A lot of times when Sandy gets frustrated and angry with his body, the TV remote, etc., he starts shaking. It almost seems like a tantrum although nobody could shake this much and with such quick rhythm on purpose. Keep in mind that this is a man who has always been so cool, calm, kind, and unshakable. And now thinking back, this started to happen several years ago when he would get frustrated or pissed off at me - he would literally start shaking/vibrating. It was almost comical. He had never done anything like this in the 30+ years of living with him. I just assumed that he had developed a short fuse - totally unlike him, however.
He also did this once when the caregiver tried to transfer him by lifting him up out of the chair (several months ago) and another time when he fell onto the floor. It was a reaction to fear and stress.
So, is this a new quirk of his or is this yet another PSP gift?
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journeyofjoy
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It’s a personality trait that I’m guessing is part of PSP. When my husband gets frustrated he doesn’t shake, but he pounds his fists angrily at whatever happens to be nearby and he kind of make a very loud mean grumbling sound. I let him vent. Can you ask Sandy’s doctor for help with this symptom? Just confirm that he isn’t seizing. There’s medication for anxiety that the doctor might want to try 🤷♀️ Sorry, that’s all I can think of right now
I'm not worried about him seizing. I've heard from several others on this site that their partners have done the same thing. I thought it was really strange the first time or two that I saw this because it was years ago and so out of character for Sandy. He really doesn't appear anxious unless he gets worked up over something, like the remote for instance.
The interesting part is that it is mostly involuntary. You couldn't vibrate that much if you tried.
Sounds like his way to express his frustration with his limitations if it only happens when angry.
I struggle to find things to brighten up her life. Currently I have found she really enjoys Youtube videos of people travelling around the country in Campervans. Who would have thought it! But, the do some lovely videos of where they visit and some of the background.
Larry’s decline is ever so slowly. I think he is slipping a bit more but he has gotten the cold I have. Don’t know how that will impact him. The hospice nurse is due shortly. See what she says.
Larry still wants to watch cop shows. I am so over cop shows. It keeps him happy.
Jeff, I hear you. I am so over youtube clips that repeat over and over. Hey, if he’s happy I’m happy. Sorry about Larry catching a cold. I hope you both recover quickly!
I am mostly over it. Now Larry has it. Not a terrible cold but he doesn’t need it.
Late in the afternoon he asked for oxygen. We have a machine from hospice in the house. I didn’t know how to set it up. Called hospice. His nurse came and showed me how to set it up. Set it up with the extension tube to get it from the living room to his bedroom. He used it last night.
They do make me edgy. I'm afraid I'm the lady who jumps on a chair at the sight of a mouse !!
But we do things when we must !
Actually the thing that freaked me out most when caring for Chris was the realisation that I needed to take responsibility for his dentures !
I went with him to the dentist for a lesson in managing them. I managed - and felt ridiculously proud when I took him for respite and the doctor complimented me on his healthy mouth !!
It's happened only when angry or frightened. Some type of involuntary response to high stress. I've now heard from others who have seen the same reactions in their partners. Must be another PSP thing.
My husband does the same thing, also early onset and out of character. I too believe it’s a reaction to fear/stress and his expression of frustration/anger.
I have a lot of spasticity in my right arm just normally but when I get upset for any reason (usually anxiety) it gets a lot worse. I once was watching a movie with a very suspenseful scene and my arm just went bonkers!
Birdlover, That makes me smile (hope it's not too distressing for you). It really explains a lot about this symptom. Stress, fright, anger...the shaking comes on.
Dear Journey, I see this often in my husband. He doesn’t get really worked up, thank goodness, but as soon as something small (tv remote good example) stresses him, his hand starts to shake. Because words are harder for him now, if I see that hand shaking, I know he needs help.
Marilyn, it could be that it's easier to do this than to find the words to say. It's involuntary though, at least most of it, because it's such a rhythmic shake.
Agree - I think it is involuntary, for Robert, sort of like clenching your teeth or breathing faster when stressed -- not a conscious, thoughtful act, but a "successful" way of easing tension. Marilyn
My husband who passed recently did exactly what you described a few times during his illness. It would come out of the blue and was so out of character for him that I can only blame it on PSP. It usually only happened when he was frustrated with some device or, occasionally, me.
