I don't post much on here, but just wanted to begin by thanking everyone that contributes to this forum, it has been a constant source of information but also comfort in knowing that my family is not the only one battling with this terrible disease.
My mum was diagnosed with CBD January 2019, and unfortunately, especially in the last year, her condition has increasingly detereorated. She is keen to keep her independence as much as possible and the thing she struggles with at the moment is drinking out of a cup and eating her meals.
With regards to drink, which is the biggest concern as I think she doesn't drink enough, she really struggles getting the cup to her mouth and controlling her sips. So my question is has anyone found any drinking aids that might be helpful?
With regards to eating again the movements are very difficult, she can still do it but often misses her mouth and just getting food on the fork is quite difficult (spoon is totally out of the question). Again are there any utensils which anyone has found useful?
I know we are approching the inevitable point where she won't be able to feed and drink by herself, but it would be nice for her to keep her independence for as long as possible.
Thanks so much for your help!
Written by
SilP
To view profiles and participate in discussions please or .
Everybody with PSP/CBD has these problems so you will get a lot of suggestions. For My Margaret we have found that the ‘Munchkins Miracle’ cup is very good (the benefit of having a young granddaughter) either with or without handles. We first used it overnight as it does not spill but Margaret uses it during the day now. For eating Margaret uses a lipped plate, we got ours from NRS Healthcare ‘Wade Dignity Ceramic Plate’, in conjunction with long handles teaspoons. There is some cutlery out there with big grips but we are not using them yet and I am sure somebody will recommend. All the very best in caring for your mother.
We used fat silicone/ bamboo straws in mugs for thickened fluids although the local Speech Therapist said straws were not advisable she conceded when she saw my husband drink successfully with minimal coughing. The mug stayed on the table with a silicone cover to reduce spillage and the longer straw enabled independence- though as time went on he needed someone to hold the straw/ mug.
Non slip mat under plates and wide handled cutlery also helped.
Lots of trial and error but like you we were keen to maintain we independence as long as possible.
Thank you for your reply Tipoy, unfortunately she cannot suck from a straw. Such a bizarre disease, so hard to understand what is happening to her sometimes
Hi SilP!These are our experiences hoping to be hepful on your particular situation:
Prevent solids or regular liquids from reaching the lungs to avoid eventual “aspiration pneumonia,” (Besides falls, this is another very important risk.)
• 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!
In advanced stages of the disease, feeding the patient is a big problem. The patient is so bent forward and cannot tip his head back or move it, so feeding is now very difficult.
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 as: Wendy's (Frostys) - Go-Gurt - Frubes. 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."
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
I am not a phisicyan.
During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers
Wishing the best for you and your family I am sending by the private mail of this chat the notes-document with our experiences and our informations with the hope that it will be useful for you and other caregivers.
Hi I find letting hubby eat some foods with his fingers help obviously not all foods things like porridge a long handled small spoon seems to help he is mostly ok with drinks at the mo
HI, i use a little bit of thikner but what i found at the end is just the ammount of drink they have in their mouth . there are exercise that your mum can do to improve all muscles of mouth i found my husband improve the swallowing and important are breathing exercise too have a look here swallowingdisorderfoundatio...
For your mum's drinking problem there is a cup called drink ez it's a battery operated cup that has 3 control levels. She simply hits the button which is a good size button then fluid will come through straw and hold in place for her. Best on the market cost around $50 but it's so worth it makes drinking effortless on her part. Can get heavy as she gets weaker I use a hand towel folded so when we sit the cup on lap of my loved one the straw is right at her lips. Then for eating if soups or other liquid forms of food a baster that are thin medicine syringes work great sometimes you have to remove the center small hole to make it bigger. Or if your doing blended or pureed food a small turkey baster works well. Hope this helps. Good luck to your mum and to all!!
We use a toddler sippy cup with the lid. It's a good size to hold with one or two hands and the amount of liquid coming out is controlled. Hope this helps.🙏🌼
When my husband started having problems with liquids we started drinking out a a “Stanley” cup there is a button you have to push for flow and it only lets a limited amount of liquid come through.. as for food we ate a lot of finger foods.
We used Ornamin insulated mugs with spouted lids and an internal cone, the cone makes it easier to drink from. Also OXO easy grip cutlery where you can change the angle of the handle to suit the person.
My husband uses a Provale cup by Reliant Medical products. His first was sent home with him by the speech therapist at a rehab center. I have ordered a second one—pretty pricey, but worth it . It allows only 5 or 10 cc of liquid out at a time, depending on which one you get. I still use a thickener even with this cup, though. I like the sippy cup suggestions made, though, and would try those first if I were you bc of the expense.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Can an ipad aid communication?
Letting drinks dribble out
Communication Aids
Eating is optional for my sister
Drinking cup - Provale 10cc
