We had what's called a "clinic" yesterday. We see everyone in one day. Dietician, physical therapy, social work, doctor, speech therapist.
The biggest change was in his breathing capacity. Last clinic his lung function was at 81%. It's now at 61% That's a 25% decrease in his ability to breathe. I can't imagine what 3 more months will bring.
Remember that ALS is the degeneration of the brain's ability to send info to motor neurons connected to spinal cord and then to muscles. Your muscles waste away.
There are two forms of ALS: bulbar and limb onset. Bulbar affects swallowing, speech and breathing. Limb onset paralyzes your arms and legs.
Luther has limb onset. He's gone from having a little trouble lifting his right arm to being in a wheelchair full-time over the course of 18 months.
Changes in ALS people are generally subtle. Even in the beginning when it seemed like we were hit with a ton of bricks but really, the official diagnoses took six months.
We went from thinking he had rotator cuff issues because he couldn't lift his right arm as high as before to getting steroid injections in his back to wondering if he had Lyme disease.
For sure it's been a drag going from there to here. But when you think about it, lots of folks are in wheelchairs. You learn to adapt.
He agrees that if we could freeze him now in this stage, we'd be happy. He can talk to me, he still eats, he isn't drooling (don't forget your tongue is a muscle so it will eventually not function anymore which means you don't swallow all that spit and it just builds up all slimy and gunky in the back of your throat).
But this change - this 25% decrease in lung function - scares me. From 81% lung function to 61%. Still better than half, I guess...
The speech therapist is also concerned about Luther's ability to swallow:
- Chewing makes Luther tired.
- He immediately starts choking on crumbly food like toast. He has a delayed cough/choke thing going on after eating every meal.
It's a long explanation about food getting trapped in some secret vault in your throat at the back of your tongue.
You know when you swallow something that goes down the wrong "tube" and you start coughing/choking and your eyes water like crazy? That's exactly Luther's situation after every meal.
Sometimes it's just a little cough. Other times I think I'm ready to call 911. It's awful to listen to. I can't imagine what it's like for Luther.
It seems the bulbar part is creeping its way in. I've felt fairly safe in my ALS bubble because it's only been the limb stuff so far. Bulbar onset generally means a faster decline.
Luther says he's not worried. He didn't want to know test results and he says he feels fine.
Mind you, I'm typing this at 4 am because he woke up coughing at 1:30. I had to get him up and vertical and once the episode was over, I put him in a chair to sleep. He woke up at 3:30 and I put him to bed.
He's thinking he doesn't even want to go to clinics anymore. What's the point? He feels how he feels. He doesn't need numbers to verify where he is on the degeneration scale. He knows where he is.
But we have to go to continue getting drugs and equipment.
We have a breathing assist machine. Not to belabor the muscle thing but breathing is driven by muscular action. Using this machine will help keep lungs expanded.
(Side note: people have asked why Luther isn't going to gym to build up muscles if ALS is causing his muscles to waste away. Luthers legs still work a little. Plus his core. Why not do a few sit ups to build strength?
It's because the brain isn't "talking" to muscles anymore. Wouldn't matter if he went to gym, the brain wouldn't be able to let muscles know what's going on. Exercise tears or breaks down remaining muscle. Plus there's a whole conserving energy thing going on. Chewing makes him tired. Imagine what doing sit ups would do.)
The speech therapist ordered a cough assist machine which clears the gooey stuff out.
Bulbar onset has knocked and let itself in. He's an unwanted guest.
The changes are subtle so far. Enough to keep that undercurrent of fear close to the surface.
I guess it doesn't change anything in terms of our day to day. Maybe being aware he'll get tired faster? Doesn't matter, really. Life goes on.
Birds have started chirping! I just realized it's 5 am. My alarm is set for 6:30. See? The day isn't waiting for us to figure this out, for me to catch up on sleep. Best to put numbers aside and move along.