybe I can find something similar here, and as you say, a healthy version.

(Edit…oh, I realise your ‘jello’ is our ‘jelly’)

I would love you to share your nutritious milk shake recipe please. It would be a nice change from our raw egg and banana smoothie.

LeharLover62 profile image
LeharLover62 in reply toJennyjenny2

Ha! Ha! Yes looks like “Jell-o” is “jelly” in Australia according to google. Who would think…we all speak English but it is not the same!

Jennyjenny2 profile image
Jennyjenny2 in reply toLeharLover62

Yes, weird isn’t it? 😂

Gcf51 profile image
Gcf51 in reply toJennyjenny2

🤪Weird, Jell-o or different countries English.

cgreg profile image
cgreg in reply toGcf51

Jell-O, stylised as JELL-O, is an American BRAND offering a variety of powdered gelatin dessert (fruit-flavored gels/jellies) en.wikipedia.org/wiki/Jell-O

MarionP profile image
MarionP

Midwest USA Common across the USA. Though not often onsite, they are available by phone and website, they create seasonal and put in the published adverts & advert cycles diet conscious or health conscious recipes & meals and advertise their meals and cooking tips using branded and store brand products, part of the overall sales effort. But because they have to be licensed and registered, I know what goes into those licenses because I worked with them inspecting nursing facilities for a few years. There's a lot they have to know and do know. So my trick amounts to free professional consults if you call them and say "I have dysphagia and want to talk about what to do." And because they are there, they have their own contact networks in allied professions like OT and PT so you can hit them up for some contacts they may pass along too. They're friendly, info is free of cost, that's part of their company's sales effort.

Jennyjenny2 profile image
Jennyjenny2 in reply toMarionP

Thanks, Marion, for your thoughtfulness and ideas on how to access these services but I’m afraid living in Australia it’s unavailable for us. Such a lovely thought though!

Copperbullet profile image
Copperbullet

My husband also has issues swallowing water. I found that adding Coconut Water to his water helps. Maybe 2 ounces to 8 ounces of plain water. Much cheaper than thickened water.

Adjust amount ratio as needed. Not bad tasting. Buy it in grocery store.

Papaya juice also helps with too much salvia. Health food store bought.

Jennyjenny2 profile image
Jennyjenny2 in reply toCopperbullet

Thanks for the suggestions!

By adding the coconut water to the water, wouldn’t it still be quite thin and not thick?

Couldn’t buy any papaya juice locally, I’ll have to look further afield. Ended up buying some papaya to cut up and have readily available in the fridge….hope this helps.

Copperbullet profile image
Copperbullet in reply toJennyjenny2

My husband would cough and choke on water but I could add coconut water to it and he was fine. It adds something to the water and it goes down smoothly. Never tried papaya fruit. Certainly worth a try! We get credit for trying

Jennyjenny2 profile image
Jennyjenny2 in reply toCopperbullet

Thanks. I’ll give it a go and report back. 🙏

Copperbullet profile image
Copperbullet in reply toJennyjenny2

Thanks for keeping me updated 👍

Jennyjenny2 profile image
Jennyjenny2 in reply toCopperbullet

Just letting you know that the coconut water is great. We do have to add a little of the thickener to it as well as water, but it’s a nice change and seems to quench his thirst a little. Thanks for the tip. And we’re loving the papaya, but unfortunately can’t get the juice.

Despe profile image
Despe

I am addressing this question to all whose partner with PD has swallowing difficulties has also thick saliva. THANK YOU!

Copperbullet profile image
Copperbullet

Glad to hear it helps. Pretty good drink by itself.

Haven’t tried papaya fruit. Glad to pass on things that help!!

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