Status
Not open for further replies.

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,636
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Whew, this disease never slows down, does it?

the next installment in the saga of rising blood sugars has Matt's glucose levels rising overnight. The Endo asked for 3am readings, and we've learned that his numbers drop very very low and then rise, which means his body is eating itself, so to speak. So, that high concentrate insulin may not be the answer...

In other news, we went to clinic yesterday. It was a long, but very productive, 5 1/2 hours.

Sadly, his arms and shoulders are wearing at a pretty brisk rate. Hand strength is down to 45 on both sides and right should went from 5 to 3+.

Happily, his breathing is still great, and his numbers actually went up a tiny bit. He's still doing his breath stacking and it's certainly helping.

He now has a splint for one finger that is curling. Oh, he's also got a foot box on the chair because his legs were falling off the footplates and he can no longer put them back on himself.

He is scheduled for an assessment with the technology folks to determine how best to keep him on the computer... It's 1.5 hour appointment to which we bring his laptop etc and he gets to try a bunch of other equipment.

Now that the nerve pain is going we have a schedule to wean him off of several medications, which is good timing as his tremors have gotten worse and we need to figure out what's causing them. Apparently 10 to 20% of PALS get Parkinson's like symptoms. Since his tremors started about the time the ALS became apparent this is not suprising me. At any rate, we now have a plan which may lead to eliminating some Meds and adding others... Yes, several of the meds he takes can cause tremors and others can treat ( or mask) them. Of course, the weaker his arms are the worse the tremors are...

Finally, we are heading towards the end of week one on the Lunasin trial. The biggest challenge has been finding something to mix it with that he can tolerate: Chocolate almond milk is the front runner so far.

Tonight he has an earache, so I guess tomorrow is finding a doc who will see him--hopefully without driving all the way it not he VA hospital yet again.

Oh...the best test he was given on the tremors was to have an adult beverage and see if they improve afterwards. Yep, the doc ordered a drink. See, clinic days CAN be fun!!

Oh, and we came away with a Dreamwear Nasal Mask for the Trilogy. So far he's happy--fingers are crossed!!!!

Becky
 
Wow Becky that is so much!

I hope this comes across right, but Chris did often say early in the disease that he wished he has lost his legs first.

As he lost his hands and arms early I can really identify with how this loss must be for you both. It's so hard to lose that kind of independence.

I hope they get those meds just right and it gives him some real relief, especially with the diabetic meds, that's so important!

Let us know how you go with the ear, poor Matt really the last thing either of you need is more doctor appts, prodding and pain.

It's great that they are putting all this effort into getting him the right mix of technology too. Communication is SO important!
 
Becky, Steve had tremors from the start also. There has been some research that shows parkinsons/ als links. Initially they called steve's postural tremors but then they mentioned with unknown etiology.

I am so glad you are getting help for communication. Once Steve couldnt type, and at that point using bipap 24/7, with a lot of confusion, learning something new wasnt possible. The tech people at our va were wonderful. Very knowledgeable and helpful.

Hope Matts ear feels better and you enjoy your get away☺
 
That's a lot of ground covered, Becky! Glad I logged on today--it's been awhile. But my PALS is right behind yours in progression it seems. I don't remember hearing others talk about tremors, but that was the very first symptom my guy had--dx "essential tremor." Now, they're a real challenge to feeding himself. Can barely do so, but probably shouldn't be. He aspirated 2 weeks ago, but insists on eating. New Vitamix is very handy--even ground up his pizza. (Hey, still tastes the same, right?) His endocrinologist has been a God-send to get blood sugar stabilized (at least for now), hope they get a handle on it for your guy.

I have to get the Tobii packed up and sent in today for the eye-gaze installation. Not sure that he'll be able to use it, but hope so. Confusion is pretty profound now. Anyway, I'm glad you're getting help/info from his health team. Hope the ear feels better soon and isn't anything serious. Sending good thoughts your way.
 
To three of my favorite Queens, thanks for being here for me!!

So, I didn't give him an ear infection by spraying water in his ear. He has, wait for it....the mumps. He is soooo isolated out here in the sticks, where did he get mumps? Well, those beautiful grandchildren did visit two weekends ago...

The doc is pretty confident, but I've asked for the blood test to confirm---just because ALS isn't a place where we guess and wait.

Bite me.

The aid says call when he's no longer contageous. Our good friends down the road say they're too old to have been vaccinated and never had mumps, and my pregnant daughter-in-law was here the weekend I suspect he was infected.

Currently I am consoling myself with pizza and a very sweet white wine. we will, as another of our good friends here suggested In a PM, do naked showering together tomorrow.

So far, no sign of swelling in the nether regions, where most adult men experience sever pain with this carry-over from and earlier age (my son asked, "what is mumps?").

I've warned the friends who were supposed to visit this weekend (my Portugese secretary when we were stationed in the Azores, her new husband, her sister, and her brother-in-law, another American serviceman stationed there at the time). My gut tells me they will cancel, and I don't blame them. Grrrrrrr.

On the up side, there will be no insisting going out, so we can stay home and perhaps enjoy a few days with each other at home--my idea of a great summer.

Becky
I told you I was the Queen of Everything....
 
I did mention in the other thread that I got the mumps when 7 months pregnant. Well it was unpleasant as I was already huge, and didn't need the extra puffiness, let alone the discomfort. But my daughter was born fine, just with tiny lumps on either side of her throat as my immune system was protecting her, even if evidence of the virus showed.

I guess the silver lining is you getting to stay home for a bit, always gotta look for them!
 
Yep, gotta love the silver linings!
 
Well enough already! Started to say, "If it's not one thing, it's another" and then realized, oh crap, "It is one thing AND another!" Hope it's a light case, at the very least. Glad you still have your sense of humor and those magical silver lining finding lenses. We sure have to keep those dusted off and handy, don't we!?! :shock:
 
Hope Matt is improving a little and you are lumpless xxx
 
Lumpless? No, I'm pretty lumpy these days, but that has nothing to do with mumps :).

Things are actually pretty relaxing around here. Today I cleaned out drawers in the bedroom in advance of moving my night stand out to make more room. Matt even got into the bed to watch a movie while I was working. It was nice.
 
Hmmm. Did I say things were relaxing right now? Big mistake...we should never tempt fate.

The motor on the ceiling lift is giving out. It's just over a year old. I spent a day earlier this week rearranging things to move my nightstand out of the bedroom so we'd have more space to care for Matt. It's a good thing I did, because the regular Hoyer won't fit in the bedroom without rolling beds around (they are both on wheels, thank goodness). I was congratulating myself when Matt pointed out the the Hoyer doesn't lift high enough to get him off the sleep number bed configured the way it was. Great. So, I dismantled the bed and the hospital bed that has been waiting in another room, and I swapped them. That was a fun way to spend the evening.

On a happy note, Matt's aide called to say that she had a blood test and is strongly immune to mumps so she can come back to work tomorrow. Of course, as the doc pointed out, she's already been exposed anyway.... Good, there will be two of us to fight with the hoyer in cramped conditions on carpet.

Now, if I could just get back to sleep.
 
Oh Becky, I so admire your positivity and strength. Very tough couple of weeks for you. I am so happy your aide can come back and help you. You certainly are a Queen!
 
Status
Not open for further replies.
Back
Top