Hi everyone, my husband was diagnosed in 2019 with PSP. He probably had it a few years before that but misdiagnosed with MCI. I read all your comments on here & find them most helpful, so today I would like to ask if any of you have experienced with what I can only describe as "Freezing" . It' happening more & more with my husband, for instance when he comes out from the bathroom he gets halfway through the door & just cant more. Hes just frozen on the spot. His legs are rigid & theres no way he can go back or forward. I just have to try & lift his feet a little & eventually he gets going. Is this common with PSP? I have tried to find a mention of this in all my literature on PSP but cant find anything. Your thoughts would be appreciated.
Freezing : Hi everyone, my husband was... - PSP Association
Yes. Quite a few of us experienced this. There was discussion about managing it. I found it better to reduce his anxiety by talking gently and talking him through it. Often we walked with me chanting left right etc. Or I would sing for him to move to the tune. I expect this wouldn't suit everyone - we laughed to jolly ourselves along and keep him moving. Hope this helps. Its one thing after another isn't it ? Love Jean xx
Hubby didn't freeze much. But we went to a 'Dance for Parkinsons' session and he was moving more freely. What is more, he enjoyed it and wanted to go again.This is a man who couldn't sing a note in tune, could never dance to the rhythm, but enjoyed jazz - and this is the music that was played!
So make light of the situation and 'dance' him through the door.
Hope it helps.
Hi Jen, well oddly enough my husband has been going to an exercise group all seated for people with Parkinson. Sadly due to the last Lockdown classes stopped but he does the routine indoors & has a little pedal machine which he pedals away on for over an hour or so each!!! We do laugh & ask him where he is off to for the day on his "bike" 😅 Its all trial & error isnt it? Thank you 😘
My husband has CBD and experienced the freezing you describe. Carbidopa/levodopa helped for a while, but stopped working. Singing or counting also helped.
Yes freezing is part of PSP generally there are four clinical syndromes , Richardsons syndrome,atypical Parkinsonism, conticobasai syndrome, and pure akinesia and gate freezing, Richardson's syndrome is the classic PSP. Pure Akinesis with gate freezing is what my husband has with a bit of Richardsons thrown for measure , he is now chair bound in side as well as outside but when he was able to use a walker counting one-two;one;two helped . Blessings ,getting him to count with you , if he freezes dont panic, tell him to stop take a deep breath then step out with the count. you can google the four syndromes,it will give you a lot of information ,Brain Support Network has a lot of information on it. Blessings.
Yes it’s horrible I have a special walker for my husband and it’s made for Parkinson and other nurological diseases it helps a lot there is a light that goes across the floor to prompt them to move it also has a sound that clicks The weight is in the bottom of the walker so doesn’t easily run away from them and the brakes are in reverse so when they stand up they have to lift the brakes to go
Good luck with everything
Wow! I will have to look into finding a walker like that! It sounds great! Thanks for sharing!
My pleasure sorry forgot to say it’s a called a U Step Walker if you would like to research it
Hi Autumnstone!I'm sorry PSP/CBD/ etc. has entered your family.
Freezing in motion or not being able to release a grasp has been described as one of many symptoms in the advanced stage of the disease.
The solution may be different for each patient and each situation. As you say, you have to apply the "trial and error" method.
As doglington, honjen43 and sebuty14 mention, in addition to staying calm, singing, counting, dancing or chanting left to right can be effective. It can also work is to just stand there and hold / hug the patient or, if you can, have them sit back down and the episode can pass in a few moments.
Autumnstone, I am not a phisicyan.
During the 8.5 years in which we were living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP / CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers
Wishing the best for you and your family and if the notes-document with our experiences and our information are of someone's interest, do not hesitate to let me know to send it by the private mail of this chat.
Hug and luck.
Thank you Lewis, I'm most grateful for your input & everyone else who has contributed. As Caregivers we are the ones who are experiencing this journey with our loved ones so we have first hand knowledge. It's a lonely life sometimes, but I know I can turn to this site for help & guidance. ♥️
Yes my wife had this happen but some months later she was unable to walk at all. She had a Zimmer walking frame but kept falling backwards and to the right which he frame could not prevent. She is now in a wheel chair and transfers from and to it are now only possible with an Atlas Advance standing and turning device. Keep smiling we are all in this together.
Hi, I agree with the others. Counting, chanting anything like that. Steve use to go to Parkinson exercises as well and it seemed a different method of getting over the freezing worked for all of them. So it is just trial and error, as long as you laugh and make fun of it, instead of getting upset and worried. (Easier said than done, I know!)
Sending big hug and much love
Lots of love
I have PSP-RS but also Gait Freeze. I notice that it tends to occur when I try to do two or more actions at the same time. For example, walking through a doorway you have to turn quite often. It is in both walking AND turning that I Gait Freeze. Another example is that of standing and walking. What helps is for me to pause between actions but because my thinking is slowed, I don't always remember to do that.
