A ‘What Would You Do’ Question

[matty2094]

Sometimes the best advice comes from the people who are furthest removed from the situation so I guess where better to ask.

Apologies in advance if this is a bit deep. 

A ‘what would you do in my shoes’ type question…

My grandmother died young from MND. My mother has Frontotemporal Dementia (diagnosed at 61). Both of these are linked to a gene mutation that there’s a 50% chance that I may have inherited. 

If I have, there’s a rather increased chance that I could develop either (or both) by the time I’m 60 (half way there this year). In short, it’s fucked my head up. 

Now I can get tested to confirm whether or not I’ve inherited it but the question is whether or not you’d want that. 

Do you live in blissful ignorance and when your time comes, it comes? Or do you get the test and there’s a 50% chance you’re negative or if you are positive, your heads potentially even more fucked?

But then on the other hand, you’ve got a place in line for any preventative treatments that may be developed in the future…

There’s also the fact you can find out if any theoretical child you may have can be tested during pregnancy to determine if they’ve inherited it from you (with the option to not continue with it).

Apologies again, I know it’s a deep one, just appreciate an impartial view. Heads flitting from one way to the other on an hourly basis.

[Zico]

Find out 

Then plan accordingly

[Whitestar]

If you're only 30 put it far far out of your mind and get on with your life, loads of shite could happen before you need every worry about what may or may not happen, and anyway they might have found a cure by then.

[gonzo]

Depends if you're an obsessive anxeity ridden worry wart...

Id have to find out

[little whitt]

One Life Live It 

Live every day Like its your last 

You could be hit by a Bus Tomorrow  or Die in a RTA 

[matty2094]

10 minutes ago, gonzo said:

Depends if you're an obsessive anxeity ridden worry wart...

Id have to find out

That’s exactly what I am. But then I’m worrying about if it’s positive, am I going to be worrying about when my times going to be up… 

It’s a vicious cycle and my minds gone to defcon 1

Edited February 14, 2024 by matty2094

[Cheese]

Blissful ignorance for me. Take each day as it comes. But I'm a fool.

[Lt. Aldo Raine]

What @gonzo posted

If it's causing you such anxiety it's having a significant impact on your quality of life now, I'd think it's probably best to find out

There's probably a relief in knowing either way

[DirtySanchez]

Find out 

If it could be MND or similar it's a game changer to how you live your life or care anyone might need 

You might get it 30 years later or 3 years

 

[Casino]

48 minutes ago, Zico said:

Find out 

Then plan accordingly

Id find out

But thats because id be convinced id be getting the worst possible outcome if didnt actually know

[Casino]

8 minutes ago, DirtySanchez said:

Find out 

If it could be MND or similar it's a game changer to how you live your life or care anyone might need 

You might get it 30 years later or 3 years

 

Another good point

Maybe id max up the insurances first

[DirtySanchez]

21 minutes ago, Casino said:

Another good point

Maybe id max up the insurances first

Know someone who's Dad got MND in their 50s 

Went from being a keen cyclist who did the Alps to having his wife wiping his arse in six months 

Stephen Darby and Rob Burrow show no age is relevant with stuff like that 

[Tonge moor green jacket]

Before making the decision, perhaps seek some help from someone who will help with how your mind is in turmoil.

Certainly speak to your GP, but some sort of psychological help would be of benefit. 

If your concern carries on, it may worsen and become a much bigger issue.

I've sent you a pm.

 

[MancWanderer]

I’d want to know. Bit like that Panorama on Monday about Alzheimer’s. If you know early you could potentially get treatment early if it becomes available. Research these days tends to look at Disease Modifying Agents (DMAs) and gene therapy is part of that so I’d be hoping that something could come along in the near(ish) future and that I may have a place in line like you say

i also agree with TMGJ about speaking to someone now about it

[matty2094]

Thanks all.

I think finding out is probably the most sensible option for me, I guess everyone is built different. It's just the fear of a positive result that's scaring me now. 

I've booked in to see the person TMGJ has recommended anyway to (hopefully) work on alleviating some of this anxiety.

[Ani]

Hope it all turns out ok.

 

I would test, if negative you can crack on, if positive you can plan accordingly. You mention kids, if you do not test what do you do if they come along ? Surely it is something you need to discuss with any partner you may have kids with. 

[Leyther_Matt]

I think from a selfish point of view I’d just say crack on and live for the moment anyway. You could develop the condition in 20 years, you could get hit by a bus in 20 minutes.

That said, for those around you (and maybe your own curiosity and anxiety) then it would be good to get any sort of advance notice of what you and your family may be dealing with.

Speaking to your GP and taking note of any referral is a good shout. 

[Cheese]

How many people die by getting hit by a bus? The frequency that people use that phrase makes it sound like we're all living a real life game of Frogger.

[little whitt]

Just now, Cheese said:

How many people die by getting hit by a bus? The frequency that people use that phrase makes it sound like we're all living a real life game of Frogger.

i once seen someone get killed by a bus 

so it dose happen 

[little whitt]

just Googled in 2022 

9 people in London ere killed by a bus

[superjohnmcginlay]

 

2 minutes ago, little whitt said:

just Googled in 2022 

9 people in London ere killed by a bus

Has the bus been caught yet or are The Met still looking for it? 

[Cheese]

4 minutes ago, little whitt said:

just Googled in 2022 

9 people in London ere killed by a bus

So literally 1 in a million.

[Winchester White]

My dad died of MND in his early 60's and I know his dad also died of some deliberating illness but not sure what as my dad was young.

No one has suggested to me to have any checks or owt. Should I look into it?

[jayjayoghani]

4 minutes ago, Winchester White said:

My dad died of MND in his early 60's and I know his dad also died of some deliberating illness but not sure what as my dad was young.

No one has suggested to me to have any checks or owt. Should I look into it?

Erm... sorry pal but yes. Perhaps get a death certificate for your grandfather, this may have cause of death? 

[matty2094]

13 minutes ago, Winchester White said:

My dad died of MND in his early 60's and I know his dad also died of some deliberating illness but not sure what as my dad was young.

No one has suggested to me to have any checks or owt. Should I look into it?

I would, definitely. I’ll drop you a message shortly.