Here we go again

[stillbelieving]

I am new to this forum, but not to ALS. In 2006 my moms youngest sister began experiencing muscle twitches and within 6 months was in a wheelchair and lost her ability to speak. Because she had no insurance or resources she never received a proper diagnosis and passed away 16 months later. And we never really knew why....

Until 2010 my moms middle sister began experiencing slurred speech along with weakness in her hands ans trouble swallowing. Her weight plummeted quickly. In October 2010 she was diagnosed with Bulbar ALS. She rejected the feeding tube. Uses the bpap machine but her breathing continued to become a chore. I was her caregiver and could not get anyone to understand how serious this really was. In August 2011 just 10 months after diagnosis she took her last breath due to respiratory failure.
During my middle aunts treatment the dr insisted that the 2 sister conditions could not be related.

In late 2013 I noticed my mother beginning to slur her words. Here we go again. Just last week my mother was diagnosed with bulbar als and now the dr is considering that it may be familial als.......well YAY!

Sad

 

[Atsugi]

Sorry to hear of your horrible circumstances. May I ask how young/old the youngest sister was when she was diagnosed?

 

[affected]

I'm so sorry to hear of this spreading in your family. Having lost my husband to this I can't even begin to imagine going through it more than once.

 

[tinyandme]

Praying for strength, love and peace for you and all your family xxoo

 

[Nikki J]

Hi I am sorry to hear this. I have been there I am there. Lost mom 2 aunts and an uncle. Sister has late stage ALS I have early stage ALS

You know the road. It stinks.

Have you considered genetic testing for your mom? Don't know how many people are potentially affected by this. Do you have siblings? Children? Cousins? Are there surviving siblings of your mom? Did either of grandparents have neuro issues especially dementia? That might give a clue which side it came from. The thing is if anyone wants to get tested themselves you need to know which gene it is because testing all known is expensive and they don't have tests for everything yet so a negative test for you or the others would not reassure unless you know what you are looking for. Some people choose not to know and that is fine but if anyone wants or might want the option your mom should consider it
Lastly there is a FALS group on fb come and join is

 

[stillbelieving]

Sorry to hear of your horrible circumstances. May I ask how young/old the youngest sister was when she was diagnosed?

The youngest sister was 55
The second 62
My mom 72

 

[stillbelieving]

Hi Nikki

We have not considered genetic testing. We have all agreed that there is really no benefit for us in knowing. i do have 3 siblings and both of my aunts have 2 children. I also have 2 children of my own. So of course there is great concern.

My mom has 3 brothers and a sister surviving. We have tried to trace it in the generations before them yet we have not been able to link any other family members with any type of neurological problems.

So sorry to hear of your history as well. What a sad and exhausting scenerio. I keep asking the question WHY as I am sure you all have.

Thank you for the info. I will look for the facebook group. I could use all the support and info I can get. I was the caregiver for both of my aunts that passed and will also be for my mother.
She has bublar als so at this time it has not affected any of her limb but her speech and ability to swallow is quickly declining.