hard to cope with this latest news of grandchildren

I have no helpful advice but send you much sympathy, how heartbreaking for you all

I have no advice, being ignorant of MS, but have a virtual hug. I hope you get some useful replies.

Sorry, MD

I am sorry I have no useful advice but wanted to send you sympathy,strength and virtual hugs.x

grannygranby, just carry on being there for them, remain positive (even if you don't feel it) and encourage them to access any and every form of help available locally to them. Just being available for a chat on the phone helps immensely.

If they bring up the subject of their health concerns, then discuss it. If they don't, have the normal family chats, as it can be quite depressing if others make your condition the subject of every single conversation - or if they start to treat you differently because of it.

Like others I can only ineffectually sympathise.

This is so sad and such a worry fir them and fir you. If they are upbeat about it let them because it’s better to be glass half full than the opposite. There’s time enough fir sadness.
I know something about scoliosis and the treatment /surgery is usually very successful.
You may not live close but you could perhaps find somewhere nearby and stay a few days every so often If you feel they would like this.
Let them be positive while they can, I wish them and you, well.

I'm very sorry about your grandchildren - it must be very hard for you.

Your son and DIL have obviously found a way to cope with their very difficult situation by staying positive - and I'm sure they are facing reality.

Maybe you could contact Muscular Dystrophy UK to gain further insight and help you with your own anxieties. Wishing you well.

Muscular Dystrophy UK

My goodness what a whole lot of problems to throw at a young family I truly feel for you and for them I m sure you feel quite helpless I agree with others, keep on as you are, trying to keep spirits up, and offering what help you can even if it means a bit of travel
Is there a support group for family ( maybe online) that you could join to give you more helpful advise I have found support groups give such valuable tips and ideas that drs and the medical world may not have considered I m sure there will be one
All I can say is good luck to you all and hope things will improve at least with the little ones surgery ?

Like other posters I can only sympathise with your problems. Are there any on-line forums for this condition? If there are they will have others like your family battling this condition. They will be able to suggest ways to help and cope with things and just having support from people who know what they are going through can help, for you as well as them. I hope you get some answers.

I'm so sorry grannygranby, my sympathy. Apologies if you know this but Contact-A-Family (contact.org.uk) is a good source of support and information and will be aware of any local groups should they be helpful. It's more than difficult being at a distance, your son and daughter in law are coping in their own way, they will know how much they mean to you and how much you would like to help. It sounds as if you're doing exactly the right thing and yes, of course you will think of their situation constantly. Different I know but we're supporting our goddaughter in a caring role, they are 250 miles away. Our goddaughter says it helps enormously to know she can just share how things are, to have someone listen without judgement and laugh with her when she can. It never feels enough to me but she does truly value knowing we are here and are supporting her from a distance. I'm sure it will be the same for your family.

thank you all so much. Just being heard helps. I think you are so right Hetty58.
Things I have found out...Muscular Dystrophy is an umbrella term for many conditions. Theirs is DM1 (Myotonic Dystrophy) but it helps to use the umbrella term because people have heard of that. DM1 stands for Dystrophia Myotonica type 1. I had certainly not heard of it till it hit my family. Curiously and cruelly it is an autosomal dominant genetic condition. DIL and her parents were tested and it was inherited from her father who has no symptoms. In fact is a healthy 70 year old. With every generation it gets worse. The younger you get it the more severe the symptoms. My DIL had no idea she had it. Adult onset starts showing symptoms in the thirties. child onset around 8 years old and congenital - well most babies die. My GS could not breathe or suck for many months.
And Riverwalk - thanks I have just sent a link to local resource to him from the MD website.
There is a massively well-funded site for this variant in California and I am heartened by the research and trials that are starting using a form of gene editing that works in mice. Human trials already started. So there is hope. they at least know what gene is affected and where it is...the gene is normal it is just that a string of coding gets overly repeated which increases by generation. We all apparently have repeats of this CTG coding on this gene on chromosome 19... but until it rockets it does no harm. It's a bit like this problem with Omricron..and how doubling can become stratospheric so fast beyond what we can imagine. Which is why we have to take that very seriously.
I certainly hope that her parents who live closer to their only daughter, are offering full help. I can't find this out. But will keep trying. There seems to be a communication breakdown. When I ask DS he somehow always evades the question.
I think you are right silverlining48. and will try and work that out. Bless you all

Ive just caught up with later posts..as for the online forums...I agree and there are good facebook closed groups for the condition but my DIL belongs to them and I feel it is her place to ask etc ...but I do read like and listen to them and would love to more openly join in but that would be an intrusion on her space. As far as I know she is not on gransnet!

just writing it all down does help. that it is read and understood is amazing.

