Hello there everyone. I wonder if anybody can help. My beautiful mum has had PSP for 7 years now. She is at the stage where she has to be fed very soft foods and has thicker in her fluids. A peg has been discussed but sadly it’s too late to do this now. My mum’s neck is extremely weak and her head falls forward all the time. This makes feeding, giving medicines extremely difficult. A head up collar was supplled but was of no use as didn’t keep her chin up. Does anybody know of any medical appliances that would support her chin to make eating etc easier.
Want to send all my love to all those suffering with this very cruel condition and your family and carers. You’re all amazing. Much love Sian xxx
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Dollybert
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Hello SianMy wife has MSA which is similar to PSP and so despite having our own forum now, I still keep an eye on this PSP forum which was the inspiration to us setting a forum up specifically for Multiple System Atrophy.
At a recent MSA Support Group our physio recommended the 'Head Up' collar. Here is a video that gives more information which I hope is helpful. youtube.com/watch?v=Db7yrID...
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.
My wife was diagnosed with psp 4+ years ago. We have used various devices to help hold her head up at times. Currently the most comfortable for her is just a towel rolled up and forced under her chin.While I feed her we don't use anything. She is on a pureed diet.
This may seem a little barbaric but,
I typically put my hand on her forhead and force her head back as I spoon feed her. Not very scientific but it works and gets her fed.
We are trying botox injections to the neck area to try and correct this problem for my loved one. She's only had 1 session this far but seems to be working. Your neurologist can do it for your mum. Maybe ask and see what their medical opinion is. Best of luck to you
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