Schmutz
Active member
- Joined
- Apr 6, 2013
- Messages
- 72
- Reason
- DX UMND/PLS
- Diagnosis
- 06/2012
- Country
- US
- State
- NY
- City
- Rochester
I was diagnosed with PLS about a month age - after 11 years of seeing neuros up and down the east coast with no diagnosis. Now I realize physical therapy is my only chance of slowing the progression down. I tried provigil,nuvigil, amantadine , recently baclofen and am allergic or non-responsive to everything.
Anyway, my question is, if you suffer from the extreme sleepiness and general fatigue that bothers me, have you established a schedule of some kind to make sure you don't sleep your life away? I feel that I have to do this, but I don't know how! Today I should have been at pt at 2:30 pm but I had gone back to bed after breakfast, fully meaning to get up and go, but slept until 3:00pm.
This past week I discovered that a nearby high school leaves its track open for the use of the community on weekends so I walked the track - the whole trace (1\4 of a mile) with my husband by my side to help if I fell - but then I was completely exhausted.
I've had to quit my job as a fund raiser for a local human services agency (food pantry, soup kitchen, kids clothes closet..., I loved that job) because I was just too tired after lunch to be of much help. Lots has happened, or stopped happening, over the past 11 years but I've managed to stay positive and they were good years. But now I feel like I've completely lost all my steam and don't know what to do. Thanks for listening and any bits of help would be greatly appreciated!
Anyway, my question is, if you suffer from the extreme sleepiness and general fatigue that bothers me, have you established a schedule of some kind to make sure you don't sleep your life away? I feel that I have to do this, but I don't know how! Today I should have been at pt at 2:30 pm but I had gone back to bed after breakfast, fully meaning to get up and go, but slept until 3:00pm.
This past week I discovered that a nearby high school leaves its track open for the use of the community on weekends so I walked the track - the whole trace (1\4 of a mile) with my husband by my side to help if I fell - but then I was completely exhausted.
I've had to quit my job as a fund raiser for a local human services agency (food pantry, soup kitchen, kids clothes closet..., I loved that job) because I was just too tired after lunch to be of much help. Lots has happened, or stopped happening, over the past 11 years but I've managed to stay positive and they were good years. But now I feel like I've completely lost all my steam and don't know what to do. Thanks for listening and any bits of help would be greatly appreciated!