However since the spring of 2020, I have also been increasing in episodes of my grip not opening. Sometimes when I do pause my feet, I hold on to the door jamb and have a difficult time letting go. I have made the neighbors smile when I have stood in my doorway shouting at my hand to "Let Go"! I haven't figured out if there is a trigger for my grip. Along with my grip though, I have blepharospasm. It's only noticeable to me most of the time because I wear dark glasses, even in the house, due to light sensitivity. I think all this "Freezing" is related and is spreading. It started with the blepharospasm in late 2018, Gait Freezing before my diagnosis in 2019 and finally the grip last year. As it appears to be something different on an annual basis, I'm wondering what will Freeze this year!!!
When my dad froze we would dance together just to get him moving again. We would gently rock from side to side and it always seemed to do the trick xx
My son was on a Parkinsons awareness day at work and one tip they were told was for another person to put their foot between the person's frozen legs and that might trigger the person to move again. Can't vouch for it, but it seems along the same line as those saying they danced together to move. Nothing to lose by trying this trick! Good luck!
My husband has been diagnosed with CBD. He, too, freezes and just cannot continue. The doc tells us it is the synapses in the brain just not getting to his legs. It is temporary but scary when it happens. Like others, I have found that gently talking to him, reminding him to breathe and to relax helps a great deal. He will sweat profusely as he tries to get his legs to move so I know he is exerting great effort to walk. If you are outside, point out something in nature or of architectural interest. I find that taking his mind off of the situation improves the situation. Above all, do not get irritated with him or let him see your frustration. Hope this helps.
PLEASE do try this, it’s simple and helps us every time. You have to be with him for this. Put you foot in front of his foot and he should be able to step over it. The other, it works sometimes for my husband.... ask him not to keep trying to go forward, just fold the leg back from the knee instead .... and then put the foot forward where it’s supposed to go. Let me know if it does ease your problems. Generally narrow spaces create freezing, doorways and corridors too. Hope it helps
Yes, I often saw freezing. In gait but also other things, like eating. He would pause with the spoon in the air, halfway to his mouth. Like everyone said, be calm and just speak or sing. I would massage his hand and he would let go of the spoon. Then he would come back to me and keep going. I called it being lost. I would say, oh you got lost there for a minute. But now you're back. I'm so sorry you are on this journey. Its so hard. But come here often for wisdom. You aren't alone.
Ah, I remember it well. This sounds silly, but actually works. I would sing a marching type song while counting. Toward the end, just to be silly I would sing " Shall we dance, 1, 2, 3" when I moved him or stood him up. It would make us giggle, but it always worked!!! Plus I'd get a hug and a smile.Hugs, Alice
Hi Alice, isnt it strange? Well I have been taking everyones comments on board. We have tried counting, & like you mentioned, 1 2 3 shall we dance!!!also if I put my foot infront of his. It's a bit hit & miss but we are getting there♥️
Hi. You should read Tim Brown's PSP chronicles. In the first chronicle he describes it as his legs feeling like tree stumps (heavy and wouldn’t move) making it difficult to get around. That so described what happened to my husband. We were advised that when it happened to get the other foot next to the 'frozen one' so that the body centralises and then try moving off again. It did often help but be near him when he does this in case he loses his balance. Good luck. Love AlIBee
My wife, who was diagnosed with PSP 4 years ago after almost 2 years with a Parkinson's diagnosis, has gate freeze all the time. It was one of her first symptoms, surfacing about 6 years ago. We would be out for a walk and she would fall down like someone pushed her. I would ask her what happened and she said it felt like she had stepped in Gorilla Glue; that her feet suddenly stuck to the ground, but her momentum continued. This only happened a few times a week in the early days of this damned disease. Six years later, she hardly walks at all. When she does, it is just transferring from electric chair to Lift chair, toilet or bed. And her freezing occurs continuously. The 3 to 5 steps to turn and sit in one chair from the other can take 3 to 5 minutes. We employ all the tips already suggested: Singing, dancing, marching cadence, etc. Also, gently rubbing the frozen leg behind the knee sometimes works. And as previously mentioned, turns and pivots are guaranteed triggers for freezing and coming through a doorway always brings on the freeze.
Lastly, someone mentioned a frame with a light on it. My wife got a "U-Step" walker that was very helpful for several years. It is a walker designed for people with Parkinson's and Parkinonism's. It is U Shaped and surrounds the patient . It is heavier than a standard frame, which is helpful because many people with PSP, CBD, PD and the like tend to fall backwards, and when they do, the light aluminum frames goes flying behind them. The U Step walkers also have hand breaks that you engage when you want to walk. Not when you want to stop. Having the walker in a default stop is much more useful to people like our spouses. Lastly, the U step has a red laser that creates a visible line on the ground, right in front of the U Step user's feet. This line tricks the brain into unfreezing because the brain and eyes have a visual line to cross.
Welcome to the group. The people here are wonderful. Hang in there and don't be afraid to get on here, ask questions, whine, scream, etc. We all get it.
Frozen gait happened to my mom early on with her PSP diagnosis. Couldn't figure out why she could not simply step over a threshold. I asked her neurologist and he said that there is a disconnect in the communication between the brain and her legs. So when she comes up on a transition strip between rooms her brain does not know what to do with the new information. Hope this helps with understanding the phenomenon of the frozen gait. You have received lots of helpful ideas to help maneuver through this, all of which I have used with my mom. Sadly, my mom is in a wheelchair now. Looking back, we used to chuckle about how her foot wiggled like it wanted to move but couldn't.
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