I just wanted to share a little trick we've started using. Hubby's finding it more difficult to walk these days. He often gets 'stuck' or frozen and his feet just won't cooperate or move at all. We find that if we get his legs and feet nicely parallel and facing in the right direction, then count down (3-2-1-go), his legs will start moving when we get to ' go'. We often still count (1-2, 1-2) when he's walking to keep him going, but the count down to start us off has helped.
Not sure if it'll work with everyone but maybe worth a try.
Big hug to everyone on this site, and hope you all have a great day!
Sawa
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Sawa
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Well done Sawa for discovering your "little trick". It's called "cueing" and is often used with Parkinson's sufferers later in their disease when they have "freezing gait".
My wife has had this problem for the last few months and we have called in a physiotherapist (trained in neurological disorders, like Parkinson's) for a short time each week and she wanted us to use this cueing technique. Before this, I was trying many things to help her brain neurons "fire", even singing a few old songs melodies and walking to the beat! I did do some counting but our physio said keep it to one/two and not keep counting upwards.
It all sounds simple but it works reasonably well with my wife until she is excessively tired (which is a lot of the time).
This PSP is devastating, and my wife (diagnosed late 2011, first symptoms about 2008/9) was actually walking (with the drunken sailor gait) reasonably well about 15 months ago, and now she's essentially wheelchair bound and can only walk (mainly shuffles) a few steps with her zimmer frame (and requires constant assistance because of "wobbles" and potential falls).
Perhaps others (carers or sufferers) may wish to comment on their experience with this freezing gait.
Being realsistic, I can see a time when my wife may not even be able to stand, but until that time comes I'll keep her "moving" as much as possible. (I still sing a few tunes while she walks but it's to the count of one and two!!!!)
THE 1 - 2 IDEA WAS GIVEN TO ME BY A GOOD PHYSIO TO DO AT DOORWAYS OR WHENEVER I FREEZE/OR IN A SHOP/ OR WANT TO TURN TOO QUICKLY - ALL FO WHICH CNA CAUSE FALLS AND TO TAKE LARGE RNOT SMALLE RSTEPS
THE IDEA OF A SONG IS ALSO A GOOD ONE - ALEXANDERs RAGTIEM BAND IS 1 I MA USIGN A TTHE MOMENT
hi jill i can just see you doing alexander's ragtime band mate i just say stop and go which seems to work for me most times\\\ it does seem to be a bit of a problem you get a few stares from people\ but who cares its better than falling over isnt it \\ mine have got a little but worse of late but short of walking around with a sandwich board on you saying ive got psp [ then you would get people saying whats psp\] although that would not be a bad thing i suppose would it at least it would be out in the public eye thats if your game enough to wear a board of course oh well just have to grin and bear it i guess peter jones queensland australia wobbly psp sufferer
Just a quick post script to my reply. We now use a swivel disc for transfering from the wheelchair to the car seat and vice-versa. My wife will often have freezing gait just as she tries to take the couple of turning steps required to get into the car. I've often been seen holding her very close (for several minutes) as she stands and freezes. It looked quite intimate from an onlookers point of view! The swivel disc is really helpful.
Another good way to initiate stepping is to stand directly behind or in front of the person and place your hands on their pelvis. You can then (very gently!!) sway them from side to side slightly, getting them to transfer their weight from the left foot to the right. When you've built up a little momentum you can say "step!" as you reach the furthest point of your sway and they will then step the "free" foot.
Doesn't work for everyone but might be worth a try!
Well blow me, if I believed in reincarnation I could come back as a physio because there just the techniques I have been using with my husband, the counting and the swaying, and I have had absolutely no training or guidance!.
Same with me and my hubby. Walking round indooors, I put my hands on his hips and sing the tune to the conga. Hubby hums along too and it keeps him going. To get out of his rise recliner chair, we say, 1 2 3 up and he always manages to stand on the " up". If I don't say it, he pushes himself up and always plonks back down again.
I have been using a similar technique to help my husband move, but instead of counting I gently say right foot and repeat it until his right foot moves. (The right is his favoured side") The technique of hands on the hip and swaying alternating weight from one side to the other keeps him walking. Also holding him by his hips, I can counteract immediately any wobbles that would normally end in a fall.
We also sing "What shall we do with a drunken sailor". This makes him laugh as he was once a sailor and probably drunken at times!
Gerry is beyond me holding his hips and swaying as he would definitely fall. When he tries to lift his foot and the toe doesn't want to go (freezes), I put my foot under his and lift and glide it forward to start the movement. He says it helps a lot. Hope I was able to give you the image I was trying for. How innovative we have all become to cope with this humiliating disease. I hate it so much!
I have done the same ' lift and glide' a few times. Find that if I stand behind him, I use my knee to push his knee forward and bend it, and then use my toes to lift his heel high enough to lift his toes off the floor then gently push his foot forward. It's mostly when he stops just a little too far away from something, like the toilet or the basin in the bathroom. I have noticed that he seems to stop 1 or 2 steps short of where he should be, then he struggles to make the extra few small steps.
With mum when she had a patch of freezing I would say "Left right left right" and after a little giggle to herself she would say it to herself and get moving again. I think the giggles relaxed her.She always walked better when relaxed. I also found she would walk better with just my hands, either with me walking behind and to one side holding both hands or me leading by walking backwards and her following. It was more natural than trying to remember how to use the frames sometimes.
