CALS Roll Call Continued

[rmt]

@lgelb, that is great advice! We actually had a really good talk today and both agree to work hard to embrace every day as much as possible. We acknowledged that neither of us can fully understand what the other is going through, but that everything will be better if we can prioritize enjoying life and supporting each other. I'm optimistic. I don't want to look back and think, "boy we should have spent more time being happy just being together".

It is so hard knowing that each day is probably the most functional day he'll have, but we are holding on to the hope the new therapies will come out in time for him. Thank you so much for the advice. It is easy to get so caught up in the worst parts.

 

[lgelb]

V, I'm sorry your husband is still on the supplement bandwagon, and that others are enabling his "dogmatic slumber." That sounds really frustrating.

Let me know if you need help with the BiPAP settings.

 

[vltsra]

Thanks Laurie, supplements have been a lifelong passion. His latest YouTube purchase is the laser hair regeneration cap which I put on his head every other day for 30 minutes. At this point I'm just trying to keep him happy.

V

 

[JimInVA]

V - I just did a google search for "laser hair regeneration cap". My respect for you as a CALS has just gone through the roof!

My best...

Jim

 

[Jrzygrl]

Hi V! Sorry your DH is still chasing cures. My husband did the same for a time, although he finally did relent. And I also have a $6000 "Bemer" boxed up in my garage that was supposed to help. I hate that people are out there offering false hopes to terminally ill people. I hope Karma is a thing.

The emotional toll is incredible! I was in a similar situation, with help 2x a week, totalling 12 hours. Even though my DH has been gone a year and a half, I think I still have recovering to do. I think often of my fellow CALS who walked this hell with me. Sending big hugs.

 

[vltsra]

Hi Jrzy, good to see you here. I remember you talking about the flipping "Bemer". I'm lucky my PALS tried it and decided not to spend the $6,000.

Hugs back your way.

V

 

[affected]

It's so good to see this thread up again! I can't remember how long ago I started it, years! I remember one day it reached some maximum posts our old forum had, and David grabbed the last random post and started a new thread for us which is why it says 'continued'.
It is a great place for CALS only to just rant it out. I have a vague memory of the Bemer but it made me shudder and try to forget again
I totally agree with Jim, my respect on that laser cap has put V right up there the top heroes
May we all find times of laughter together as we navigate this land together.

 

[vltsra]

It's Wednesday, so I'm checking in. Hope some of the other CALS will check in too. We are hanging in there, although my PALS is becoming ever weaker. He used to be able to move his right hand/arm but now needs my assistance. I worry that he won't be able to operate his power chair by himself much longer. His speech is very affected now, we have a tablet that he uses but he sometimes just becomes tired from that as well.

His friend is over this morning, wanting to observe what we do so he can fill in in case something happens to me. I can't thank him enough and feel so touched that he has offered to do this out of his love for my PALS. He was a bit shocked at all of the things we have to do; I suppose if you haven't been caregiving you have no idea. To me now it seems second nature. I doubt that he will ever have to do these duties, but then again, I was in a bad car accident in 2019 when a woman ran a stop sign and totaled my car, so you never know.

I am scheduled to get my 2nd COVID vaccine today...that means everyone in our household (my PALS, our caregiver, and me) will have the full course. Gives me peace of mind.

Hope everyone is doing OK

V

 

[JimInVA]

V,

I'm glad to hear that you've all gotten vaccines. I get my 2nd dose next Wednesday. I remember Darcey losing the ability to use her arms and hands. For her, it was less about the fact that she couldn't "drive", but the fact that she couldn't use her mouse to control the computer. For her, the computer was everything. She still had the ability to interact with her computer by voice... so her world continued to remain open. As her voice began to fail, she moved to the eyegaze. It was not a change that she enjoyed... but she tolerated it as the computer allowed her to continue to have a "presence" in the world around her... regardless of her condition at home. I can't begin to describe how important this was for her.

