CALS Roll Call Continued

[rmt]

V and Tillie, it is so nice to have people here who understand. My husband can still write, and use a tablet to speak for him, so that helps keep us connected. But I really miss chatting in bed. He also will sometimes have laryngospasms when he laughs, which is so hard. We laugh a lot and now when he starts to laugh, my stomach clenches. But we find each other hilarious, so it is hard to keep him from laughing. I'm happy that we haven't lost our sense of humor and fun (I just hope it doesn't kill him eventually!).

Robin

 

[affected]

yep we were well known for not getting enough sleep because we would just talk and talk in bed late into the night too.
my Chris also had FTD, so he never managed to learn to use text to speech well, then lost his hands and just could not cope with the effort it takes to learn to operate technology with your eyes for anything complex. he could put music on and choose songs and simple things, but so quickly we were reduced to such simple communication both through the speech and his inability to follow anything complex.
so you can definitely vent here and be understood, it is heartbreaking. I love that you can find ways to keep humour going and still find ways to have fun, so important!

 

[JimInVA]

Darcey and I often talked about how her ALS presented itself... happening first in her limbs rather than a bulbar progression. Though frustrating to lose the ability to do much of anything so early on, she appreciated being able to communicate verbally up until nearly the end of her ALS journey. I also appreciated her ability to communicate for so long. Yet because of my participation, here, I also became aware of the fact that many of those with bulbar onset felt glad that they could still do most other things for some time. I guess, in the end, it doesn't matter how ALS presents itself. Instead, it becomes a matter of how we each learn to appreciate what ALS has not yet taken from us at any particular point in time.

My best...

Jim

 

[affected]

Jim I think a lot of it is connected with what you feel makes you the person you are. If that goes first, for example someone very active, an athlete or sports person might find losing legs first more cruel.
But you are so right, if we can learn to accept what is, appreciate all we have on any given day, we cope with any progression order better.
It is still hard to explain to others what the loss of true communication is like for the CALS to feel isolated. I always loved how well you and Darcey could keep that communication going on a deep level right through

This is one of the best things about this forum too - we have such a breadth of experiences that there is always someone who can say - oh yeah I totally get that! Just being heard and understood is a huge thing, I know it was for me.

 

[vltsra]

I missed posting yesterday, with the caregiver here I was able to get out for a long ride. Unfortunately it tires me out more as I'm not able to keep up with my cycling the way I used to.

Tillie, I agree, one of the things that has been hardest on my PALS is the inability to do the physical things he loved so much - surfing, playing pickleball or racquetball, and hiking. He's been wheelchair bound for more than a year now, and on NIV for over 2.

There are times when I don't know if I can go on for many more years. My caregiver told me the other day that he is still "strong" in her mind, and he seems to be on a plateau. I've been a CALS for 5 1/2 years now. The first 3 years were not bad but now it is very difficult. He can't be left alone. It's funny, now that things are starting to open up my friends are talking about going places and doing things, and we're still isolated here at home.

Another worry - my PALS' dear friend, the only person who has really stepped up and helped, now has health problems of his own. He may possibly have a tumor in his head (thus far the growth is outside his skull), and he has been having various strange symptoms that indicate it could be affecting his brain. After all he's done for us I wish there were more I could do for him.

V

 

[affected]

I'm glad you posted V. We may not be able to fix things, but we sure get how you are feeling.
It is cruel how this disease picks at the mind as we helplessly just watch it do whatever it damn well feels like - fast, slow or plateau.
I think the more often you can get out and cycle, even if you do more shorter rides, the better your resilience on all fronts.
I'm so sorry about his friend battling he own health issues. I hope they can at least spend time together, that might help them both, just being together?

 

[vltsra]

Thanks Tillie, we ended up having a good day yesterday. I'm trying to get my PALS out every Thursday afternoon after the caregiver leaves. Yesterday he wanted to go down to Ocean Beach. While the pier was closed, the beach was full of activity (I forgot it was spring break!) He nodded and smiled at people through his bipap mask, and while he got quite a few stares he also got quite a few "hellos". When we got home he told me he felt his quality of life was still good, and he felt normal even though he is so disabled. It made me feel so happy.

