Thickening agent review

[Sugardart]

I would appreciate information regarding thickening agents for liquids. We are moving into this phase rapidly and would like any feedback you have to share. Also started on clonazepam and are trying to find correct dosage. Seems to work - although she appears overmedicated (lethargic, difficulty walking, talking, keeping her eyes open, etc.) Will look forward to your responses.

[superman888]

We use Thick & Easy lately and it does what it says on the tin. We thicken liquids and spoon them into the mouth given that my mum's swallowing is now very bad. I have a thick and easy shaker which shows you how many scoops to add for the appropriate consistency. I shake it for a few seconds and then quickly pour into a small cup before it sets. There are quite a few thickeners out there I think, so good luck. Also your GP or speech therapist should sort you out.

[dllera]

Hi there - we found "thick it' to be the best - it didn't seem to change the taste of food and came in powder form but you have to give it a few minutes in cold temps to thicken. You can buy it in bulk via the internet. There are also pre-thickend juices and soups out there too -just have to do some searching. Clonazepam is tricky -we used very low doses like .25 or .5 with a little more at night to get dad through the night - our dosing schedule was 6am, 10am, 2pm, 6pm and then 10pm - -start low so that you can use doses for PRN (as needed) on those days when she may need a little more help. It will probably take about 1 week for her body to adjust to the clonazepam - but you are going to have to drive the bus with your GP or who ever is prescribing clonazepam - -you know best about the effects - - and it won't hurt to pull back the dosing amount - -if you think she's getting too much - you are probably right - - my dad was a small guy - only about 5'6" and 130 pds -but if you don't see her adjusting -pull back a little on the dose and see how that works - such a balancing act with PSP.

Danielle

[jimandsharynp]

Fortunately we are not to the thickening point yet. Some choking and coughing at times when eating but not to any great extent at this point. Bought some "ThickIt" but haven't tried it yet.

Jim P

[Hidden]

Hi

We use Nutilis, because it was recommended by the speech and language therapist (SaLT) and dietician. It has been prescribed by our GP and so is free of charge. A shaker is available, which we were given free of charge too by the dietician; it ensures all the powder dissolves. The cans each come with a measuring spoon. The (increasing) dosages we have followed were as recommended by the SaLT.

Lily

[ddspan]

We also use "thick it" and found that it works great. Dad doesn't mind it in his drinks and says coffee still taste like coffee. It has decreased his chocking but we using with everything he drinks. Good luck!

Hugs

DeeDee

[Kathy]

We also use Nutilis as recommended by our Speech Therapist. She says it mixes in better than Thick and Easy and is less likely to separate if left standing for a while. Like Lily, we get it on prescription so we don't pay for it.

Good luck xxx

[LesleyB]

Hi

With dad we used thick and easy but he didn't like any thickening, it was a struggle at times. SALT prescribed some drinks called Slo-Drinks which came through the GP and were free. There were cold drink such as back currant, orange and lemonade, and hot drinks of Coffee and Chocoate. They were prescribed at the right level of thickness and it was very easy to add the water to it to make sure it was the correct thickness every time. Dad really liked these which was a help to make sure he still got fluids in him.

Good Luck with this going forward.

Lesley

[dllera]

Oh - i also forgot to mention using chewable papaya enzymes - you can get them at supplement stores -they say they are for digestion but papayas are great for drying up secretions -this help PSP people -and you can eat them like candy and they are tasty - try eating at least 4 before a meal - you should see it really help - also be sure to start swabbing the mouth after each meal - -you'll find that PSP folks will pocket food as they begin to ration swallowing. We also swabbed, brushed teeth and used a mouthwash after anything went into the mouth. When the swallowing slows -bacteria will sit on the teeth and rot them. We used biotene products for dry mouth and low foaming. Eventually we had a suction machine and they have suction tooth brushes that are really cool so you can still keep the mouth very clean and suction to prevent choking. I know you aren't that far along yet but hope the addtional info can still help

[Sugardart in reply to dllera]

Thank you for your response. It would seem that you have an abundance of information that would be helpful for me in my caregiving endeavor. I appreciate the information. I am trying to be proactive and you obviously have alot of knowledge on PSP. I'm sure I will be talking with you again soon. Kathy

[peterjones in reply to dllera]

hi mate i to have psp and my speech therapist told me about the papaya \\\ i just want to give you a tip that my physio lady told me about when your l feet freese up i know thats not the correct way to spell freese but the letterr between L AND X IS BROKEN ON MY COMPUTER SORRY

you can practice get tw\o chairs and put them so you can walk between them then go around them in a figure 8 and get someone to say stop and turn around

this will help you to turn without falling or that shuffle of the feet when you try to get going again i know as i \practice this and i'm a great shuffler JUST MAKE SURE YOU STOP WHEN SOMEONE SAYS THIS TO YOU AND TURN SLOWLY THEN TAKE TAKE YOUR NORMAL STEP HOPE THIS WILL HELP SOMEONE PETER AUSTRALIA

[john_z]

Hi sugardart, we use "Thick & Easy" and we are pleased with it.We use it in liquids and it makes a difference, my dad used to choke especially with water and now it happens much more rarely.Dllera was the one that informed me about the papaya enzymes and we found them helpful too.My best wishes to you and your family, John.

[Sugardart in reply to john_z]

Thanks John for your input. I have found that I needed to make significant changes in her diet which seems to be helpful. A will try the papaya enzymes. Good luck with your journey. Kathy

[peterjones]

hi mate i have had psp since 2004 my speech is not very good but i still have it i also fall quite a bit but thats enough of me. i have a speech pathologist who recommended papaya tablets to me also dark grape juice i found

it helped me to get break down the the mucas that seemed to be in my throat but anything worth a try i guess good luck to you and yours peter Jones Australia