Old 08-07-2018, 12:41 PM #1 (permalink)
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Default Question about fALS inheritance?

I'm hoping this is the right forum I'm very sorry if not.

My dad was diagnosed with bulbar ALS in April 2015 at 51, and sadly only made it to February 2016. I never really worried that it could be familial, but last night I was up all night thinking about it.

He was an extremely heavy drinker and smoked 3-4 packs a day, I always thought that might have had something to do with it.

There are no signs of ALS in either of his parents families. His Dad had 2 siblings, and none of his cousins or nephews have had ALS, neither has his half sister. His mother had a huge family, with no sign of ALS in any of his aunts/uncles/cousins either. It seems like fALS would have showed up in at least one person, right ?

The thing that scares me is that his mother has had dementia for at least 10 years now. It's not FTP, her motor function is great, she just can't remember a thing other than me (her grandson), she is 96.

Is it just coincidence that she had dementia and he had ALS? It has been making me nervous... thanks for helping and sorry if i rambled !
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Old 08-07-2018, 12:45 PM #2 (permalink)
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Default Re: Question about fALS inheritance?

Very sorry about your dad. Yes, if it were familial, we would expect multiple family members to have had it. The incidence of dementia rises with age, so not surprising for your grandmother to have acquired it at 86. There is no relationship to ALS.

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Old 08-07-2018, 05:15 PM #3 (permalink)
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Default Re: Question about fALS inheritance?

Thank you ! It has been on my mind all day. I just read somewhere about a link between dementia and FALS and it scared me senseless. Especially wondering when it was going to get to me. That kind of stuff terrifies me. Thank you very much for your answer and sorry to hear about your loved one as well.
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Old 08-07-2018, 06:41 PM #4 (permalink)
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Default Re: Question about fALS inheritance?

The link between dementia and ALS is not talking about Alzheimers but FTD.

Anyone with FALS totally knows it is in the family. I'm so sorry for the loss of your dad.
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Old 08-08-2018, 01:38 AM #5 (permalink)
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Default Re: Question about fALS inheritance?

Also it seems as if at least one of my grandmas nieces/nephews or their kids would have had the disease right ? Because the genes would have been in her brothers or sisters as well. I think my dad had 4 or 5 cousins all healthy. I guess the fact that my grandma has dementia scared me the most, but her only real symptoms are that her memory is completely shot and she gets confused. Doesn't really sound like FTP but i'm not sure. I guess the only real way to find out is to consult a doctor, but making this post really helped ease my nerves. Thank you
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Old 08-08-2018, 03:23 AM #6 (permalink)
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Default Re: Question about fALS inheritance?

Also one last question sorry... what is the difference between alzheimers and FTP dementia ? Would my grandmother not have memory loss if it was FTP ?
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Old 08-08-2018, 02:57 PM #7 (permalink)
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Default Re: Question about fALS inheritance?

I'd suggest you ask her doctor.

No, most people with FTD, depending on the variant do not have memory loss. My husband did not have memory issues at all with FTD.

As I mentioned, you would know if it was genetic as you would have multiple family members affected so you can let that go
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Old 08-08-2018, 09:57 PM #8 (permalink)
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Default Re: Question about fALS inheritance?

Thank you so much for your time, you have no idea what it means to me. It helps, I may go talk to a doctor because for some reason that's all i've been able to think about the last couple days no matter what. Induces severe depression which I have had trouble with a few times in the past. Maybe it's common for a family membors survivors. I read somewhere about sporadic turning into familial and it keeps overwhelming me. I know I'm probably stupid and overthinking and that it's probably super rare for that to happen. I also hear good things about trials that may prevent it in the future ! Sometimes I think his lifestyle may have led to it... he did have a major surgery right before his symptoms also. I know it's a tricky disease with probably many different causes. But again, no one else in my family has had it, so maybe i'll stop tripping out over time. Hopefully lol.

Again thank you guys so much...these forums are great, I don't take any responses for granted and I wish I would have known about these forums when my dad was going through the disease. I was 21 and knew nobody that I could talk about it with or relate too. People with ALS are the strongest people in my opinion.
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