Newly Diagnosed Bulbar Onset

[GillB]

Sorry just realised I tagged the wrong person who asked about Sheffield. I go there to The Royal Hallamshire Hospital to see my consultant and the MND clinic.

Heather R

[matthew55]

Sadly round here Covoid rules. I don't like zooming anyway.

[GillB]

Rosemary6NT

No I don't live in Sheffield but rural Lincolnshire. I got referred to there but the hospice is local to me.

matthew55

Sorry to hear that. I got contacted initially by email from MNDA and invited to a few Zoom and face to face meetings. They were not really in my area so I emailed and asked them who my Association Visitor was. She then emailed me and arranged the visit. Maybe if you email and ask who covers your area? They meet up monthly so I might just go to the next one, armed with my IPad to speak.

[matthew55]

Some people have all the luck. I have been alone with MND for almost two years and never had a MND visitor.

[Heather R]

Hi Gill, belated welcome to the forum. So hard when you can't speak. Do you live in Sheffield? Have just met a consultant from St Luke's in Sheffield, lovely and helpful guy. It would be good if your son can get some hospice counselling xx

[GillB]

Hi Rosemary6NT

Yes it is hard. I feel a bit better joining this forum. This afternoon I had a visit from an Association Volunteer and she was lovely. I have now been referred to the Wellbeing Centre at the hospice.

[Rosemary6NT]

GillB Hi, and a belated welcome. It must be so hard to cope with the diagnosis when you have dependant children. I am “lucky” in that I was 69 when diagnosed earlier this year.

[GillB]

Thank you Deb x

[Deb]

A warm and belated welcome to the forum from me Gill,

I am so sorry for your diagnosis and for all you have to cope with, whilst staying upbeat for your son. There's friendship and support on here so I'm glad you've made that first, hard post.

Take care,
Love Debbie x

[Music man's wife]

Welcome Gill xx

[GillB]

PeterPan Thank you for your welcome. I agree not easy to join but as I think I am moving out if the denial phase so today was the day.

[PeterPan]

GillB A warm welcome to you. It’s not easy to join a forum like this, but you’ve accomplished that already. Best wishes

[Ellie]

GillB It's not easy, is it? I doff my hat to you. xx

[GillB]

Hi Ellie

I see what an absolute star you are on here in terms of knowledge and advice.

We did sit him down after my diagnosis and didn't sugar coat it. He is getting help at college and sees his dad a lot more now. Although we are divorced we are working hard on helping him. I was given the MND Guide for teenagers but he didn't want to look at it. I know he can go for counselling with his dad at the hospice. I have just told him to focus in his studies. xx

[Ellie]

A warm welcome to the forum GillB I know that making the first post can be daunting...

If I may be so bold as to say try to be open with your son, which I know is *not* easy, given your diagnosis and all its implications. You're trying to protect him from the worst possible news but, in all likelihood, he won't thank you for it. Often, what he is imagining is even worse than reality.

Kids of all ages are more resilient, rational and adaptable than we give them credit for and like to feel part of things (in my experience)

The MNDA has various resources for young people, which you and/or your son may find useful. Details here

Take care,
Love Ellie.