Neck rigidity,

[Karynleitner]

Dan’s neck is beginning to lean to the left. It looks uncomfortable, and is causing his whole body to lean to one side when he is in his reclining lift chair. At night it is also leaning to the far left in bed. I have been putting him in bed earlier ( with tv on for entertainment ) . In bed we support his neck with pillows, but it still is very tilted. We try to straighten him in his chair, but it does not work. I am thinking he needs a different chair, but am wondering if there is anything I can use to support his neck, I’ve tried pillows but with the headrest of the chair, that makes it uncomfortable . Any ideas? Will this likely continue to get worse, or will we just get a new challenge .

[Katiebow]

Bens neck does the same and the physio ordered a horseshoe shaped fusion for his recliner chair and he always wants it when he is in the chair. I perchased a pregnancy bolster pillow (U shape) that goes either side of the body ( rests his arms on this) and a V pillow on top of that to support his neck. Ben can't lay on his side due to back/ neck rigidity, but he seems comfortable with this extra support. Hope that helps.

Kate xxx

[Karynleitner in reply to Katiebow]

Thank you for your reply. Does he sit on the horseshoe cushion? Dan likes to have a wedge back support on his back . It works fine for a while, but if he gets tired, with the back rigidity it makes him slide forward.

Thanks again.

[Katiebow in reply to Karynleitner]

He doesn't sit in it, acts a detachable neck cushion, you remove the head support cushion at the back of his chair ( held on with Velcro strips) and replace with the horseshoe shaped cushion, his neck fits into the cutaway part of the cushion and the other part surrounds his head, offering maximum support for head and neck. He always insists that he uses it so must be comfortable for him.

Love Kate xxx

[Karynleitner in reply to Katiebow]

Thanks. I do not know if the chair neck cushion on his lift chair Is detachable. I do not think so, we may have to purchase a new chair. He looks miserable.

[Katiebow in reply to Karynleitner]

We are lucky in that the urhorities provide a chair for us and the NHS physio recommended one of these head supports.

Love K xxx

[Zeberdee]

Hubby’s leans to the right and has been doing so for sometime. My daughter purchased neck pillows (sort you use on aircraft) and we also have a V shaped pillow. Being bedbound it’s just a case of trial and error to prop him up in middle of the bed. Sorry but the leaning has not improved and I very much doubt it will. With PSP there is nothing good. Jx

[Karynleitner in reply to Zeberdee]

Thanks for taking the time to reply. Dan seems to do better when he is in bed. We use pillows to support his neck and he seems comfortable. During the day as he sits in a recliner, his neck tilts more & more. By dinner, he is eating leaning over the side of the chair. A neck pillow does not work I’m his chair. We still help him walk a few steps to get him to a chair to ride upstairs. The rigidity makes it at leAst a two man job. His back is rigid also. Mobility is getting hard. Wheelchair is difficult also, as I can not get him in and out of the chair alone.

Would you mind telling me how long your husband has had this disease.

Thanks again

[Zeberdee in reply to Karynleitner]

Hi my hubby was diagnosed with PSP in 2013 as said in my previous response now totally bedbound and cannot move at all without two people. He is unable to speak so we are unable to know whether he is comfortable or not. Everything is second guessing. Jxx

[Karynleitner]

What this disease does is almost inconceivable. I know Dan is here somewhere. Sometimes I would like to scream. Most days he says about 10 words. Has a hard time answering simple 1word questions, yet comes up with a familiar phrase. Today all he said all day was, “quit driving so fast.” He could not even tell me if he wanted his sandwich on bread or a roll. He even has a hard time shAking his head for yes or no. Our home is not well suited for a wheelchair , so be do have him walk, but it takes one person in front and one in back. Sometimes we have 3. He can no longer take even one step alone. It’s such a struggle .

Is your husband strictly at home now ? Dan loves to get out, even just for a ride . I can take him if I have help getting him in and out if the car . Your hubbys progression seems quick like Dans. Thanks for sharing. Good luck to you.

Karyn