Grandpa recently diagnosed at 83. Risk for my mom?

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Understanding

New member
Joined
Dec 18, 2024
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2
Reason
Loved one DX
Diagnosis
12/2024
Country
CA
Hey there!

I found this community of course in a panic. And have been amazed by all the kind and grounded comments here. My maternal grandfather just got diagnosed with ASL at 83 after many mysterious symptoms for several months that began with one leg that didn’t “work” and resulting falls since approx july 2024. It’s been progressing very fast and has had to be hospitalized due to frequent falls and no longer being able to stand or walk or go from thing to thing (like toilet to bed, etc), and it was only after he entered hospital that he got a proper diagnosis. His arms are now starting to stop working, and as is his muscles in order to sit up. He can still eat solid foods a bit and drink, although he’s not very hungry most of the time. We were all wondering what the heck was going on and he had a neurologist who was going through testing one by one but it wasn’t fast enough with how quickly he was progressing one test by one test - all his mri’s were normal and so was his blood work, so he had to enter hospital (we are in Canada). He did have bladder cancer earlier this year so initially it was thought that maybe it was neuropathy from chemo. Anyway, the diagnosis understandably is shocking. I am having a really hard time processing and understanding and prepping for what’s to come. I think I’m still a bit in shock and I’m in the gathering data phase right now.

I’ll be the first to admit that I have always had a tendency toward health anxiety. I’ve cycled through different fears of different diseases for a long time but never once did I consider ALS because there are absolutely zero known cases in my family line. My grandfather also has zero family members who have ever been diagnosed with this, his dad, mom, etc and he’s got a good dozen siblings who all have lived to old age and no one has had this. Some have died but it was not from this. There were cancers mostly. The only thing is his dad did die young-ish from a heart attack, in his 50s so who knows if he did have a gene or something. From what I understand from my research so far, it’s unlikely that my grandfather has FALS? given he’s got a bunch of siblings who had their own kids and who have their own kids etc and no one ever had an issue with this.

I’m understanding too that usually familial ALS is often seen in younger populations? As in diagnosed in your 40s and not in your 80s. Is that accurate? I’m not sure yet which sites yet to fully trust.

Im feeling pretty terrified that this is just an optimistic way of looking at it and I fear that it’s probably genetic and me and his next of kin are all doomed. Like I said, I will happily admit I have health anxiety so my therapist is going to be very busy for the next little while, but I am also a rational person who likes data and the data does seem reassuring for others in my family, and myself. However, of course, I’m terrified of what’s to come and witnessing this decline. I’m so mad this is happening and how does one go through this trauma without being majorly affected? I’m worried for my mental health as I help my mom navigate this with her father. And then I’m worried, we’ll all get it and that’s it for us and for life. Of course I know this is a completely panicked take. And it’s a lot to process, any thoughts or reassuring advice or clarity would be helpful if you so have the energy to contribute (totally understand if not.) all my love to you wherever you are in the world right now.
 
It is incredibly unlikely that this is FALS. No other cases, a large family and 83? It is true that FALS tends to strike younger for most forms It is also true that for all forms of ALS the risk increases with age. Even sporadic cases tend to strike younger on average.

I am sorry ALS has touched your family. Concentrate on supporting your grandfather and your mother
 
Thanks Nikki. You do amazing work here and it’s not taken for granted. Just going through your responses have helped me so much, already. I’m not yet sure if they’ve done genetic testing on him yet and I’ve been going through your responses and posts about that. I don’t really know how it all works so learning here is helping calm down the anxiety and know what to expect.
 
Since you are in Canada there may be restrictions on genetic testing. The UK had an age limit if there was no family history. They changed that but think just raised it.

My clinic says they offer genetic testing to everyone. If your grandfather was a patient there they might but I doubt they would push too hard if he hesitated

It is normal for family to worry about themselves but your grandfather’s case is one of the least likely to be FALS for the reasons I noted
 
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