We've compared notes several times and it seems like your husband's illness has been in parallel with what my husband experienced. From the leaning to the side on the Sara Steady to a lack of serious swallow problems. You recently posted about that. My husband's swallowing issues seemed to stem from his brain not triggering his swallow reflex more than actual difficulty swallowing. The good news is that he never experienced any problems from aspirating his food or liquids.
It's very encouraging to me that your husband didn't have serious swallowing issues. According to Robin's article, Sandy is in the advanced stages of this disease but without the swallowing issues. It would be so wonderful to skip this symptom. That part scares me. Also eating is one of the few pleasures he has left. He enjoys his food and a small glass of red wine a few nights/week. He used to be quite the wine connoisseur but obviously can't handle it anymore but enjoys the little bit he has now.
I have always tried to cook healthy meals and I eat pretty clean myself. Sandy has always enjoyed lots of sweets and not so healthy food, etc. Now I keep frozen prepared food around so I am off the hook for cooking a few nights/week. He really enjoys Marie Callendar chicken pot pies, mac and cheese, etc. I figure no amount of fresh vegetables is going to make him well at this point.
I am sorry you lost your husband. I know it hasn't been long. Glad you are still keeping up with the website - it's very helpful to those of us still in the trenches. I guess you are not out of the trenches, you just now have a new phase to go through. I hope you're doing okay and taking good care of yourself.
Pat, if you don't mind me asking, how did your husband pass? The neurologist said pneumonia would be the cause but if one avoids the aspiration part of the disease, then what? Hope this isn't too painful. If so, no need to answer.
I have no problem talking about it. I'm just not sure it's the best idea. We were told the same thing as you were by his neurologist--that he wouldn't die from PSP, but would more than likely die from pneumonia due to aspiration. I'll try to keep this fairly simple because, as I'm sure you know, everyone follows their own path. I think that may still be the case even though our husband's have seemed to follow very similar paths up to the point your husband is at now.
I started writing a reply and found myself rambling and getting into more and more detail. I finally decided it was TMI so I deleted it. What follows is my second attempt.
My husband lost the ability to communicate around July of last year. By that time he had lost most of the use of his left side and was starting to lose the use of his right side. He also started having increasing problems with constipation which caused him a lot of anxiety. This would continue right up until he died. From July on, it was just a steady decline. When his swallow reflex started to fail, it became harder and harder to get enough nourishment in him. We tried just about everything short of a feeding tube which he had always said he didn't want. By the end of last year, he had lost a lot of weight and just continued to lose weight until he passed away. By March, there was nothing left but skin over bone and he had almost completely lost the use of his right side too. I honestly don't know what kept him alive from then until mid May. I'm sure he weighed less than a hundred pounds when he died. I have described this time as slow motion death. It was incredibly hard to watch. Up until the last couple of weeks, he always appeared to be present and engaged and was up in his recliner most days. He rarely ever indicated that he was in any discomfort except for the constipation.
Just remember, there is no way to know what path your husband will follow. I think that depends on what part of the brain dies next.
BTW, my husband loved sweets too and if it was up to him, that would have probably been all he ate. I believe his lunch, while he was working, consisted of a candy bar and a Pepsi many days. Breakfast, if he ate any, most likely was coffee and a doughnut. We always ate a healthy dinner, though, because I was in charge of that.
I don't know if this is at all helpful. Feel free to ask questions as they come up. Just remember to take care of yourself too. Otherwise, PSP will have two victims instead of one.
When my husband gets frustrated, unable to find his words his shaking goes into high gear. But now he shakes right arm, right hand right leg normally. (Normal!)
I have seen Sandy hit the table with his phone when he can't make it work for him. Sort of a tantrum. If it were me, I'd throw a bigger one. Probably throw the phone across the room.
Same here about the phone or remote control! He even gets mad when his food falls off of his fork before getting it to his mouth. It must be so frustrating for them!
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