CALS Roll Call Continued

[lgelb]

It only takes a few seconds to change settings, though, and there are other reasons to change them, such as during coughing/choking. So not having two machines is not a big deal.

 

[vltsra]

Thanks all for the suggestions. We do have 2 machines; we also have 3 different settings but after trying them he just prefers the same setting (which makes it easier).

I talked with him about his position in bed and he tells me he just likes having his head elevated. He isn't really "sitting", it's more that his head is somewhat elevated. I tried lowering him and he could breathe OK with the bipap setting, but he just prefers his position. He told me he can see the hummingbirds and orioles better. I try not to rock the boat.

V

 

[JimInVA]

V,

As I mentioned earlier, Darcey sometimes liked to sleep with the head of her bed at a slight (10 - 25 degree) incline. And she did so without difficulty related to her alternating air mattress.

My best...

Jim

 

[rmt]

My husband got his initial long g-tube swapped for a Mic-key button tube on Monday. He is so happy to not have the floppy tube to deal with! It took until today for him to get comfortable hooking/unhooking the extension tube, but now he's got it mastered! We have a great system going now for his feedings and it is so fun to get to eat together again. We have so much enjoyable quality time together now. He is gaining weight, has so much more energy and is SO much happier. I really don't think he would have survived the summer without it, so needless to say, things are a lot better than before he got the tube! Even his language issues seem better, but I think it is just that he is more engaged and making more of an effort. Whatever, I'll take it!

This weekend I'm going to go to my parents' cabin where my brother and his family are visiting from Texas. I haven't spent time with them in person since Christmas 2019 and I'm so excited! We have done some Zoom get togethers, but it just isn't the same! My husband is staying home with the dog. There are way too many people, in too small a space, with no privacy for anybody. It really has nothing to do with his PLS, he would have hated going on this weekend excursion even before he had any health issues! And now he has the perfect excuse to stay home! I'm a little nervous to leave him home alone, but he is totally self-sufficient and fine on his own at this point. This will be the first time we've been apart for more than a few hours since Christmas 2019. If it all goes smoothly, I'll go up to the cabin a couple more times while they are here until the end of July. Honestly, I think my husband is as excited about a "boys weekend" with the dog as I am about seeing my brother and his family!

This week was so nice. I want to bottle this feeling up so I can always remember it.

 

[affected]

that's great, the buttons really make life so much easier don't they?

I think this respite trip is brilliant. While he can have that time to himself, take it. You both need it! Recharge and enjoy.

 

[vltsra]

Robin, sounds like you had a great week. Hope your time at the cabin was a good break for you.

My PALS told me this week that he really doesn't see the point of going to all of these doctor visits. Given that his progression is slow, I tend to agree. He has all of his equipment needs met, and I can't really think of anything additional to ask at this point. I suppose when we have more issues we can always request a visit.

I struggle a lot with keeping my head above water these days. Trying not to think about the years of caregiving ahead but sometimes it's hard. My friends are all excited that they are finally able to go out to dinner at a restaurant or plan a trip. I'm also tired of people telling me all the things I need to do and second guessing me about everything. His friend told me I needed to hire 24 hour care. I don't really want to spend down all of our savings now when we may need it in the future. Hard to take advice from someone who comes over for 2 hours every so often and doesn't see the rest of the picture.

V

 

[rmt]

V, we are feeling the same way about the doctor visits. We are supposed to have an ALS clinic visit every 3 months and we get almost nothing out of them. The last one was useful since it was right after my husband got his feeding tube, but I think we may take a break for a while unless there is something we need. You know better than anybody else what you need, so you can always ask if something comes up.

My weekend with family was amazing! It was so wonderful to spend time with my brother and nephews. We swam in the ocean, played volleyball, played lots of card games and just hung out. It was a perfect weekend! And my husband did great on his own. I think it was really good for both of us to see that he can still do everything he needs on his own. The only issue was that it was SO HOT!!! The Pacific Northwest is not built for this kind of heat! But somehow we all managed to stay cool enough and now the temperature is back down to normal summer weather.

Since the weekend went so smoothly, I'm going to make another trip up to visit my family next week. Hopefully this time we won't have record breaking heat!

 

[JimInVA]

@rmt - It has been hot in Seattle. My daughter lives there... near the downtown area. Being from Virginia, she was used to having Air Conditioning available. So about 2 months ago, she went out and purchased a nice window unit. She was so glad that she had done that!

