Some things I used to do in the latter stages of PSP

Sometimes I used to lift the back of head up slightly with my hands around the back of the neck and underneath the back of the base of the skull, when the person tried to swallow. I think it helped a bit with swallowing. It is very similar to the principle of leaning the person forward to help with swallowing. I noticed that the back of the head is pulled back or falls back, thus making swallowing even more difficult. If you try it yourself, swallowing some food with your head tilted back, it is harder than if the head is upright. Maybe using a neck brace to support the back of the head when eating may help too but never tried it. Never do this with liquids, only thickened foods!

Sometimes I used to lean the person forward to help with speech too, as I think it helped a bit. Perhaps again by moving the skull forward and stopping it falling backwards.

Sometimes a small amount of painkiller helped with speech and swallowing because these can be hampered by pain in the mouth and throat. However administering painkillers was difficult because they are difficult to swallow because they can taste foul when crushed up and can cause gagging, so I rarely did this. Even the baby oral suspension painkillers I found were difficult for the person to swallow.

Also I would check the insides of the mouth, because the inside of the cheeks can become sore too and can get oral thrush. I would occassionally clean them with a cotton swab dipped with mouth wash. The top of the mouth can be sore too sometimes because the person breathes alot through the mouth and the mouth remains open alot.

I would also get the person to repeat saying "no" and "yes", and count from one to ten with me, and ensure they could read my lips when doing so. This would tell me if they could still speak a little.

Interestingly if I asked the person with late PSP simple maths verbally, they found it difficult, however if I wrote it down "2 + 3 =" on some paper and showed it to them in front of their eyes, the person would often mouth me the answer. Maybe visual stimulation was better than sound/hearing stimulation for people with PSP?

Furthermore, rubbing ibuprofen gel on the arm and shoulder helped with a very rigid and weak arm, and provided the person with less pain and greater movement in the arm. It would appear that a significant amount of people with PSP suffer from this arthritic type problem with one of the arms. I always made sure to wash the gel off later to avoid any potential skin problems. I would on the rare occassion rub a small amount on the front of the neck to see if it would help with speech too, and at first I believe it did but this may have been more to do the slight painkilling effect or simply leaning the person forward.

Watch out for someone with PSP who suddenly becomes larthargic or suddenly becomes worse because this is likely to be an infection and requires medical assistance, rather than PSP itself. This usually explains the sudden collapse in health and sudden recoveries you can see with PSP. It is simply the person with PSP getting regular infections, usually chest infections which sometimes they overcome themselves but can potentially become fatal if not treated in time.

I also tried out various supplements and vitamins but never saw any positive effects from them and generally feel they are a waste of time and money. The medication we thought worked best was very low dose valium for the psychological problems and very low dose Seroquel to help with sleep at night. Also looking back it is probably better to get a feeding tube fitted sooner rather than later if that is what you decide to do, as it will counter alot of stress with regards to swallowing and it is probably better to do it when the person is strong enough to have an operation.

This is excellent information on this website too. I only wish I had read it a while ago:

pspassociation.org.uk/getti...

Good luck to everyone caring for someone with this disease.

5 Replies

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  • thank you superman for going to the trouble of getting in touch, it is the experience of others that do help and I will certainly put into praccctice some of your thoughts and advice.

    regards

    Kay

  • You nust have been an excellent carer, superman, and brought a lot of comfort to the person you looked after. Hope you are able to express all your kindness today, but without so much pain to yourself.

    Best regards, Amanda.

  • This is good stuff and I will share it with mt family forl later. Thanks!

  • Thankyou for the information.

    From Western Australia

  • I thought I would just add that lifting the back of the head when swallowing does seem to help but that this should probably be avoided due to the sensitivity of the neck and pillows behind the head may be a better option. In the end I had no other choice but lift the head due to the severity of the hyperextension of the neck.

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