I'm glad to hear that someone else cares enough to want to "see" what goes on with daily tasks. And that he expresses an interest in filling in should you become unable to do so yourself. One of Darcey's dear friends would come once a month. She always wanted alone time with Darcey. One, she really wanted to feel that she was giving me a break and some time to myself. And, two... I think she wanted Darcey to understand, for herself, what that caring process was like and about. She was a good friend... and in the last year of Darcey's life, was the only "outside" person she cared to have come in.

I wish you, V... and all who come here, whether to share or to simply read... continued strength, love and the knowledge that your moments today will carry you well through life's tomorrows...

My best...

Jim

 

[affected]

V that friend is pure gold! I hope you can actually end up taking just a little respite with that friend learning to help out. This also has to be sustainable for you.

 

[rmt]

I got my vaccine first dose on Saturday. My husband got his vaccine doses in January/February, so I'm happy that I am able to get mine now too. We had his 3-month ALS clinic visit yesterday. It is online, so at least we don't have to go anywhere, but it is always so exhausting. His speech is gone, so I have to do all the talking. I'm not sure why I feel the need to be positive and happy for it, but I'm always so spent by the end. Luckily the weather is so nice today, which is great. I'm definitely ready for spring to get here!

 

[Donnaelan18]

First time posting. We’re almost 5 years in. Trach with trilogy And feeding tube. Sold my husbands “play truck” today. Very hard thing. But I’ve been in the same boat. Keep and buy things that makes him happy

 

[vltsra]

Rmt and Donnaelan18 glad to see you here. I agree clinic visits are tiring. I try just to focus the visit on 1 or 2 things.

I understand how hard it was to sell the truck. My PALS has a 1976 sports car taking up the only parking space in the garage. It has not run for 24 years. He was in the garage the other day and while I was parking the van he sat there inspecting it and found a tiny scratch on the door. What I'm going to do with the sports car when he's gone I have no idea. He just can't part with it.

V

 

[vltsra]

I'll check in again to encourage other CALS to do the same.

My PALS' spirits have been low of late. For a long time he was in denial, and I think he's moving past that Kubler Ross stage and is now grieving. His dear friend brought over his "magic" hummingbird feed and set up a feeder outside the window and that has given him some joy, but he is still feeling down. I'm going to try and get him out of the house today.

As for me, I often seem to be stuck in the "anger" phase. I am easily angered at the equipment when it doesn't work right, or service people who give me a time window and then don't show up, or people who have disappeared. Can't help feeling angry with his sister, who lives 20 minutes away and hasn't been to see him in 14 months. I understand COVID but we have offered to do socially distant visits with her outside when the weather is nice to no avail. She says she is only going out for "necessities" which includes the salon but not her brother.

Anyway it's sunny but cool today, hopefully warm enough to get him outside somewhere in the van.

V

 

[rmt]

@vlstra, I hope you find a nice warm place outside today. I know both my CALS and I feel so much happier when we get outside in the sun. And I would be annoyed at your CALS sister too. It is so irritating when somebody prioritizes the salon but not family.

I'm stuck in the anger phase too. I feel like I'm always on the edge of losing it. But I've been working on that for the last couple months and think my fuse is a little longer now. But the smallest things really get to me and I have to work at it to stay calm.

I did a Zoom with my college friends last night and it was so fantastic! I haven't seen them in years, but it felt like not a day had gone by. Our reunion was supposed to be this summer, and obviously that is cancelled, but we all agree we need to do a get together when covid is better (that's going to happen eventually, right?).

We have had a couple days of nice weather over the last week and it was so wonderful to be outside and not be wet and freezing cold. We are really looking forward to the spring and summer. We got a camper van and are hoping to take some fun trips to visit family and friends once everybody is vaccinated. My husband is fully vaccinated and I had my first shot about 2 weeks ago, so by the middle of April we figure we can start to venture out. With masks on, and staying really far away from everybody, but at least we will be out!