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Good afternoon, My father was diagnosed with ALS on October 6, 2017. The critical care neurologist said he was about 16-18 month into the progression of the disease and gave him about 8 months. In retrospect, we feel that he was probably more like 2-3 years into the disease. He passed away...

I've asked this question before but want to see if anyone has new information. When I was going through the diagnostic process, the neuro I was seeing suggested genetic testing through the Athena Lab in the Boston area. (Think this lab has a new name now) The cost was about $35,000, so it was...

Dear all I'm in a really tough spot and have been for about 3 months. Please can I run my symptoms by you to see if anyone can relate to my condition and progress. I have felt a bit off since the beginning of the year like a growing fatigue, but I put this down to having a 1 year old (now...

My wife is in a fairly late stage of ALS; no limb movement, speech very hard to understand entered home hospice care, vial capcity now in 20s-30s (I have a blog entry explaining more). She drinks water constantly, day and night, and for this reason spends most of her time soaked. Despite a towel...

I have posted here before about my wife's condition. She has been in a wheel chair for over a year now and getting very weak. Recently she was hospitalized due to horrible stomach pains and constipation. I sent her to Lahey Clinic 3 times in a week by ambulance and they finally admitted her...

Hello age 19, for seven weeks now both my calves have been fasciculating on the inner and outside of my calves to what seems like they are always fasciculating except for when im moving, I also get random twitches in other places in my body like neck, arms, hands, chin feet, etc. but they...

Hello all, thank you for your community. I have been seeking some form of diagnosis for a year or so now after beginning a variety of neuro type symptoms last Fall... which were initially numbness and tingling (I know, not ALS), which morphed into body wide twitches (worries began here)... which...

If your PALS is still able to stand, even with great difficulty, this transfer "sling" may help you to maintain your ability to do stand-pivot transfers from bed to w/chair, etc. I have found it amazingly helpful for transfers in and out of the car. Your PALS must still have some leg strength...

This is my first post in the forum. Although my husband was diagnosed at 38 years old, and 6 years ago already. I never posted before because I just couldn't bare to read what was coming. However, it is now a point in our lives when I think that important decisions will need to be made, and I...

I have some questions concerning a new power wheelchair I'm configuring for my wife. It's a Permobil F3 we're ording from Numotion. My main concerns are really the backrest and joystick type. Backrest Type: There's two backrests: "Corpus Ergo Back (C3GERGBCA)" and the "Solid Corpus Ergo Back"...