What is your typical day like?

[calypso45]

I probably have an unrealistic expectation of what I should get done in a day. So what does a person with PLS/UMN disease accomplish in a typical day? Just curious!

Calypso

 

[HelenL]

It depends on where you are in the progression. I 'm still working part time on the computer 2 1/2 years after my diagnosed. I work at home. I can 't do any housework anymore... and hands are going. I know a PALS who goes out almost every day with his pca, and he 's fully paralyzed from the neck down. Guys like him keep me going!

 

[jamiem]

I can't speak or eat, but I get up and work at our family funeral home everyday. No mobility problems yet. Just always choking, difficulty breathing and speaking.

 

[LouLou]

After 1.5 yrs. since being diagnosed, I still manage a long day. I get up at 4:40 a.m. so I can get to work by 7:30 a.m. I just stepped down to a less stress job at work a month ago and that helps alot. My hands are giving me problems now so I may have to go in for a nerve conduction study to determine if it is PLS related or carpal tunnel stuff. Once I am home from work, I watch the news, eat dinner, shower and off to bed by 8:00 p.m. or earlier. I have given up on housework. On weekends I get groceries and do laundry and take lots of naps. I love to stay home on weekends and not have a set time to be anywhere. My husband is a big help but need to get my 24 yr. old son to start helping out more. One thing I really miss is having the energy I used to have...the vitality... and being able to move faster and without a cane. I try to do what I can, and if it's too hard, I don't push myself. Good luck to you. LouLou

 

[Tokahfang]

I'm a a weird mix of HSP and PLS, so not a good benchmark - your mileage WILL vary, heh.

17 years in, I approach each day like this: I commit to doing one big thing, that is the thing I'm definitely going to get done today. It could be a shower, a trip outside the house, having guests, doing a chore, etc. If something is two big it gets two days, one to do it and one to recover from doing it. If I still have any ability left in me after doing my one big thing I'll look for smaller things to do and go with the flow of my body. Some days the weather is great, I woke up on the right side of the bed that morning, and I do TWO big things.

We've gotten a new dog recently, and I've added a long powerchair "run" for her to my day, where we bust around the complex at max speed so she can wear herself out and smell interesting things.

After I've run through my resources I keep my mind alive with strategic video games, practicing my braille reading, reading thoughtful literature, etc. And when I just can't do that anymore.... there's netflix and it's endless stream of TV shows I've never seen.

 

[AKmom]

Going on about 20 years. I have always pushed myself to the point of injuring myself 75% of the time. However, now I have slowed down significantly. I use a pwc 95% of the day. I started my own homebased business a little over a year ago. It requires me to travel a lot, so I manage to rate different places for true accessability and then blog about it.

Housework is left for the rest of the family. I tire out more quickly now, so I prefer to focus my day on accomplishing things that I feel will make a difference in other peoples lives. It's all I can do.