Clinic Day again, darlings. It’s virtual today, so I’m able to liveblog it. Hehehe. I apologize for not being very faithful with these updates lately. The changes I see are very slow and gradual, but I realize if I haven’t given updates for awhile, progression can seem very abrupt to YOU. So.
Spoiler alert: Not much has changed! I’ve had this 3-5 year life expectancy disease for almost 7 years now and I’m still able to walk a little. Things are, blissfully, going slooooooooooowwww.
First appointment: Nursing! I really like my nurse. We did the ALS-FRS test, which we did a week and a half ago, so SURPRISE! no changes. I didn’t have any new demands or needs, so we mostly talked about how miserable traveling in a power chair is.
Second: Pulmonary! I got my usual headpat for being good about using my AVAPS, which as usual feels a little undeserved now that I NEED it, otherwise I have nightmares about suffocating and keep waking up ’cause I’m not breathing well. He still doesn’t think I need a feeding tube yet; normally he suggests them once breathing gets below 50%, and last we checked I was 46%. My progression, though, is so slow he’s not worried about it just yet. We’ll check my breathing soon, it’s a whole ordeal and a separate appointment to get that done now, thanks to Covid. Fucking Covid. We also spoke briefly about an ALS Association event I spoke at, since he was there. I got a headpat for that, too. Yay.
Third: OT/PT! We didn’t have much to discuss because again: slow progression. I had some questions about Hoyer lift logistics, about eventually needing to get transferred to the toilet – do they have slings that uh..accommodate that? They do. My only experience with the lift (transferring to the exam table during research appointments) involved a very coccoon-like sling and I didn’t know how TF I’d transfer in that to a toilet or commode. Answer: I won’t! There’s a much easier kind of sling. I don’t need it yet or soon, but it’s the kind of thing I wonder about as transfers get a liiiiiittle bit harder month to month. So I ask now. Otherwise, the appointment went very quickly. I was reminded that hey, dummy, wrist braces exist, in fact I own a pair, and I really very should USE THEM when holding eating utensils especially. They make things Much More Stable.
Fourth: Palliative Care! This is an appointment I don’t technically need yet, not at all, but I haven’t talked to him since 2017 so I figured a check in chat wouldn’t hurt. When last we spoke, we set up my POLST (Physicians Orders for Life Sustaining Treatment – a document that tells medical professionals how far to go in order to save my life (spoiler alert – not very), kind of an Advance Directive but with a lot more weight to it)). I found out that they do NOT have a record of my Advance Directive on file, so it’s very good we spoke today. I’ll get that right over to them. The nurse is a very pleasant man to talk to, so it was lovely to chat.
Fifth: Dietician! It wasn’t the usual lovely person, so we didn’t get to chat and I was DENIED my chance for new kitten photos. Boooo. Her stand-in was a very nice woman but we only had official stuff to talk about, so it was short. Just: Keep doing what you’re doing, call us if something comes up.
It’s a recurring theme on Clinic Day. Which is a very good thing.
Sixth: Speech therapy! It WAS the usual lovely person, and I hadn’t seen her in a YEAR, so it was good to check in with her. It was another whirlwind appointment, just: make these funny faces, eat something so I can see you swallow, drink something so I can see you swallow, everything good? OK see you in 3 months.
Seventh: Social Worker! A fifteen minute chat to see if the ALS Association can do anything for me at the moment. I thanked them for the loaner power chair, which they’ve collected. Seriously. The loan of that chair saved SO much grief and damage to my own. I’m so grateful and they are worth every dime I’ve raised on their behalf. Speeeeeeaaaaaking of whiiiiiich….
***WARNING: SHAMELESS PLUG AHEAD***
So, the Walk to Defeat ALS is happening in May this year, and it’s a virtual walk again. If ya happen to have a coupla spare bucks, maybe donate to my walk?
***HERE IT COMES***
***WE NOW RETURN YOU TO OUR SCHEDULED POST. THANK YOU***
Eighth: Neurologist! I like my new doctor. Dr. Goslin retired rather suddenly (to us; she’d been planning it for awhile apparently) late last year. I miss her like whoa, but the new one seems to know her shit and I trust her. I don’t envy her position, though, of having to fill a particularly beloved pair of shoes. There was nothing new to report on the ALS front, but there IS another drug we could try to get rid of the daily headaches, so we’re gonna give that a shot.
And with that, we’re done! 3 hours of visits in one go, rather than eight separate appointments. I LOVE THE CLINIC DAY MODEL. IT’S SO GOOD.
And now…I am gonna take a freakin’ nap.