exhaustion

We've started our Spring travel. I have mixed emotions--excitement---fear---exhaustion (yes, it's an emotion too, as we all know)---happiness that he still wants to do something. Yesterday we drove three hours to Hampton, VA. Our first stop was his friend's jewelry store where Matt picked up...

I have been diagnosed since August of last year. Currently my arms are totally impaired. I can still use my fingers. EMG shows active deterioration in my neck, upper back, upper chest. I am having bowel slowdown. My legs, breathing, and speech are fine for now. I read on various forums about...

My husband seems unable to grasp the concept of my limitations. He has not read any of the materials about ALS. He can see my exhaustion, can see my limp, can see my dropped foot prosthetic, can see that I use a rollater walker, can see me lagging behind him 10 ft when he walks. Case in...

My husband has been diagnosed with FTD and a few months later we received a diagnosis from Barnes in St. Louis that he has familial ALS. His dad died 20 years ago with this horrific disease , and his sister died in 2014 of ALS. My husband has the repeated gene C9orf72 gene which links ALS and...

I've flirted with the idea of making an account for weeks now, I’ve been unwilling to feed into my own mounting paranoia, and until now I’ve been avoiding looking into the symptoms at all, but I’ve also found myself in need of community and the presence of those who can help me understand what...

Hello everyone, First, I do want to say I have read the sticky but do have some questions and want to do my best to respect your time as I know some may be limited on reply's. I'm 29 years old and been having weird symptoms for about two months now. It started with chest pains, I did...

Hi everybody, It took me a several months till I decided to post and apologies that it got right away quite a long one... Just to briefly introduce myself I am now 30 and w/o any family history of neurological issues. “Past” presentation of: fit, sporty with a stressful and demanding job (so...

I just need to rant here tonight because it has been a crazy tough week at our house. Along with physical changes my mom's personality seems to have taken a drastic change. I know anger is a part of dealing with this disease and potential FTD. She seems unrecognizable to us now and has been...

Hi everyone. I would greatly appreciate your advice. Four months ago out of the blue, the index finger on my dominant hand started moving On its own. It started pulling outward towards my thumb. Only happened three times the first day and I wasn't very concerned. By the weekend I was having...

I was fast tracked on this medical journey 1/28/16 after finally seeing a doctor for my chronic nasal regurgitation... turns out it's a lot more than a quirk or nuisance! Now I am on a puréed diet because I have neurogenic dsyphagia with atrophy, dysphonia & dysarthria (among other things). For...