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pete
6th March 2012, 09:17
Hi all ,
just wondering , my legs are having second thoughts about where i want them to go ,is this another mile marker in mnd , I can still walk but it seems vague , its difficult to say what but it does feel odd,and sometimes when i turn the balance isnt quite right. would appreciate your views , I have a appt with the nurse next week and will ask her ,but would value your views please

regards

pete:confused:

Derek_
6th March 2012, 09:44
'Ello pete,

It may well be another mile marker unfortunatly, my legs are almost knackered now. I can only stand up with the help of my frame. We are all different pete mate. My hands and fingers have a mind of their own when i am typing. Sometimes i hit 2 keys together, another time they may hit a key and delete all what i have done.

Derek.

Bels
6th March 2012, 10:14
Hi Pete,

Sounds similar to what Mum is going through. Sometimes when she is turning it is almost like her feet don't quite keep up with her. She found that a zimmer frame gave her the stability for when this happened. Mum's legs are still working but only just and for short distances. Sometimes when she is trying to get over a small step etc you can see her willing her foot to move but not doing as it is told. Everyone is different though.

Bels

Lassie
6th March 2012, 11:21
Hi Pete,
My husband has similar problems with walking his legs go one way and he goes another !. A very frustrating problem. Physio visit arranged hopefully may have some suggestion to help.

Lassie

Jeannie
6th March 2012, 11:29
Hi Pete,

I'm hearing ya! If it wasn't for my leg braces I would've had to give up walking about 8yrs ago.

miranda
6th March 2012, 12:32
My legs don't do what I want them to do and I have had several falls because my balance is all over the place . The only time I felt safe was when I was in the supermarket pushing a trolley. Eventually I gave in and started using a rollator (push along thingy with wheels) when I am out and it has renewed my confidence.

Robert
6th March 2012, 15:09
Hey Jeannie,what are your leg braces like,when I first went on crutches Pat said to me "Run Forest" she likes a larf,anyway I am past crutches but didn't realise there was something in between finishing with crutches and sitting on my arse for 14 hrs a day.Are yours leg irons like Forest's? It's the strength in my knees that let's me down or should I say let's me collapse.So it's out the armchair by ceiling hoist ( or love swing as I tell the ladies) and into my wheelchair, same in bedroom but more adventurous,Pat's just said "In your dreams" Anyway seriously do they support you enough,how far do you walk. Warmest Regards Bob x

Jeannie
6th March 2012, 15:34
Hi Bob,

My braces are more for ankle weakness, but you can get braces to support your knees. My braces are custom made and are similar to the below picture but mine has velcro across the ankle as well. There are many knee brace/support so you would have to speak to your physio to ensure you get the right ones. I am impressed by the knee braces in this video, but cannot see you getting them on the NHS lol Love yours and Pats humour xx http://www.dailymotion.com/video/xiqi4q_mayo-knee-brace-keeps-man-walking_news


http://www.footperformance.com/wp-content/uploads/2010/11/AFO-with-ankle-hinge1.jpg

Robert
6th March 2012, 16:52
Thanks for that jeannie,they look really good I will become" bionic bob". Hey Pete,how are you,when you get on the floor do you need something to pull yourself up with.And if you were to bend your knees do you suddenly collapsed without warning.Don't try this without cushions on the floor and face the bed.Jeannies link above is interesting.

Warmest Regards Bob

Jeannie
6th March 2012, 17:11
You're most welcome, Bob. Further more to the link showing the 'Sensor walk' by Otto Bock, I found the following video (patient testimony) on youtube and am blown away by this fantastic piece of equipment - shame it's only available in the US.

I'd like to try them http://www.youtube.com/watch?v=eo5iLmxq9qA

pete
6th March 2012, 19:17
HI there Derek

How the devil are you ,I was hopeing you where going to say no its nothing like that ,but now you have, well its just confirmed my thoughts , I guess i need to see the OT, to date havn't been seen by one ,And as for hands yes i find now after useing my hands allday for work i cant even use spanners anymore and trying to get the screwdriver in the head of the screw well ?, and your not on your own with the finger thing on keyboards , i was re doing my page and managed to delete almost everything ,still dont know why ( the wife says its a senior moment ,trouble is it lasts a lot longer these days ) Hope your keeping well and look forward to the next chat