@vltsra - We enjoyed the clinic visits for awhile. It was nice to get all of the various field experts coming in to talk to you in a single session. We learned a lot and it made it much easier to get the equipment that we needed before we really needed it. For getting quickly up to speed, the clinic concept was outstanding!

We took our son with us on one visit, in March of 2015 (I just checked to verify the year). At that point, we had all the equipment that we needed and had no more questions. We were pretty certain that we didn't need to continue with them. It was at this session that the neurologist told Darcey that based upon his experience and her rapidly declining FVC (she was at 15% on this day), he believed her to be within 6 months of life's end. She told him that she still had things to do and would get back to him when she felt it was time to consider hospice. That was the last time we made the almost 1 hour drive to that clinic. Instead, we found a local neurologist and saw him every 6 months.

I think we all know when the task of attending a clinic is no longer of value or worth the effort. If I had questions, I'd email our local neurologist. If he didn't know, he consulted with the clinic's neurologist who specialized in ALS. And he (the clinic neuro) was the very best of the doctors that we worked with... both for knowledge, dedication and personality... he insisted that we call him by his first name, Andy.

My best...

Jim

 

[Mary2]

Yes, we have had discussions about future care with doctors. We do not need any therapists at this point and Emory has been meeting with us through TeleConference....but Emory is 2 hours away. However the ALS clinic near us wants us to have appointments that are several hours in length meeting with various therapists....sounds exhausting! So we don't know what we will do in the future....PALS used his air mattress for the first time last night...he loved it!..Thanks Jim! We are planning on the GT in August. Otherwise we celebrated out anniversary and our son came for 3 nights and brought his black lab. We love the black lab!

 

[JimInVA]

Happy Anniversary, @Mary2 ! And isn't it always wonderful to have children come and visit?! We like the clinic concept as it made the hour long trip worthwhile... at least in the beginning while we still had questions... and while we needed them to tell us things we didn't know to ask about. Eventually, it was not worth the trip. Also glad to hear that the air mattress is a hit! He should sleep much better, now. Thanks for keeping us updated!

My best...

Jim

 

[affected]

Yep, we stopped going to clinic, even with rapid progression we chose who to see and when. It can be overwhelming if you feel like you are on their schedule not your own.

@vltsra Don't people love to give their advice? I often just smiled and said thanks, and then kept contact to the minimum. Not sure if that is the most healthy, but it worked for me!
I can't imagine what you are feeling with the possibility of a long haul ahead as I did not have that. But I'll be here with you.

 

[Jrzygrl]

V,

I also struggled when offered advice on what I should or shouldn't have done. Come live a day in my shoes first.

Sorry things have been rough. I often wonder what I would gave done if my husband was alive during the COVID lockdown. His aide got COVID early-on and was in bad shape for a while. She only came twice a week for around 6 hours, but it kept me sane.

Know that I think of you and my other friends here often. I hope you can just keep putting one foot in front of the other. And I hope for better days ahead. Sending big hugs!

 

[Mary2]

This afternoon my PALS said his hands and arms are getting weaker and there is more fatigue. There is no finger that he has good control over. His index finger on the right has some control. His speech is still good. How should we begin to look for assistive devices? Is there a thread on the forums for this?

 

[JimInVA]

For Darcey, her ability to use the internet and to participate in social networking was everything. Her computer also allowed her to watch movies and series on Netflix and on Amazon Prime. When she could no longer use a mouse, I moved her over to Dragon Naturally Speaking... a voice dictation piece of software. I had a wireless headset that paired up well and she used her voice to control her computer. She could do anything by voice that she could previously do by mouse and keyboard.

Near the end of her ALS, when her voice was waning and no longer being properly acknowledged by Dragon Naturally Speaking, she began to use EyeGaze technology which allowed her to do by eye movement, what she'd previously done by voice. There are other technologies available, too. I'm sure you'll hear of more.

My best...

Jim

 

[ARCG]

V, my husband decided about two years and a half years before he passed away, that the clinic visits were too exhausting and sapping his strength. He went on hospice and he found that less stressful. We also had folks recommending things without fully understanding the challenges of having ALS. In our case, we were relieved when we stopped the long days at the clinic. We participated in 2 clinical trials and hope that helps folks in the future but after that found that the clinic lost interest in us.