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Also ( I am the sister ) we newly have the atropine drops.. That helped a bit but this Jo Sleep thing is really taking a toll ...

Thank you Nikki .. i was trying to figure out how to private message you and couldn't.. i knew you woudl know if anyone would... Thanks Janelle... I have always considered myself a great handler of stress. but this time not so much ... this disease is just horrible ( hugs to you both)

I have hesitated even posting this (yes i read the stickie).. My mom was diagnosed in February - age 58 bulbar onset with FTD.. since her diagnosis i have had the twitches all over every day .. mostly though in my upper arms and calves.. my calves and legs are now tight and sore (no exercise) my...

so sorry i havnt updated here lately..,moms procedure went good.. a little over 2 weeks now.. i woudl like to say the who experience was good but it wasnt.. they sent her home same day with zero supplies and us with zero knowledge of how this all was supposed to work.. THANK THE LORD FOR THE...

(raising my hand).. here and dont want to have to be:( but cant think of another place to be among people who know what we are going thru.. i know some of my first posts were kinda just thrown out there after going thru obstacle after obstacle.. STILL going thur them..but you guys have been...

I hope I added it correctly tillie:)..... I am trying so much to cherish every moment just like with my grandmother ...

Helping my mom with a bath tonight my heart I think literally broke :( it shouldn't be this way.. We had so many years of taking care of my grandmother together that this is supposed to be our time !me and my mom...but instead als came along ... I am so angry and so sad but would not give up a...

Ha ha Greg :) I am searching now:) thank you all for your replies .. I feel better knowing I am not in this boat alone :)

Mom Started this two weeks ago and said it makes her feel spaced out and weird .. So she stopped it :( dr said quality of life she had left meant more

Mom has always had bad allergies ( seasonal mostly ragweed) she had a lot of trouble breathing last night ( still no bi pap :( uggg but I am thinking allergies and the excess mucus ... She had taken Zyrtec in the past but last spring said it almost felt like she would stop breathing in the night...