I’m at my wits end here. PALS has almost no functional movement aside from head/upper torso and a few fingers. He uses his bipap about 20hrs a day. He can be left alone for an hour or so if he’s reading a book on his computer but he can’t move his hands so he’s stuck there if I’m not home...
The Million Word Gap
Parents who take time to read aloud to their children are doing them a huge favor. Not only is it a memorable bonding activity, but it's also a way to jump-start a child's education and put them on the fast track to literacy. Many parents and caretakers know this...
Hello
I have been experiencing body wide twitching noticable since December. It seems to be getting worse since then. l am also experiencing weakness in my arms and legs worse after any activity even if it just something simple as getting dressed. I am somewhat worried. I have been...
I haven't posted in a while so I wanted to update.
One of the main reasons I haven't been on here is... I'm writing a book!
Or trying to. It has nothing to do with ALS or anything autobiographical. It's a scifi/fantasy romance. I've long been an avid fantasy reader, and always had stories of...
First, I want to say that I have been to this community off and on for the past week or so and have seen how incredibe you PALS and CALS really are. Thank you for doing something you certainly don’t have to do. This greatly helps people like me looking for some possible insight into their...
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Hi all,
I’ve been lurking here on and off for a little over a year and have even caved and posted a few threads. I just had my third clean EMG in 12 months. There was a point shortly after the onset of my symptoms where I was convinced I had ALS. I would come home from work and basically take...
Hi all,
I’m writing a book on living with ALS. I’m curious if countries besides the US and Canada have a similar clinic set-up to what we have. We have “ALS clinics” which are held approximately every 3 months and are staffed by the attending neurologist and a team of therapists who all see...
FTD was my greatest fear early on. Then I thought we'd escaped it.
Now...not so sure.
Memory loss...cognitive impairment (slow processing)_ and now full blow hallucinations and bad behavior. I've been told at least once to find someplace else to live.
Im not taking the mean remarks...
Hi everyone, firstly thank you for accepting me in to the forum. I am here to learn a bit more about ALS and to be able to talk to others that are or have gone through this process as it feels such a lonely place to be sometimes.
It all started back in May/June 2017 with my partner, who was...
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New cars… (For those bored... something to read.) :-)
Fifteen, twenty and 30 years ago when I bought a newer
or a brand new car after I signed the paper work and got the keys…
I’d get in the car I just bought, happy with my purchase.
I’d reach under the front of the seat and adjust the seat...