I couldn't use a swivel seat in the car as mum had one for Dad and she didn't like to think of herself as 'that needy'. Also they only work in cars with flat wide seats. Instead I would pop the seat protectors in and use those to help re position her from the driver's side as they had a plastic coating underneath which slid nicely but had the added security of leak proofing in the car! Incidentally I found that leaning the car seat back for her helped a lot otherwise she would lean to one side causing distraction and making gear changes and handbrake usage difficult! I often wished we could have something like a padded neck and head support to attach in the car, rather like in the specialised wheelchairs to help mum stay more upright and enjoy the view a little.
Dianne x
Just one other experience with respect to moving. Perhaps others could comment. With Parkinson's and associated conditions like PSP it seems one rule of thumb is for sufferers NOT to try to do more than one thing at a time.
I find if I ask my wife a question, or make a comment when she is trying to "walk" with her frame, she stops, and starts thinking about what I have said. So now, I wait until she's is seated before I ask questions or raise a topic!
Hi Strelley, I can definitely agree with that. We often find lots to laugh about when we're trying to walk around the house, quite often with me walking backwards in front of him. We've found that if he laughs too much he can't do that and walk at the same time, so he asks me to keep quiet. I haven't asked him questions while we're walking, but can imagine it would divert his attention and his legs would stop moving.
hi strelley hows it going \\ well i would agree with you there if my wife asks me to do to many things at once i get all anxious and not sure where to start [ but i thought all men were like that anyway
i have heard that men can only concentrate on one thing at a time is this true [ i know many women looking in will agree] \\\ in my case it is im afraid to say \\ that one thing is plenty for me to handle especially washing up but i take so long to do it now by the time i finish the dinner things it's nearly time for breakfast [[and of course the breakages [ slight exaggeration[] then theres the vacuuming and the tiles to clean dust the furniture and the ornaments crikey its a full life this psp peter jones queensland australia psp sufferer
Peter, Yes, I've found that any distraction takes Sharyn's mind off the task at hand and can be unproductive and dangerous. I have a routine saying to her "I'm not worrying about that right now, we are trying to .......at the moment". "I'll talk to you about that once we have finished .......".
Jimbo
Hi Peter
Always good to hear from you, and I'm always amazed at the way you face the challenges of PSP. You are an inspiration to us all.
I think I've mentioned before on this forum that since looking after my wife I have had to learn to multitask (and sometimes I am juggling half a dozen things at the same time!).I'm happy to do it, but it's very sad for my wife, who would like to help, but she cannot manage anything much nowadays.
All the best to you until next time, and take care mate!
A gadget John found useful to get the legs to move.... the Kick start walker.
About 3 years ago we loaned (free for two months through the Independent living centre) and then purchased a Kick Start stick for my husband. John used it constantly to get from the bedroom to bathroom for almost a year and now still intermittentedly (about twenty/thirty/forty lift/shuffle steps and through 2 doorways, about 10 steps for me). The inventor designed it for his brother in law who had Parkinson's. John found it useful for the sound it made as the handle was depressed, and with each depression his hand made John mentally felt he had to step ast the same time, so it forced/prompted John to walk. With the item John was able to get from the bed to bathroom/WC unaided. At the time I went back to inventor to thank him and advise him of the benefit it had given to John who had PSP. The inventor had not heard of anyone with PSP trying the item to know whether it was also of benefit to others. To use the item successfully you have to be be able to lift your leg over a 'piece of plastic' (Refer to video on website). So when John gets close to his destination he lets go of the stick (drops it) and shuffles along.
N.B. Parkinson's Association WA at the time were not keen to promote the item as there were concerns with clients using it as a walking stick. Hence the item is (now?) held at the Independent Living Centre from the Parkinson's Association (who initially received the stick 'Free of charge' from the inventor for clients to try).
Yes that works. I also have a technique I use with my PSP wife. I've figured out that it takes her about four steps from the wheelchair to the comode then nine steps from the comode to the sink to wash up. So I tell her "Four steps, let's count them out" and for sink "Nine steps, lets count them out". This works VERY well for us and keeps the progress going once started. I make her count them out with me which seems to activate the walking part of the brain. Thanks for sharing.
Yes, unfortunately concentration on more than one thing/event/task at a time is difficult for PSP patients. It is important to remember this because distractions can cause lack of concentration and falls.
I forgot to add that the characteristic PSP wide gait also seems to make the walking harder, so every now and then I have to remind him to bring his legs slightly closer together ands that seems to south his walking out a little bit.
With my sister who is 81 and now can't walk at all, she is totally dependant for everything I used to face her and take both hands and that helped to get her moving when she froze, good luck my sister is in a care home now and I feel I have lost her already I crymy eyes out every time I leave after visiting her miss her so much.
Hi, we found a similar routine, mum was used to marching in her younger days so when I said we were going to march she stood upright, eyes forward and off we'd go. Another method was that she found a pattern on the carpet that she could use as " stepping stones " and another was to put a string around the legs of her walker then as she looked down she would move her feet using the string as a guideline, this was good as she tended to keep the walker too far in front of her so that she didn't fall backwards.
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And now for our next trick
Severe leaning - new way to get patient into bed.
Things are getting worse.
My husband is coming out of hospital today and I am scared I will not cope.
