My friend's head lies full forward now when she is sitting. She can only lift it when verbally cued, and then only 1/4 inch.

[patandlinda]

Is a soft neck brace helpful? Thanks for your comments.

[jimandsharynp]

That's a tough thing to deal with. Currently my wife's neck is fine as far as up and down but side to side movement is almost impossible. I'd try the neck brace if it doesn't make the patient uncomfortable. Jimbo

[Hidden]

Hi patandlinda

PSP sufferers often have their head tilted backwards, but many have the head tilted forward as in typical Parkinson's. It is sometimes called "drop head syndrone", although some like to use this term only when dystonia of the neck (strong muscle spasms that keep the neck rigid). The muscles at the back of the neck become weak and the chin drops on the chest. My wife has this complaint.

My personal preference is not to use medications. Soft collars have been used (but not able to improve the actual condition- the head will continue to drop after removal) but since they need to be continually worn they can cause discomfort and sometimes put too much pressure on the chin. Physiotherapy can help, but cannot correct the condition in PSP (Parkinson's).

Cheers

T

[jillannf6]

Hi

I too not have problems yet euth my head but my neck can b v sore I use a neck pillow fr sleep;ing with

It helps

Lol Jill

[Hidden]

Hi Patandlinda,

My wife's head was so chronically lowered that her chin seemed to be attached to her chest. A soft neck brace applied for an hour or so at a time gave her some relief - not least because the neck rigidity was interfering with her speech and swallowing. Then her neurologist tried a very weak dose of botox in each of the muscles at the side of the neck. This worked for a short while but not until he tried a stronger dose about six months ago did the head become significantly more upright. We were strongly advised to capitalize on this improvement by daily periodic use of the soft neck collar, which we have done. One of the reasons for this is reluctance by the neurologist to apply more botox because of the risk of side effects affecting swallowing and possibly even breathing. Incidentally, the second injections coincided with my wife having a PEG fitted because she could no longer swallow solid food or an adequate amount of liquids. Now she eats normally for pleasure only - just liquids/ purees etc - but the improvement in the angle of her chin not only facilitates this it also means she can look people in the face if they are at her own level.

In other respects such as sideways movement her neck is still rigid.

Good luck!

Christopher

[Peter3]

Hi PatandLinda,

My husband has had considerable neck stiffness with his head being pulled backwards to the point he can only look upwards also he was leaning to the right which made it very difficult to move him and sit him in his wheelchair. His neurologist offered him botox but he declined it. However, he has accepted a fairly high dose of Baclofen which he has been taking for the last month. He now holds his head in a more upright position and the bend to the right is also much improved. The down side (there nearly always is with taking medication) he is sleepier. In himself he appears to be more comfortable.

Best wishes

Peter3.

[jillannf6]

hi i am on the new site and can reply to you i hope

is this the `pep which is causing the neck to become rigid when in a fwd position ?

i have neck problems nut am trying to keep my posture a s upright a spossible

iet is too late for your friend to do this now so it s difficult to know haw tot suggest =- i sleep with a neck pillow to alleviate the worst pain of it all

is her neck also v painful?it is worth checking it out with the neuro if you have one for her

';['

lpljill

huugs and xxx

[cabbagecottage]

I find if I ask my husband to look up raise his eye towards a high shelf we have his neck raises as well . Of course keeping it up is a different story !