I learned the about "sara Stedy" at ALS conference for care givers. A man stood up and complained that his clinic never mentioned this device, because it wasn't covered by medicare. I literally change my life and my caregivers back!
I have the same problem and I found a great solution its called a Sara Stedy. I got a cheaper version on Amazon for $500. Google the video. You need some arm strength.
What a great thread!
Ok my friends, How about all the mouth problems?
Jaw clenching, chattering teeth, biting toungue/ cheek daily? And oh the nightmare dental visits?
If I go out at night and it is cold, my jaw clenches so hard it is painful!
No one told me about that..........
The enhanced smell has some positives...I have a teenager and I can smell beer/liquor or weed from across the room. He thinks I have super powers!
LOL, you have to find humor where you can
Pete,
Based on your posts I believe you to be a good man and husband. The strains of this disease makes all of CAL and PALs alike into people we dont recognize at times. Cut yourself some slack. I am going to try the Remeron for the sake of my hubby and kids. I will report back if it helps. Good...
Kim, can I ask how long did you take it before you saw results? I keep starting taking it but i feel so foggy/drugged the next day I stop. I want to feel like you described. I am quite low right now.
Jocalyn
I would recommend earlier than later. It helps with all the hi calorie supplements that taste bad, meds etc. Maintaining weight is critical, peg helps with that. Surgery wasn't too bad, and once you get Mikey button. Its easy. I swim with tagderm bandaid.
Jocalyn
I am doing home infusions using a port. I have noticed increased fatigue and weakness. I have not been sick or any other. External issues. In addition, I have increased leg cramps during infusions. I am continuing the infusions for awhile to see if this passes. I am on day10 of first round...
Hello Gang,
I have really been struggling more than usual. I am weepy all of the time. I am taking Nuedexta. Those around me suggest I take an antidepressant. I am looking for recommendations on what is working for my other PALS. Prescription or otherwise...
Thanks,
Jocalyn