CALS Roll Call Continued

Nuts, I get it. We have had a nice trip, Julien and I but he is excited to travel again and be a nomad hopping from one place to the next. I dont care for that type of travel.

Already Thursday here.
I think of you all every day, and miss you all when things go quiet.

Oh Tillie, We are starting our new normal and the tongues are wagging. After showing up sloshed for Steve's burial, the in laws are in judfement phase. I put a microwave over the stove and added a backsplash. The latesr is Julien got a puppy yesterday and I will get mine in a month. I have never had a pet to call my own. Both are Bichons. Here is julien's.

Adorable Bichon! What cheerful little pups they are. Congratulations to Julien and you on your new addition, Gooseberry!

Narrow, don't know how you work full time and provide the care you do as well. I know there are others here doing that, too, and I admire your stamina. Hope you get the additional help to fill in your current needs.

Gem, can't wait to see the pictures of all your hard work these many months. Exciting that you're getting so close to move-in!

And speaking of move-in, just getting nearly finished with that here. It is so nice to be done with the stairs in the old place. I can hear my guy from anywhere in our new little home and that has lowered the stress level a lot. He doesn't get away with anything now! HaHa

Gooseberry - the pup is adorable. Congrats and enjoy, something that will give you the love and relaxation that you need.

4 - it isn't easy and I'm looking for that extra help or relief. Have another idea bouncing around in my head, just have to figure it out. Congrats on the new house.

And we slept better the past 2 nights. So small improvments, but not sure if they will last, only time will tell.

It's Wednesday again... My PALS got his Trilogy last Friday. He is trying to adjust to sleeping with it which is a challenge. Hopefully he can adjust soon!

My PALS is still able to take care of himself so this weekend I am taking a trip with my mom, sister in-law and her mom to Texas. Hopefully I can focus on just enjoying myself?!

The puppy is so cute! I'm sure Julian is thrilled!

You all are an inspiration!

Very happy my PAL started using the FRS Speech device this week. I can't beleive how fast she has learned. I know she feels a little less dependant and less frustrated already. Got her text amd email going which is much easier to use her eyes than her hands her at this point. I'm missing my annual stag fishing trip. I did have family members who said they would cover me but I genuinly don't want to be far away from my wife.

It sounds things are improving for many. That is wonderful��

Douglas's Tobii Dynavox came, but the specialist who was going to set it up for him last week had to postpone her visit, and now it looks as if maybe she can't come for another month. Meanwhile it's very difficult for me to understand him and we're having lots of problems with the loaner device so he doesn't want to use it much. He's still using his Apple laptop with lots of help from me, and I am looking forward to him being able to handle email and surf the web on his own.

We had ALS Clinic two days ago. His weight is down so he's now doing a fourth small tube feeding each day. We need to start using the suction machine regularly, and a cough assist is coming.

Douglas changed his mind about the POLST (Physician Orders for Life Sustaining Treatment) and Advance Directive so that he can have "temporary" intubation for problems not related to ALS; isn't everything related to ALS at some point, and doesn't every PALS with temporary intubation get pressured into having a trach immediately? I plan to start a separate thread about that.

My skin problems have been diagnosed as psoriasis and I'll soon start taking methotrexate, a scary drug that can't be used with alcohol. I'll miss drinking wine and probably need new drugs to take its place.

We learned yesterday that our PCP is retiring in a couple of months. The daughter who visits every 3 weeks or so from California is interviewing for an exciting job in Pennsylvania. Our 28-year-old refrigerator has been making funny noises for a week; I'd like to just get a new one, but Douglas says that would be a waste of money while this one still functions and he promises to get someone to fix it for free. The battery on the converted minivan is dead agaiHcian Orders for Life Sustaining Treatment e n. I tried fixing the phone company bill last week but the changes haven't made it though yet, and they said they would send someone to find out why caller ID stopped working so I made sure someone was here all day but no one came.

I'm currently in the middle of my first real meltdown as a CALS.

Janis

So sorry Janis.

It seems like when it rains, it pours. Like CALS and PALS don't already have enough going on.

Checking in on another late night. In Houston for work and can't sleep. I developed the hives and swelling of lips. Had to go to urgent care. No known reason but suspect it's from all the steroids, NSAIDS, and Zoloft mix. Due to the herniated disk I have been on enough drugs to open a pharmacy. Steve is holding his own right now but is losing walking and balance everyday. I hate to say it but he seems to be more healthy than me right now and he worries sick about me. I am always running a hundred miles a minute and sleeping has been rough.

I did get to meet my son and his new girlfriend for dinner while in Houston. I also g35 to spend the weekend with my grandchildren. They always bring me back down to earth.

I hope you all have a good week and even though I don't comment much anymore I do read all of your posts and it always makes me feel better to have 5he support given here.

What is the purpose of the Caregivers Rollcall thread?

Jenny I started the original thread as so many CALS were very quiet at the time.
It's meant to be somewhere, (like the PALS one that got created too) to at least just pop on once a week, we nominated Wednesday to help remember when a week had gone by.

So if you are stressed, busy or whatever, you can just come here and post that you are ok, or not ok, but we know you are around.

It's best for shorter posts, if there is a specific something happening a new thread is the best way to go

Thursday evening. M had a bad week. Botox injections to his painful left adductor and hamstring 2 weeks ago were ineffective. Last week he had increased stiffness and his speech has worsened. For the stiffness his pump dose was increased. As it turned out the increase was too much and he spent the weekend feeling miserable until he equilabrated to the new dose. He had an MRI of his left shoulder which had a rotator cuff repair in 1978 . He has a lot of arthritis, and no rotator cuff any more in that shoulder which explains the sense that at any minute his shoulder will dislocate. Should he elect surgery, it would mean 6 weeks immobilization for that shoulder. Not sure how that will work. He is most depressed. As always when he progresses we go through a rough patch till he stabilizes again. So I take it out on my garden which is looking wonderful.
Janus hope next week goes better for you!
Gooseberry hooray for cuddles
May next week bring M's spirits up.
Anna

Be careful with your rx, Deb. I would review your meds, esp. the steroids long-term.

Sorry to hear about M's challenges, Anna. There are 2 slings specifically designed to prevent subluxation. He might want to consider one. Surgery would have its own risks in that regard.

Janis, if this is really your 1st meltdown you've done well! The POLST is not really written to convey nuance. Have a conversation w/ him about if/when. Methotrexate is third line after topicals and UV therapy. Have those both failed?

Happ<ier> Th/Fri,
Laurie