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unicorn
10th May 2018, 14:45
Hi, I am grieving the recent loss of my Mum from MND she was only 62. Whilst dad was sorting through a few things he found my Grans death certificate and the reason of her death was Frontal Lobe dementia at age 65.. So if mother then daughter had this does this mean itís potentially a Familial strain as opposed to Sporadic. Iím frightened to death that me, Or one of my two brothers or worse any of my children could be next to succumb. Anyone have any experience of this within their own families? How can I find out about what to do?

Terry
10th May 2018, 15:29
Hi Unicorn;

I can understand your concern. You and your relations can be tested for some of the genes that are in the Familial strains.

If you have the tests done would it make any difference?

Whilst there is some quite distant connection FLD and Mnd it is not so common so I personally would try and find a bit more about your Grans condition and what and if any other symptoms that affected her. See if there are any if they might be Mnd related. If gran did not have many Mnd symptoms then it is probable that it is not connected directly.

It's easy to say, try not to worry.

Love Terry

nunhead_man
14th May 2018, 10:42
Hi Unicorn

I can't add any more to Terry's information on the linkage and his advice.

But I would raise a caution about genetic checking.

Where there is an absolutely certain link between genetics and the incidence of a particular illness then such checking can be used for such matters as advising on whether to have a family and treatment for adults who have a significant chance of developing this illness.

In motor neurone disease both the genetics are quite complicated and not clear-cut and there is no cure at the moment.

So knowing might prepare you for a future that never arises, although course it might, but which you can do nothing about except perhaps not make the wrong decision - like the one we made three years ago to move to a house with lots of stairs when there is the possibility that I will lose the ability to walk.

So I think it's well worth thinking about the consequences of the kind of investigation you're thinking about before you do it - what would you do if you found out that there was a family link?

I'm thinking both about the emotional consequences and practical consequences - e.g. always buying bungalows even if no MND develops :-)

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