New member with familial mnd

[Anjum]

In a world filled with healthy people we are a chosen Few. Therefore common people cannot understand us or our needs....when people roam about loiter on street aimlessly we are hard put to even visit bathroom..

We worry about our state our loved ones and yearn for a single hand of support...

Hello I am Anjum ...a familial mnd patient from Kashmir India...

I lost my two aunts and my mother to the disease...the disease is dominent and is x linked . Though in last generation it was confined to female folk only but In his generation me and my brother both are involved....

This forum is a platform to reach to our audience...we need to support each other to the hilt.


I have a loving husband and two sweet daughters ...n I feel I ruined their lives...my kids are small 11 and 7..they do not understand my state of health and when I am not able to satisfy their emotional or other demands ...I weep a lot...

Since the disease is familiAl all Worry for my kids as well..

And the gene our family is affected with Is not a known gene....so it is tough for us and tough for future generations as well..

[Terry]

Hi Anjum and welcome to the forum;

Sorry to hear about you and your family's relationship with Mnd.

I reckon it's even worse here with people roam about loiter on street aimlessly but they normally help a me with opening doors and moving chairs etc when out in my wheelchair.

I don't think that the gene affects one sex more than another.

There are a couple of information sheets and links on tell kids etc:-

https://dbsy278t81889.cloudfront.net/app/uploads/2017/05/19135942/04a-communicating-about-mnd-with-children-and-young-people.pdf

https://www.mndassociation.org/support-and-information/children-and-young-people/children-aged-four-to-ten/

https://www.mndassociation.org/support-and-information/children-and-young-people/young-carers-hub/

Best wishes, Terry

[Hayls]

Hello Anjum
You’ve listed all my fears, I’m terrified of putting all the people I care about through all the heartache of seeing me deteriorate :’0(
It’s suspected that I’ve developed this condition because of the condition my Dad had but I am female but I was not guaranteed to develop MND it was 50/50 so it maybe worth clarifying with your specialist if your gene works differently.
My Mum began blaming herself because of me but no one is in control, diabetes, asthma and thousands of other conditions can occur for no obvious cause or gene, the ONE thing I’ve realised is that my family and friends still love me and what ever your children’s future holds I’m sure they will have amazing people around them to help them no matter what
My family and friends tell me everyday how important I am in their lives, no matter what I’m sure your children will want to have you no matter what, stay strong

[Lynne K]

Hi Anjum and Hayls. I'm sorry about your genetic mnd history and future worries. I have the C9ORF72 gene fault so have concerns for my siblings, children, grandchildren, great granddaughter, neices and nephews, making dozens of family. MND didn't touch my parents generation, but some died young from other causes. In my great grandfather's generation only him was recently suspected to have had mnd but he wasn't ever diagnosed. He died in his 40s having been in a wheelchair for a few years. I try not to dwell on negative thoughts seeing as what will be, will be whatever I do or feel. But we'd have to be hard hearted to have no fears for our loved ones. I hope that at least you both have a slower version of this horrid disease. Lynne