My mum diagnosed with psp in Jan has been in hospital nearly 4 weeks after having bowel obstruction operation. Communicating with the hospital staff about her psp has been exhausting - they finally got it when I suggested aspiration could be fatal! the salt team have finally seen her & put a poster above her bed… but she’s still choking on gritty dissolvable paracetamol until I spoke to the ward sister today who said - no worries she can have syrup- well that’s a step forward! My question is how as a family do we prepare for her discharge regarding food ? Is there some kind of psp diet sheet? Whilst I think all the equipment will be in place I’m less sure about the ‘therapists’ so may be a week or so before we see local salt/ dietitian. I’m praying the local team know about psp but what food should we buy in just in case they don’t know!
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NicolaD15
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My husband had PSP. I would suggest you have the doctor give you a definitive answer on what IDDSI diet your mum should be on when discharged from the hospital. This will require a speech pathologist to see your mum in the hospital and give you their diagnosis. There is something called the International Dysphagia Diet Standardization Initiative. You can do research online to familiarize yourself with the various levels of food preparation and thickness. I can only share what I did for my husband when he was on a pureed diet, I would give him up to three Ensure drinks a day thickened per the dietitian's recommendations. This helped make sure he was getting needed nutrients. I purchased pudding in various flavors, as well as Whole Greek Yogurt, then add blended bananas. When he could have minced and moist, I would take canned fruit and empty the contents onto multiple paper towels in a bowl and mash the fruit this allows the juice that separates from the fruit to drain away onto the paper towels. This keeps the fruit juice from separating and being aspirated. Most canned foods are already processed enough to be easily drained and mashed. Sending you and your mum my best. If you look at some of my posts I explain that Donepezil improved my husband's swallowing substantially first at a 10 mg dose then two years later a 20 mg dose. Both times my husbands Speech Pathologist was amazed at the improvement in my husband's swallowing. There is a good article on PSP on the NIH website which states that PSP patients can benefit from up to 20 mg of Donepezil.
Hello NicolaD15, I am so sorry you are having to face all this. Regarding foods to feed - so much depends on the stage your Mum is at. Regarding paracetamol, my wife (PSP) could not swallow liquid paracetamol as there was too much in the dose and the strength of it caught her throat. She took the tablets all through to the end with thicker liquids, milk being the best.I fed my wife (PSP) slow cooked stews. We had 14 different, repeated every fortnight. I spoon fed them as cooked to start with, then mashed, then liquised adding full cream milk as necessary to achieve the right consistency for swallowing. When she choked on this, I tasted it to find a residual powderiness in my mouth and throat as the liquid separated from the food. To over come this I liquidised again when hot (heating in microwave and wrapping a rea towel around to keep warm for longer as feeding took longer with long pauses between swallows). I had mugs that accommodated the head of the liquidiser. This worked well for a while longer. I then changed to thick vegetable soups with not so much meat, again double liquidised with continuing success. To maintain high levels of roughage for bowel movement, I made sure the recipies containd lots of vegetables. Having 14 different recipies with different flavours helped greatly when liquidising, as liquidising makes food more bland and uninteresting. Gone are the individual ingredient textures & flavours. If you have a re ipe with chillies in, remove them when liquidising as the operation intensifies the heat.
(If you are liquidising do it with a new machine (must be two speed) as the blades do blunt over time - this operation is so important at this time, so worth buying a new machine if necessary)
Fluid intake is another science in itself - full cream milk - add thickener (eg Nutilis) as necessary at least 15 mins before feeding. Try adding 10 drops of vallia essence/200 ml for added enjoyment. Others such as lemon barley water, lucosade, blackcurrant juice, pine apple juice (can help break up phlem, we did not have this problem) will need thickeners in increasing amounts as time goes on. There is so much to relate. I do hope some of this helps 🙏
Hello, so sorry you are going through this. From experience, i understand the stress. My mom was on a smushy and mushy diet after being hospital after a fall... to pureed.... until she wound up with kidney failure from not getting enough liquids. It all happened very quickly (within 4 months). We found trying to get her enough calories and liquids became impossible because the process of eating/drinking was taking so long and exhausting her. We are lucky she is still with us. She is now on a feeding tube.
or.. what didn't.. work. We were utterly unprepared for how fast this was going to deteriorate. We would find a solution... and it lasted for maybe a few weeks at best. Mom went from eating more or less normally to a feeding tube in less than 5 months.
Hi, I bought a blender and blend everything. My husband has porridge and yoghurt for breakfast. He didn’t like the porridge flakes so I use a grinder and make them into oat flour.
Soups, stews, pies, pasta meals, rice meals are all blended.
Any medication not in liquid form I give with the tablet in a spoonful of yoghurt ( sometimes with the tablet broken into smaller pieces).
For thin drinks we have thickener but I make banana smoothies with full fat milk and that goes down well.
( just about 5 bananas and half a blender of milk… no additives 🧐)
I would advise asking for a referral to a dietician, in the mean time you could look at fortifying foods, a quick guide is here malnutritiontaskforce.org.u...
Try using a small spoon to avoid cramming, ensure each spoonful is swallowed, avoid mixing consistencies in the mouth eg. Peas and gravy.
There are three main issues with PSP and swallowing, 1 the swallow itself is strong but making it happen is difficult, 2 the swallow is weak, both of these run the risk of aspiration. 3 the muscles controlling the mouth and tongue are not working well, this could mean not being able to manouver the food under the teeth to chew or to the back of the mouth to swallow.
My mom who has PSP has been on a pureed diet for the past 9 months. She cannot swallow any liquids - we add a thickener to her tea / coffee. She's been pretty much bed bound for 3+ years and in hospice care (at home) for almost 2 years.
Cream of wheat (cooked in milk) with pureed bananas for breakfast works really well. I puree/blend all her meals (rice + lentils + veggie dishes) the night before, and that allows me to add more water to it the next day. Adding okra (cooked) to the puree makes it viscous and helps avoid choking. Okra is also hydrophilic so you can add more water and still have the meal be very gooey and thickish. It does take a very long time to feed her though - baby / tea spoonful only. Okra is also a mild laxative so it helps keep bowel movements somewhat regular. Yogurt + pureed fruit allows for probiotics and dessert (since the meals can get a bit boring!). Hope this helps. 🙏
This is a suggestion for all readers of this community of caregivers. My sister diagnosed with Parkinson's 16 years ago and PSP-P 5 years ago, started thick food 3 years ago. Then, he begins to lose his voice. Then I paid a phono-therapist to help her swallow. Now he eats normally, drinks normally and also sings! I highly recommend this assistance. Good luck!
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