Take care

pete

pete
6th March 2012, 19:23
Hi Bels

Yes we do seem to have a lot in common , and you raise a good point , one i hadn't thought of till now ,our house is elevated as we live near to a lake , both the front door and rear have two steps ,to get into the house ,Maybe its time to consider a move to a more level entrance and a bungalow is on the cards i guess stairs are a big problem too ?

best wishes

Pete

pete
6th March 2012, 19:28
Hi Lassie

Yes it is a frustrating condition , until it affects you directly , you really dont realise what you took for granted ,and now you end up thinking how to walk and i think that makes it worse , Good luck with the Physio and look forward to any tips .

regards

pete

pete
6th March 2012, 19:50
Hi Jeannie,

Its all new for me , this walking issue , but you know what, better it be me than another young person to have to go through this,

regards pete

pete
6th March 2012, 19:59
Miranda

Sorry to hear about the tumbles, i guess it goes with this condition,one of the many little suprises it has in store for us, And yes i do know ,the supermarket trolley is my saviour I can walk to the store but walking around the aisles i hang onto the trolley and it works wonders, just adding that stability and giving that sense of being safe i guess, I was going to ask what a rollator was ,but your Description saved me from showing my ignorance

regards
pete

pete
6th March 2012, 20:08
Hi Big Bob

Yes pretty much got it ,yes i have always been able to stand reasonably well, but i noticed a few weeks back bent down to pick up keys, and found it very hard without holding onto something to get back upright , and ever since getting out of a chair i need to push with my hands on my knees, did yesterday in the shower bent down to pick up the soap for the umpteenth time and ended up face down so i guess yes to all your questions , Hope you and the wife are ok ,is it still sunny down there ?

best wishes

pete

JONESY
6th March 2012, 22:30
Hi Pete,
My right leg was the first to go and now the left is nearly as bad. From tripping and falling flat on my face I then started falling backwards and easily lose balance. Not a problem as long as I could get up but have struggled with that since Christmas. Last week I tried bending to pick something up and knees gave way - had to call careline to pick me up. Right foot can't move sideways but fine walking straight - I o have a drop foot splint from orthotist - referred by physio. Also now have loan of Camel inflatable chair to lift me up - carers didn't know how to use it though. Still walking in house using rolator but use lightweight wheelchair outside with husband pushing. Need to start using powered wheelchair inside but too much going on in house at moment. Other problem is that upper arms becoming weaker so that doesn't help.

Best wishes

Chris

paul-uk
7th March 2012, 00:52
i can still walk but rely on my quadstick to aid balance. It takes me 3 or 4 goes to get up off the sofa and my knees ache if I walk too far. Getting out of the house is a real challenge due to a deep step at both front and back doors. Need to sort that with Spring just around the corner.

Bels
7th March 2012, 08:54
Hi Pete,

My Mum had to stop using stairs a little while ago. They actually had a lift fitted from the lounge up to the spare bedroom upstairs which is fantastic. Mum and Dad live in a reasonably remote area but find ways to work round things with Dad using the wheel chair. I think changes will need to be made to the front door for them soon to make life easier. Dad talked about moving with Mum but she really couldn't face it and wanted to stay where she was. Fortunatley we have a really good MND Coordinator who is great at trying to put things in place as/before they are needed.

Steps is definitely one thing to look out for as it tired Mum out when she was starting to struggle which made it more dangerous. The lift has been brilliant.

Hope you find a good way forward.

Bels

Jeannie
7th March 2012, 11:21
Seeing that the 'Sensor Walk' by Otto Bock is only available to the US, I did a bit of digging and found they supply similar brace in the UK called E-Mag Active and it is available on the NHS.

Here's a short video > http://www.youtube.com/watch?v=VnvnuZBHEI0

Electronically controlled leg brace helps restore mobility
Otto Bock Healthcare : 11 January, 2011
A 63 year old female suffering from muscular paralysis as a result of childhood polio becomes the first UK patient to wear a revolutionary, electronically controlled leg brace - the E-MAG Active from Otto Bock Healthcare - that helps restore or maintain mobility.
Jane Rutterford, a retired mother of two from Essex, is now experiencing a regular walking pattern for the first time due to the device, which has recently become available on the NHS.

Read more: http://www.prohealthservicezone.com/News/Assisted_independent_living/Prosthetic_limbs/Electronically_controlled_leg_brace_helps_restore_ mobility_7602.asp#ixzz1oQemeGy5

Robert
7th March 2012, 12:09
Morning All,thanks for your input Jeannie I will look into it,be lovely to be able to walk again.

