PALS roll call Wednesdays (or whenever) PALS ONLY PLEASE

[kellykago]

Still here and doing well. So thankful for slow progression

 

[Hank]

I am here. Hands are weaker. Left leg limp. Still working . Not depressed. ALS is my new normal. Hoping for the day when we are all cured

 

[DaChief]

Ok, I'm early . Headed off to Europe today for a river cruise on the Rhine. Trying to get these trips in while I am still mobile and can drink some German beer!!! See you in a couple of weeks.

Regards,
Bruce

 

[WendyWooG]

Enjoy your trip Bruce, post some pictures when you get back
Wendy

 

[CGARS]

takes more than a 4 week hospital stay to shut me down! back home now, but it was a close one.
have to get use to nocternal bipap now.
props to my amazing wife, who saves me daily.

 

[van1]

Still Kicking this ALS

 

[Nikki J]

It's nice to hear from all of you especially those of you who have not been around recently.

Casey so sorry to hear but glad you are here to tell the tale!

 

[skipper66]

So sorry to hear about your long hospital ordeal Casey. Glad to hear you pulled thru. Kim

 

[Firefighter58]

Hello everyone, all is well in Oakville. Bright sunny day, warm and no humidity and no bugs.
Al

 

[Statius@]

Had my quarterly VA ALS clinic Monday. The staff seemed pretty certain they'd be offering Radicava, questions remain about how to deliver the infusions sand who will be eligible. My symptoms haven't changed much since the last clinic. A pulmonologist at the nearby university had me do an overnight sleep study to see if I had sleep apnea. As it turned out I have rather mild apnea, but my O2 saturation was as low as 81% so they want me back for a followup when they'll try out a CPAP and presumably a BiPap during the study. My other respiratory numbers remain strong (FVC 114%). We'll see.

Al--I think all the bugs have come to Iowa.

Ed

 

[KW1234]

Checking in. Sunny days in Oregon this week.

 

[Firefighter58]

Ed, you can keep air those bugs and any more I find well I will just tell them all their friends have moved to Iowa and they should move down to that beautiful state.
Al

 

[KimT]

Still here in sunny Florida. The pool has been wonderful

 

[swalker]

I am sure glad to read everyone's update. Thanks for keeping this thread active.

We have been back from Yellowstone for a bit over a week. It is surprising just how tired I am from the trip. I am slowly recovering, but there seem to be more things that need to be done every day than I can possibly do.

For now, I am just letting things slide and am sleeping a lot. I have been out for a few wheelchair rides, which I truly enjoy. They certainly refresh my spirit.

The batteries in my primary wheelchair are dying and I have started the process of getting insurance to pay for a replacement set.

This has renewed my interst in building a pair of lithium batteries for my four wheel drive wheelchair (to hopefully double the range from 6 miles to 12+ miles). It seems like such a daunting challenge, I am not sure I can do it (physically). It does keep my mind busy, though.

Steve

 

[chally]

Signing in real late as my attitude as been $ hitty because of falling off the small plateau I was briefly on.
The transitional phrase always takes a moment to adjust to and I can git cranky when this is going on.
However , made it through the woods for now and looking for some adventures.
Hope the best for everyone!
Love ya Chally