CALS Roll Call Continued

It's Friday and I've been in California visiting my sister and mom since Monday. I've gotten wonderful sleep this week. Yesterday I finally felt caught up and this morning was about to bring myself to sleep in.

Last night mom fell in her assisted living apartment. This morning her shoulder was swollen so my sister took her for an exray. Sure enough, she broke her right shoulder. This is fortunate, since she can't use her right arm (had she broken the left she'd have been in trouble). This afternoon, my sister-in-law who is visiting for the day tripped and too or her toe so badly she had to have four stitches.

Clearly it's time to go home tomorrow morning...

Becky

Oh, I forgot, my sister cut her finger Sunday while I was flying out. Five stitches for her.

What a family!

Hello dear friends. I'm just resurfacing. Sorry, but but we've been only just holding it together here. Cold weather has hit here and the grey skies, rain and chilly days have arrived. My pals is staying strong but he is loosing a bit more breath, and we are finding this bloody disease so difficult. Feeling very sad as we have a little more taken from us. Glad to be able to have this forum!

Checking in! I went to the dr this week to get some help with dealing with the difficulty of ALS. I feel like it's going to help. I hope everyone is doing well.

Had a great get away last weekend to Waco Texas. We visited Chip & Joanna's store. It was a girls trip with my sister and mom. First time I was able to escape my PALS illness for a little while. It was much needed. Not sure how much longer I will be able to leave him alone overnight so I made the most of it.

PALS and I are taking a lake trip with friends this weekend.

@Becky hope you are OK now you are back to reality again?
So glad you managed to escape injuries, and I hope your mum and sister are doing OK now?

@Aussiemndcarer I think winter is really tough on PALS in lots of ways. Keep talking here when you can so we can support.

@sooner 3 bits of good news - help from the Dr, a break for you away, and now away with hubby. gold star!

I'm here, caught a head cold off a work colleague which surprised me as I rarely get colds or flu. I gave myself permission to take 2 days completely off and stay inside and warm, drinking hot lemons from my tree and all the stuff I would tell my best friend to do. Usually I'm terrible at looking after myself, so I guess it's a good sign that I did it right this time!

Tillie, So glad you gave yourself permission to stay home and take care of yourself. I have a really hard time doing that as well! It was a great call! I hope you feel better soon.

Hi All, a bit of good news to report. Since starting to actively use the Tobii, Brian is sleeping through the night. He was up last night, but that was do to the trach change and actually he was sleeping but the noise woke me. Just needed to adjust the new trach and we were back in business. Even his nurses say he's a different person.

Also, I started taking care of me finally. I went to water aerobics at a gym I've had a membership at forever, but rarely get to use. I was able to adjust my schedule at work, and now that I'm sleeping I'm taking care of me first and then work. We will see how it goes, going forward.

Tillie - good on you, taking care of you.

Tiliie, sorry you find yourself sick but happy you are taking two days off. Lemon tree... I am so jealous. I love lemons.

Becky I am glad you made it home uninjured and has time to rest. Sooner wife, Waco is a nice little town to get away to but being from Cleveland you know about little towns. Narrowminded, I am so glad the Tobi gave hi some hope and you some rest.

Steve is managing with his losses each day but has not left the house for over a month. I try to get him out but he wants nothing to do with his chair and at this point cannot walk to far without losing his balance. I was out of town last week for work and then took the weekend to see my grandchildren which I missed dearly. I took them both to Galveston for the weekend and the three of us laughed and played. It really helped me to unwind and I feel much better health wise.

I know there will come a time where I will need to be here when not working to give his brother a break so spending time with the kiddos while I can is important.

I haven't been posting a lot because I am not sure my posts help anyone and worry they sometimes do harm. I certainly read the posts here. I have noticed how it is so very hard for so many CALS dealing with losses and with mistreatment. My thoughts are with you all.

I'm doing much better than I was last Wednesday but it's still been a week full of tears and frustration. I started seeing Douglas's longtime counselor, who is planning to move out of state in a couple of months, and have an appointment for a counselor at a clinic that specializes in people with terminal illnesses and their families. I'm thinking about getting more caregiving time; right now we have two 8-hour shifts and a 6-hour shift, but stuff keeps piling up and with an increase in feedings and new use of cough assist and suction I'm busier than ever when they're not here.

Douglas finally got his new Tobii Dynavox set up and on the internet, with more training assistance coming soon. Meanwhile I can understand less and less of what he says, which is very frustrating for both of us. I realized that the voice he was using on the Tobii made everything sound snide, so together we picked a different one. The friendliest ones are English, but if Stephen Hawking can use an American accent then I suppose Douglas can use an English one.

Laurie, I've been using various prescription creams and ointments, including Clobetesol, for a few months. I had NB-UVB treatments for a couple of months, which helped some issues but not others, and occasionally I had bad reactions to it. The remaining problems are with my hands and the soles of my feet. My hands got a lot worse this week, probably due to the stress. I flunked one of the bloo
d tests for kidney function and will re-take it soon, then we'll see if I can take Methotrexate. My daughter has taken it for a couple of years and my sister-in-law for much longer and they both call it a wonder drug.

Janis

Re: PALS roll call Wednesdays ( or whenever)

Here for the first time.

Janis, with any kidney issue you should not start MTX. I'll bet you haven't been through all the other possible therapies.

Been busy tiling in the kitchen and a tiled hearth for the wood heater, I hope to get the wood heater over to the new house tomorrow and have organised with a neighbour to come and fork lift it onto our trailer as it weighs 250 kgs, then we will off load it onto a pallet jack so we can get the heater up the ramp and into the house. We have a off grid solar system and I now have all the power points in the house working, electrician is still working on the light fittings. Tomorrow I will grout the tiles and help build a pantry cupboard. BJ is slowly progressing he can't use his thumbs anymore , and is now typing one handed as his left hand is almost useless now. His spirits remain high and he is so very polite and apologetic when asking for help.he's the love of my life and it's so sad to see him lose a little bit more each day. Luv and hugs Gem

When do you move in Gem?

You must be getting so excited and exhausted all at the same time...

Hi mimi welcome

Janis I hope you really get on top of this soon xx

scared don't think you can't post at any time. Of course lurking is fine, but sometimes it helps someone just to know others are struggling too

narrow this is great news, let's hope it continues for a good long time!

thanks everyone for your comments back to me too, appreciate every single one of you here so much

That's great news Narrowminded. Glad things are better for both you and your PALS.

Scaredwife, so glad you were able to spend some time with your grandchildren. I love mine so much and they bring me so much joy.

Please know that your posts do not harm us. I learn from each and every post. Please keep posting!

Tillie I wish I knew when, it's about 6 weeks behind now, we have the floor Sander man coming maybe next week and then the septics need to be put in. I am having a break from the 13 June for 5 days and BJ will go to respite care, so we will maybe move when I get back, 5 days of sewing and gas bagging eating and drinking. It will be great to be in and sit back and relax once we have unpacked.
Luv Gem