als and ftd

For starting this subforum! I am not sure how many of us there are here now. For those who don't know me I am Nikki. My family is a FALS family and we are c9orf72 which is the most common cause of FALS. C9 causes ALS and FTD either alone or together. It also causes progressive supranuclear...

Feeling down - I am so angry with EVERYTHING! I feel so bad - Jim is having a hard time and I feel angry with him. He is saying he is having problems opening and closing his eyes (okay not angry on that one.) He is back to getting up several times a night - but having problems getting in and...

I apologize - it has been so long since I last have been on here I almost forgot how to post! Life has been a lot of the same old same old. Jim is progressing slowly, though some of his ALS symtoms have been coming up. He has lost weight yet again. His breathing is stable but he has lost a lot...

My beautiful mother passed away peacefully February 7th. She was without a doubt, the best human being I have ever known. I will strive to honor the legacy of love that she left behind, for the rest of my life. She is now free of ALS and FTD, but they still have their grip on me. I am trying to...

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...

Here in Canada we are having our Thanksgiving weekend. Mom (Tom's) has been in the hospital for a rather lengthy stay because post hip surgery she became badly infected and needed a lot of antibiotic treatment. In the meantime, sis-in-law and I became acquainted. Ya, this family is really...

Hello All, I'm not sure what to think at the moment, I've been reading these forums for days. My father had what everyone presumed was a stroke last spring. The CT machine was broken though. They just assume it was a stroke because of the loss of speech. Although, thinking back he was slowly...

My hb is in the final days or weeks of bulbar ASL/FTD. The meds he is on are a mixed blessing. Anyone who has been through this have any suggestions? I want him to be as comfortable as possible but still hate seeing him out of it. * Lorazepam, every 4 hours - helps with anxiety over the...

Ok - so of course our PCP is on va-kay because we have had 2 unexpected doctor's visits this week. First for me -- I went in to getthis stupid abdomen pain figured out (long boring story) BUT First they send some med student to take my history... (really love recreating the wheel AGAIN) I try...

A hard question but maybe someone can help. My hb has bulbar ALS and FTD. He's 5' 10", weighs 108 lbs and losing weight quickly over the last few weeks - 5lbs per week or more. He still is able to eat about 10-20% of normal but has no appetite. He can eat small pieces of steak. He chokes but...