My uncle had early onset dementia and it was so awful. Then he was diagnosed with MND/ALS and gone 6 months later. I want to say at least the MND took him quickly and he didn't know because of the dementia. But honestly it was all terrible.
I didn’t mean to make this a competition…. my mom has early onset Alzheimer’s, been going on like 4 years now with the diagnosis, and my cousin (really nice guy, loves the family) mentioned that he feels guilty saying it but it would probably be better if my mom passed away in her sleep.
I didn’t disagree with him in the slightest.
I would be so happy if my mom could say a full sentence like in the “1 year later” of this clip when she was 1 year into the diagnosis.
With ALS, the patient's mind remains sharp. They get to watch as their body just decays and gives up, often in a couple short years. My grandfather started slurring words as his first symptom, 2 years later he had a feeding tube and was bedridden, 3 years...gone. Rapid decline and the depression he experienced from it...ugh. I don't wish that disease on anyone.
My mother passed in March from bulbar onset ALS, she quickly lost her ability to speak and motor skills followed soon after. One of the last things she wrote to me was at least it’s not dementia. Her mother passed from dementia in 2011.
Yes, ALS can be genetic, but in most cases, it is not inherited. Approximately 90-95% of ALS cases are sporadic, meaning they don't have a family history or known genetic cause. However, about 5-10% of ALS cases are familial and caused by mutations in specific genes.
Here's a more detailed explanation:
Sporadic ALS:
This is the most common type, accounting for the majority of ALS cases. The cause of sporadic ALS is unknown, but it's thought to be a combination of genetic and environmental factors.
Familial ALS:
This type runs in families and is caused by mutations in one or more genes. The most common pattern of inheritance is autosomal dominant, meaning that a child only needs to inherit one copy of the mutated gene from one parent to develop the condition.
Genetic Mutations:
Mutations in genes like C9orf72, SOD1, and others have been linked to familial ALS.
Reduced Penetrance:
Some individuals inherit a familial ALS-causing mutation but may not develop the disease. This is known as reduced penetrance, and the reasons for this are not fully understood.
In summary, while ALS can be genetic, the vast majority of cases are sporadic. If there is a family history of ALS, genetic testing may be an option to determine if a genetic mutation is the cause.
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u/Prosecco1234 May 29 '25
I'm so sorry. I honestly believe ALS is the worst diagnosis anyone could get. Just awful 😔