Hey PAUL, talk to your OT they do steps a bit like lego,you can add or remove sections we used ours to get in the bath.If no joy with OT look
at COOPERS of STORFORD on line they do a step that halves the height of steps, they was buy one get one free,have a look.

Regards Bob

pete
7th March 2012, 15:47
Hi Bels

Much like your mum and dad, I dont relish the idea of moving much ,but the house we have isnt big enough for major alterations, and It suits us both at this time but as the MND advances i guess we need to be ready to tackle the problems before i get to that stage and cant do much about the steps leading to the house ,so a bungalow it is , best wishes to your mum and dad and of course to you .

pete

pete
7th March 2012, 15:56
Hi Pete,
My right leg was the first to go and now the left is nearly as bad. From tripping and falling flat on my face I then started falling backwards and easily lose balance. Not a problem as long as I could get up but have struggled with that since Christmas. Last week I tried bending to pick something up and knees gave way - had to call careline to pick me up. Right foot can't move sideways but fine walking straight - I o have a drop foot splint from orthotist - referred by physio. Also now have loan of Camel inflatable chair to lift me up - carers didn't know how to use it though. Still walking in house using rolator but use lightweight wheelchair outside with husband pushing. Need to start using powered wheelchair inside but too much going on in house at moment. Other problem is that upper arms becoming weaker so that doesn't help.

Best wishes

Chris

Hi Chris,

The falling forward i have known but the back one sounds really awful ,For me all this has been a real eye opener , having had most problems to date with the speech and swallowing and guessed it would be only a matter of time before i get to become a fully fledged member of the club, just amazes me how the people on here fight it daily and stay so helpfull to others who have yet to face it .

pete

pete
7th March 2012, 16:01
i can still walk but rely on my quadstick to aid balance. It takes me 3 or 4 goes to get up off the sofa and my knees ache if I walk too far. Getting out of the house is a real challenge due to a deep step at both front and back doors. Need to sort that with Spring just around the corner.
Hi Paul

Know the feeling well the getting up of seats has become an issue for me over the last few weeks , and your house sounds much like ours the step issue i cant alter that so we need to start looking for a bungalow, probably sooner, rather than later now. Take care paul

regards

pete

elle
7th March 2012, 23:49
Hi pete,
sorry to hear about your legs, and sorry iv'e not been in touch for a while, been going through one of them isolating periods again, my mnd first started in my legs, then my balance leading to a lot of bad falls,it sounds a good idea looking to re-home to a bungalow better now than later, i wish i had done a lot of things earlier than later thats the trouble with mnd it's so unpredictable the rate it can move for some, in my case too bloody fast, i hope your keeping well under the circumstances take good care x elle x :):):)

pete
8th March 2012, 08:43
Hi pete,
sorry to hear about your legs, and sorry iv'e not been in touch for a while, been going through one of them isolating periods again, my mnd first started in my legs, then my balance leading to a lot of bad falls,it sounds a good idea looking to re-home to a bungalow better now than later, i wish i had done a lot of things earlier than later thats the trouble with mnd it's so unpredictable the rate it can move for some, in my case too bloody fast, i hope your keeping well under the circumstances take good care x elle x :):):)

Hi There Elle,

Good to hear from you ,and you have no need to say sorry ,Yes its time to move i think ,just hope we manage to find somewhere local ,There are bugalows up the road from us but its terrible to say this but you have to wait for the owners to die before they come up for sale , Its Not posh around here but we have feilds opposite and a lake , Not forgetting the pony and three remaining sheep that live opposite our house , so i would miss them if we had to move too far ,Hope your feeling a lot better and wish you well, take care and will pm you later .

pete xx

mjp
9th March 2012, 13:27
Ialso wear this brace i am struggling to find fashionable shoes to wear with it? i have lost use of left hand so cant do laces what footwear do you wear any tips ?

MikeFD
9th March 2012, 13:43
Hi mjp -

Take a look here (http://forum.mndassociation.org/showthread.php?631-Trouble-tying-shoelaces&p=3795&viewfull=1#post3795) - there may be some ideas to help.

Best wishes,

Mike.

Jeannie
9th March 2012, 14:10
Hi mjp,

I only wear lace up ankle boots which give me extra support. You can get custom made shoes, boots and trainers free on the NHS - you need to speak to whoever supplied your braces.

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