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ATLAST and need advice please

firstly hello and how is everyone? saw the neuro dr the first week of april she said shes refferin me to the queen elizabeth hospital in birmingham to see about getting dmd’s, FINALLY got the appointment this morning for sept 16th, time to read up on dmd’s and which one will be the best one for me.

2nd is i really need advice and ideas with this one, in the last month ive had 3 falls as my balance has gone on holiday and wont come back, each time ive ended up really hurting myself and breaking things ive landed on, is there anything i can do to try to get my balance back or anything that will help? its getting worse, my legs are getting weaker and i cant walk as far as before, ive asked on another ms site but all im getting is, i know how you feel, im like that and i feel sorry for you…i dont want sympathy, all i really need is any ideas to help, i want to help myself, but i cant think of anything and im getting stuck, so any ideas id be greatfull for please if you can help? thanks alot, vicki

Hi Vicki

I’m sorry but I don’t know what you’ve tried or when you’re falling. My balance has deserted me for at least a year. I fall when I get up off a chair or turn corners. It’s almost as if there’s no communication between my feet and my brain and I can’t figure out where my feet are placed. Can’t think of a better explanation, sorry.

I have to stop, get my bearings, check my feet are working as I want them to by lifting a foot slightly or wiggling my toes, then when confident continuing on my journey. The same happens when I’m walking and my concentration moves away from my feet. I go nowhere without a stick and when things are worse than usual I use crutches. I know many people say physio is helpful, and I’m seeing an orthotist who said he can make me some insoles that will support the arch in my feet which in turn should help my balance.

Hope this helps a little bit. We’re all so different.

Min x

Neurophysio is really useful as it can not only strengthen muscles but it can also retrain the brain to use non damaged pathways and help to reprogramme the brain to use new ways through the brain. Worth speaking to the gp for a referral- I know that the waitin list on the nhs can be quite long though. I paid privately for some last year and it was £30 a session which wasn’t too bad as she came to the house and was really good

[quote=“Min”]

Hi Vicki

I’m sorry but I don’t know what you’ve tried or when you’re falling. My balance has deserted me for at least a year. I fall when I get up off a chair or turn corners. It’s almost as if there’s no communication between my feet and my brain and I can’t figure out where my feet are placed. Can’t think of a better explanation, sorry.

I have to stop, get my bearings, check my feet are working as I want them to by lifting a foot slightly or wiggling my toes, then when confident continuing on my journey. The same happens when I’m walking and my concentration moves away from my feet. I go nowhere without a stick and when things are worse than usual I use crutches. I know many people say physio is helpful, and I’m seeing an orthotist who said he can make me some insoles that will support the arch in my feet which in turn should help my balance.

Hope this helps a little bit. We’re all so different.

Min x

[/quote] I’m falling at any time, when I stand up, when I’m walking, it feels like someones made my legs weak n kicked my knees n that’s it n I end up on the floor after I end up landing on anythin that’s in my way or near me, last time I ended up on the cat scratch post nn broke it, before that it was at mum n dads coz I was I’ll, before that all I did was stand up, I hit the table, rolled off it n hit the bottom of the fireplace

I’ve tried walkin along walls, furniture walkin, closin my eyes to get my balance back, I’ve even tried flippin meditation, excersise, walkin as much aspossible, I don’t know wat else to try, I need to try to do this myself so wen I see someone bout this I can say I’ve tried everythin instead of I haven’t done anythin to help myself

I had accupuncture yesterday so it’s too early to say yet - spasticity was in mega overload straight after tho! I looked so wobbly that the doctor’s receptionist offered to help me leave the surgery (and I thought they had to be mean just to get that job) lol. The GP I know that does it managed to do away with sinus infections/migraines 12/13 years ago so I thought worth a go as it really has a big impact on me.

What walking aids do you use? I’m thinking that like Min, I could do with crutches for my bad days as the stick is now in full-time use and sometimes even with that I struggle

Go careful

Sonia x

Hi nindancer I use a crutch permanently but on excellent days (4 days out of 10 months) I don’t need it, bad days I need 2 crutches to walk with, went to town with mum today needed to stop n sit down about 12 times, got home n my legs were killin me, so I take 2 tramadol for the pain on top of naproxen n gabapentin

Hi Vicki

My balance is rubbish as well, but one exercise that helped me hold on to some of it is simple.

