CALS Roll Call Continued

Welcome Mimi

Scared wife - please post, it's the posts here that encouraged me to rework my schedule and start taking care of me. Every post helps someone.

Janis - glad things are going better and you found a better voice for the tobii. Once Brian has his own and not the loner, I'll hunt for he voice adjustments, thanks for the tip.

Gem - your new house sounds awesome!

Gem here's hoping you are in for the end of June then

I am new to the forums and not sure how the roll call forum works or its purpose. Thanks.

Hoosier, the roll call is a place for CALS (caregivers of people with ALS; the word is both singular and plural) to check in weekly, or just once in a while, to let others here know what's new with them: good, bad, weird, whatever. Bigger questions, topics for discussion, or serious rants can get their own new threads, but this thread is just to keep in touch.

Hmm, it's actually more important than that, but that explanation should give you the general idea.

Hey Gem,
It is so interesting listening to what you are up to next with your house building. Having a project that you can both still work on is so wonderful. I miss this so much..... We used to always be creating or undertaking a new project together. Like, building sheds,new vege gardens,a cafe function,a new sheep yard, brick paving etc so I find it interesting reading about your progress. Your PALS will be frustrated with his decline in ability to complete tasks,but he will be proud too....proud with your wonderful achievements. Good on you

Tillie, last year on this day, we left on an adventure to escape our winter. 4.5 months up to the north of our state. We were determined to miss our chilly winter. Now,one year later, it is impossible to escape it,and I have been really scared about colds etc. well, I think we have nearly burnt a forest!! As I have our fire going nearly non stop . Air conditioning in bedroom, and a ceiling heater in the bathroom too. Even with all of this,I picked up a head cold.Ive been wearing a mask and gloves when around my PALS ,but as I have to feed my PALS and fit masks etc,I feel so scared that I will pass my cold on. We have both had flu shots. I guess I will have to just keep positive and keep up with plenty of vitamin c foods.its amazing what a blue sky and a sunny day can do for the morale!

Just wanted to let you all know that I'm still around. My gram fell out back and broke her wrist so I drove down to her place yesterday to stay with her through tomorrow.

Hi all!! Just a quick note to tell you I'm still here ..... my hubby/PALS had a really CLOSE one; almost died. Made me REALLY TRULY rethink the whole ALS thing. Dave and I were traveling. Long story told short: he survived 5 airplane takeoff/landings (from PA to several islands in HI) with a saddle DVT (pulmonary embolism/arteries to the lungs). Dave was lifeflighted from LIH (Lihue/Kauai) to HNL (Honolulu) with an apparent MI. I pressed for a CAT, despite much evidence pointing to an MI. The CAT revealed a "very large, saddle pulmonary embolism"!! Less than 5% of PE's are a saddle DVT; only 2% survive it. Hubby is one who DID!!? I will provide more info later (to anyone who desires to read about it). All I can say is my PALS is a tough bugger!! I could have lost him in an instant!! ALS is one thing ......... bad as it is, but WoW - how he survived this, we will never know!? VERY busy life here in PA, gardening, weeding, opening up a swimming pool, etc., plus me working 25-30 hrs per week - so that is why I have not had time to visit here). Dave was left weaker by this episode, but it beats what we THOUGHT was happening (which was ALS spreading quickly to his diaphragm and intercostal muscles).

Buckhorn- that really was a close one. I am so happy that your husband survived this.

Sharon

Buckhorn, I am so glad he survived and so happy to see that you posted. It's been a while. My thoughts and prayers are with you bith

Hi Sharon and Scaredwifetx - yes, it was an extremely stressful time. We are not really "out of the woods" with this one yet. We have more follow up appts., etc., but I still do not really know what the the status of the pulmonary "saddle" PE's are at the current time. I know that everytime Dave has one of the dry coughing episodes I totally FREAK OUT - because that was one of the odd warning symptoms. I almost took him to the Emergency Dept. this afternoon....... Supposedly the first 30 days are crucial - and he has survived that. My best wishes and heart felt feelings of allegiance goes out to all of you who are sharing this very sad voyage of ALS. I still shake my head in disbelief half of the time. I'm not really in denial, but I still catch myself with odd thoughts of disbelief, eventhough the evidence stares me in the face. I'm sure many of you know what I mean.

It'll be wednesday soon in TX...already is at Tillie's...so just a few thoughts from TX aimed towards you current CALS. I think of you daily...and pray for strength for you. Good laugh from the 'grow some' thread. He's right...you girls are awesome. I know how hard my journey was/is...I can't imagine what some of you are dealing with daily. Try not to dwell on the physicalities...Keep the faith...make every minute count...hang on to the little moments, they will sustain you later. Hope you all have a good week. I can't even begin to talk about mine...after reading of a few of yours...mine are inconsequential...the issues of life, that is.
tc

Thanks, TC. I love the Grow Some thread, too.

Buckhorn, what a scare! I'm so glad things worked out!

I'm here. Busier all the time, but life is good. I'm spending less time online these days in an attempt to get more accomplished around the house. We'll see how long that lasts...

Love to you all,
Becky

Checking in but as I heal, I find myself posting and visiting less. We shall see....

mee too goose...some days...then there are others.

tc