Where does the time?
For not doing anything the days sure seem filled.
Let's see day usually starts around 7 with a few lifts and turns I'm transferred into my day time spot ready to start my 12-14 hr job I have as a PALS ,you know the one I mean as home security guard making sure no one steals the television. Before I know it, its time for the daily briefing ( the morning news) then the morning meetings start you know the ones I mean 9am it's with Regis and Kelly,10am it's Ellen D.,11am it's the ageless Bob B.and some how with all these meetings I have to squeeze in some time for the home worker to spruce me up making me handsome for the day
.
After a busy morning like that I usually need a bit of recovery time (a nap) so with the soothing sounds of the tube feeding machine and bi-pap machine buzzing I get some rest ready for the afternoon shift. Thanks to the satellite meetings with Oprah comes at 1 or 2 depending on is recovery time running over time, a little mind work with Alex T.and Vanna W. and before I know it school is out and it seems like half the school is running around my house and apparently children can't hear my speech device (the dynamyte) either that or kids just don't listen these days lol either way it's wasted energy so I try to stay low key during wild time.
After a bit of family time and online fun and since there is no NHL I must become a primetime crime fighter ,thanks to all the csi's ,law&orders, nypd blues I get to solve 2 or 3 murders every night. Of course we can't forget to come back to reality for a bit when I try to pick The Appreciate trying to be the soul Survivor during The Amazing Race back to the Big Brother house to do an Extreme Make-over all before my nightly joy ride on the ceiling lift into bed to finish my day with the nightly briefing(news)and falling asleep listening to buddies David L.or Jay L.
Pretty exciting days I don't know how I had time to do all the things I use to do.
Ok seriously its not exciting but it does keep the mind busy to a point and after dealing with ALS for 4 yrs now I've found one of the problems is not occupying the mind, because for me if I'm just sitting that's when depression,frustration and other not so helpful thoughts arise. No I'm trying to deny this I've accepted what is happening to me and what is to come but dwelling on it isn't the best thing either so since I can't look forward to the weekend golfing with the buddies it's looking forward to things like new movie release Tuesdays and spending time online talking to friends, e-mailing and reading all the stuff here which helps even thou I don't write much but I imagine it's the same for other PALS and CALS reading what others are posting is lots more helpful than reading articles so I'm glad people are posting here.
Yes I still get out once in a while like I made it to the ALS symposium a few weeks ago, it was a lot of work but well worth it meeting others dealing with this and if anyone I met there reads this (HI)
Anyway I better stop this novel just thought I'd share a bit of a life of 1 PALS and maybe a different look at the day .
For not doing anything the days sure seem filled.
Let's see day usually starts around 7 with a few lifts and turns I'm transferred into my day time spot ready to start my 12-14 hr job I have as a PALS ,you know the one I mean as home security guard making sure no one steals the television. Before I know it, its time for the daily briefing ( the morning news) then the morning meetings start you know the ones I mean 9am it's with Regis and Kelly,10am it's Ellen D.,11am it's the ageless Bob B.and some how with all these meetings I have to squeeze in some time for the home worker to spruce me up making me handsome for the day

After a busy morning like that I usually need a bit of recovery time (a nap) so with the soothing sounds of the tube feeding machine and bi-pap machine buzzing I get some rest ready for the afternoon shift. Thanks to the satellite meetings with Oprah comes at 1 or 2 depending on is recovery time running over time, a little mind work with Alex T.and Vanna W. and before I know it school is out and it seems like half the school is running around my house and apparently children can't hear my speech device (the dynamyte) either that or kids just don't listen these days lol either way it's wasted energy so I try to stay low key during wild time.
After a bit of family time and online fun and since there is no NHL I must become a primetime crime fighter ,thanks to all the csi's ,law&orders, nypd blues I get to solve 2 or 3 murders every night. Of course we can't forget to come back to reality for a bit when I try to pick The Appreciate trying to be the soul Survivor during The Amazing Race back to the Big Brother house to do an Extreme Make-over all before my nightly joy ride on the ceiling lift into bed to finish my day with the nightly briefing(news)and falling asleep listening to buddies David L.or Jay L.
Pretty exciting days I don't know how I had time to do all the things I use to do.
Ok seriously its not exciting but it does keep the mind busy to a point and after dealing with ALS for 4 yrs now I've found one of the problems is not occupying the mind, because for me if I'm just sitting that's when depression,frustration and other not so helpful thoughts arise. No I'm trying to deny this I've accepted what is happening to me and what is to come but dwelling on it isn't the best thing either so since I can't look forward to the weekend golfing with the buddies it's looking forward to things like new movie release Tuesdays and spending time online talking to friends, e-mailing and reading all the stuff here which helps even thou I don't write much but I imagine it's the same for other PALS and CALS reading what others are posting is lots more helpful than reading articles so I'm glad people are posting here.
Yes I still get out once in a while like I made it to the ALS symposium a few weeks ago, it was a lot of work but well worth it meeting others dealing with this and if anyone I met there reads this (HI)
Anyway I better stop this novel just thought I'd share a bit of a life of 1 PALS and maybe a different look at the day .