Dropped Head

[Joanne19]

My husband is in an advanced state of PSP and struggling on all fronts including mobility, vision, swallowing (now PEG fed) and communication. Recently, PSP has delivered another cruel blow in that his posture has slumped to one side and his head has dropped. Physiotherapy hasn’t made a difference, he can raise his head slightly but is unable to maintain this position, so I’m now looking at supportive devices to try to make him more comfortable. There seem to be a lot on the market so I was wondering if anyone has experience/ advice they could offer on types of support they found most useful. Any help would be gratefully received

[Scottoppy]

Head drop situation is very common with PSP. I got a "Headmaster" neck brace from the orthotics people at the local hospital for my wife. They are also available on line. She can tolerate it for about two hours at a time

Headmaster Neck Brace

[G0lfinggirl in reply to Scottoppy]

My husband has CBD and also has a dropped head and side leaning. We tried a neck support but he didn't like it . His dropped head doesn't seem to worry him. He just puts his recliner back to see things. he has a cushion at his side which helps leaning a bit.Sorry not to be more helpful

[Joanne19 in reply to G0lfinggirl]

Many thanks for replying, my husband often complains of neck ache, so am looking for something to relieve tension a bit

[Joanne19 in reply to Scottoppy]

Thanks for that I’ll look into it. I don’t suppose anything’s going to solve the problem fully but if it works a little then that’s good

[SunriseLegend]

Do you have an OT you can call on for advice? My husband spends all day in his wheelchair which has an adjustable headrest that helps keep his head centred. It also has a slot in side support which helps keep his torso upright. His wheelchair was provided (on loan) via the NHS Wheelchair service and was prescribed/measured/fitted personally for him. We accessed the Wheelchair service via the GP

[Joanne19 in reply to SunriseLegend]

Yes, we do have an OT but seem to have to wait a long time for equipment etc. my husband has a supportive wheelchair with adjustable headrest but even in the reclined position his head comes forwards. I’ll request a reassessment of his needs. Many thanks for your help

[Doodle_Mom]

my ex husband has the same issue and he’s been getting Botox injections which he says helps some with the discomfort but not the head drop itself.

[Joanne19 in reply to Doodle_Mom]

Good to know, thanks, I have been wondering about Botox injections

[LARWLSN]

hi, my mom is also very slumped, has a very hard time keeping her head up, she can raise it, but it is rare she keeps it up for any significant amount of time. We tried the headmaster and she absolutely hated it, so that was a non-starter. the only thing that seems to make it slightly easier for her to keep her head up is a reclining wheelchair. Leaning her back allows gravity to help her keep her chin more level. Admittedly, this solution worked better about a year ago. As with everything PSP, solutions can be fleeting. Good luck.

[Joanne19 in reply to LARWLSN]

Thanks so much for the advice, yes he does have a reclining wheelchair but even when it’s reclined his head still droops forward. As you say, solutions for PSP symptoms can be fleeting so I’m trying anything to help.

[PineEater]

Joanne19

Hi. Try a neck collar for the head drop. What medicines is your husband on? This is important to know before I I could write further. Best wishes and regards to you and your husband.

[Joanne19 in reply to PineEater]

I’m trying a range of collars although he doesn’t seem to settle on anything for very long. He is on Madopar medication, although I’m not sure what that’s doing for him.

Thanks for the help.

[PineEater in reply to Joanne19]

Joanne19I wanted to see if the head drop is drug induced. There are some drugs that cause that. As for madopar is concerned, no definitive answers to head drop association/relation are known. However, if you think this medicine is not useful to your husband in any way, then you can think of reducing its dosage gradually to nil to see if it's connected with head drop. I still would ask why are you giving him medopar and for how long have you been giving it to him and in what dosage?

As for non pharmacological treatment generally, cervical orthosis and physical therapy for 3 months are highly desirable. Wearing a Neck collar is helpful although it provides partial relief. Neck strengthening exercises are required for providing some improvement. When lying down he should try to move the neck to maintain range of motion. This will prevent unnecessary stiffness as well as shortening of the muscles in the front of the neck. The range of motion exercises need to be carried out regularly to prevent contractures of the neck. If he can not do those exercises himself, these can be done passively. You require a physiotherapist who besides knowing his subject fully well, needs to be a committed and dedicated one.

Please note that Prompt treatment is required to avoid muscle damage consequent to long-term overstretch of extensor neck muscles. When the neck extensors are very weak, stretching or pinching of the spinal cord may occur. So, there is the need to watch for symptoms like weakness or numbness in the arms or other body portions like bowel and bladder functions. Best wishes and regards to you and to your husband

[Joanne19]

Thank you SO much for the detailed reply, there’s a lot I can take from this. At the last visit his consultant recommended we start to reduce Madopar very gradually, checking for effects as we go and I have a physio to see him but he doesn’t do excercises independently, only with me or the physio, so needs a lot of supervision.

Your advice is very much appreciated. Best wishes.

[PineEater]

Joanne19 Thanks for replying. I look forward to seeing positive results upon tapering of Madopar if he is not taking any other medicines. Be watchful about the effects. You haven't mentioned why was he taking Madopar? Best wishes.

[Joanne19]

Madopar was prescribed by his neurologist to combat stiffness but I’ve never been convinced of its effectiveness. We did try to reduce it gradually in the earlier stages to ascertain its action but this caused anxiety so it was recommended to restore the dosgage.

[PineEater in reply to Joanne19]

Sorry , I couldn't read earlier. As for anxiety is concerned, there are other medicines as well. In any case, you can again try tapering Madopar. Best wishes to you both

[Tindb]

My wife has CBD for quite some and we I tried a lot of things mentioned in the posts. Her neurologist stated that it's essential to avoid that the frontal neck muscles shortens. Her fysiotherapist stretches her neckmuscle 2 times every week. Additional I do this every morning when she awakens a part of the morning ritual of cleaning.

Until now I cope, but I admit it's not not an ideal situation.

[Joanne19 in reply to Tindb]

Thanks for that, Tindb ,I do try stretching and massage and although this is helpful in the short term it doesn’t seem to have a lasting effect on his neck muscles

[Tindb in reply to Joanne19]

hi Joanne

yes true. It's due to wrong signals from the brain which we cannot change.

However, when she sleeps being relaxt, I notice that there's no tension in the forward head position. To me this indicates that the frontal muscles are relatively ok.