ftd

As some know on this forumn my mother slipped into a coma this past Saturday. Last night she ended her battle with ALS-FTD. She passed peacefully and got to stay in her home throughout this dreadful ordeal. She was a wonderful wife, mother and grandmother and will be greatly...

I am a newbie here and have not posted too much, but sadly must say today that my Mom died on new year's eve day. She passed peacefully and lost her fierce battle with ALS. Her journey began in Feb, 2010 when she was diagnosed with bulbar onset ALS with FTD. She had hospice care since last Jan...

ok, my dad has probably been showing ftd symptoms for about 2 years (looking back) and more recently the ALS symptoms (only noticed the fasciculations at a neurologist appt one week ago) but he has had issues with his hand curling up in the past few months as well as difficulty breathing while...

I need advice. I understand the aspect of denial when you have been given a fatal disease diagnosis. What I need to know is how long does this denial last. My husband’s first diagnosis was Aug 15, 2011 and the confirmation from Duke was Oct 25, 2011. My husband will not talk about the...

My mom has been on a Bi-Pap machine now for about a year. She uses the Bi-pap about 95% of the day now and her pressure setting is set at 4.0. The last couple of days her breathing seems to be more labored and she keeps asking if the bi-pap is on. My question is, can the settings be adjusted...

There are so many beautiful combinations of colors on that wheel. What? Red and blue make purple or red and yellow make orange! Glorious, glorious colors! All of them. But, what if you want that yellow, blue, green, purple, orange...all at the same time? You keep grasping at the wheel, but...

I'll say I'm sad and leave it at that and close this thread.

I'm reading through the drug trials, and I'm wondering, can our loved ones, with both ALS and FTD ever get into any of them? Are we considered so different, so hopeless, that we should just go home and wait for the journey to run it's course? I don't mean to sound macabre, it's just how I'm...

Took Katie to the ALS meeting last night. Reported there that a lot changed over the last month, they wanted to know if Tom was more compliant. I said need generates a lot of things, for instance he is more clingey, and uses the suction machine himself, but he still resists things. What an...

Now that research is showing that up to 50% of pALS may have FTD, it would be nice to see that FTD forum bumped up, perhaps next in line after Caregiver's Support. I don't know how hard that would be. Just a suggestion. Thanks.