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Hi folks! My mom was dx with frontotemporal dementia in 2014, was dx with ALS in 2015, and died in early 2017. Her brother and her brother's son both had ALS. Mom was in some studies related to dementia at Houston Methodist. The researchers who worked with her just reached out to me asking me to...

I don't know how I am just seeing your posts! My mom was dx with ALS by Dr. Roman at Houston Methodist in December of 2015. She passed in January of this year. I'm in Lake Charles and Dr. Roman told me to move mom to a local neuro due to difficulty getting her to Houston. We saw Bogavalli a...

As usual, Nikki, your input is most valuable! I had no clue about the Miami testing not going into your medical records. I think you may have sent me the info on that program right after my mom's diagnosis. Are there many details on their website or would I need to call for specific information?

My mom passed away in January of 2017 after a year long battle with ALS. Her brain was autopsied and markers of the c9 mutation were found. Now that I know what to test for, I would like to have genetic testing done. I know I need to obtain long term care insurance before the testing and would...

Thank you so much for your response! I hope this isn't a stupid question, but how do I know that change takes place? What are the outward signs?

Thanks for the suggestions. I will definitely start the conversation with the hospice folks. Quick update on mom. After a couple days on antibiotics, her temporary respiratory issue seems to be resolving. Although she is better, she now wants to stay on her bipap pretty much all day, except...

When mom got on hospice, they provided orders for the usual stuff - Ativan, Morphine, etc. The nurse hasn't suggested anything yet. I just don't like seeing her struggle like that. I'm sure if I asked for them to medicate her, they would, I just don't know if it's time yet.

Mom has FTD-PPA, ALS, and COPD. She started antibiotics this week due to an upper respiratory infection. Last week, she would wear her bipap to sleep and for a few minutes during the day on occasion. For the past couple days, she's used the bipap pretty much all day. Even with the bipap on...

Thanks for bringing me back to reality. My one goal right now should be to make mom comfortable and to enjoy the time I have left with her. I'm a "fixer" and am having a tough time not being able to control anything. I know y'all know this, but it is sooooo hard to just stand on the sidelines...

I asked mom's hospice nurse if mom may be developing pulmonary hypertension due to the lung diseases -- mom is short of breath, fatigued, dizzy, has swollen feet, and has a rapid heart rate. The nurse said mom's symptoms are non-specific -- there could be a number of reasons mom is having those...