CALS Roll call

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Happy Wednesday to you all!!

tc
 
Still humpday here so just wanted to check in to say hello and thinking of everyone. Seems the pace of progression is really picking up for several of our PALS. Keeping you close at heart.
 
Anna and DJ, my thoughts are with you.

--Laurie
 
I'm late checking in this week! But I'm here, and doing way better than last month. I had some incredible support from people here which I'm so thankful for. I receive a lot from my family here, thank you all!

So much happening for so many of our CALS.

Please do feel free to start your own thread so we can keep track of any issues, but post anything in this free-for-all thread too. I appreciate that some of you at least drop in and let us know things here. I would just like to be able to offer back some better support if you want to start threads. So, I want to make a few replies back to the many things happening. Please forgive me if I miss anyone and keep updating us!

@scared - so much has been happening for you, I hope you keep talking here, we are with you girl!

@janis - how is Douglas doing now? So awful, but it seems he is back home with you?

@sandy - great to see you posting, has the peg been done yet? If not, when is this happening? We have a forum section for pegs, you may find lots of helpful stuff if you poke around in there. Please speak up, we can help. The peg will make both your lives easier and they are a snap to use.

@gem - oh sh!t another fall :( how is bj now??

@steph - I'm learning a lot through your threads about this VA assessment and have been thinking of you a lot. Is Julien ok now?

@dj - so good to see you posting. It's truly awful when we can't even communicate effectively. When it is reduced to just being about working out care needs, and difficult to even work that out, it's just soul-wrenching to not be able to reach through and be a part of all that is still going on inside the one we love :(

@anna - oh so many memories your post brought back. There we are advocating for our PALS, and facing the crap that the health system can produce, and yet agreeing with parts of the advice being given, and doing all we can to care for them in a facility and, and, and, then they take it all out on us like we are the enemy. It's the toughest part. But you know in your heart what you are advocating for, and the love you have for him, so hold to that. I wish you peace in the battle, it's not easy (obvious stupid understatement!), but you are doing all you can to ensure the best care as well as meet his needs. Keep talking, we truly do understand the enormous strain.

@texastc - big wave mate, good to see you log in!!!

@4tloml - good to see you log in too, how are you doing?

I went back as far as my last post here, I hope I didn't miss anyone, keep posting, I am thinking of you all.

I had an exciting meeting today about something, and have come away after being asked many questions about my experience caring for Chris, with a deep understanding of why I want to support CALS and PALS, even nearly 2 years after losing Chris. I would never have made it without support, and that is why I want to support back. love all of you wonderful family
 
Julien is doing ok. He is at a new school for kids with learning disabilities so that relieves a lot of stress. Granny picked him up yesterday so he was glad about going home and not the hospital. Today I will get him but we have a plan if I am running late.
 
Hello,

My name is Sharon and I am new to this Forum (as a CALS). I did try and post our first posting with our background story and some equipment information that I was hoping to share with you yesterday but I can't see it anywhere. Maybe someone can help me identify where it might have gone? Laurie (lgelb) did message me that it got posted but I've searched all the new threads but can't see it anywhere.

I was particularly hoping it would get posted on the "CALs Roll call" thread and I really do hope it's out there somewhere as it took me a long time (over the past 3 weeks) to actually put it all the information together for everyone but I felt that it was worth it to at least let everyone know what has been a big help to us (me and my husband, Mario who was diagnosed in 2012).

Anyway, fingers crossed someone will be able to let me know where I can find it.

Thanks in advance,
Sharon
 
It is here. I had moved it to new dx but evidently someone else moved it again. As I noted, this is the one and only bite of the apple for all of these product links, please. And I will further note for all that equipment is not a one-size-fits-all deal, so always research before making a purchase decision, feeling free to post your specific need, for feedback here.

Best,
Laurie
 
Hi Laurie,

You mention in your thread that “It is here” but when I click on that link I get this message:

“Invalid Thread specified. If you followed a valid link, please notify the administrator”

So I still can't find where my posting is.

I'm also really not sure why you say "this is one bite of the apple for all these product links" as I was only trying to help. Being a CALS myself with very little time, I totally know how time-consuming it is to filter through internet links to find stuff even when you know how to google so I can assure you that my intentions were purely just to try and save everyone else out there all the painstaking time it took me to filter through everything to find anything and everything that might be of some help to my dear husband.

