PSP Association

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Bipa

My husband has been flailing when he falls asleep on his recliner but now these are are becomin* more and more frequent. He grunts and yells out often as he is flailing. I havwpe difficulty at times in waking him up from that state and sometimes when he does wake up he is incoherent - very much like seizures or strokes. Is there someone that might tell me how to handle this and is it a precursor to something worst coming up. I will be seeing his “Parkinson” Neurologist in couple of weeks. In the past month he has also been hallucinating more and more and being very forgetful. Hopefully I could get some answers from Neurologist. Most likely he will just say it is part of PSP and not offer any solutions. It’s a bummer to be handling these situations on my own. Must say we do have pretty good health care service in my Province of Canada. Would love to hear some suggestions if you can. Thank you from my heart.

14 Replies

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My wife has had hallucinations they come and go.

You provide an answer in your post, positive thinking. It can be a bummer being a carer but it can also be a privilege. You were positive in your healthcare being good.

As the old song goes Accentuate the positive eliminate the negative and don't mess with Mr in between . Good luck and God bless. X

Thank you for that reminder. Normally I am positive and do feel it a privilege. Just get frustrated at times.

Don't we all. I'm sure you're doing a wonderful job. Take care, Ken.😊

Thank you Ken

Sounds like dyskinesia, involuntary muscle movement, which is part of PSP. As for the verbalization Larry does that as well. It comes and goes. It will become “normal” as it reoccurs. I don’t think there is anything to do for it.

Hi Bipa, My husband jerks and spasms and sometimes shouts out in agony too. He hasn’t hallucinated as far as I know. His diagnosis is CBD. He often wakes in a confused state.

Recently, I had several different people tell me about a magic blanket. It is filled with weights that are sewn inside of the blanket. Like a giant heavy bean bag, but it’s a blanket. I was very skeptical about it, thought it was probably going to be a waste of money. I figured it was just a fad. But, when a fourth person mentioned the blanket to me I had to see what all the fuss was about. So I bought one.

We’ve had the magic blanket for a few weeks now and it works! I thought it would be too warm but it isn’t and my husband loves it. He doesn’t move at night when he is covered with this blanket. It really is kind of magical. Hubby doesn’t flail nearly as much and we both sleep better.

The only issue that I have with the blanket is that it is heavy and hubby can’t lift it. It weighs 16 pounds. It isn’t difficult for me to move it for him because the weight is evenly distributed throughout the entire blanket. I’m not sure if this makes sense. Here’s the web link.

I can’t copy the link so I’m going to type it out:

Https://magicweightedblanket.com

I’m just throwing this out there in case you’d like to give it a try. I’m very pleased with ours.

I hope that I didn’t ramble too much.

Sweet dreams from I SewBears.

You are so kind. Thank you for your response and forwarding the link.💕

My husband has moments where he thinks he a excavator or something like that,picking up things out of mid air and putting it on the table. .sometimes thrashing in bed and yelling.another gift from PSP.

Dee in BC

Yes, my husband picks things off the air. I ask him what he’s doing and he says “there is a string hanging”. I have to walk away and giggle.

Bipa - this can be part of the baggage associated with PSP. You may also want your doctor to look at the medications he's taking... hallucinations can also be caused by urinary tract infections as well - something to consider. Can I ask what province you live in?

Tim

Thank you Daddyt. We will be seeing his Neurologist beginning of December so will question his medication. He did see his Family Doctor and urinary tract is clear. We are in Saskatchewan. Are you in Canada as well?

Yes... I'm in southwestern Ontario.

Tim

My hubby has had sleep disturbances for many years. It improved slightly after being diagnosed with sleep apnea and stating to use a CPAP machine but he still picks at things that aren’t there and talks, shouts and jerks in his sleep. I moved to another bedroom years ago accepting that I can’t change it.

I love the idea of a weighted magic blanket Sew Beans - I am going to explore this .

Love Tippy

Hi Tippy, Please let me know if you end ip getting a magic weighted blanket and if it helps.

I didn’t move to a separate room but we have two beds pushed together so that I can move over to my side when he becomes restless. Our room looks like one giant bed bc he has a queen and I have a twin. Plenty of room for cuddles but I can scoot over to the twin anytime I need to. I’m going to have to invent my own headboard 😂