New member

[Toots Forum Member Find all posts View Profile Close Toots]

Hi my name is Linda and I have Motor nerone disease.my mum and granny had it

[matthew55 Forum Member Find all posts View Profile Close matthew55]

Very sorry to meet you but you have come to the right place. 😉😄

[denise Forum Member Find all posts View Profile Close denise]

Hi Linda
nice to meet you. Join in we're a great bunch of people.
Denise xxx

[richard Forum Member Find all posts View Profile Close richard]

Linda welcome to a group that no one really wants to be in but where you will get advice, help and knowledge from those who are on the same journey as you.

Ask any questions you want, someone her will always be able to advise.

Stay safe and keep smiling.

Richard

[Barry52 Forum Member Find all posts View Profile Close Barry52]

Hello and welcome Linda.

I guess you have knowledge of the disease and management of symptoms based on your genetic link. Although we are no further forward with a cure or even a treatment to slow progression than we were 30 years ago, there has been progress in improving our quality of life.

I hope you will keep in touch and I wish you all the best.

Barry

[Ellie Forum Member Find all posts View Profile Close Ellie]

Welcome to the Forum, Linda.

Sorry MND has had such an impact on your family.

Signicant advances have been made in inherited ALS/MND, notably in SOD1 & C9orf72 genetic mutations, which I hope will benefit you in the coming years.

Take care.

Love Ellie.

[Heather R Forum Member Find all posts View Profile Close Heather R]

Hi Linda, that sounds really hard having it in the family in that way. You will know a lot about it, but hope you will feel supported here x

[Jeanette Pearce Forum Member Find all posts View Profile Close Jeanette Pearce]

Hello Linda

I send you strength and best wishes

As a recent diagnosed MND sufferer I find this forum so helpful and has made me appreciate that I am not alone. I am grateful to be able to communicate with other MND sufferers

[Mary C Forum Member Find all posts View Profile Close Mary C]

Hi Linda ,welcome to this site and hope you find it useful for support and advise. It must be so hard to have seen what it did to loved family members. Hope you find some support on here .Best wishes Mary

[Guy Forum Member Find all posts View Profile Close Guy]

Hi Linda - sorry you've joined the club. Have you had bloods sent for gene testing by your consultant? As Ellie says things are moving now on some of the familial gene mutations (particularly the two she mentions). Promising Trials are in progress for these which may be of interest to you if you have one of these mutations (I'm not sure about the recruitment status though). All the best.

[Lynne K Forum Member Find all posts View Profile Close Lynne K]

Hi Linda, very sorry about your diagnosis and your family history. It must have been a worry for years. I have the C9ORF72 gene fault and my niece has tested positive for it. Take care and chat soon, Lynne

[matthew55 Forum Member Find all posts View Profile Close matthew55]

I had a gene test and found out why I have this. So what? I'm going to die early and that's it. 😆