I am new to the group here. My father in law was diagnosed with PSP. His eyes are always bothering him. He has a hard time using utensils at dinner. What has helped him is using a spoon instead of a fork. I just thought I’d pass it along in case some one else is struggling with this as well.
On another post I read someone used a tv mount to help see the tv. And we didn’t think of doing this, I’m glad we are not the only one going through this.
Dear Grape1
Has your father in law tried prism glasses whilst eating? My husband lost his downward gaze and found them really helpful in locating the food.
Best wishes
Tippy
I didn't get a chance to try it with my father before he moved out to care but I recently found a scoop plate. Normal plates weren't doing the trick as he would spill food on the edge of the plate. Spoon was the only cutlery he could use.
An universal cuff for utensils might also be helpful, it was recommended by mom’s occupational therapist, unfortunately mom can’t use it anymore since she is having a hard time positioning her arm/hand to get the food inside her mouth, but we did see the benefits for a little bit.
You can find those on amazon.
Welcome to the group, hope you find it as helpful and supportive as I have.Another cutlery tip is the Oxo good grips cutlery, where the handle can be bent, so that someone with limited mobility can still reach their mouth.
We used a scoop plate and it definitely helped.
What are the issues with his eyes? Movement, focus, double vision, dryness?
Good luck with everything.
Thanks for letting me know about the oxo utensils. Your the second person to mention the scoop plate. I think that will be very helpful as well. Dryness, we do drops twice a day. He washes his eyes with baby shampoo and hot compresses multiple times a day.
He. Can’t focus at all. His balance is off really bad and has had multiple falls already. He is going to PT.
He is no longer able to track movement or make his eyes go downward. He has to move his head to see lower.
Sorry to say the eye problems sound very familiar. Mum found one eye worked better than the other and covering the poorer eye she was able to see better than with both. Do you know if his eyes close properly at night? Quite often they don't and this adds to the dry eye problems. There are ointments that can be applied at night to help if this is an issue. xxx
Hi Grape1!
I'm sorry PSP/CBD/ etc. has entered your family.
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 were 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 and if the notes-document with our experiences and our informations are of someone´s interest, do not hesitate to let me know to send it by the private mail of this chat.
Hug and luck.
Luis
These are our particular experiences about the subject of suppling food:
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
Our solution (which often works but sometimes does not) is as follows:
1) With the fiber-free part of the head of an electric toothbrush, we massage the outside of the jaw and the inside of the mouth to stimulate the muscles that open the mouth. Also, 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.
2) Place a big napkin under the chin.
3) With the caregiver's left hand, the head is raised and with the right hand the spoon is inserted into the mouth and it is removed empty.
4) The head returns to the position where the chin is close to the chest (in this position it is easier to swallow) so that patient can swallow better.
5) Steps 3 and 4 are repeated as many times as necessary.
6) When feeding with a small spoon is very slow and difficult, we have used a 60 ml syringe, introducing the pureed food between the teeth and the cheek in small doses (10 ml each time).
It is normal for the napkin to get very dirty.
Note.- On the advanced phase in which we are, the patient tends to be frequently drowsy. If he is very sleepy it is useless to feed him. It is preferable that you take something the patient like very much (An ice cream for instance) to entertain the stomach and not force feed. This happens especially at dinner and in the morning our patient eat breakfast very well (generally the easiest and fastest meal of the day). Lunch is usually quite acceptable too.
•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.
Hoping to be useful to you!!
Thank you so much for the helpful tips. He is still very strong willed and sharp. Which I am very thankful for. I appreciate knowing what can happen as the disease progresses, many of you have already walked the path.
Can echo the suggestion of good grips OXO cutlery as they have helped my Mum. If you order from certain sites offering disability aids then you may also be exempt from paying VAT,have a look. I used completecareshop.co.uk Good luck!
Our progression with the eating was: 1) adaptive utensils (as mentioned) which are thick handled, or you can get foam tube handles which slide over the original ones providing a thick grip, 2) a tablespoon and bowl, with food precut 3) filling the spoon with food but letting the person pick it up and put it to his/her mouth 4) when that no longer works, spoon feeding the person.
Adult bibs are also helpful (they wipe clean) or one could use an apron.
Finger foods are good to offer if the person can handle them and thus have some self-feeding even along with spoon feeding.
I see a lot of very excellent comments here. I wanted to add that sometimes it can be helpful to raise the height of the plate to accommodate some of the vision changes. That also has the benefit of making it easier to get from the plate into the mouth.
Suction Machine for Secretions!
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