Father diagnosed and genetics

[Guest]

Hello to everyone here, pleased to meet you.

Unfortunately my father has recently been diagnosed and it's a big shock. I have a few questions if possible please and please excuse my ignorance and I sincerely don't mean to offend.

Does everyone with MND enter the "locked in" phase and if so how long can a person expect to live like this?

Can a sporadic case still be genetic as the faulty gene has to start somewhere so could it in effect start with my father then be passed on? With it being so rare I find it difficult to believe that all cases are not genetically linked somewhere. I wonder if there are many cases of a parent being diagnosed with sporadic then a son/daughter getting it?

Still in shock and things spinning round my head,

Best wishes to everyone here.

[Lynne K]

Hi Tecwyn. Sorry about your father's diagnosis. There was conversation recently on here about genetics so if you put a search on posts you ought to find something to read. The other question I pass on. Lynne

[Barry52]

Hello and welcome Tecwyn.

I’m sorry to hear about your father and I understand how you and your family must feel. Don’t rely on what you might read on google and the best source of information can be found on MNDA website although it can be difficult to navigate.

Unless your family has a history of MND then the likelihood of you getting it is so remote. Only around 10% of cases are familial.

You will find many answers to questions you may have from our forum family. Stay positive and encourage your dad to seek support from his health professionals.

Best wishes,
Barry

[Guest]

Thank you for replies, I will be using this forum as a source of support to help my dad. I maybe need to put this genetic link at the back of my mind so as to be strong for my parents I think.

[Ellie]

Hi Tecwyn and welcome to the Forum.

Sorry about your father's diagnosis.

No, not everyone gets locked in - the vast majority of us don't.

There is a very slim chance of a de novo genetic fault, but as 90-95% of all MND cases are sporadic and, if there's no familial history of MND, the overwhelming odds are that your dad is the unlucky 1 out of 300 people to get an MND.

Love Ellie.

[Guest]

Thank you Ellie, it's all raw at the minute and wrestling with thoughts on how my dad is going to deal with it and how to move on with a slight chance I may get it, hopefully things will ease and we can live as calmly as possible

[Terry]

Hi Tecwyn and welcome to the forum;

It can take a couple of months to get your heads around a diagnoses such as Mnd.

I echo what Ellie says in answering your questions.

Best wishes, Terry

[Guest]

Thank you Terry, yes a lot to come to terms with unfortunately

all the best

[Guest]

Hi Tecwyn.

Welcome to the forum, here you will find help and support and hopefully answers to your questions. MND diagnosis is difficult to get your head around for everyone involved, the sufferer, family and friends, and, as in my experience, most people don't actually know what motor neurones disease is and how it affects those involved,
All our best wishes
Tim and Mary

[Guest]

Thank you for the kind words, still finding it hard to believe that this isn't a genetic disease, if it wasn't I think there would be more clusters around certain occupations/locations?

If 5000 people have a MND in the UK then given a 50/50 chance offspring will get it due to a gene mutation that leaves 2500 people of which say half won't live long enough to get a diagnosis or a mis-diagnosed. The remaining 1250 people who went on to get diagnosed would then be classed as famillial whereas in reality all cases were familial just never classed as such due to parents never being diagnosed but carrying a gene. Sorry for wittering, not sure I'm making sense! what I'm trying to say is that without the clusters there must be a dormant gene within many unlucky families

[Ellie]

A maximum of 10% of people with ALS/MND have Familial ALS, i.e. the inherited form, and of their first degree relatives, not all will develop ALS.

It's obviously not unusual to have regional clusters of Familial ALS, if the families have not dispersed widely.

If your Dad agrees, perhaps you can join him at his next appointment and you can talk to his Neuro or Nurse, or maybe ring the MND Connect Helpline?

Love Ellie.

[Guest]

Thank you Ellie, I may just do that.

As you can probably tell, I am scared at the minute for primarily how my dad will progress and whether there is now a faulty gene within the family.

[Guest]

Without being too intrusive, please can I ask if any of your children went through the same thoughts and emotions as I have mentioned and am going through? and how they have managed to cope?

lots of positivity & love

[Guest]

Our kids are aged 28, 27, and 22. They have all thought the same as you since their dad's diagnosis and looked up some information online and asked me some questions and that's where it ended.

Fretting about what might happen or not happen is no good for you as I told our kids.

[Guest]

Yes good advice, what will be will be I guess, putting it into practice is harder, although I know that I have to stop the worry and be strong for my parents