Frontal lobe dementia and MND connection?

[unicorn]

Hi, I am grieving the recent loss of my Mum from MND she was only 62. Whilst dad was sorting through a few things he found my Grans death certificate and the reason of her death was Frontal Lobe dementia at age 65.. So if mother then daughter had this does this mean it’s potentially a Familial strain as opposed to Sporadic. I’m frightened to death that me, Or one of my two brothers or worse any of my children could be next to succumb. Anyone have any experience of this within their own families? How can I find out about what to do?

[Terry]

Hi Unicorn;

I can understand your concern. You and your relations can be tested for some of the genes that are in the Familial strains.

If you have the tests done would it make any difference?

Whilst there is some quite distant connection FLD and Mnd it is not so common so I personally would try and find a bit more about your Grans condition and what and if any other symptoms that affected her. See if there are any if they might be Mnd related. If gran did not have many Mnd symptoms then it is probable that it is not connected directly.

It's easy to say, try not to worry.

Love Terry

[nunhead_man]

Hi Unicorn

I can't add any more to Terry's information on the linkage and his advice.

But I would raise a caution about genetic checking.

Where there is an absolutely certain link between genetics and the incidence of a particular illness then such checking can be used for such matters as advising on whether to have a family and treatment for adults who have a significant chance of developing this illness.

In motor neurone disease both the genetics are quite complicated and not clear-cut and there is no cure at the moment.

So knowing might prepare you for a future that never arises, although course it might, but which you can do nothing about except perhaps not make the wrong decision - like the one we made three years ago to move to a house with lots of stairs when there is the possibility that I will lose the ability to walk.

So I think it's well worth thinking about the consequences of the kind of investigation you're thinking about before you do it - what would you do if you found out that there was a family link?

I'm thinking both about the emotional consequences and practical consequences - e.g. always buying bungalows even if no MND develops :-)

[Hayls]

I know this is an old post but I thought I’d comment as my Dad was diagnosed in 2014 with FTD and he passed away August 2018 and I started having symptoms in September 2018 and diagnosed with MND July 2019, the Neurologist suspects that I have a gene that has caused this and I’m currently having tests to see if I’m suitable for taking part in a gene silencing trial, I hope whatever you choose to do, you’ve been given support for the outcome, I personally do believe that my dads condition was linked to mine but I hope that any trial I take part in will help my brother in the future in the hope it prevents him developing MND fingers crossed

[nunhead_man]

Good morning Hayls

I am sorry to hear your news and hope that you have all the support that you need?

We do our best here to help each other

I’m currently having tests to see if I’m suitable for taking part in a gene silencing trial,

Do please keep us updated with how this goes - and I for one will be interested in what you are told about how silencing any particular gene will contribute to slowing your development of this nasty disease.

Warmly

[Ellie]

Hi Hayls,

You're great for putting yourself through this research, thank you.

I echo Andy's words regarding support for yourself, but I hope that's part of the genetic testing?

If you can, please keep us updated.

Love Ellie.

[Hayls]

Andy and Ellie, you all have shown just how determined we all are and I will certainly share any news good or bad in the hope that I can pass on anything I learn that would support anyone in navigating a way to make our journey not so upsetting for all of our loved ones who are trying to hide their pain while being brave for us and all the uncertainty, thank you for your support, I’ll keep you posted

[MNDConnect]

Dear Unicorn,
I am so sorry to hear that you have recently lost your Mum to MND. Please accept my sincere condolences for your loss and know that we are here for you and your family.
I wondered if it would be helpful to talk to myself or one of my colleagues here at MND Connect in order to discuss your concerns with regards to your family history.
We can be contacted on our freephone helpline, 0808 8026262 Monday to Friday from 9am to 5pm.
Please know that we are here for you and your family.
Kindest regards
Ruth