I also totally appreciate that not every piece of equipment is fitting for everyone else but if what I was trying to communicate in my posting helped just one other person then that would have been worth all the time and effort I put in to submitting a posting.

However, from the two messages that I have received from you about my posting, clearly I have overstepped the boundaries of your Forum and so for that I am very sorry……as I say, my intentions were purely just to share information that has been of help to my husband in an effort to try and help anyone else in any way we can.

I was also encouraged by my husband's Occupational Therapist to share the information with the ALS community….if I could find the time!!! And that's what I set out to do but it doesn't appear to have worked out that way.

At least I know in my heart that I have tried to help. I just wish that other CALS on this thread would at least have had a chance to read my posting and see if the information that we had to share would have also been of help to them.

Sharon
 
Hi Sharon,
If you click on your name on the left hand side , you can look at what other posts you have put up and click on that and it will show you your other posts then click on the one you want to see.
Love Gem
 
Sorry, you posted so many places initially it was difficult to parse where I ended up. Just FYI, most of the pieces you mention have been featured before and so the level of detail you provided may be unnecessary as well as difficult for P/CALS to get through, given that your goal is to help. Everyone here can search on a product name. I did delete some superfluous material.
 
Hi fellow CALS,

Sharon, I got the same message when I tried to follow the link. I am sure that Laurie or one of the other admins will find your post. Laurie's reminder about things not one size fits all, I'm sure, was for the rest of us. Some new CALS don't understand that, so it is an important reminder. Laurie is one of the good guys, so stick with us and we'll get things straightened out.

Tillie, you are such a giver, and for that I am grateful.

Anna, it sounds to me like you have even working on the crown in silence. Please keep speaking up--it helps.

Steph, I'm so glad that Julien's new school is working out.

DJ, I'm so sorry for the loneliness that you are experiencing. Please let us help with that.

Gem, I'd love to see pictures of the house. What a wonderful project to work on together. I so hope things slow down for your husband so that you can finish and enjoy it together.

What a hard time everyone is having. Tillie may have a good point--it's hard to follow all the situations here in detail and follow up on them. A quick check in is good, but individual threads might be helpful if we want individual support.
 
I once again missed Wednesday, but it's just as well as things are looking much better today.

Yesterday Douglas started feeling pain near the stoma again and the area was somewhat swollen and a little red. Today we had a "tube check" and the gastroenterologist, whom I believe is the 8th one we've seen from that practice, replaced his MIC-KEY with one with a slightly longer tube and prescribed a new antibiotic. We were both worried about what they might find, so it was such a relief to get out of that little crisis so easily.

I've been feeling guiltly about not finding a way to raise his recliner 4-6 inches as requested by his OT. Today a neighbor came over to take a look at what can be done; he took lots of measurements and hopes to have something for us in the next few days.

My feet have a skin infection for which I've seen a dermatologist several times. Every time I got up during the night it felt like I was walking on glass as the too-thick skin on my soles cracked and bled. Yesterday one of her assistants suggested that when the prescribed ointments had been on for awhile I slather my feet with moisturizer, wrap them with plastic wrap and put cotton socks on top. I did that before going to bed, with the plastic wrap and socks on all night. It worked wonders!

In spite of strong pressure from multiple directions Douglas's AVAPS still isn't through all of the paperwork. He's still using CPAP. Last night he once again tried the chin strap he got last summer and, miracle of miracles, only got me up once during the night!

We're both feeling pretty good right now, and I appreciate all of the support here.

Janis
 
I was also encouraged by my husband's Occupational Therapist to share the information with the ALS community….if I could find the time!!! And that's what I set out to do but it doesn't appear to have worked out that way.


Sharon

Hi Sharon and welcome.
I'm really excited to go and read through your own thread where I can see you have posted so much information and I can really appreciate that this took you a lot of time to put together for the sake of helping.

This is wonderful and generous thing to do. We all share lots of our own tips here when we find something works and it's a great resource. There are so many threads here that even if someone posted something last month or a year or two back, it's always great to have good ideas and suggestions come up again at the top of things.

Sorry you are joining us, but you will have a lot to give here and I hope we can in turn give you a lot of support.

I'm in Australia, and in truth am working as it's day time, but was just taking a little break, so I will have a good read through your thread as soon as I can and chat further to you there :)
 
For all the cals out there....
 

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The corrected link to Sharon's post was in my last post (hyperlinked to the text "ended up"). It is found, assuredly. Thanks for the kind words, Becky.
 
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