Mum is currently thinking about a Peg and all that comes with that decision as her swallowing deteriorates. In the meantime we are trying to change her diet to be easier for her. Meals are OK but we are struggling to come up with snacks that she can have on her tray that would be easier for her. Her mobility is poor so she can't use a spoon, knife and fork.
Does anyone have any experience of soft snack food? I'm wracking my brain of what I can leave her that she can enjoy in the afternoons? She love sweet thing but we are told biscuits are not too risky.
Any ideas welcome,
Thanks, Louise
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Go-GURT, also known as Yoplait Tubes in Canada and as Frubes in the United Kingdom, is an American brand of low-fat yogurt for children. It is squeezed out of a tube directly into the mouth, instead of being eaten with a spoon. It was introduced by the General Mills-licensed brand Yoplait in 1998, as the first yogurt made specifically for children.
There’s an article that talks about freezing them as well. There are other brands that are simply fruit. I’m not sure if this is helpful but it’s the only thing that I can come up with at the moment.
Don’t think about it too long. We are in a position now where my husband is in hospital with his first bout of pneumonia and swallowing was becoming an issue. He is too unwell for the PEG so the have put a nasal tube in to get food into him so he can be considered for a RIG but because he cannot tolerate the NG tube he won’t be able to have either of the others. It is possible that the only option will be feed at risk where he will be prone to more infections (pneumonia). Please don’t leave the decision for a PEG too late as I think we did for my husband. As for food, ice cream, yoghurts, trifles, mouse, thick smoothies, mashed potatoes with lots of butter and cheese possibly with a veg purée xxx
I was not ready for what is happening but the SALT therapist we see said it was something we needed to consider sooner rather than later as it may not be an option when we finally believe the time is right. I hope that hasn’t frightened you as that was not my intention xx
We used trifle, tiramisu, any high calorie pudding or high calorie fruit smoothies, thick Milkshakes. Ice cream was a disaster though!!! Sweet always seemed preferable to savoury
I bought my husband a bag of large corn puffs. They tasted similar to popcorn, but dissolved easily in his mouth. I am in the US and a similar snack is available for toddlers. It is sold near baby food. It’s a puffy cheesy corn pop. They are made for little ones and are easy and safe to swallow.
These are our experiences after 7,5 years suffering PSP-RS:
•Add thickeners (eg, Resource from Nestle, Thick-it, Simply Thick-Easy Mix, CVs,etc.) to drinks (soups, water, Aquarius(*) orange or lemon or similar without gas, etc.) till obtain a sufficient glutinous liquid. To drink, it is advisable to use a special cup (Ornamin 815) with the chin as near as possible to the chest. Some mango and peach juices have an adequate consistency.
(*) Isotonic drinks are interesting to help maintain blood electrolytes at the correct level.
•The food must be moderately doughy and in small pieces, around ½”-3/4” if solid.
•The speech therapist has insisted that she should not take meals that "deceive" the mechanism of swallowing that is damaged. The foods that “deceive” are those that have liquids and solids in the same bite (eg, some beans with soup or a soup with pasta).
•Check the patient is sitting fully upright to eat and try not to have distractions around while he is eating.
•Making a puree with a hand blender is always a solution, but it is preferable to crush with a fork until a homogeneous paste without liquid and so as not forget the function of chewing. What is not used is lost!
•We have not experience, but seems having a PEG fitted does not make the problem go away totally, as he can still choke on saliva.
Foods: Mediterranean diet emphasizing on fruits (peeled fruit avoiding the presence of seeds) and vegetables; high fibre diet... no so much pasta or potatoes (always with a size of each piece of pasta between 1/2"- 3/4"). Fruit compotes in small pieces or better crushed using a hand blender. Dates, avocados, bananas, yoghurt, custard and ice cream are well tolerated. Thick milkshakes from Wendy's (Frostys). Mango juices usually have an adequate consistency. Try jelly. Avocado and dates provide magnesium, avocado and mango fiber and bananas the potassium.
During the meal avoid distractions such as: TV, radio, noise. Relaxing music can help.
