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DaiTheDragon
22nd October 2014, 11:48
My legs are defiantly getting worse. For the last few months my upper body has stopped twitching and instead my muscles around my knees have been twitching and they are quite painful. Last week I squatted to put a plug into a socket and I couldn't get back up without assistance. I have tried a few times since with help and my legs are just not strong enough to get me upright.
The catch 22 (isn't there always one with MND) is that I can't exercise because I am on my NIV all the time because I can't breath.
So before long I don't think I will be able to walk anymore.
It's just a waiting game, what can this disease throw at you next.
David

Terry
22nd October 2014, 12:07
Don't give up on it yet David;

I know I have quite slow progression, (not slow enough) I had trouble with my knees over there years ago as I could not get up from seats or stand and balance well as my knee would drop an couple of inches without warning.

I am still ok ish, getting up and balancing, I am lucky enough to do quite a lot of exercise and balancing things. Just because we can't do what we could does not mean we can't function at all. Try to do what you can safety.

Best wishes, Terry

Jock
22nd October 2014, 12:18
I echo Terry's view - as your user name says Dai - 'shine on'. :)

MND has got to my right leg first. A cane has given way to a walker which will give way to wheelchair. We'd still get around, but not necessarily as fast and as independently as we wish.

BlueEyesOhio
23rd October 2014, 03:48
I'm with you here, boys. My legs are getting awfully weak now. As you say, my knees are weak if I try to bend down to plug in lights it's difficult to get back up. Also, if I put too much weight on my legs getting up - I get a cramp. I don't exercise at all, I get too tired. Today I went upstairs and had to stop 3/4 of the way up. I DO try to stay positive. :) AND just go one day at a time

Lynne

Jan
23rd October 2014, 10:12
the Consultant gave me Gabapentin for the pain around my knees and shins, it is beginning to kick in and do the trick. Lynne, I know what you mean about exercise, I just can't manage any, I just try to raise my legs and hands 'passively' to keep the joints open; One day at a time is my mantra now too

john
23rd October 2014, 13:46
There is a range of exercises which may be of use and help retain mobility for as long as possible.

http://forum.mndassociation.org/showthread.php?571-Passive-Range-Of-Motion-Exercises&highlight=Range+passive+motion+exercises

These were posted first post on the thread by Jeannie. May be of interest .

John

Trevorhb
24th October 2014, 11:17
I have just been sweeping up pine needles. The effort involved in sweeping is not a problem, it is when I walk that I get problems.

I have a date for my PEG, 24 November. Apart from a blood test to check clotting, no other tests, no xray, but I did have a breathing test at Papworth before seeing the surgeon. I have to be there at 1 pm and stay overnight just to check everything is OK then home.

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