- 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
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