•Before feeding the patient, give a circular finger massage for 1 minute just at the top of the jaw and under the ears, she can move her jaw better.
In line with these suggestions, I introduce a phrase by Kevin (from chat group HealthUnlocked): "Food and favorite foods are really important. Food is is comforting and if familiar it gives so much pleasure in a diminishing world."
•In case of choking, raise both arms at shoulder height, breathe only through the nose intensely if posible. I not, inhale air intensely but not very fast through the mouth. Retain air a couple of seconds and then force the cough. •The physiotherapists have exercises reinforcing trunk muscles to improve the cough response to choking. Engage a good speech/swallow therapist to learn swallowing techniques.
Everything listed is fabulous, and I have taken note of several great suggestions! I discovered years ago a product called Unjury ... my Mom loves them (chocolate splendor) is her favorite. Protein shakes, low sugar - she is diabetic. I realize it’s not a snack, but it’s a great alternative in between. Unjury.com - they also have unflavored to add to other foods— great protein option!
My father is starting to have swallowing issues and is being regularly monitored by a speech therapist. Even after the routine check she has rapidly followed up twice recently when I asked her to especially after a UTI meant dad could barely eat, and although he is stronger now and is going to get some angled cutlery for us to try and some special drinking cups that cost a bomb but would allow Dad to drink in small sips by keeping the drink at the last level he sipped at (we will see when it arrives!). She has also provided a list of possible foods and what to avoid. Hopefully your Mum is getting this kind of help - this was via either Social Services of the GP.
Below I am pasting a useful article I found recently on the PSP Association FB page about foods:
When Rita Jane Taylor was diagnosed with PSP, husband Glyn, alongside daughter Angela Thomas created a system to help Rita with her food and ensure, despite swallowing difficulties, she could still enjoy a varied diet. Angela shares their feeding system in the hope that it helps others.
Angela said: “We experimented, learned and best of all – Mum thrived. She ate a very varied diet of meat, fish, vegetables, fruit and desserts, right up until two weeks before she died. She never once aspirated her food (always our biggest worry) and Dad's care and patience meant we spent many more happy weeks and months with her than we had expected.
“Our number one piece of equipment was the food processor. We used ours so much it eventually wore out! Next I acquired little plastic pots to hold 100g, 75g and 50g. All pots were labelled with the food type and date to ensure a good rotation in the freezer and easy access for Dad.
“We used the larger pots for the protein element of Mum's meals, such as meat and fish. As Mum's disease progressed we moved on to tinned meat including minced beef in gravy, chicken in white sauce, meatballs, beef stew and even corned beef, which mixed very well with tomato. We developed a number of different combinations that were received well by Mum.
“The 50g pots were used for vegetables. We’d cook a big pot of one type of vegetable, then blend it in the food processor. In order not to have everything sloppy on the plate we’d put the pureed veg into a sieve before putting it into one of the small pots – this drained off most of the excess water and made the veg easier to manage.
“Some veg worked better than others. Carrots, parsnip, butternut squash, sprouts, green beans, broccoli, cauliflower (to which we often added some grated cheese and a cheesy sauce) were excellent. Pulses were inappropriate, along with peas and sweetcorn, because of the skins. We learnt that courgette, aubergine, onion and leek didn't work well either. Mushrooms and tomatoes didn't work well alone, but could be added to the proteins successfully. We abandoned potato quite quickly – it doesn't freeze well in individual pots and Mum found it difficult to swallow, even when blended with a sauce.
“At first, we’d peel and cook fresh veg, but after a year or so we discovered that frozen veg worked just as well. The 75g pots we used for either a 'tea-time sized' protein meal, such as macaroni cheese or spaghetti Bolognese (again we used tinned varieties which blended well), or desserts.
“Our grief is still raw and tender, we miss her so much but we are glad we were able to play such a part in making her last year’s more agreeable. Her sense of humour never left her. She made it easy to care for her, even though some of the things we – and especially Dad – did were laborious and tiring, we never minded because she was such a joy and gave us such joy.”
Read the full article in the next edition of PSPA Matters.
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