The Accidental Smallholder Forum
Community => Coffee Lounge => Topic started by: Greenmoor on September 10, 2012, 08:52:58 pm
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My husband and eldest son both suffer from a neuromuscular condition called CMT, or Charcot Marie Tooth Disease. September is CMT awareness month, so thought I'd do my bit and tell you all!
For anyone who is interested, you can find more information on CMT here: http://www.cmt.org.uk/What-is-cmt.php (http://www.cmt.org.uk/What-is-cmt.php)
Gemma :)
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id never heard of that, so ive had a look, im sure its hard to deal with, you have my sympathies. theres so many different types of 'neuro' diseases and all are so complicated, my daughter has one, ataxia, which we have learnt to manage and use techniques to help her cope.
all the best. dave.
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I'm sorry to hear about your daughter Dave. At least she has your support and help.
We have good times and bad here - I'm sure it's the same for you. Growth spurts seem to make things harder for my son. He does have a wheelchair for days out etc, but my husband isn't keen on him using it because he thinks it makes him lazy, it's hard work finding the right balance sometimes!
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my daughters ok, she can do most things just in a slightly different way to other kids, i count my blessings it could have been alot worse. ive learnt to follow her and let her make the decisions on what she can handle. im sure all kids are inherently lazy, particularly in growth spurts. :)
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Dave, your sweet daughter is a delight and you are justifiably proud of her. :) :) :) :)
Greenmoor, most youngsters are lazy and it's human nature to find the easiest way ;D .One of my grandsons, aged eight, has his small difficulties too which the medical profession keeps putting new names to. My dad would have called him "an innocent". How lucky these children are to have loving families.
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My elder son was born with no left hand and a short forearm. People always used to expect me to do more for him but I always let him try first. Now the only thing he can't do is fasten a button on his right cuff and he has been abseiling, bungee jumping, done fencing, played guitar and many other things. At the moment, he and his fiancee are mountain-biking 3000+ miles round Asia over three months.
If you let children try, they can often do far more than you would expect.
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Dave, your sweet daughter is a delight and you are justifiably proud of her. :) :) :) :)
Greenmoor, most youngsters are lazy and it's human nature to find the easiest way ;D .One of my grandsons, aged eight, has his small difficulties too which the medical profession keeps putting new names to. My dad would have called him "an innocent". How lucky these children are to have loving families.
How much more lovely your dad's description is than all the jargon :thumbsup:
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Thankfully William is a determined character, to his detriment at times; he often over does things to the point of not being able to walk at all. Rather than trying to encourage him to do things, we're usually to be found trying to reason with him to try and save some of his energy on a day to day basis (the wheel chair is only really used for days out).
He's suffering quite a bit emotionally at the moment because of his limitations, so we have a clinical psychology appointment pending to discuss coping strategies.
Fantastic stories of determination from everyone here x
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And for good measure, my husband was born blind and his mum taught him how to make her a cup of tea when he was 7 years old. The encouragement of parents makes so much difference. It can be very hard, even heart breaking, watching them struggle, sometimes, but letting them have a go is the best way forward. I have also seen disabled children whose parents won't let them try in case they fail. The result: they grow up believing they can't do it. You sound as if you are doing absolutely the right thing for your son.
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Watching the paralympic games everyday has completely changed my perception of disabled people. From those with autism to others with more noticeable deformities, they have proved to me that anything is possible in life even when the odds are against you.
I take my hat off to all those directly and indirectly affected by disability. :trophy:
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:wave:
my fiance has CMT too, as does his Mum and brother, and any daughters we have are guaranteed it.
:thumbsup: for raising awareness, so few people, even Drs, know what it is.
Dans