Dropped head syndrome

[Helper2]

I'm looking for advice on how to deal with dropped head syndrome. This has now become such an issue for my PSP client that eating out while in her wheelchair is no longer safe. Being unable to hold her head up also means she cannot enjoy watching what's going on around her. Does anyone have experience of using aids to help correct head position? Thank you.

[Millidog]

I can't help with any personal experience but if you scan down the page you will find related posts and their are a number of posts with information that may be useful about this. Alternatively try using the search facility and you'll find a number of posts with responses about equipment used and OT help. Best wishes Milli dog

[LuisRodicioRodicio]

Hi Helper2!

These are our experiences and information about the problem:

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.

pmcdonough1 suggest: “My husband had PSP and when he started to aspirate when drinking his doctor prescribed Donepezil 10 mg (Donezepil is a cholinesterase inhibitor) . After just a few doses his eyes lit up like there was a light turned on in his head. His swallowing improved. After a couple years when he started aspirating again his doctor increased the dose of Donepezil to 20 mg. His speech therapist was amazed at his improvement. In the United States on the NIH website under Progressive Supranuclear Palsy it lists that ”some PSP patients” benefit from up to 20 mg of Donepezil.

Richard33 point out: “Cholinesterase inhibitors are not recommended if severe motor features are present, as any positive effects on memory may be negated by worsening of motor symptoms. That said, everyone's journey is different and it may help someone where they still have good mobility. Let doctor know about the article on the NIH website as a resource.“

Hug and luck.

Luis

[Ratcliffe in reply to LuisRodicioRodicio]

Luis, this is amazing insight, and something that as a past carer I had no idea.

I really had no clue how to help David with swallowing etc. He suffered really badly with the dropped head, which was a nightmare when I tried to trim his beard 😄

This is a great read for anyone currently wondering about the dropped head part of PSP.

[LuisRodicioRodicio in reply to Ratcliffe]

Thank you Ratcliffe. My goal is to be useful.

Hug

Luis.

[Scottoppy]

My wife has a similar problem and has been given a "Headmaster" neck brace by the orthotics people. Google it for more info but it is a comfortable, adjustable brace that she tolerates better than the old foam one. Also try a 'V' pillow at night and in her chair this helps to keep the head straight and comfortable. Best Wishes

[LARWLSN]

We bought my mom a headmaster also...we didn't get to use it because mom absolutely hated it. It turned out to be a solution too late for helping her eat at any rate. Even with the headmaster, we couldn't get enough food in her by mouth and she went into kidney failure. She is on a feeding tube now. Head still droops... we have discovered that a reclining wheelchair helps keep her upright well enough.

[easterncedar]

One wheel chair my guy was prescribed came with a small support extending from the head rest that held his chin up. It helped for a bit.