Lightbulb moment 01

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Agree wholeheartedly, use it or loose it. Found I was using my left hand to brush my teeth and hair and not using my right hand for anything although I am right handed. Decided to sort myself out so started playing a key board which was easy with the left hand and near imposable with the right as I could not even drum my fingers but after trying every day for about 18 months I started to get back the use of my hand. now about four years later I can use it for most jobs even using a hammer(not very accurately as my left hand will testify !)

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Ever tried the MS gym mohave? It is basically free physio. I haven’t used it much myself but a number of members absolutely swear by it

Thanks, are you referring to a specific MS gym ? I did get some NHS MS physio for my hand it was a one week assessment 4 weeks physio and a final assessment before sign off.

I now have an exercise bike which also has a hand crank and I see a physio privately once a fortnight.

Cheers Mick

Thanks,

I am left handed and ironically my MS chose to take a pop at my left hand side. So I now do most things with my non dominant right hand. Following the informative webinar I am now trying to use my “sub optimal” left hand and arm a lot more in the hope I dont make it any less useful.

Mick

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Hello Mick

I’m not so sure about the equine muscles and fascia argument being used too effectively on the knackered MS system.

Of course exercise is important, and there’s certainly value in exercising stupid body parts that won’t work or won’t work correctly. But with the MS body, there are also neurological reasons why our various body parts don’t work. So your arm made of teak (or mahogany/walnut/MDF) could improve with forcing it to exercise. But the reason it became wooden initially was surely neurological?

So, to my (admittedly utterly unscientific) mind, you’re saying the teak arm began with misfiring nerves and got worse through lack of use. Thus the cause of it becoming granite (why not extend the metaphor?) was caused by both neurological reasons and neglect (ie failure to exercise and cosset the afflicted body part).

The trouble I have with this is that we often have neurological damage that simply will not respond to any physio exercise, manipulation or alternative therapies. For example, foot drop is purely neurological in cause. It doesn’t matter how much I try to pick my foot up or exercise it, it will not change. Fair enough, we could probably all do with a personal physiotherapist (I’d like a nice big handsome musclebound chap if you by some miracle win the lottery - that you don’t do - and want to provide physios for your virtual friends!). Then we could improve some body parts that have become weaker through lack of use, but not all.

When I broke my femur, one of the physiotherapists said I’d never stand again. She was wrong. I can stand, it takes some effort, and every now and then I fall over. I will never walk again, even with aids. But I forced myself to stand and to be able to transfer. I’ve only actually broken one loo seat (this year) by launching myself at it. I should do more physio exercises, but it’s hard to keep yourself motivated. I make a small effort every day making myself stand with a frame.

Having said that, keep us posted about the teak arm. If you can make it work just a bit, then maybe we’ll all get a bit more conscientious about exercise!!

Sue

(By the way, as I’m not a horse would the ‘equine’ thing apply? I assume you are a horse, or maybe a centaur so it would be applicable to you!)

Thanks for these Ssssue,

I agree that the neurological issue (nerve damage etc) is irreparable and will not benefit from increased use / exercise, but I think that my lack of mechanical movement has probably exacerbated the teak / granite nature of my arm & leg. I am also not convinced that I can rejuvenate my neglected muscles and fascia but I hope that by doing some more exercise or getting help to mobilise stroppy limbs I might slow or reduce the tone / stiffness.

Not being a horse is not an issue, I think the bio mechanics are transferable. In my head I am a Jaguar or Leopard although my wife thinks I am more like a goat or a slug. (I sincerely doubt that the bio mechanics of a slug would support my theory)

I will keep you posted regarding any big notional lottery win : I would gladly fund Gin Cheese Choccy & hunky or cute physios for everyone.

PS I am impressed by your positive progress and only 1 broken loo seat. When I sheared off the loo seat on our low slung toilet I thought I might do myself a nasty.

Mick

I do hope you’ve not forgotten our very own Slug, she of the poems? You seem more goat than slug to me. Obviously only a virtual goat!

By the way, the loo seat tally is only one for this year. Each year I allow myself only one. Replacements are not cheap. If there is slight damage through the year (chips, small damage to the hinges, etc), I try to live with it. Mind you, the damage I did to a loo in Heathrow Airport was severe. To my shame I did not own up, my thinking was that BAA can afford it. (Maybe not this year tho!) I frequently have bruises in very unmentionable places due to missing the landing zone!

I’ll keep my (notional) fingers (virtually) crossed for your (probably imaginary) lottery win. In my head I will be drinking the gin, and cheese. Actually right now I’m drinking an actual gin ‘n’ tonic, for lunch I had Gorgonzola and I’m trying (often failing) to give up chocolate.

I will try very hard to forget about the super-fit physio chap and equally attempt to do a few more physio exercises myself!

Sue x

It’s a free online gym run by trevor wicken. You can join via Facebook n then access his exercise vids etc

Many thanks, I will take a squint.

