Recent content by Gorby

I would try your local ALS Society. They should have a social worker that can suggest some services.

Here's a paper that talks about the multistep process of ALS. It's a tough read, but I think is interesting. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6105040/ I agree with Jethro that probably most SALS have a currently unknown mutation that puts them ahead a step or two in the 6-step...

Thanks for the info Nikki.

Genetics is complicated. Just because you carry a mutation does not guarantee that you will get a disease. Google the concepts "gene penetrance" and "gene expressivity". Data on penetrance for ALS genes is hard to find, probably because it is so complicated. But if you look at Huntington's...

Maybe a drug for urinary urgency/overactive bladder would help? Ask his doctor about Oxybutynin or something similar. ALS is the worst. FTD makes it suck even more.

Laurie has some great advice. I'll add - wash urine from clothing as soon as possible in COLD water. Use Borax, as well as your detergent, to reduce the odour. Since he can still stand, use pull-up style diapers or pads to make things easier to change. I find Tena Ultimate Overnight pads to be...

I would go back to ALS Canada for help. They should be able to supply a hoyer lift and a commode. As Laurie mentioned, it would probably make sense to set him up downstairs. If he has lost use of his hands and legs then a stairlift is not suitable and a lift to get his wheelchair up the stairs...

Ted was such a great storyteller. I just read his article in the ALS BC newsletter yesterday. I also enjoyed his podcasts : My Friend Ted - Podcast House. So sad to see him go. Condolences to his family.

I saw him perform live a few years ago. Very entertaining. Hope he recovers.

I thought lifetime risk was actually higher. I've heard 1 in 400. Some people even think 1 in 300.

Here's an article that talks about age of onset of 50 PLS patients: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3434688/ My symptoms started at age 47. That seems about middle of the road for PLS. 28 is very young, but not impossible. Although, I would definitely get a second opinion. My...

I think must be this one: Safety Study of Oral Edaravone Administered in Subjects With ALS - Full Text View - ClinicalTrials.gov Exciting news.

Cool idea

3rd cousin sounds very remote. It's unlikely that would constitute fALS. Also, I think the 50% risk applies only if fALS is confirmed. If your mom's ALS is sporadic (not familial), then I think your risk is almost the same as the general population. I say "almost" because there is a possibility...

Wow, that is a cool ride. Thanks for sharing.