PALS roll call Wednesdays (or whenever) PALS ONLY PLEASE

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Still here even though I haven't posted much lately. Getting close to having the remodel done. Been a hassle as we stayed in the house. Heading to the VA today for Botox for drooling. Have tried everything else. They want me to start Radivica treatments asap but I don't think I am interested in extending this adventure.
 
Bruce,

I decided against Radicava, too. Not so much because of the hope of extension, more toward the quality time it would take from me while I can still do things.

Good luck with your remodel. Post pictures when it's finished.

We're finally getting good weather so I hope you can get in your beautiful pool.
 
Happy Wednesday all. Yesterday was the 4th anniversary of my first symptom ( falling) I did not recognize it at the time excusing it as fatigue after a big event. The big event was how I was able to date it in retrospect. I know I am very lucky to be here at all let alone still functioning.
 
Nikki,

We're the ones who are lucky you are still here. I can't remember how I found this forum but I'm glad I did.
 
Been a while since I checked in here--I've been reading intermittently but not as regularly as I once did. I've done 2 rounds of Radicava, the 2d administered by my wife via the PICline. Seemed to go well, though I wonder increasingly as others here have if it's worth the effect on quality of life. No side effects and no other effects for that matter. Figure I'll reassess in 6 months or so.

In January while visiting my daughter in Tucson broke one of the cardinal rules (I forget the name of the rulemaker) and fell on our last day. Cut the back of my head on a bar stool on the way down and needed staples to hold the parts together. All healed now and no loss of consciousness, but it was a harsh lesson in how easily I can lose balance and quickly go down. Ironically my wife fell on the same trip--didn't see a step down and faceplanted. She looked far worse than I did. My daughter said she was expecting to be investigated for elder abuse.

We're going to Hawaii (Oahu and the big island) for 12 days in March during the next Radicava hiatus. Wanted to go in February (a nasty month in Iowa) but couldn't get it together. Best wishes to all.

Ed
 
After a beautiful February in Florida, March decided to get cooler. I've been in a lot of pain but the medical cannabis topical cream seems to offer temporary relief. I've met many new people in my condo by joining a Friday night card group.
 
Spring! Two weeks way. Mostly mild winter and grateful for it
Love ya all
Chally
 
WOW! Got to double dip here as I just noticed this is the 1,000 post for me!

Thank you all for being here for me I hope it was a two way street.

Love you
Chally
 
Congrats Chally. We are grateful for all you do.

Another storm coming today here. This one is snow along with the high winds. Hoping the lights stsy on this time!
 
Still here. Thinking about you, Nikki. Stay warm and safe.

I'm getting a haircut today. The shorter, the better.
 
Congrats Chally!
Stay safe, Nikki.
And there you go Kim with your Jamie Lee Curtis doo.

I still can’t believe I have ALS. The reality is hitting me. I just want my old life back. Why can’t I be a DIHALS and you can just tell me to go away?

I did see a really awesome PT today for tightness in my right hip. She understands ALS :) and hopefully can help me get a little more mileage out of that hip while I can still walk, as well as reduced pain.
 
great original thinking, Karen re your dihals comment.

happy international womens' day pals and cals ! !
 
I continue to do well, though my breathing kind of sucks.

Based on some overnight pulse oximetry studies, it was suggested I try supplemental nighttime oxygen. It has made a significant difference. My pulse ox is consistently 95 to 98 at night (it was dropping to 80). I seem to have more energy during the day, which is great. We are still trying to sort out the humidifier part, though. Either I dry up or I wind up inhaling water. We will eventually find the just right spot between those extremes.

I have also developed tendonitis in both biceps. That was certainly unexpected and pretty unpleasant. I am doing physical therapy twice a week focused on passive range of motion.

I also saw a physical therapist who specializes in breathing. She was quite surprised at they way I breathe. At the end of the appointment I asked if I should schedule another. She said "no". Not a surprise, really. But, I had built up some hope that we could change the way I breathe a bit.

Other than that, things are going well. We hosted a visit by my sister which was quite pleasant. I have made great progress on my slide scanning project, which as been tremendously enjoyable.

Steve
 
Got 6 in snow not to bad.

Hope you folks in NE are ok

Hawkins is free!
 
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