CALS Roll Call Continued

rmt

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226
Reason
CALS
Diagnosis
07/2019
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US
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WA
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Seattle
For me, exercise and playing music are helping keep me somewhat sane. Exercise is a savior for me, but then with no appetite and eating less, my weight is getting too low. I've never been skinny, so this is a new problem for me. I need to work on making sure I eat enough every day. I also think the antidepressant is helping.

I feel like a fraud sometimes because I keep most things to myself. Over Christmas everybody was so impressed with how great I'm handling things, but it is just because they aren't inside my head and can't see how much of a mess I am so much of the time.

My husband woke up totally dehydrated this morning and was very lightheaded. Luckily we got him into a chair quickly so he didn't fall. We got a lot of water into him and he perked up quickly. I'm always so nervous he is going to fall, even though he is still very mobile and hasn't had any falls. But he doesn't have a good sense of when he needs to rest or sit down when he is sleepy/lightheaded. A lot of my stress lately is about the possibility of him falling.

On a happier note, I had a wonderful time at Christmas with my family. We are all vaccinated and boosted and we tested before getting together. My nephews (12 and 14) are so much fun. And it was so nice to all be together. After not getting to celebrate together last year, it meant so much to all of us to be together this year. My parents are "stuck" in Texas due to cancelled flights (a combination of weather and covid issues in flight crews have really messed up flights to Seattle), and are loving the extra time with family.
 

Mary2

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May 1, 2021
Messages
203
Reason
CALS
Diagnosis
04/2021
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US
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GA
I know the stress of worrying that your husband will fall. I lived with that stress for years..through the cane, the walker, the transfers from the wheel chair to the toilet. When he finally did fall he was sitting on the rollater and trying to stand to make a 180 degree turn to the Lyft chair. He slowly collapsed to the floor. We called the Sheriff's department and with help got my husband to the bed and he has been in a wheelchair ever since. All this happened before his ALS diagnosis. He fell in April or May 2020 and was not diagnosed with ALS until April 2021. That is how difficult it can sometimes be to diagnosis ALS.

Your family is very smart testing before they get together. I wish my son and his fiancee would test. She works with children and there is a real risk that she will catch COVID through her employment.
 
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affected

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Apr 26, 2013
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For me, I had a huge fear that Chris would fall and die in a pool of blood in front of me. He knew this, and with his FTD he would tell me, well he was going to die anyway and not try to be safe. It's a real fear for CALS.
We did end up having some awful falls too.

I'm glad you realised it was dehydration quickly and could respond. It's always something, no wonder our brains are on such high alert.

I know I did a good job of being a CALS, but I also know I was just bumbling along through each day and felt like I couldn't even begin to do enough. Don't allow that feeling of being a fraud to take hold - you are doing something that is indescribable to anyone who hasn't walked this path.
 
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Mary2

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Joined
May 1, 2021
Messages
203
Reason
CALS
Diagnosis
04/2021
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US
State
GA
Happy New Year to everyone! PALS arm movement is deteriorating and it is time to take the computer off his lap and put it on a desk. Anyone have any thoughts about what type of desk is best. Also we need an alarm, I have looked at doorbells, but they seem raised up to me and I don't know if PALS can lift his head high enough. I don't think so. The quadriplegic alarm looks good, but is $300.00. Also, we are going to try a condom cath, if anyone has any suggestions about those.
 

lgelb

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If he has any muscle that he can move reliably, a simple doorbell mounted where his foot or finger could reach it could do. Some people tape an ability switch to their feet or forehead, that operates a doorbell or other alarm.

If he still can operate the computer at a desk, there could be an icon in the dock or tray that serves as an alarm (a sound file or autodialer). Or the same principles for his phone on the home screen.

Would voice control and dictation be options?

We used foam (cheaper) or gel (cushier) sleeves for chair arms for comfort, and an articulated arm (sometimes elbow, too) with forearm rest attached to the desk (it clamps on; you don't need to drill) to support the arms and move when they move. These are cheapest on Amazon, searchable on terms like ergonomic arm rest. Those extended my husband's keyboard use by several months.
 

Mary2

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Messages
203
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CALS
Diagnosis
04/2021
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US
State
GA
Thanks for the ideas Igelb. PALS loves the ergonomic arm rest idea. We did not get far into looking at desks or alarms this week. The days are busier and busier with his meals and care. We do have an assistant coming 3 mornings a week. PALS has agreed to have Kate Farms for one of his meals each day. PALS seems to have adjusted to the idea of going to the wedding. I hope the Omicron virus has died down by the end of May. Maybe not. We might have to make the tough decision for him not to attend. He will have had a 4th shot by then since he is immunosuppressed. I get 9 to 10k steps in with out exercise on the days the assistant does not come.
Sorry to be rambling! I hardly get out!
 

rmt

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Joined
Sep 18, 2019
Messages
226
Reason
CALS
Diagnosis
07/2019
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US
State
WA
City
Seattle
Mary, I'm glad you have an assistant coming to help out. And I'm happy that your PALS is thinking about going to the wedding. Fingers crossed that Omicron will have burned out by May! It is so hard to plan for things with both covid and ALS to worry about!

