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Katie, I'm in no way thinking that people are withholding information, nor am I somehow thinking I've gotten no responses. I was just wanting to hear as many experiences as people are willing to share, and I hope you don't begrudge my desire to just collate whatever information I receive and...

Hi Dawne-- Thanks for the reply, and I'm sorry about your friend. It must be hard to be a nurse and still feel like you're not getting answers. We're pretty far down this road--we've been handling my mother's choking problems for over a year, and she is now on very very very pureed foods and...

Yes, absolutely, but I was hoping for some people here who have already been down the path, like Nikki up above, just so I could read some experiences.

Thanks again for the replies, and for the tips. We are doing pretty well with feeding her and getting calories into her, and she is almost never alone and so doesn't have much opportunity to try to eat something she shouldn't. What I'm more interested in, though, is an understanding how the...

Hi--My mother has bulbar ALS, in addition to frontotemporal dementia. Because of the dementia and because of her clear entreaties over the years, there is no feeding tube, and won't be any other life-prolonging measures. I actually just posted a thread a few days ago asking for insight from...

Nikki, thanks for replying on what I know is a painful subject for you. I'm so sorry about your Mom. NH, thanks also. My Mom actually already heavily relies on Ensure shakes, which we blend with bananas, other fruit, and ThickIt to make them thick enough for her to get down. Her dementia doctor...

Hi, I'm hoping for some input from caregivers of people who have had bulbar ALS but chose not to have a feeding tube. Our situation is a bit different in that my 72-year-old mother's journey began with frontotemporal dementia about 2 years ago, and then bulbar ALS symptoms arrived about a year...

Sorry, should have said "experience with the *rest of the* Hopkins ALS clinic was terrible."

We took my mother to the Hopkins ALS clinic, and actually had a very good experience with the neurologist and the exam (and the confirmation of ALS that was already guessed by my mother's dementia doctor at Hopkins), but our experience with the Hopkins ALS clinic was terrible. Won't be going...

Thanks for the data points. Mom was diagnosed in February of 2012, so not quite one year ago. We noticed her "dropping words" here or there, like maybe once every hour or so, in August of 2011. Looking back, we can probably recognize some behavioral changes in the months before that, but nothing...