Motor Neurone Disease

[Tinkerpuss]

My brother's wife has been diagnosed with MND, which turns out to be hereditary. Her mum died of it and we have since discovered at least another 2 close relatives of her mum who also had it.
Her mum was dead within 2 years but the disease affected her limbs first and only her ability to speak and eat at the very end. In this case it has started in my sister-in-law's throat and she has very quickly lost her ability to speak and because she can only take in liquids and is quickly losing weight, she is going next week to have a tube inserted into her stomach and will be fed through this. She has just been given a voice synthesiser.

Apart from some weakness down her left side there is little wrong physically so the family have decided she could live like this for many years. I know this is them being hopeful but I was just wondering if anyone has experience of this being a slower moving form of MND?

Thanks.

[Sqad]

A complicated disorder to discuss on a chat forum.....but in a nutshell and you can Google for further information.

The prognosis for MND is basically3- 7 years from the onset of symptoms BUT there is a group who's symptoms start with problems in their hands or limbs which deteriorate slowly and have a long term prognosis in excess of 10+ years.

However, if it starts in the throat, then the disease follows a rapid course and it may well be a form of ALS (Amyotrophic Lateral Sclerosis) and it does sound as if your SIL falls into this group.

Sorry.

[Tinkerpuss]

Thanks Sqad,
I personally had the feeling that this might be the case.

[Peter Pedant]

Sqad has been useful
I am sorry to hear that this has come to afflict your family

There are some complex issues here - if it is familial, then there may be a label or name attached that you havent said or she had been told and not said

you know - blichten blochten syndrome or something
then the info you get when you google is more specific

but the other thing is.....it is genetic and looks as tho it is aut dominant
which means that if there is a name and possibly even a test, then the family can identify who is affected - and they never get insured

this is indeed a terrible thing to have happened to your s-i-l


I think you are thinking of Steven Hawking who has lived an incredibly long time.

[momac]

God bless her...don't you wish at times you could be a miracle worker.