After 8 months….

[CJV]

….I got the devastating news that I have ALS. This is particularly cruel since my husband died of ALS/FTD. I’m reeling.

 

[Nikki J]

I am sorry this was the answer. I expect you were told how rare conjugal ALS is which is no comfort at all. Although you know a lot more about ALS than most newly diagnosed remember every PALS is unique and your husband’s path is not yours

 

[KevinM]

I am sorry beyond words. As Nikki said, the experience of your husbands disease with the accompanying FTD does not mean you will follow the same path.

It is so unfair, and so incredibly rare, that you both contracted what is already a rare disease. Rare doesn’t even do it justice, as the number of documented and researched cases is less than 100 worldwide over the past fifty years. Little consolation, though, because it happened to your family. I just can’t express enough my sorrow and empathy for what you went through with your husband, only to be facing the same disease. If you don’t mind me asking, when was your husband diagnosed?

We are here to offer support and advice in any way we can. You are not alone. Kevin

 

[lgelb]

So very sorry, C. Whatever we can do, however small.

Best,
Laurie

 

[CJV]

My husband was diagnosed December 3, 2009 and passed January 2011. It was mercifully fast.

 

[gracey35]

I too am facing this same situation. My husband passed away in 2014 from limb onset after about 12 years and I was just diagnosed with bulbar onset in June of 2021.

 

[KevinM]

I am so sorry and saddened that you are both going through this after losing your husbands to the same disease. I have trouble accepting that coincidence can explain this extraordinarily rare occurrence. My thoughts are with both of you. Kevin