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Thread: Can we fight mnd

  1. #1
    Forum Member kevin's Avatar
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    Can we fight mnd

    That's a massive question. I was of the opinion that exercise slowed the progress of mnd but I have seen some who try so hard and it never slows.

    We are such a mixed bunch things seem to work for some and not others. Personally exercise makes me feel good keeps my bowels working and I sleep well so it's well worth doing if you can .

    Some say coconut oil keeps them alive others say vitamins

    It's very notable people who take regular exercise live longer but I am not sure if it's that simple. If your going downhill fast it's hard to take exercise because your heads in bits and a certain amount of adaptation has to be done to exercise

  2. #2
    Forum Member Ellie's Avatar
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    Hi Kevin,

    Anything that makes one feel better has to be good for one's emotional and physical well-being.

    Exercise can be very different depending on which type of MND one has and the rate of progression. If one has PLS or a UMN Dominant MND, exercise can be done for more years because of relatively slow progression and it can help alleviate muscle spasticity, which is worse in those with PLS/UMN Dominant MND - which is a win-win situation!!

    For those with ALS/MND, exercise can be very difficult and short-lived due to progression i.e. marked muscle atrophy, but while one can, gentle exercise is recommended.

    It should not overtire one or take to long to recover from, but your statement that exercise slows the rate of progression of MND isn't true, unfortunately... It can help symptoms, so it can be done for as long as possible and, as you have said, you get good benefits from exercising.

    Take care,
    Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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    Forum Member Barry52's Avatar
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    Hi Kevin,

    I totally agree with Ellie. In my case with pls, exercise helps relieve the symptoms but it doesn’t slow down progression. With als, any form of movement such as chair stretching can be beneficial.

    Regards
    Barry
    Iím going to do this even if it kills me!

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    Forum Member kevin's Avatar
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    Thanks Ellie and Barry
    I am struggling with what type of MND I have . I asked consultant who just says bulbar onset and adds everyone is different . I asked is it a pls form he said no we have ECG results you have defonately not got pls .

    I am so different to everyone else . My body has one part deteriorating then it recovers and the process starts in another place
    Now that's weird . My hands could not open mouthwash bottle for weeks now I can . I never get everything back so I am deteriorating but it's slow . I remember talking to Graham about it he thought I had hero Genetics and pointed an article where cells can flush out bad protein there by recovering . It would explain things

    I have had MND long enough to know it don't matter what u got we all end up in same place . But if any one is similar to me I would love to sare notes

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    Quote Originally Posted by kevin View Post
    That's a massive question. I was of the opinion that exercise slowed the progress of mnd but I have seen some who try so hard and it never slows.
    I am going to come at you from another angle. Sure small amounts of exercise can help you. And its more keeping the joints moving rather than build muscle. Which wont help.

    So onto my pitch. And the whole reason I hit reply.

    The brain. That part of you is at the centre of you. The brain controls everything. If the brain is right, the body will work as well as it can. So look after your brain. And how do we fight it with the brain? We remain positive. At the start of everyday we are mindful of all the good things in our lives. Concentrating on what we can do and not what we cant. Stay positive. Its never as bad as we dream it will be. Sure its going to be tough. But you will do much better if you maintain a positive attitude. Keep going...

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    Forum Member Barry52's Avatar
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    Amen to that Ali Chris. You speak my language.

    Barry
    Iím going to do this even if it kills me!

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    Glad you hit reply Ali Chris.

    When my dear friend first received her diagnosis she was referred over the neurology center at a prestigious hospital in NY to a top notch specialist for als.

    After doctor confirmed her diagnosis he pointed to her temple, and told her the most powerful weapon she has against this illness is her mind.

    xox
    .

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    Forum Member nunhead_man's Avatar
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    I agree that looking after my mental health is just as important as looking after my physical health.

    Kevin, I do not think exercise slows the progress of MND

    For your information. I am quite early on with only my left arm and hand affected so far

    But exercise does help me with my spasticity. In other words, my hand and arm feels much better after I have exercised. If I do not exercise for a couple of days my hand ends up feeling like a bunch of bananas, whereas after exercise, I can use the muscles that still have a nerve feed.

    It is a challenge though, because in some cases only one side of my opposing pair of muscles is working?

    So, for example the muscles that extend my fingers are dead, but the ones that allow it to grip still work - , so I have to do quite specific exercises to exercise the muscles that I know are working without exercise. The ones that do not seem to be and damaging my unprotected joints as a result.

  9. #9
    Forum Member kevin's Avatar
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    Hello all
    All Chris I agree with you too my MND nurse told me that a positive out look is a big factor in well being and that will extend life .

    Exercise is a big thing for me . It's one man asking why he is doing well while others are not . Nun head man thanks for reminding me how lucky I am to still be able to exercise . Exercise to me keeps blood circulating clears my chest keeps bowels open and I sleep so much better . To date i have had no ill efects from exercise except facilations in legs that last a few hours emidatly after exercise . As MND sufferers we are all so different one course of action could never be right for all .

    Thanks for all your input . We need all your experances to form a balanced opinion

  10. #10
    Forum Member nunhead_man's Avatar
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    Hi Kevin

    I am glad you can still exercise - the body is really only a series of tubes and pumps and exercising helps those pumps to work on those tubes to keep them moving and clear.

    I managed to ride the bike for about 20 km today and feel so much better for it - and especially my hand feels a lot more positive and less stiff than it did first thing this morning.

    Do remember that fasciculation can be good and bad - not the least it is the fasciculation of the heart muscles that keeps us all alive - and fasciculation is not unusual after exercise as the muscle shakes and empties itself the waste products that have been created especially if I have been into oxygen deficit

    Best

    Andy

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