CALS Roll Call Continued

[Mary2]

Pal's birthday went well. Our son and DIL were here 24 hours. PALS grew sleepy this afternoon which is unusual. Usually I am the nap taker. We zoomed with his family. I had to leave the zoom for a few minutes and go in the other room and shed a few tears. I hate to go to bed because then his birthday will be over. I have started reading the past care giver threads in more detail. It seems year 2 is more difficult than year 1. I can see this because I have a bucket list of things I want to do for year 1....go to the ocean is #1 and volunteer at an animal shelter is #2 but beyond that I have no idea. Concentrate on the 4 G's maybe....God, gym, garden and grandchildren. I really don't know.

 

[affected]

So glad the birthday went well, even if there are hard moments involved.
Don't think about the other side, live every moment in this time you have him. The rest will unfold its own way and you can deal with it then.

 

[rmt]

Mary, I'm glad the birthday was good. Try not to think too much about what you will do "after". Just try to be there for the now. Yes, I know, that is impossible to do! So no matter what, always remember that you are doing your best and you are doing amazing.

 

[Tomswife]

Affected. Yes. I am going through the same towel process. Funny.

 

[MJT]

Late Happy Birthday to your husband, Mary2. Milestones can be rough.

 

[Tomswife]

Mary. Glad PALS birthday went well. Milestones are wonderful and emotional. Bittersweet with ALS.

 

[ThatsAmore]

New towels and rearranging furniture is what we have going on too. The idea of hospice has taken some processing but it seems like the right thing at this time. I think they will be a good support for our current situation. It’s a bit of a whirlwind at the moment as supplies and visitors are coming in this first week. Hospital bed coming this afternoon.

Time is such a strange thing these days as I try to keep up with all the things, the changes that are happening and what they mean. I will also try and stay in the now.

 

[affected]

ThatsAmore it is a real balancing act to keep an eye on what is needed and just be with our PALS.
I hope you find hospice helps you to do that by doing a lot of the practical stuff.

 

[Mary2]

Well GA won the football game! And now we will move on to opera. I am good for about 2 hours of opera but my PALS can sit through 3 or 4 hours of opera The Met is apparently showing one we can get on the tv.

My weight is really climbing from all this staying in the house! I will have to get a grip and do something about it. I don't eat but I do drink soda and this must stop.

I am waiting for the cardiologist's nurse to call me back about Pals Afib and we have a case co-ordinator at Amylx now...not sure we will go on Relyvrio but going through the steps of looking into it.

 

[affected]

CALS often report putting on weight. I know I did! I hope you can find a healthier replacement for the soda and maybe a way you can exercise inside. Can you watch an hour of opera, then go to another room and do some exercises maybe? Or get one of those step devices and watch part of the opera while doing that?

 

[MJT]

Mary, we ate very "clean" pre-ALS; a piece of fish, rice, and steamed broccoli. Yesterday was my birthday, and various friends brought mac and cheese, stuffed baked potatoes, spanakopita, red curry noodles, four cupcakes, and a cake! Your TV-watching range (football-opera) makes me happy.

 

[Mary2]

Happy Birthday MJT! To start the New Year I joined Noom and a streaming service called Daily Burn.
If I don't lose...maybe I can at least hold my weight steady! It was good of your friends to think of you!

 

[affected]

Happy Birthday MJT.

Mary that Daily Burn sounds great!

 

[Tomswife]

Happy birthday mjt.

 

[MJT]

Mary, Noom was one of the best things I ever did for myself. I didn't think there was anything left to learn about weight loss. Best of luck!