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Stiffness in joints and muscles

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  • nunhead_man
    replied
    Thank you Heather –

    1) to keep my hands moving I do various things when getting up from chairs to wangle my hand and helped by a pre-morning coffee 10 minute hand massage from my dearly beloved wife

    2) to keep my ankles going, I use 1 of these floor-based cycling machines now and again

    3) I work my hips and knees whenever I am standing up holding onto something and I have a few minutes to swing and sway

    Anything to stop me seizing up any worse than I am

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  • Heather R
    replied
    That's hard, Denise. Love and hugs x

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  • denise
    replied
    I'm thinking staying put. I'm worried about his dementia. He was asking about where our house is in UK. I don't know what he's talking about. The house we used to own before we left the UK or where we are in Plymouth. He knows this flat. It's been in our family for 20 years so he knows it. The wrench from Portugal was a big upset for him and giving up driving was another blow. I don't think he could cope with another move. I've had no help with this part of his illness as yet. I'm keen to keep him as stable as possible. πŸ˜•

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  • Heather R
    replied
    nunhead_man My physio gave me some sort of putty and exercises to exercise my fingers and hands, like Ellie says to move them around. I agree with you with the biking, I really miss it, and well done you doing Dr Bike, a great gift to others cyclists x

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  • Mary C
    replied
    Hi Denise ,are the stairs external to your apartment shared ?its a concern as if Stephen's mobility continues to deteriorate then he would be housebound wouldnt he.Are you looking at other housing options or going to stay put?
    Best wishes
    Mary

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  • Ellie
    replied
    denise At least your joints won't seize up. 😍

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  • denise
    replied
    I will chase him round the front room. I'd say with a rolling pin but I haven't got one. πŸ€”

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  • Ellie
    replied
    Whatever about doing 'exercise' for exercise's sake, I cannot stress enough how keeping joints and limbs moving, either actively or passively, will stand to you in reducing pain at a later stage. xx

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  • denise
    replied
    Mary I'm with you I don't know if exercise helps Stephen or not. He has 4 stairs that he easily moves up and down so I feel he gets some movement in his legs. Our physio admits she doesn't know enough about mnd to advise. At least shes truthful. Stephen was assessed at multidisciplinary as having good leg and core strength but even a carrot made of baccy couldn't get him far on Sunday (to be honest it is a steep gradient) and I had to get him home but the worst part was having to climb over him to pull him up the stairs. Don't think the stairs would be a problem if the tred was wider and the stairs less steep.

    Love and hugs
    Denise xxx

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  • Mary C
    replied
    nunhead_man
    Hi ,I have stiffness( mild pain on stretching) in right shoulder.
    my dominant hand has one finger that sticks out and another that has dropped down.The left hand is going the same way too.Using a knife is difficult and hand tremors when trying to.
    My legs are heavy and I just about can do transfers but worse by evening.Worse leg gets pain behind knee at night.
    I can’t easily turn in bed to the left side either.
    I exercise my legs on the bed twice daily and do arm exercises sittting on the side of the bed.
    I think exercises help but who knows?Off to do my exercises.
    Have a good day.
    Mary

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  • Lynne K
    replied
    Originally posted by chrismadsen
    I had surgery last year on my leg, and it caused a lot of problems.
    Hi, when were you diagnosed and what typed of mnd Chris? I hope that the consequences of your leg surgery eases eventually xx

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  • matthew55
    replied
    Personally I do no excercises yet other than going up and down stairs and trips to the kitchen. πŸ˜‰πŸ€—πŸ˜ƒπŸ˜xx

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  • nunhead_man
    replied
    Good morning Ellie

    Originally posted by Ellie View Post
    As you know, ALS affects both the UMNs and LMNs - (UMN) upper motor neuron degeneration generally causes spasticity (tightness in muscles/high muscle tone) and (LMN) lower motor neuron degeneration generally causes atrophy (muscle wasting) and twitching - etc
    Thank you for putting all that together for me -- I guess I knew part of that. But putting it all together in that way was very helpful.

    I think my neurologist made a mistake by suggesting my left hand should be kept in a splint overnight to avoid damage as that is meant the my left hand has atrophied rather more than it might have done.

    Concerning gentle exercise I think I overdid it a bit last night in the sense both my hands got very cold while we were doing Dr bike session as shown here

    https://southwarkcyclists.org.uk/eve...ckham-arch-13/

    But I do agree with you the gentle exercises is good it makes me feel better both physically and mentally - latter well-known, of course, as in e.g.

    https://www.theguardian.com/commenti...on-cycling-cbt

    Best wishes

    Andy

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  • Ellie
    replied
    Hi there and welcome to the Forum.

    Unforately there is no "average" for the slower progressing UMN Dominant ALS, sorry to say...

    Are you long diagnosed and how has your progression been to date?

    Often past progression is a good indicator of what's to come, so it may take a few years to build up a picture of your disease.

    There are no hard & fast rules with MND, that's the problem...

    I hope your overall health is well and stay safe, i.e. try not to fall

    Love Ellie.

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  • livingwithmnd
    replied
    Originally posted by Ellie View Post
    Hi Andy,

    As you know, ALS affects both the UMNs and LMNs - (UMN) upper motor neuron degeneration generally causes spasticity (tightness in muscles/high muscle tone) and (LMN) lower motor neuron degeneration generally causes atrophy (muscle wasting) and twitching.

    So, yes, spasticity is a normal part of ALS. It is more severe/bothersome in PLS & UMN Dominant ALS.

    Antispasmodic meds - primarily Baclofen - reduces muscle tone making muscles more pliable and functional BUT getting the dose at the sweet spot can take a few attempts - you need to preserve enough tone to preserve function, whilst lowering the tone enough to facilitate movement.

    Range of motion (ROM) exercising is important to keep joints moving and stop them swelling or seizing up. ROM of any area, particularly hands, fingers, feet and toes, can include massage with oil (always towards the heart)

    Swimming or hydrotherapy is particularly good for spasticity, but any low impact gentle exercise is good, providing you don't overdo it!

    Love Ellie.

    What is the average life span with UMN predominant ALS/MND?

    Thanks!

    Leave a comment:

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