Oh how hard for you. Devastating that the whole family is affected.
You don't say how fit/young you are yourself. Would it be possible to move near to them to help out or do you have commitments where you are? Do they have family nearby already? I'm sure that as your DIL's condition progresses they are going to need help.

That is devastating news for your family grannygranby I can only imagine how you must feel. Its difficult to keep positive but also face facts as you say.
As GrandmaKT suggests would it be possible for you to move closer to them so you can help. Alternatively could you help financially with a cleaner, child care etc. In the meantime just be there to talk to them and support them in that way. You have my sympathy.

So sorry to hear that, grannygranby. So incredibly worrying for you. I agree with others, all you can do is try and stay cheerful for their sakes and be available to listen to their problems. Please don't brood, if you can help it, as it will do no good. Remember to look after your own well-being.

I too sympathise, and especially at a distance, it is hard to know what to do. I do have some suggestions that grandparents have done in similar situations, but I don't know what your financial situation is, or what they would find acceptable.
I would consider offering to pay for a cleaner, a once-a -week takeaway, a season ticket to some local attraction that would be suitable, possibly hydrotherapy sessions at a suitable pool.

Such hard news to bear. I have no advice apart from being there for them always.
A young woman at RDA when I volunteered there suffered from a degenerative disease. She was so upbeat and positive.
She had to break the news to her fiancé telling him to leave her. He didn't and they married on horseback because she refused to be married in a wheelchair.
They spent the next few years fundraising for the charity and being an inspiration.
By the way I recommend RDA .
though your Dil probably hates the word disability

What a turmoil your family must go through now.

Just let them know you are there for them - help means different thing for different people.

Such a very difficult time for you , I have no experience of MD so in no position to advise. What I can do is acknowledge your distress. , you love your GC and I can only imagine the worry you must be coping with. Life deals some nasty blows and I wish you and your family all the strength they will need. You are in a difficult position and are trying to support your son, DIL and your GC. I am thinking about you and send you my positive thoughts and ‘ hugs’ so sad you are in this position and sincerely hope you have a network of friends around to support you. ????

Gosh what a dreadful diagnosis for your family. In a way, I can understand your DiL and DS's attitude, they don't want to be seen as the 'disabled family' and have everyone telling the, how brave they are, they just want to be what they are, a normal, happy loving family who happen to have serious disabilities. I think the suggestion of paying for a cleaner, a take away, a meal out is a grand idea, it is just what we would all do for any of our children who live too far away for practical help. Meanwhile, keep posting on here, there are many people who can make sensible suggestions and may have experience of similar situations.

I don’t have any experience of MS but I do know what it is like to have a genetic problem in the family, specifically one that can show itself with a later onset.

We didn’t find out before we had our children but once we knew then our children were able to decide not to have any children of their own, so I was spared your difficulties and sorrow.

I hope your DIL can see her way through to accepting some support.It is difficult to accept that it is needed, I know. The Blue Badge made an enormous difference to us, if she could just take that. Lots of people have one so it’s not being so very different.

If she is very resistant to help then buying latest technologies and equipment can be a big help. A shower means you don’t have to lift children in and out of the bath. A robot vacuum cleaner means you never have to Hoover. A takeaway two or three times a week is just being like lots of other families.

These sound petty I know compared to what might be needed but everything small thing that maintains independence is of value.

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How dreadful for you and the family. I am afraid I know nothing much about MD but I have experience of scaring from a distance and I would say access everyone and everything that can give support. Wishing you all the best