myotonic dystrophy

I am so sorry to read what you are going through. It is heartbreaking.

I send you ((hugs)) love, hope and prayers xx

I’m saddened you have received so few replies to your post. I would have expected more support for you.

In real life you will find out who your true friends are, as will they. People will surprise you. Ones you thought of as true friends might well drop away and others, less close, can often step up to the mark...but you know this already.

That post is so heartbreaking, I wish you well.

Yes thanks for that. I have done my research ever since baby was diagnosed a couple of months ago. My DIL was told two days before Xmas that she has the condition, very insensitive of them I thought.
The trouble with the forums of the charity and association is that they are linked to Facebook and are not anonymous.
One day perhaps my DIL would want to join and she would see me there discussing her condition.
Hence gransnet.
It reminds me too of when my late husband got motor neurone disease at 31...some people just drop away. Already my SIL has dropped contact. It’s very odd. Perhaps it’s best not to tell people.
I just wondered if anyone else was in similar position x
My son told me on Xmas day when they were all with me but said she didn’t want anyone to know. She won’t know that I know.
My son is either being very wise or very stupid when he says that he told her it made no difference she is the same person as she was before the diagnosis. I suppose I just want to talk about it. I understand why they are in denial. Over the baby too though she is very poorly. But she has learnt to breathe and suck... no focussing, very floppy, has s faint bleat instead of a cry. Utterly heartbreaking and nothing to be done except show massive support and love.
I think the worst is that it is progressive. I will just have to put it aside with my grief and be patient and wait till there is anything I can do.

So sad to read your post Rocknroll you must be devastated, as must your son and DIL.

It might be that, as they find out more and try to come to terms with this diagnosis then, the time will come, as a family, when they do want to talk.

Just let them know when that time comes you are there and perhaps in the meantime do some research ?

???

So sorry that you and your family are having this to deal with.
You are powerless to give anything but love, practical help and total support.
Pleas get in touch with the relevant society as Luckygirl has suggested. You will be in contact with other families dealing with the same problems and issues.

I do not have experience of this, but sending you love and kind thoughts - how very difficult for you all.

I wonder if there are any relevant support groups online?