V

 

[affected]

When we got home he told me he felt his quality of life was still good, and he felt normal even though he is so disabled.

That is so precious, I hope you can be lifted by this for days, even weeks to come!

 

[vltsra]

Starting to feel like the CALS Roll Call is my own person thread. I really hope other CALS will check in.

This week my PALS has had more difficulty eating. We've started more tube feeds and less mouth feeds. He has needed the cough assist more. He says he still wants to enjoy food but agrees that we need to reduce his mouth feedings.

His lovely friend came with us on our outing to the beach. My PALS seems more tired than last week, he was less enthusiastic. I'm thankful for his friend.

This weekend is my PALS' 67th birthday. I plan to have the 2 surf buddies over and a small bit of cake and ice cream. Perhaps he can have the ice cream. I just want to make it a happy day for him.

V

 

[affected]

Hi V - if he wants to taste the cake you can put it through a blender with the ice cream, or with some cream. If you just do a small amount you can still even put a scoop of ice cream beside it.
Don't worry about this being 'your thread' just now, go with it.

My Chris would often just eat small amounts of puree, or thickened coffee drinks, more for the taste than anything. It can really help digestion of the peg feeds to have a small amount of what he enjoys first, then give the peg feed as the digestive process is up and going by the process of doing some swallowing.

It's hard isn't it though to watch the energy slowly going downwards. Eating can even take a lot of energy, so giving more meals by peg can be a good thing for allowing him to use what energy he has for things you can both enjoy.

I hope the birthday time with friends is beautiful.

 

[rmt]

My husband has been so much happier the last couple weeks. Our interactions feel so much more like they used to and it feels so nice.

And then yesterday he was in a totally pissy mood! He was distracted, totally unengaged and wouldn't even answer or communicate with me unless he needed my help with something (not basic needs, but things like how to make a copy using our printer). It is so frustrating to ask him a question, have him look at me, shrug and walk away! I felt myself getting so tense and upset, which is how I've often felt for the last year or so, up until recently when things have been better. Since my husband is still self-sufficient and doesn't really need my help for anything other than phone calls, I decided to take control of the situation and went to bed! He finally came to bed several hours later.

This morning, he was back to his newly chipper self. He didn't exactly apologize, but he did say how he was really irritable yesterday because he had a bunch of things he wanted to get done and was focused on them and stressed. So he stayed up late getting them done and feels better. I guess next time he is having a "bad day", I think I'll sit him down and try to get him to tell me what he's stressing about. At least that way, maybe I can help him instead of just feeling upset.

Robin

 

[affected]

Great that you just went to bed and let yourself rest (well I hope you rested, not laid in bed stressing).
It's a good thing learned for you both maybe - if he is irritable, leave him be for a bit, then find a moment maybe with a cuppa or over lunch or something and ask him if anything in particular is up.
If he doesn't engage - go do something that is good for you and let him figure his own internals out might then work better for you both.
It's all trial and error tho isn't it

 

[rmt]

Tillie, that is exactly my plan! It was a good reminder that everybody has a bad day now and then. And as long as we both keep having more good days than bad days, I guess that's all anybody can ask for.

 

[vltsra]

Dear Robin, good to hear from you here. I can't tell you how often I have felt upset during this journey because my PALS was irritable or off. You are right, and even when the bad days outnumber the good there are still those good days.

 

[rmt]

This week has been pretty good. The weather is sunny and warmer, which feels so good after what felt like the longest winter ever. Today is the one year anniversary of when we adopted our wonderful dog. I can't believe it has been a year! He is a great dog and has been such a fun and happy addition to our family. I'm trying not to think too much about the change in function of my husband from the day we brought the dog home. His progression is slow and I'm very grateful for that, but it still sucks to think about the changes. And I'm trying not to worry about what things will look at in another year. It is so hard to prepare for possible changes, but not let the worry about those changes ruin the present. But today it is sunny and beautiful and I'm going to enjoy it to the fullest!

I love hearing from all of you. This thread has really helped me a lot.