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  • #74905
    wheelchairs and physical activity for DMD

    Hi I am looking for some advice for boys with DMD. My son is almost 9 years old and has used a manual wheelchair since he was 6 (only when his legs tire) and myself or my husband have always pushed him in it. Should boys with DMD be expected to push themselves in their wheelchair and is it detrimental to them if they do? My son really doesn’t seem to have the strength to push himself despite the OT ordering him a lighter and apparently more suitable chair. Yet she was very much encouraging him to work hard at it but I feel it might just make him more frustrated if he thinks he should be expected to be able to. Also have had mixed opinions on how suitable bouncing on trampoline is, can anyone please advise? thankyou

    Anonymous
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    #89382
    Re: wheelchairs and physical activity for DMD

    It is a fine line balancing act between using muscles to keep them useful and over using them and causing strain or damage. Whilst your son may not be able to propel himself for some distance, fr handy getting about in short spurts maybe it will hel[ hs miscles. I understand your getting mixed opinions because the disease like all children are highly indvidual.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
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    #89383
    Re: wheelchairs and physical activity for DMD

    Hmmm, some musings follow based on my experience as a manifesting carrier of DMD rather than as a parent of someone with DMD or an OT/physio. Well if your son is only using the chair when his legs tire then presumably he’s fairly tired in general at the time. Does this OT have much experience with DMD? I would have thought that a wheelchair should be a tool to make it easier to get around rather than a fitness challenge. I would think that if he’s able to push himself then doing so may help him to maintain that fitness but if it’s difficult for him then working hard to push himself is likely to have limited effectiveness in making him better at it but like you say seems likely to make him frustrated or discouraged if he feels he isn’t achieving. I personally haven’t found OTs I’ve seen have had much idea about MD but then my condition is more rare and it wouldn’t be fair to tar them all with the same brush! I haven’t seen all that many of them.

    Ailsa
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    #89384
    Re: wheelchairs and physical activity for DMD

    Sorry, I’m not from the MDC team so probably shouldn’t have answered on this thread… Ailsa

    Ailsa
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    #89385
    Re: wheelchairs and physical activity for DMD

    Alisa – you don’t have to be fom the team to answer, we welcome everyone’s comments and thoughts and experiences on issues.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
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    Joined: 05/03/2015
    #89386
    Re: wheelchairs and physical activity for DMD

    @angle wrote:

    Hi I am looking for some advice for boys with DMD. My son is almost 9 years old and has used a manual wheelchair since he was 6 (only when his legs tire) and myself or my husband have always pushed him in it. Should boys with DMD be expected to push themselves in their wheelchair and is it detrimental to them if they do? My son really doesn’t seem to have the strength to push himself despite the OT ordering him a lighter and apparently more suitable chair. Yet she was very much encouraging him to work hard at it but I feel it might just make him more frustrated if he thinks he should be expected to be able to. Also have had mixed opinions on how suitable bouncing on trampoline is, can anyone please advise? thankyou

    on the one hand I can see that your OT may thinks she is doing good by incouraging your son to stay active and avoid becoming lazy. yes we disabled peeps can be lazy just like the rest but does she understand that no amount of activity will build new muscle, if you son is having a real hard time may be because the chair simply doesn’t fit right anymore or has become too heavy.. being too short or outgrowing and being too tall in a manual self push chair can put you at the wrong angle to self push and as MD peoples muscles work in a different way it makes wheeling awkward. or one arm can be much weaker than the other (I cant wheel straight) and then scoliosis (curving of spine can make arm rotation harder I am of the don’t struggle view. if it has become to hard find another way of getting about. my power scooter and power chair have given me more personal freedom that a manual chair ever could.. still like my attendant pushed chair for smaller shops and eating , different tools for different jobs..

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
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