Things are going OK for us. We are mostly staying home and trying to avoid covid. After a bunch of appointments in December, we have nothing on the calendar for January, which is lovely. We've been watching a lot of football and are looking forward to the playoffs starting soon.

I had been looking forward to the holidays with my family for months, so I'm a bit sad that is over. The family (including my PALS) are hoping to make a trip to Hawaii in July. I'm trying to get excited for that, but there are so many questions. Will we be able to go (will covid ruin everything)? Will my husband will want to go? If he does want to go, how will we manage travel? Will he have fun? Will I have fun? If he doesn't want to go, should I still go? Am I the worst person ever for even considering going if he doesn't want to go? Oh well, July is many months away. No sense in worrying about it just yet.
 

Mary2

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Joined
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Messages
203
Reason
CALS
Diagnosis
04/2021
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US
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GA
RMT, I hope you and your PALS and family can make it to Hawaii. I was there for a couple of weeks in the 80's and loved it!
We are watching UGA v AL tonight, so will be staying up late. UGA is hanging in there better than I thought they would! I am amazed he has the energy to stay up for the entire game, but this seems to be the case. At least he is interested in the game!
 
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vltsra

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Joined
Nov 12, 2015
Messages
613
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
City
San Diego
Mary and Robin, I hope things work out for the wedding and Hawaii, respectively. I am so thankful for the travels we did when we could.

I had been feeling very low during the holidays. Didn't bother with a tree this year and I was just down about my PALS and all of the unceasing demands of this illness. Despite the new mattress he has still been awakening me all night. I think the lack of sleep was getting to me. We ended up bringing on a nighttime caregiver so I can sleep at least some nights and it makes a huge difference. I cannot take care of him or myself with no sleep. Feeling much better with the help.
I will worry about the cost later.

Yesterday I spoke with an old friend. It was so good to hear her voice. I feel so blessed in life to have such amazing women friends. She was encouraging and kind, it meant so much. Also my PALS got outside in the sun and was able to operate his chair with the new headgear. He was having a ball driving around our little street. When he is happy it helps my spirits.
V
 
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Mary2

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Messages
203
Reason
CALS
Diagnosis
04/2021
Country
US
State
GA
Thanks Vitsra! I have had to up the hours of my caregiver as well. I still don't have help in the evenings or at night but that may have to happen at some point. The cost is a concern, but there is no way we can take care of our PALS without sleep. I am so pleased the new headgear is working out. I think we will be headed in that direction ourselves. My PALS is so pleased that my son is excited that GA beat AL and won the National Championship. When my son is happy, my PALS is happy! All these tasks drive me crazy! I can't imagine how many tasks people did in the centuries before this one. I would not have survived. And some of the littlest tasks drive me the craziest....the beep of the Trilogy when it needs to go to the internal battery or be plugged in. That little task drives me nuts!
 

JimInVA

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Mary - I had someone in Mon thru Fri. She'd arrive at 9AM, let herself in and get Darcey up, washed, dressed and fed. She would leave between 11 and 11:30 to run errands and visit her Mom (until Covid arrived). She would return about 2 to 2:30 and stay until 5PM... giving Darcey her evening meal. I took care of nightly tuck-ins... which I honestly enjoyed... and weekends. For me, that worked great. I hope you find that right combination and balance of hours and cost!

My best...

Jim
 

Mary2

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Messages
203
Reason
CALS
Diagnosis
04/2021
Country
US
State
GA
Thanks Jim, I don't think I can increase the hours much more, except maybe towards the end. I get PALS up every morning and give him his meds. He has quite a few! Then 3 mornings a week the caregiver takes over. I don't think the caregiver has the strength to pull the mat under PALS. to get PALS up. PALS has been drinking Kate Farms for lunch. I make and feed PALS dinner in the evening and do the meds and evening routine. I am very tired during the evening routine and struggle with energy. I have been helping PALS get to bed for about a year now. I should count the number of tasks this takes. Even prior to ALS Pals had an elaborate evening routine. We could maybe have Medicare pay to have home health come in...just to wash PALS but this doesn't seem worth the COVID risk to us.
 

Mary2

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Joined
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Messages
203
Reason
CALS
Diagnosis
04/2021
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US
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GA
PALS said he was Short of breath today so I put him on the alternative settings the Trilogy has. I called the RT after hours and he said we could stay on those settings if we wanted to. The machine is set at 26 BPM and PALS is breathing 40 to 43 breaths per minute. I am tempted to call the RT back to see if there is anything we can do with the Trilogy to help PALS...I hate to be an after hours pain, maybe this is the normal course of the disease and I should accept the 43 BPM respiratory rate.
 

lgelb

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No, the machine should not be set on 26 as a backup rate, and 43 is definitely too fast. I will PM you.
 
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