planning

First time in a forum! I'm not sure how to start this but... I am the caregiver to my wife and we were diagnosed on June 6th, a month ago. BTW I have been using the royal "WE" when it comes to my wife's health for a while now. Margarite (not her real name) was diagnosed with Crohn's disease in...

Hi everyone. I am reaching out because I am feeling so down and wonder whether this is normal. It has been five and a half months since Iven's passing and I still feel so empty and lost. Life goes on and I am busy looking after my girls, the dogs, the house, staying on top of my studies, and I...

We were diagnosed this morning. As I think some part of me has actually known since April 2nd when he came and showed me that his left toes did not rise up as high as his right (drop foot) my husband was told he has ALS. We had a whole clinic day actually, and Brian is very interested in...

Hi my husband was just recently given a 90% diagnosis of ALS in May of 2016. He has a dropped foot and his body twitches all the time. The reason the doctor won't give him 100% diagnosis is because he does not have a few of the normal symptoms. The reason I'm posting in this forum is because...

Hi, I have had about 2 years of extreme fatigue, problems with executive function, and more recently weakness with fasciculations. I already have diagnosis of moderate mixed sleep apnea (first thing I was diagnosed with 2+ years ago), immune deficiency, pituitary dysfunction, "CFS" and...

I've had ALS for a little over two years, am about to move in with parents, who are elderly, because it's getting harder and harder to live on my own. I can still do things for myself, tho wheelchair bound, but am also losing strength in my dominant hand. (Absolutely no bulbar symptoms I've...

Hi All, I'm not a great contributor to this site, but I truly appreciate those of you who are! You're created a supportive community that's both informative and kind, as well as a forum that often tickles the funny bone! Many thanks! Now it's my turn to make an offering. I'm finally ready to...

Good morning. I am in that in between phase where my diagnosis could go either way. All preliminary tests do not look positive for a good long term outlook so it's important that I begin some planning for myself and my family prior to my upcoming trip to my neuromuscular specialist and...

Hi friends, I've been MIA for a long time, but my mom was relatively stable. A slow and steady decline, but nothing that limited her abilities much beyond where we were in the fall. But suddenly there were some noticeable changes in the last few weeks, culminating in a huge change today. I...

I think most of us struggle with this. Some of us had a natural tendency to too many things anyway ( I certainly did / do). Add on top of that the new things we need/ accumulate- equipment, different clothes, lots of paperwork , the PALS lessening ability to do household tasks and the CALS...