does anyone maintain a daily schedule?

[Schmutz]

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!

 

[vickim]

I have been taking mestonin 60mg 3 times a day. It was originally for mysthenia gravis but found it works for for mito. Maybe it would work for you. I know how hard the fatigue can be.

 

[AKmom]

I have struggled 20+ years with this and outside of recommending B12 daily and prioritize each day to accomplish one thing at a time, with rests in between. The only other thing I can say is don't go back to bed during the day. Instead, rest on the couch or recliner. That way you might not sleep so deep. Are you sleeping through the night ok?I have a hard time sleeping solid through the night. It might have to do with my bed as it is not comfortable and I am in a lot of pain. I guess it all goes with the territory.

 

[grahamalex61]

When I was caring for my partner, Michel, we stuck to a routine. We found that if we stayed home, he would tend to go back to bed and sleep off and on. However, if we went out, he could keep going for hours. Hence, we went out nearly everyday. He just needed to be doing something. Boredom really made him so tired!

Also, he found that when he stopped taking Rilutek, not only did his vertigo disappear within 24 hours (and never return) but the fatigue was greatly reduced. I am not saying to stop taking Rilutek, but in the end he was glad he did and actually regretted ever taking it.

Michel also took Brufen three times a day, and found this helped him. His neurologist and GP thought he needed it for pain, but this wasn't the case. He felt it assisted his energy if he did.

In terms of exercise, it is a tricky balance. The whole point is to only go so far as to not exhaust the muscle, otherwise it cannot repair itself at all. It's a difficult balance. We also started hydrotheraphy in the last few months of his life, which he found quite beneficial.

I hope this helps? Graham

 

[Schmutz]

Thanks for the advice! I need to take the "one thing a day" advice although I hate feeling reduced to that. I'll also talk to the doc about the drugs. B12 I can do on my own.

This is becoming more and more depressing. Mother always said "be careful what you wish for" and for a long time I wished for a diagnosis. Now I feel more helpless because I know what the future holds and that there's very little I can do about it.

I realize that after dealing with this for 11 years this sounds really naive. I've just been really good at keeping my rose colored glasses well polished.

Thanks again

 

[olly]

I agree,try to be as active as you can and get plenty of fresh air.
Being inactive or stuck indoors can make you fatigued.
Fatigue was a major problem for me in the early years but now i have evened out to a continuous slow pace so dont notice as much.

 

[Tokahfang]

I'll third the "one thing a day" strategy, especially if the modafanils don't work for you. It stinks, but it is what we've got.