My husband was diagnosed with PSP just two months ago, after being diagnosed with Parkinson’s six years ago. We had suspected PSP for about six months because of a number of symptoms but I’ve been especially curious about the effects of medication now.
Bob has moments where he is almost trance-like when trying to throw something. He’ll go to toss his shoe toward the wall and not let go of it. He’ll continue to go through the motions but not be able to release it. And this could go on for literally hours with his insisting that he will do it. And it’s not just shoes, it’s trying to toss the pine cones onto the tractor cart or toss the bedsheet across the bed.
Since I have not seen any posts about this type of behavior, I am wondering if this could actually be more from the carbidopa-levodopa than a PSP symptom. Any thoughts?
Thanks, Dorie
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DeDeDickson
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My husband did this before he was diagnosed so wasn’t on any medication. It first happened when he was trying to throw a tissue into a waste paper bin not very far from his chair. He said he had forgotten how to let go. We also went to the park to play tennis and he couldn’t serve as he didn’t let go of the ball. When he finally went to the GP after months of nagging him, I sent him with a note of 25 symptoms/changes I had noticed. This was one of them.
As Kevin said, welcome to this site but sorry you had cause to join it. When we eventually saw the neurologist he had my original symptom list with him and without hesitation he said he has all the symptoms of PSP. He never singled any out so presume it is a symptom.
Understand. When I mentioned the freezing to the neurologist, he just kind of nodded as if it was all part of the disease. But this was before the PSP diagnosis and reading that the Parkinson’s meds can have ill effects on PSP patients, I guess I was sorta hoping those episodes might be drugs-related.
I appreciate your welcoming me to the group ... and, yes, it’s not necessarily my first choice for social clubs! 😉 But I definitely am grateful to have all these new friends!
Hi Dorie. I’m Rhonda and I was diagnosed with PSP 3monthd ago and I stopped taking my Carb/Levi for and couple of months buy found it fig help a little for some of my shaking leg! I don’t have turmors I have more like I’m jamming to some music . Anyway I’m not sure if it’s doing anything at all anymore so will probably go off them all together! They don’t do crap o la! Lol.
I am wondering when Bob will decide to wean himself off of the carbidopa-levodopa. That will need to be his decision but I suspect he is waiting for his April appointment with his movement disorder doctor. We haven’t seen him since the PSP dx as it was his Physician Assistant that ordered the MRI and gave us the results.
Bob also takes ripinerole, which the doctor prescribed for what Bob calls “restless leg syndrome” . There again, I wonder if he will try to do life without that.
Let me know if you notice any difference once you go off them.
Well I have been off the carb/Levi. A the only thing I feel is in my bottom jaw it seems to tighten and kinda go sideways ... you probably can pictures that right? 😂
No not really not really even sore. Just tightens But to tell you a little secret being a woman and having incontinence trouble the carb/Levi definitely helps with that for me one pill every four hours so I don’t worry about my P problem
Many on the site have described " freezing ". My husband did this as well.
So I guess it is a symptom of neurological problems. PSP seems to be a group of problems but no-one has all of them.
My husband said his body would not do what he was wanting it to and he didn't remember how to do it. It must be terrible for them. Getting stressed seems to make it worse. I used to try to distract him - although it was often things like being halfway sitting on the toilet !!!
Thanks for the response, Jean. I’ll have to take notice when these episodes happen and see if I can connect it to stress. I know it is frustrating for them. And Bob is still so insistent on being independent that he often will not let me intervene.
He wasn't stressed before it happened. It came out of the blue. But stress made it more difficult to "unlock" the freezing.
I found it so difficult allowing Chris to maintain his independence when it increased his risk of falls etc. A PSP sufferer on this site, Peter Jones, who has sadly died, encouraged me to let him take these risks. Otherwise we infantilise them before it is necessary.
I see what you mean. It isn’t stress that brought on the freezing but feeling stressed while in that state could make it last longer (?.)
I recently attended a caregivers retreat and we talked about different roles that caregivers take on. I know I am a protector but am learning I need to let go of that and become more of a companion. Two steps forward, one step back.
