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nowdivorced-but
26th May 2011, 19:31
Hi everyone, my ex-husband has mnd........as yet my two youngest children aged 8 and 12 do not know, they live with me and their Dad does not see them much (his choice)........just wondered if anyone else can give me advice in this position regarding what to tell them, how much, and when????

justaboutsane
27th May 2011, 00:27
Hello

My children are 9 & 13 and I have found the booklets you can send away for (Children & Young people) very helpful. Go to the main MNDA home page- life with MND-getting more information-Publications- people with MND and carers. You can download the booklet there or have it sent you you. It is not a fixed book and comes with a folder, so you choose what you want to show them and the order to put it in. I hope this helps you x

hilary walklett
27th May 2011, 14:46
I've also heard very good reports of the booklets for children and teenagers (2 different booklets!). As justabout says, they are very flexible, so you can use them as you think best for your own children.
Good luck with it, and please let us know you get on withit.

Hilary

nowdivorced-but
29th May 2011, 19:04
Thanks to both of you, I have the MND literature for them, just not sure how much to tell them.......my instinct is to say that he has a problem with his muscles and leave it at that for now........but not sure if this is the right approach?

Chris
29th May 2011, 19:25
Hi my daughter is 8 and upto now she knows i have a sore arm, ive decided to tell her things as i progress and answer as best i can any questions she has. I feel its best this way rather than telling her all the ins and outs in one go.

G60dubber
29th May 2011, 23:33
This is such as tough one, my daughter has just turned 4yr and is very bright. We've had to explain that daddy has poorly legs so can't run / chase after her. She's been great about not being able to walk far / use hands for much and I'm amazed how she's taken it in her stride and just does things that help without being asked.

The hardest part is when she picks up about hospital visits and asks if they're going to make daddy better. I won't lie to her so just have to say that the doctors are trying to find a way to make me better. We've developed a special way so that I can pick her up for a hug and a cuddle. She loves the idea of my scooter as we make it fun for her by letting her have a play with it with me, plus she learns good basics of driving :-). She notices other people in chairs or on crutches and is interested why they are using them, this offers a good opportunity to explain about why people need to use these things to help them.

Everyone knows their own children best so I feel you instinctively know what to tell them and when as it arises.

G60dubber
1st June 2011, 12:36
went to physio yesterday and they gave me crutches to assist walking / reduce falling over. Was stood flying kite with little un later on and I fell over, doh!!. Off she runs without a word into the house and comes back with my crutches telling me to use these so I don't fall. Really proved to me how she is taking it in her stride and just gets on with it. Only problem is she now wants a pair too as she tells me she can then race me... OMG what have we bred lol

miranda
1st June 2011, 14:44
A sense of humour is essential!!!

jen
1st June 2011, 22:12
hi
My children were only 7,6,3&1 when I was diagnosed in 2005.At first we only told them that mummys arms and legs don't work and arnt going to get better. As time has gone on they have asked and we have told them honestly. The three older ones know the whole story but not sure how much the six year old understand. But that is with them living with it full-time. Not an easy one but the kids seem to just get on with it. We can now laugh at me dropping things or spilling juice.

ankydas
15th June 2011, 09:43
can anyone explain me what s exactly mnd?

Robin142857
15th June 2011, 11:18
No-one knows the cause of or any cure for MND. It is diagnosed when all other possibilities have been eliminated and the symptoms that remain match the symptoms of other people with MND (don't think too hard about that - it is circular). They (clinicians) say that MND causes nerve impulses to be blocked from following their usual route down nerve fibres (but don't yet know how or why). The result is that muscles no longer get stimulated and as a result (just like someone on bed rest) the muscles waste away. Just as loss of leg muscle --> wheelchair, so loss of trunk/chest muscle --> breathing problems and chest infections which themselves may lead to pneumonis. Then there's Bulbar Palsy --> eating/swallowing problems forthe same sort of reasons. And finally (?) loss of arm muscle.

Any help? Anyway, welcome to the Forum. Keep up the questions, hope we can help. Trouble is, sometimes you don't know enough to ask the right questions!

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