Hi all,
It’s taken me a very long time to join up on here. Wish I’d done it much sooner, but better late than never!
My wife was diagnosed with ALS in December 2019 at the age of 46. We’ve got two boys (16 and 13). Breaking the news to them is one of the toughest things I’ve had to do. Trying to take a day at a time and be positive whilst essentially grieving and coming to terms with the things we’ve lost still can feel overwhelming occasionally. Having moved during lockdown into a house that could be made accessible for my wife and the combination of juggling house renovations, with family life, a stressful job, caring, and everything else that comes with an MND diagnosis did get on top of me and put me in hospital in March last year with a nervous breakdown. If I’ve learnt anything over the last 12 months is to take things a day at a time, accept help when it’s offered, not try to do it all, and focus on the things that are really important.
On the positive side my wife is “slow progressing” - wheelchair-bound and with weakening arms, but otherwise pretty good mostly. I’m very grateful for the time we are still able to have as a family.
Like all of us on here I suspect, we’ve been on a rollercoaster. Just when you think you’re getting acclimatised to the situation, something happens which makes you feel like a complete novice. And I don’t expect that will ever change. Hence joining the forum I think/hope might help.
That was a longer intro than I thought it would be! Anyway, thought I would say hello.
It’s taken me a very long time to join up on here. Wish I’d done it much sooner, but better late than never!
My wife was diagnosed with ALS in December 2019 at the age of 46. We’ve got two boys (16 and 13). Breaking the news to them is one of the toughest things I’ve had to do. Trying to take a day at a time and be positive whilst essentially grieving and coming to terms with the things we’ve lost still can feel overwhelming occasionally. Having moved during lockdown into a house that could be made accessible for my wife and the combination of juggling house renovations, with family life, a stressful job, caring, and everything else that comes with an MND diagnosis did get on top of me and put me in hospital in March last year with a nervous breakdown. If I’ve learnt anything over the last 12 months is to take things a day at a time, accept help when it’s offered, not try to do it all, and focus on the things that are really important.
On the positive side my wife is “slow progressing” - wheelchair-bound and with weakening arms, but otherwise pretty good mostly. I’m very grateful for the time we are still able to have as a family.
Like all of us on here I suspect, we’ve been on a rollercoaster. Just when you think you’re getting acclimatised to the situation, something happens which makes you feel like a complete novice. And I don’t expect that will ever change. Hence joining the forum I think/hope might help.
That was a longer intro than I thought it would be! Anyway, thought I would say hello.

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