Just got back from clinic

[Schmidhogan]

Well I'm ten points down on my FVC and hospice has been ordered. I think I've got 6 to 12 months more to this body though. Seem to lose 10points every 3 months. Incredibly, hospice already called and I have a visit for tomorrow. That's great service I'd say. Alex

 

[cheerleader]

Alex, sure you will find hospice to be a kind, loving support for all of you. Hope you continue to find joy in your life- and if not joy, peace and contentment! Hugs to you. Donna

 

[Graybeard]

I had a hospice rep bugging me ten months ago, after my first ALSA meeting - at their HQ. VA neuro yesterday ordered palliative care for me. It will be Jan 23. I'm down from about 70 in June to 50 now. Get another test tomorrow.

 

[Schmidhogan]

Graybeard, seems that we might be walking this tandem.

 

[skipper66]

Thinking of you Alex! Hugs, Kim

 

[bigmark1954]

Dayum...Scmiddy....I don't even know what to say. That really sucks, and WOW that is fast progression! You seem to be handling it better than I will when I reach that point.
Keep us posted. Reality is so harsh!

 

[affected]

Hospice and palliative care don't have to mean you are about to drop, but they can give so much more specialised help to you.

Damn I HATE ALS though!

 

[cheerleader]

Tillie, I am not a swearer- but find myself saving DAMN ALS on a regular basis! Guess it beats the F word! Donna

 

[lgelb]

Guys, don't shelf-date yourselves -- Larry lived nearly 4y after his FVC hit 50 and I'm sure others can chime in w/ similar examples. And the progression is not necessarily linear. I know I sound like a broken record, but you have to keep titrating your BiPAP based on your data. Otherwise, you're driving [not] a car on an empty tank. Once you're doing that, nutrition, passive ROM, massage, music, other interests and love all play a role.

 

[4tloml]

Am sad hearing that Alex, and Greybeard, too. Sounds like wise words from lgelb, though, and I do recall when we cared for my father-in-law several years ago, the doctors sent hospice in for his last "month." Surprise! A year later he'd become the longest patient they'd ever had. Doctors depend on statistics. Be an outlier!

My wish is that you have something to smile for each and every precious day. Even if it takes rereading BigMark's jokes! (Fasten eight--still makes me laugh, BigMark!)

 

[Nuts]

Crap. Can I say that? I guess we'll see. I think I got away with it once before.

This is going to sound like an echo, but accept help and comfort but don't give yourself an expiration date. Yes, it's good to be prepared, but then enjoy as much as possible and know that this crazy disease has a mind of it's own and progression is not always linear.

Have you guys done breath stacking? I'm wondering how long it will help (right--I'm asking for a time frame with this mess?) since it took my husband's numbers back up the first time they dropped appreciably. Of course, he made sure his respiratory tests were done first this time, rather than after he was already tired...

Alex and Greybeard, prayers for a slower progression. We need you to stick around for a long time to keep Big Mark and Max in line...

It just occurred to me--this is the first time in my hubby's life that his competitive spirit has him wishing for regression instead of progression.

 

[davbo49]

we can't give up now. there is a lot stuff we can't do yet

 

[cheerleader]

Thinks Davbo, for finding humor in a tragic situation! Sure beats wallowing!

 

[Santa joe]

None of us have a crystal ball - just live day by day. Make the most out of your life for as long as you can.

Debbie

 

[Janie H]

Alex, I am so sorry, I agree about not putting a date on anything, don't give up!

Janie