Sunday Thoughts

Random thought: I miss normal. I miss when ALS did not live in our every waking moment in one way or another, and some of our sleeping ones too. I had an odd little dream the other night that Brian was being super nasty and I was really confused until I started getting really mad and then in the dream he looks at me and says "What the hell happened?" I replied "Damned if I know". I woke up when we screamed together in the dream.

Then, well after a dream like that you get up and do your day and it's just what you do. I've said this before, you live with it and it lives with you and it is what it is, each day. My gratitude for the people in our lives is boundless. You know who you are. I will never stop saying thanks for hanging in with us.

Brian and I had a great trip up North and plan to do another in September. It is sooo nice to be in a summer now, no funky weather worries. We have learned to be proactive about any items that are helpful. The four prong cane, the walker for longer distances. Brian still drives short distances with the Drs blessing. We are looking into trying the new drug, Radicava when it becomes available.

It's not all bad by any means but "normal" as we knew it is done because ALS is... here. Always. So I miss normal. I do appreciate what we still have.

An odd thing that brought me more relief than I anticipated was letting go recently of an unhealthy friendship. It was not easy, but it was not motivated by anger, either. More just an understanding, after about 12 years that this thing had not been on right for a long while and it was time to say so. One thing that living with ALS gives you is some clarity about what matters, what does not, and what works for you. Were it not for Brian's condition, I am sure I would still be pretending I mattered to this person as something other than an ego boost. Bad habits die hard. Anyway, it feels freeing to let go of a toxic thing.

Last thought is love is amazing. It can make you happy just to be in your living room looking out the window together. That's us. Lucky me.

Comments

Post a Comment

Popular posts from this blog

Life and Friends

Last Sunday we went to the Vikings game. That was pretty cool and also a little emotional. Brian's dad was a huge football fan who had season tickets all the time. Brian, his dad and his brother were all always big Vikings fans. Brian talked about going to the old Met Stadium for the first time as a kid and here he was in this big beautiful new shiny thing. Yes, I laughed they sure gave us one hellava stadium for all those tax dollars spent. I loved it too though, the place is amazing, the game was a Vikings mega victory, the fans were so much fun too. Brian said something, just one thing that day that reminded me of our situation: "I am glad I lived to see this". I teared up a little but quickly sucked it back up. I can't "hang the crepe" now. Stay in the moment, it's the only place any of us really live. Besides, we don't know if we will be seeing games for years to come, or not. We truly do not know that and never did. You can't fight much ab...
Read more

Clinic - Progress Report

We went to the ALS clinic on Thursday. Brian has good lung capacity with no significant decline. It was 96% last visit, now six weeks later at 95%. There is little to no progression of the weakness in muscles at this time. Brian does complain of tiring more easily, but other than that pretty much where he was six weeks ago. The Doctor states that his progression thus far is slow/average and that he thinks Brian will be on his feet for a "long" time (that is long in ALS time, which mean may just maybe one year plus of walking). We went over some safety things, like getting a bath chair for those time he has done a little too much and might feel wobbly in the shower. So that's good. He is also going to modify his exercise routine and get more into something called adaptive yoga. Cool. It was all good news, good for ALS. It was also for both of us a tough 3 hours. W did spend that long talking to nurses and PT and OT and folks from the ALS and MDA Societies. Dr. Walk and ...
Read more

Six Months Out

So here we are six months post diagnosis. Life continues. We have great days, lousy days, medium days. Then again, didn't we always have those, just in a different way. Work is super busy, but I think I am managing it much better. I am going to be dead bang honest and say I am SO glad the holidays are done. I felt better on January 2nd than I had in awhile. Holidays are like that, you sit and compare one year to the next, you think of future years and what they might look like. It is a more difficult time to just be in the present. Brian is now doing pool therapy, adaptive yoga therapy. He still does way more around the house than he should probably do but I give my opinion and leave him to be who he is. I encourage him to pace his activity, eat more, etc and I think he usually does pretty well with the self care. I also think it is pretty important that I NOT become a den Mommy. There is a acronym you will hear in the ALS Community, being a "CALS", that is a Caregive...
Read more