Get a couple of bits of foam rubber carpet underlay, about 18" to 2’ square. Put one on top of the other.
Stand on them with your feet almost as wide apart as the foam will allow. Sounds easy - maybe it is.
Next time, do it with your feet a bit closer together. Keep bringing the feet closer together until you have problems staying upright, and dont bring them in much closer.
Now go back to feet wide apart and close your eyes (oops), and keep repeating until you can actually stand with your feet together for several seconds before the balance goes.

The idea is that you learn when the balance is about to fail, and you make the tiny little corrections to keep it.

You might want to do this in a corner, or with two chairs positioned so that you can grab them quickly.

The weak legs do not help, of course, so here is the next one. Stand in the kitchen about a foot from the worktop.
Rest your fingertips on the worktop, and bend your knees so that you go down about 2-3 inches, and come back up. Do it about five times and take a break.

A couple of weeks of these two and you will feel a touch more confident, and less inclined to fall.

Geoff

Aaaahh doctorgeoff that’s brilliant thanks a lot, I’ll get sum underlay on Monday and start both excersises, thanks for the suggestions coz 3 falls in a month is takin the mickey, I’m gona end up bankrupt by the time im finished replacin stuff lol I’ve even got mum n dad laffin at me now n crackin jokes which I love coz it stops me cryin n gettin mad with myself for it

Hiya

I went to Tai Chi at my local sports centre on presciption from my GP. I only went for about 8 weeks as I had a relapse before I could get a proper feel for it. I did however, learn a few things that I still do when my balance is bad.

I walk up and down my hall in a straigh line (I put tape on the carpet so I can follow it). You need to walk with your head straight and just do 1 step at a time. At the end turn slowly (holding one to something if you need to). Once you can manage that without wobbling or needing to be close to the wall for support, you add hand movements. Imagine you have a ball in you hands and turn the ball top to bottom. Do this standing still with eyes open, then with eyes closed till you are steady, then do it with eyes open while walking along the straight line.

I’m not sure if I explained it very well there but it really does seem to help me.

Sue

x

Hi sue, that does make sense thankyou, I’ll try that aswell, silly question, do you walk up the line feet next to each other or one foot in front of the other? Coz every time I try to walk one foot in front of the other I end up loosin balance with that aswell n fall into the wall, the neuro dr wanted to see my balance by walkin one foot in front of the other n I fell into the wall n fell into her desk, I ended up with her puttin her arms either side of me for the rest of the steps tilli sat down again

Hiya

The way the man running the class told me to do it was to try to do 1 foot in front of the other but he said to work up to it. So I started off just walking as I normally would while concentrating on my posture and keeping my head up. Once I was comfortable with that I started keeping both feet on the line, so 1 foot in front of the other. Again it took a while to be able to get the hang of it, so I would make sure I was close to the wall so I could put my hand out to steady myself if needed. As I said I went to the classes for 8 weeks and it took about 6 weeks (1 hour classes with short breaks when I needed) to get to the point where I could do the hand movements as well, so don’t worry if it takes a while to get improvements.

The main thing is to take your time, concentrate on your breathing and stop when you need to. It may be worth looking to see if anywhere local to you does any classes, just to get you started.

Hope that explained things a bit clearer. Anything else you want to know, just ask.

Good luck

Sue

Hi well, my suggestion may not go down too well, but it`s what happened when I was falling all over the place and hurting myself…yeh, damaging stuff too!

After using a stick, then a walker, then a rollator, I had to go for a wheelchair…before I did myself some serious damage.

What about, when you go out, taking a manual wheelchair along? I have seen folk pushing them and when they tire or whatever, they sit for a while and either self propel or let someone else push them?

I realised that the high doses of baclofen I was taking, was making my legs so weak that I fell all the time.

I was so chuffin` knackered that I had to use a wheelchair.

Sorry, but I dunno what else to suggest.

My wheelie is my best friend…without it, i would be bed bound and housebound.

Wheels have given me back some independence, and enjoyment of life.

luv Pollx