Mick

Hi sue you wrote;

The trouble I have with this is that we often have neurological damage that simply will not respond to any physio exercise, manipulation or alternative therapies

I had the physio see me a few weeks ago about my foot. It is lifting up because my second toe keeps going into spasms and lifts right up and when i walk i kind of drag the foot and constantly bashing into things. He did mention something about foot drop but said i was lucky in a way as i have kept my right side strong which helps me move forward. BUT he did say the problem with MS and neurological damage its very hard to come back from he had one small exercise i could do for the foot but it wasn’t guaranteed. He is putting me forward to ortho i think he said and would imagine they will want to use a foot brace to try and help.

I told him i pushed myself to walk everyday i don’t lift my left foot very well but my right is ok, and i ended up in hospital they think i had simply overdone it and made matters worse lol. So now i just do what i can when i can. the pain i have in my left foot is indescribable.

I have constant burning and tingling and fizzing in both legs but way worse left. first thing its like being on a wooden leg and cramp is terrible so i know i have to move it as best i can.

I have been a member of that gym and it made me worse. its more for RRMS when people are not relapsing they can take time to build up muscle. as i am PPMS that has long gone.

the physio said there wasn’t much he could do for me it takes a specialist neuro physio and i suppose there are not many of them free on NHS. So i keep my right leg as strong as i can although since hospital it too has weakened. My left side has deteriorated. Most days it feels like a wooden leg lol.

the joys of MS.

I have lost weight now deliberately as i think the key is healthy living. loose the weight then the body has less to push around. lol. so well it seems to be working for me. I also take my extra vitimin D advised by the doctor in hospital and it has helped a bit.

I am glad you got to stand you have guts and determination sometime i have then i don’t as i feel what is the point. then i tell my monkey chatter to shut up lol.

Sorry i caught bits but i really struggle with reading block text.

Keep going you will get there. my freind has something wrong with his arm they are not sure what is happening, evern with tests he doesnt have MS, but he is painting now limit movement but it makes his painting more interesting. Over the months it has improved and well we now have a budding artist. He said by painting he was moving his arm even limited but was so engrossed in it he never thought about it.

I have 3 of his paintings now they are quite amazing. maybe a subtle way improves. who knows. xxx

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Hi CC,

You are right about the varied joys of MS. I struggle with blocks of text so can not always get through larger posts. It is so difficult to know when and how much to push through stuff. I get it wrong most times, and I feel such an idiot when I make things worse by overdoing things. The last thing I want is to have a negative impact on my condition or to make things tougher for my wife. I love the idea of how painting is helping your friend and is not “chore” like exercise.

All the best

Mick

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Hello CC

Foot drop is literally a bloody pain. It’s also a cheeky so and so. The foot absolutely refuses to lift (they call it dorsiflexion btw) on demand, but when it feels like it, it spasms and lifts all by itself and flipping hurts when it does it too! I’ve had foot drop for years and have tried out everything to try and help it, plus many, many different aids or orthotics to make it lift.

This is the MS Trust webpage about foot drop: https://mstrust.org.uk/a-z/foot-drop

The big problem with dropped foot is that once it’s set in, it is not reparable. Yes, there are exercise that a neuro-physio can give you, but basically, once you’ve got it, it’s there for good. The exercises a physio can give you are to improve the muscles to enable you to try and get around the fact that you can’t dorsiflex that foot.

Your physiotherapist has probably referred you to an ‘orthotist’. If your experience is anything like mine, the appointment was for 15 minutes. Apparently because the hospital had only one orthotist and loads of patients needing his services! The first appointment was worse than useless. The orthotist decided to give me a useless thing to try to keep my foot in position called a ‘Neurodyn’. This is made of fairly stiff nylon and does up with a complicated set of velcro straps. The orthotist stuck this thing on my foot, then my boot on top and sent me off. He didn’t really show me how to put the thing on myself.

That day my husband and I went into town for lunch - it happened to be my birthday (remember when cafes and restaurants were open?) By the time I got home the Neurodyn had scraped itself a big bleeding blister on my heel. Of course I couldn’t feel it as I walked. That put paid to trying to use the Neurodyn for several weeks while the blister healed. Meanwhile I had the biggest relapse that meant I couldn’t ever walk properly again.

Subsequently I have tried all manner of orthotics. Here are a few I’ve tried:

