PSP Association
5,553 members7,574 posts

Neck Problems

Just I thought I would mention the neck problem associated with PSP. Some have mentioned it on this forum and I believe it exacerbates the swallowing difficulties people with PSP face in the latter stages of this disease. The back of the head is either pulled back or falls back, and the neck itself becomes more rigid and stiff over time too. My mum would sometimes complain about pain in the neck and it would appear others with PSP suffer from it too. I found if I massaged her neck muscles slightly it seemed to give her some relief and in the end it got so bad I had to lift the back of the head up to make swallowing slightly easier.

A number of suggestions I have read on this forum that may help the neck problems seem to be:

1. Botox injections into the back of the neck muscles, thus reducing the contracting of the neck muscles.

2. Muscle relaxants. Again relaxing the neck muscles.

3. Possibly a neck brace or soft collar to support the back of the head and neck.

5 Replies

Thanks for the suggestions, hubby's neck is stiff and he is tilting the neck back, and i wonder how he is going to eat and swallow with his head like that i have to hold it downwards at times. if anyone has more hints would love to hear them!


SInce seeing your advice in this I have also found supporting mum's neck when swallowing helps-it only needs to move about 2 inches for a difference to be noticeable. Her neck strength varies from hour to hour.


Yeah the neck problems definately get worse over time. As I said massaging the neck muscles seems to relieve some tension and maybe a small amount of painkiller, such as the baby oral suspension painkillers they sell in the shops, may relieve some pain discomfort in the neck. First the neck becomes very stiff and eventually it starts to fall back and requires more support. Eventually I bought a neck brace but did not get to use it much as she passed away soon afterwards. The neck brace would definately come in handy when going out in the wheelchair but I do not think it was much use when it came to eating because they cannot move the jaw much when they have a neck brace on. Also we used to use a pillow to prop her head and shoulders up a bit when sitting in a chair and that seemed to help a bit.

I did wonder if some of the neck stiffness and jaw locking problems occurred due to the medication my mum was taking. Maybe it could have been her body had become used to the sinemet dose(dopamine) she was taking and it needed to be increased, or it may have been a possible side effect. Not that I am advocating anyone alter their medication they are taking as this would potentially cause allot of problems.


Tho I'm in the earlier stages, the backward tilt of my head has been a constant for months which my doc says is due to eye-tracking problems; easier to look up than down.. My doc prescribed a muscle relaxer some time ago which has helped a lot. Tho he also started me on a pain patch last month, that doesn't seem to help with the neck but the muscle relaxer does. He did say if my neck pain worsens in spite of medication, I'll have to come in for an injection in my neck. Said it creates a "bubble" of long-acting medicine around the involved nerves. Don't recall if he said it was a steroid injection or botox, tho I'm leaning toward steriod. So far, so good, tho.


I have thought about this further and while a neck brace is probably too restrictive, a soft collar may work, but only if also allows the jaw movement too, because breathing through the mouth is important. But prevention is probably better, so muscle relaxants to stop the pulling back of the neck may be the best option.


You may also like...