My husband said he would have to instruct his legs to move. I distract / coach him walking now. He often responds quickly when I start talking and sometimes we need to stablize, take a deep breath then count out loud. Lately, even our best efforts are only good for a few steps😐 I haven't noticed a freezing problem with eating or changing the channel!!!!
Speaking of stressfull -- Our worst gait freezing events would happen when Jack was still using the walker to go into a restaurant or store and someone would stop to help us!!!! He would turn to stone and no coaching tricks would work - We have switched to using the wheelchair when we go out nowadays.
De De , my husband was in the Air Force and has PBP too. I guessing you know about the VA being so helpful with ex military vet's with this horrible disease?
I’m glad you said something. I asked Bob recently if he thought the VA could do anything to help us. Bob did not stay in for twenty years, he was only in for his obligatory six years. Do you know if he is still eligible for assistance?
Yes I think that my dad did this too, at first he reported that he would freeze and not be able to walk onwards if he stopped to chat to someone in the street. He shrugged it off at the time as he had bad arthritis in his knees and put it down to that. Later in his progression he would hold your hand and his grip became tighter and tighter like a vice and wouldn’t let go as if once an action was started he couldn’t stop. The neurologist asked dad to clap three times and dad couldn’t stop so he produced an ‘applause’ sign, which I gather is a linked symptom of PSP. Ruth x
That all sounds familiar for Bob too, Ruth. He has those moments on the golf course where he couldn’t give up his stance after hitting the ball. And then the clapping exercise, Bob wouldn’t stop at three times either.
Also my dad didn’t take any medication for PSP itself no levodopa etc so it wasn’t down to any side effects, unfortunately, so it does indeed appear as rriddle says a neurological symptom. Ruth x
Bob was initially diagnosed with Parkinson’s in 2012 ... maybe had symptoms with gait before that. Small handwriting and speech volume came shortly after. Falls, freezing and eye problems started about three years ago.
The first clue was that Bob had a tendency to close his right eye. It was found that he had cataracts; but after cataract surgery in both eyes, he still complained about brightness and his vision was no better. We also noticed more episodes of his trying to clear his throat, the delay in speaking and finding the words, drooling, forgetfulness, and the frequency of his falls. Hours of “spaciness” were becoming more frequent.
Now, if I’m not being too intrusive, why do you ask? Are you or a loved one suspicious of a PSP diagnosis? After reviewing the site (link below) and asking the doctor, she ordered an MRI which showed the PSP.
Very typical unfortunately. We went through the exact same thing. No med did it. Just the beginning of this awful disease. Keep him exercising and moving those arms as long as he can.
Sorry I haven't posted for a while. There is always so much to do. I still regularly have a speed read of other posts before turning out my light at night though. This topic has struck a chord. Freezing is a major problem with my Robert. I find a bit of lateral thinking is helpful. He'll call for help because he can't let go of his bedside grab rail. If I tell him to let go of his left hand he just can't do it. But if I tell him to put his left hand behind his knee, he will succeed. I then tell him to bend a little till he feels the mattress. Then he is able to sit on the bed. Likewise when he stands after a meal he can't initiate movement. He is "stuck to the floor". However if I take his arms as if to dance and say "let's dance our way to your arm chair" he is fine and moves easily. So might I suggest trying similar distracting or lateral ways to approach the problem. Good luck with it.
I do tend to say “just drop it” or “give it to me, I’ll do it” ... so that is sure sound advice to distract him with other maneuvers! He has actually gotten better about letting me take the bedsheet out of his hands as he tries to throw it across the bed, or drop the newspaper in the recycling bin. But I I’ll definitely try to think of a distraction/lateral tactic if he becomes insistent that he can do it. Thanks for putting me back on a positive track, nayook!
You have had some brilliant useful and practical advice. I was given a book called 'I wish I had known that' and it suggested that asking someone to move (unfreeze) may not work but suggesting 'there is cake for tea in the other room' or 'here have this chocolate' (or something the person likes) will be successful in movement occurring again. Good luck xx
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