My mom is 71 and also bulbar onset. Diagnosed 2/2013, actively seeking a diagnosis since the summer of 2012, but symptomatic for quite some time before that. We (family) are in disagreement about when she first started showing symptoms. But, as with most moms, my timeline is now associated with my kids. So I distinctly remember being very pregnant with my first daughter and joking about how my mom and I were taking our vitamins at the same time. I noticed she was taking hers with apple sauce and not water, which I noted as odd and asked her why. She said she got choked easily of late, and it was easier to take her vitamins and stuff with apple sauce or yogurt. So this would have been the summer of 2006. She and my dad act like they have no CLUE what I'm talking about, but I do remember that clearly. And being hormonal and grumpy and getting irritated with her for muttering and not projecting her voice when she talked. I'd get all irritated and say "Mom! Speak up! And why are you talking like you just woke up?"
So in my mind, that was the beginning. As of last summer she was at the point where people were asking my dad what was wrong with her (speech, weight loss, slow moving).
As of today, she is still walking, talking, eating (no PEG), and at the clinic this past Friday she GAINED 7 pounds and her FVC was 81%. That other breathing test they do (where you suck IN rather than breath OUT) was on the low end. She fell once, on carpet. Won't use a cane or walker. Walks a short distance with my dad in the evenings. She eats solid foods but has to take small bites and won't eat things like hard bread. She doesn't drool, but she has very thick saliva in her throat that chokes her. Got a script for Elavil on Friday to see if that helps. My dad makes her shakes in the blender. We got them a Ninja. So he uses Ensure, yogurt, ice cream, protein powder, fruit, peanut butter, etc. and makes it up in the morning and she drinks small glasses of it during the day. She does not want the PEG but is willing to reconsider down the road. Anyway, she does have limb weakness, can't stand or walk on tiptoes, finally agreed to STOP GOING UP AND DOWN STAIRS when she's alone, scoots down the steps on her bottom when she does use them (and someone is next to her), and agreed to stop doing stuff like laundry and house work. Not because she isn't able, but because energy conservation is important. Thankfully, she's always been a big reader and tv watcher so it hasn't been a horrible shock to her lifestyle.
Adding that she is on Rilutek. She started it a few weeks after diagnosis. My dad found the prescription assistance place out of North Carolina. He applied and it went from $1200/month to FREE. They have to reapply every 3 months. They aren't poor, but aren't wealthy. Apparently the income limits to qualify for assistance are higher for this than for social welfare type programs. Her doc said do it if it's cheap/free/doesn't cause you financial hardship. Otherwise he didn't seem to all fired up about it.
Jamie