Legs not working

[Kelmisty]

Hi All

Can immobility be sporadic?

Mum said on Thursday night she couldn’t get her legs to work, but after help into bed and sleeping they were working again (in her restricted way). Is this normal?

Will they just stop responding suddenly one day and not come back?

Obviously she is very scared and I’m trying to reassure her but didn’t know what/how…

K

[Zerachiel]

Hi, Symptoms of PSP are due to messages from the Brain not getting through and as the disease progresses it becomes harder to control your body.

The Brain has multiple ways to achieve the same goal so sometimes depending on which bit of brain is trying to do something the results can be different; an example of this is someone trying to open their Eyelids, if they are asked to do it they may not be able to open them but if there is a sudden noise they turn their head to it and the eyes open, a different part of the brain triggered the action.

Other examples are when a leg freezes to try and step on something (put your foot in front of hers an tell her to try and tread on it) rather than trying to walk and putting on an accent to speak.

It will get harder for your mum but it is normally progressive not suddenly, and if she can master a few tricks to get a different part of the brain to do the work it can help.

[Kelmisty in reply to Zerachiel]

Thanks, she’s already having to look at her hand to do anything, will try the foot trick.

[Zerachiel in reply to Kelmisty]

If it works try sticking a few paper labels to the floor or carpet from her chair towards the door spaced roughly on how big her steps are, it will give her something to get a walk going.

[AliBee1]

Hi. If you read Time Brown's PSP Chronicles he says at one point that his 'legs are behaving like tree trunks' which my husband found very funny and would use. Love AliBee

[Kelmisty in reply to AliBee1]

Will have a read. 😊

[daddyt]

Yes. Mobility can be sporadic. My legs have been my greatest nemeses, as symptoms are concerned and continue. There are mornings when I wake up and can't move one or the other leg. This immobility may last up to three hours. I use 'detours' (tricks) to get around the issue (s) similar to what Zerachiel has stated previously.

Tim

[Runner333 in reply to daddyt]

Would you mind sharing a few of your tricks so I can get an idea of how to use the detours? Thanks so much. Linda

[daddyt in reply to Runner333]

Caveat: Not every patient will manage some of my trickery. I have a few options I use for those times when I wake to a defiant leg. It involves a bit of brain trickery. Taking one step backwards and then several steps forward have helped. You'll note I'll take several steps forward, not one. You must visualize the movement at the same time. Some times I'll picture myself marching to the command of a drill sergeant, barking his mantra left, left, your left right, left right, left right, left. Be sure to lead off with the uncooperative leg. A little dancing can work, but I usually save that until the stubborn tree stump yields to my mind games. A deep tissue massage gun, or TENS units, has worked a bit of magic from time to time. My 'don't fail me now' option is the elliptical bike (can be any stationary bike). I rest the abstinent leg/foot on one pedal and start pedaling with the compliant leg. The pedaling motion seems to kick start the other leg and off I go. However, I never lull myself into a sense of 'all is well. There will come a time when the messaging centre will go offline. But until such time, I'll continue to look for or create detours around some of the nastiness of the disease dishes out. Try them, or create some detours of your own.

Tim

[Runner333 in reply to daddyt]

Thank you for your ideas. Very creative. We had had some success with moving side to side before forward and counting as we walk.

[Kelmisty in reply to daddyt]

Hi, do you live independently still? Mum has carers three times a day but desperately wants to stay in her flat rather than a care home so any advice on this would be helpful?

Thanks

[daddyt in reply to Kelmisty]

I live independently, but I have PSW support for several hours a day. I can arrange some hours for an evening visit if needed... worth looking into. My youngest son who lives with me is a high-functioning autistic. Not really of any help at all, other than to call emergency services if required. I diligently follow a list (schedule) my wife created early in my diagnosis. I complete the bulk of my 'things to-do' list while I have support... almost like a 9-5 job. I have several aids I can use; canes, walkers, lift chairs, bed rails, shower chair, bedside commode, and other adaptive measures to assist me when necessary. I would suggest you have an OT come in, do an assessment and make any recommendations, if any.

Tim

[Kelmisty in reply to daddyt]

We’ve already had all those things and many OT visits. I guess only time will tell if she will need to go to full time care.

[pmcdonough1]

Check with your doctor about the benefits of Donepizil..it helped my husband's brain function significantly. It improved communication and swallowing.