I've tried to respond to you all several times, but I either end up being interrupted or I read what I've written and just delete it. Thank you all for the kind words, and especially glimpses into a PALS' perspective.
Matt encourages me to get away, and he's been very tolerant of the folks who fill in so that I can. Sometimes I have to force myself to go. Once I'm actually doing something, I'm ok. It's getting up and getting started that's difficult.
Today is better--I think because we both slept last night!! The doc sent Sinnemet for his tremors, and it seems to have helped him sleep.
There's another ALS bonus--some PALS get Parkinson's along with ALS. Great--shake until you stop. I sure hope it helps as eating is becoming very difficult for him. He uses one hand to stop the shaking in the other when spearing or scooping his food. Fingers crossed.... It works great for my mom, who has Parkinson's, so perhaps it will help here.
So, today we drove 2 hours to look at new vans (the next one will be a Toyota Sienna--I am ready to trade in this Honda)). We took Heidi, who is getting used to riding in the car or Van, and we found a nice resturant with seating outside for lunch. It was a perfect lunch--totally unexpected. So nice.
Tomorrow I am getting away. I'm driving a bit over two hours to see our rental house, which is between tenants, and make some choices about updates, and them I'll see my favorite chiropractor. The man is marvelous and I just know I'll feel better after seeing him.
Aussie--you are so right about trying to respond to what others expect. I'm done with that. It does not work.
Thomas, are you able to be alone, or do you have someone else who can stay with you? Is your wife able to get away? Matt has had to insist a couple of times, practically running me out of the house. What a gift it is to have PALS like the two of you.
Gilwest, I know that I need to focus some on my health. I haven't, and my neuropathy is starting to worry me. LOL...I should probably stop drinking, but I really do like that evening glass of wine or cocktail.
Steph, I have noticed that my focus has narrowed. Unfortunately, every now and then my superman starts fussing about things around the property that he used to take care of. I've told him that I can't do what he did and what I did and what ALS now requires of me. Sadly, I can't. The irony her is that he probably could have. He should be healthy and caring for me. He'd have gotten it all done and then some. I'm so glad that Julien is now enjoying happiness. I admire you so--this disease is robbing me of the opportunity to spend time with my grandchildren (they live hours away), but that's not as hard as dealing with it while raising your own child. You've done such a wonderful job with Julien that I'm sure he'll grown to be a very special man.
Scared (Deb? I have trouble tracking names) I know exactly what you mean. I realize that the lack of joy during joyful times is depression. Our oldest daughter thinks that since I realize it I should just decide not let things bother me. Personally, I think that if I reach a point when nothing bothers me that I'll be in real trouble
Peter, I know that you are right, and I try to show him my appreciation for everything he does for me and for the things in our life that do or should bring joy. Thanks to all your sharing here, I know that I need to make the effort to let him see me smile. I'm not sure I always fool him
. Seriously, his smile brings me more joy than anything else in our lives right now. I hope you smile for your wife. She loves you, and like you, all she wants is for you to have some joy and peace.
Tillie, I'll take the hug. Always. Your are our rock. Sister-in-Pain--I've graduated
. I try not to dwell on ALS and just life the life we have, but, well, you know.
Laurie, as always, sound analysis. Don't the triglycerides put him at risk for heart attack? I'm out of my depth here. I just want to keep him mobile when he's not sleeping and OUT of hospitals. I know that his monster will get him at some point--my goal is to prevent as many complications as possible (as much for myself as for him). I had to think a couple of days about the idea of dismissing things that don't make him uncomfortable. I guess I'm still looking longer term. Hope. Yes, it changes, but it just won't go away. Sometimes I wish it would. I'm babbling now, but I wanted you to know that I understand and appreciate what you are saying.
Joan, I seldom make it upstairs either. I now just tell the kids when they visit that they can dust up there if they like. This is a big house and there's a lot of stuff in it. Unfortunately, when I let it get dirty I feel even worse. Matt keeps telling me to hire someone to clean it. I think by the end of the year that I will. I hate bringing anyone else in, but I'm more relaxed when it's clean. The grandkids...we will both need to make up time with them at some point.
Hey, I've written a book. It's been awhile. Withdrawl--another sign of depression. I've got to re-engage... thank you all for being here. I love you all.
Becky