  • The ‘Foot-up’ : https://www.ossurwebshop.co.uk/foot-up-for-drop-foot.html These work well-ish. Not perfect, but a basic way of lifting your toes. You should be able to get your physio to get you one of these. I have bought them in the past too.
  • A fixed Ankle Foot Orthosis (AFO). This is a device made of plastic or carbon fibre which might look something like this: https://www.shoeinsoles.co.uk/swedish-afo-extra-strong-foot-drop-ankle-and-foot-support.html The idea is to fix your foot in the right place so your toes clear the floor. The orthotist in my local hospital ordered me one made of carbon fibre without really looking at my feet. When it came there was no way it could work. Apparently my heels are too bony and the metal plate went straight up from the back of my foot to the knee.
  • Or there’s a SAFO. This is an AFO made out of silicon which is moulded to your actual foot (they make a plaster cast of your foot and custom make the orthosis. See https://www.dorset-ortho.com/en/patient-services/orthotics/safo-silicone-ankle-foot-orthosis-dorset-orthopaedic/ SAFOs are not available on the NHS and cost quite a lot (about £800 I think). I bought one, they are difficult to get on, but don’t hurt your foot and basically keep your foot in the correct position. Putting a shoe on over a SAFO isn’t easy. I had one pair of shoes that would work with the SAFO. Some people swear by them though. I swore at mine. Where it was useful was in water though. I went to a hydropool and used the SAFO to walk up & down.
  • Then theres the Boxia: https://www.orliman.com/en/producto/boxia-foot-splint-plus/ These are great. I was given one by a member of this forum (thank you Bertie!). They are a big improvement on the Foot-up, but use a similar method of picking up your foot using elastic so your foot isn’t fixed in the one position.
  • Finally, the best solution of all is Functional Electrical Stimulation (FES): https://mstrust.org.uk/a-z/functional-electrical-stimulation-fes This is where the perineal nerve that runs from your knee to the foot is stimulated by an electrical impulse and so makes the foot pick up the toes (a very simplistic explanation). Sometimes FES is available on the NHS, but it depends on your local CCG (Clinical Commissioning Group). Mine does not fund FES. The technology works but it’s not the cheapest solution if it’s not funded by the NHS. There are several different versions.

Essentially, nothing is perfect. Some products are better than others, but you still need to have the basic muscles to enable you to walk (core strength, upper leg musculature etc). I found that I could walk the length of my kitchen and back to the wheelchair parked in the hall a few times a day. As my muscles became weaker, my ability to walk decreased. Then I had a fall in November 2019 and broke my femur. This was fixed with a plate from the hip to the knee (on the leg which had the foot drop). I discovered that after the break I wasn’t ever going to walk again.

I have donated Berties gift of the Boxia, together with my Foot-up orthoses to a woman my husband met in his gym who also has MS.

Hopefully you’ll find something that works for you CC. It is exactly as people have said on this thread, exercising appropriately should help with the various muscular bits of our bodies that have weakened. But where damage is done to the nerves, it’s possible in some cases to find a bit of kit to ‘work around’ but it’s not generally possible to fix damage done to the nerves.

As you’ve said CC, ‘the joys of MS’!!!

Sue

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Hi,

Yet again, Sue has done a great job of described all the different aids I’ve tried too!

FES was free in my area but was not suitable for me. Mind what a palava putting the electric nodes on in exactly the right place.

Did suggest to the medic that it would be worth having the places tattooed on your leg! At least that raised a laugh.

Mick, block text is sometimes difficult to read so that’s why I double space my posts.

Take care

Jen

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Thank you Jen. That’s very kind of you.

I did use the FES for a while, you do get the hang of where to put the electrodes. Nowadays there’s actually leg cuffs for various models of FES that have electrodes placed in exactly the right spot, eg https://www.odstockmedical.com/products/odfs%C2%AE-leg-cuff

Actually I think some people have had their legs tattooed with the locations of the electrodes. Wouldn’t it be annoying (to say the least) if the day you were tattooed you’d got the electrodes in the wrong place?

Technology keeps on improving devices. I bloody wish some clever so and so would get busy on curing MS!!

Sue

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BLIMEY like medieval torture chambers lol. I think i will pass. I am more and more restricted in walking now with my MS i will learn to live with it. i think the foot has been lifting itself up now for over 2 years it was never addressed when it should have been.

i will look into FES. Oh and yes it was the orthotist he mentioned. there are people out there in far more need then I am.

its trying not to fall is the issue. I make sure now i always walk with my rollator. scared i will fall and break a hip. there is no coming back from that i dont think not at 70.

thats for the wonderful information i think the MS society should copy them and have them on INFORMATION pages we can download lol.

I hope you are ok though as good as you can be. Moving has helped me a lot i love my bungalow. its so much easier for me.

my only issue is going out with the dog on the grass to pick her toilet up as its very uneven and this is my danger point. so i have another rollator outside.

big hugs. xxxx CC.

Cheers Jen,

I am lucky in that FES helps me massively although I do moan and whinge a lot ! I will try the double space idea. I do

not usually write that much. It was a bit of a challenge to get my verbose witterings on to this site !

Mick

mick

anyrthmg with bones muscle tendoms etc i think woyuld benefit from movement to reminf them what/how they are meant to work/move.

during one relaspe i was sleeping 20 huors a day but my family spent time eact day moving my limbs in the hope the messages woukd get through. i am right handes and all of that side was affected. i believe that those movements several times a day along with 30 odd yeard of enjoying aerobics contributed to making that side a wee bit srtonger.

use it oe lose it - i think is only true to a certain level them if the message cant get through for whartever reason it wont move no matter how hard you try or how much you want it to!

el x

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