My wife has just started (last two days) a freezing gait symptom. Twice today she wanted to move but the feet were like they were glued to the floor. She did finally move after a bit. One of the times I was taking her to the potty which I know she needed so the desire to get into the potty area was there but the feet wouldn't cooperate. I'm curious as to how many PSP patients/caregivers have experienced this symptom and to what extent and at what year since diagnosis. Thanks in advance for your responses.
Jimbo aka jimandsharynp
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jimandsharynp
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hi jimbo well ive got that gait problem along with my computer that will not spell free ing but im sure you will understand it\\ i have had psp since 2004 when i first fell backwards\\\\\\ \\around 2010 i started to freese up and my feet just stayed where they were i carried on like this for a while until my physio lady said to me now you just say to yourself or out loud the word stop and then move on taking bigger steps it worked for me most of the time then she put two chairs about one metre apart and i had to walk around the chairs in a figure eight and when said stop i have to stop and then i move off again again by the way thats going around the chairs without touching them i hope you can understand this good luck with your wife if you try this and its worth a try jimbo peter jones quuensland australia
Hi Jim, My Hubby had the same thing, it started around the second year of diagnoses i think? he would fall sometimes because he couldn't move his feet, he had a cane at this time and i use to walk beside him holding his arm as i felt he was a risk. He also froze at Mirrors, pictures and light reflective items eg picture frames making it hard to get him to concentrate. the best bet is to get them to stand for about 20 seconds before moving anyhow, if they freeze in doorways turn them sideways or hold them firmly by the arms so they cant grab onto the door frame as you could be there for a while, also get rid of the distractions, i covered the bathroom mirror with a stick on removable window pattern so he couldn't see himself. it didn't really last for too long but he is in a wheelchair now (year 3) so i'm not 100% sure that it's gone. I think(don't hold me to it) that the doctor said he had 5 years to live. Some-days i don't think he will last that, and others i think he will outlive me! he is in his 50s. hope i have helped, get in touch with the Parkinson's association unless you have a psp association for advice and help, you will need it. good luck
Yes, have been there, done that! The problem has gone along with the use of Franks legs, he always got stuck in the doorways. He was diagnosed 2008, and we only recently seen rapid deterioration. He was 90 last July and amazes me, now in wheelchair, and is following the usual PSP pattern, speech, eyes, neck, swallowing. and yes - the PSP association are angels that listen and help x
my husband has the same problem. He was diagnosed in 2010 but his mobility and gait and this freezing of most of his body has steadily gotten worse over the last 7 months and is at its worse first thing in the morning. He uses his rollator to move around the house and when his legs freeze, I say to him "bring your legs and feet up to the cart" and it usually works - till the next time.
My mum had this- it was what made us think there was parkinsonism there and prompted us to ask to see a neurologist. It didn't happen every time but I sometimes found that if i walked in front of her and held her hands on these occasions, as she felt her upper body moving, her feet would instinctively follow. She only got it with the zimmer frame. With the rollator she would push forward better and just follow. We used to jokingly say left right left right and after a giggle mum would start moving again. I wonder if the tension relieving helped rather than the instruction?
Zimmer frames are the grey straight up frames with 2 wheels at the front and rubber stoppers at the back. A rollator is heavier, wider and has 4 wheels and is much more suitable for PSP
I can see you have had a good number of replies about gait freezing. My husband was diagnosed with psp early in 2011. He has had gait freezing for the last year or so, but recently it has become more frequent. In the house I walk behind him with my hands on his hips and when he freezes, I just say think right or left foot, he giggles and then starts to move again. I find the worst time of the freezing is when we go upstairs, if it's going to happen, it nearly always occurs on the top stairs! Fortunately for me my husband is slightly smaller than me and so far I have managed to stop him falling down.
I'd never considered this til you asked your ?. Had to give it a little thought, but yes, and in fact, that's what triggered the start of my whole neuro work-up leading to the diagnosis 8-12.
Had been having symptoms starting 2010 but blew them off; starte escalating the winter of 2012. Late winter early spring, I had my first and worst backwards fall. I was going up to the stairway to the second level. I made it to the 4th step from the bottom & just stopped for no reason whatsoever. I remember looking down at both feet which were evenly balanced on the step. Everything felt like it was happening in slow motion. I had my right hand on the rail & was overcome by a sensation like I was losing all control & going to fall backwards, and that's exactly what I did, like dead weight. With the handrail there to help break my fall, it was of no help at all. I remember every second of it which was maybe 3 or 4, but felt like 30 mintues. What broke my fall was the foyer wall; hit my head & neck simultaneously, then my upper back, but landed in a sitting-up straight position. Very dazed & confused.
Blessing in disguise tho; that E.R. trip started the diagnostic journey; thought it was a seizure or small stroke and work to the more complicated from there.
The backward falls are few & far between, luckily. However, the other falls I'm experiencing are similiar (I think) to what 'daughterno1' described, and as recently as last week; twice. It's as if there is a large magnet ahead of me, pulling me foward, torso first, either to the right or left, but usually left. I can't keep pace with the pull and fall down on the side I'm feeling this magnetic pull. Luckily no injuries with these. What these falls & the backwards falls have in common tho, is they feel like they're happening in slow motion...have no idea what that's about.
So days I'm feeling imbalance, I stay off my feet as much as possible. Seeing my Neuro again in March. Been staying off my feet much more than staying on them, plus he has a stead-fast rule for me of no physical and or involved metal cognition for more than 3-4 hours a day, then rest & off my feet the rest of the day.
I'm only 54 and in the early stages (or am I?); here I go with the staging thing again. I'm certainly going to ask him, more like insist, on PT and OT, to help build muscle strength, improve my balance, and work on my cognition. Feel like I'm too young for all this inactivity, but to be truthful, I'm pretty exhausted with just the 3-4. He may have his reasons, but I don't want to waste away from inactivity...but then perhaps all of this resting is keeping it from getting worse...we'll see.
BTW, both of my daughters have commented or asked, especially after the 1st of the year, why I just suddenly stop while wandering around the house & using their terms, 'zone out'. Precursor to a fall? Hmm. Will ask my doc about this.
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