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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...

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...

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...

I wrote this weekend about mom having an indentation above her collar bone when she inhales. Since then, I've found out that this is called tracheal tug or suprasternal retractions. It's a sign of respiratory distress. Mom was dx with FTD in early 2014 and ALS in late 2015. She's got...

Mom dx with FTD-PPA in 2014, restrictive lung disease and ALS in 2015, and COPD in 2016. We switched out her cpap for a bipap in January. Mom only uses the bipap to sleep. It's normal for her to get out of breath with the slightest bit of activity, but today I noticed something concerning. When...

My mom was diagnosed with FTD in early 2014 and ALS in late 2015. She lives in an assisted living facility. A couple weeks ago, I was able to get her qualified for hospice care. With hospice, a nurse comes twice a week (home health was only every other week) and a CNA comes three times a week...

I have been waiting for weeks to get mom in to see a local pulmonologist. I spoke with his scheduler today and she says, "Can y'all come in tomorrow at 1:30?" Duh, of course we can! Now I'm freaking out because I have no clue what kind of questions to ask. I gave the scheduler mom's history...

Mom was diagnosed with FTD-PPA in early 2014 and ALS a couple weeks ago. She rarely speaks, but can answer yes or no questions somewhat easily. With mom's limited verbal skills, I am concerned that I may miss things in her disease progression. Mom is in an assisted living facility and is still...

My mom was diagnosed with FTD in February of 2014. At her neuro appointment in August of this year, the doctor indicated that he believed she was in the middle stage of the disease. At mom's appointment on December 10th, he noticed mom's fingers were bent and that she had dimples between her...