Hi there,I'm new to this group. My mom was diagnosed with PSP back in 2020. She has progressively been having issues with her swallowing. Initially she was able to eat solids like steak and corn and still drink thinner liquids but overtime her swallowing has become more difficult for her and she now has had softer foods and thicker fluids.
However, over the last 2 days she has been clenching her teeth and it has been very difficult to open her mouth to give her food. I'm not too sure if this is related to PSP or she in some other sort of pain. On a note, she is non verbal now, just yes and no, but she's been very quiet now so we can't ask her.
She did just come back from the hospital this pass Tuesday and had a UTI. So I'm not too sure if this is related but i dont think she is in pain UTI as she is on the end of her antibiotics. She was also bed ridden for the past 5 days in the hospital, so her legs are a bit stiff. I don't think these are related but thought I would mention it.
If anyone has had any experiences with PSP and the jaw locking , please let me know your thoughts. I have tried massaging my mom's jaw to relax it and used a warm towel. She just has a lot of meds to take and as long as she can't open her mouth, we are unable to feed her or give her her pills. I know feeding tube is an option, but we are not familiar with the process yet and I am just nervous as it may take a while for it and we still need her to eat and take meds for the time being. I don't want her to go back to the hospital.
Any suggestions would be appreciated.
Thanks.
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Mkfernz
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These are our experiences and information about the problem:
"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.
Feeding thier loved ones they they sometimes will cough, sneeze and nose starts running, despite feeding with puree and using a syringe.
Dance 1955 and David 750 suggest the use of an atropine solution that is used as eye drops in ophthalmology. These drops are applied under the tongue of the patient about 15/45 mins before food helps with the secretions."
hello! Something similar happened to my mom after hospitalization due to an infection. She had a stage 4 pressure ulcer that required debridement and IV antibiotics. Then she got COVID. What our neurologist shared was that a PSP patient can be greatly impacted by an infection. After my moms infections, she was much weaker and progressed. It was to the point we felt the end was imminent. She wasn’t able to open her mouth or chew. We fed her by spoon very very slowly thickened ensure and other puréed foods. We briefly tried a mouth syringe but that led to a risk in aspirating so I would advise against that.
In my moms case, things got worse and she wasn’t able to improve or recover in her ability to eat and chew. She got IV fluids thank goodness because she had a line for her IV meds. She quickly lost 15-20 pounds over a month to six weeks that we tried to feed her by mouth.
I would suggest that you evaluate your options before your loved ones lose weight. Their feeding tube process in the US was very simple, we needed a physician referral and yes the hospital was very busy but once she got the referral the process took a few days. Perhaps speak to your GP and discuss options, I hope that where you are the indication of a feeding tube can be expedited appropriately
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