jellis86
Distinguished member
- Joined
- Jun 22, 2012
- Messages
- 256
- Reason
- PALS
- Diagnosis
- 02/2013
- Country
- US
- State
- WI
- City
- Eau Claire
Hello All,
I went to my first ALS clinic appointment at the VA Hospital in Minneapolis, MN.
1st off let me state that the level of care I received there, for the most part, was as good as or better than the ALS clinic at the Mayo Clinic. They both have their good and bad points, but I was impressed with how knowledgeable and courteous each person was.
The clinic ran from 8:30 AM until 3:30 PM, nearly twice as long as my clinic appointment at Mayo in Feb.
Two things I didn't like, they performed a Pulmonary Function Test at 8:30 AM and my FVC was 60%.
It was considerably lower than the test I received just a few weeks ago at Mayo, 2:00 PM, when it was 71%. The main difference I believe is what time of day the tests were administered. I have read that we all have lower FVCs early and late in the day and it's best around noon, or slightly afternoon.
I'm not saying that the test isn't accurate, but my breathing has not gotten any worse in the past few weeks. In fact I have noted a slight improvement since being on my 2 most recent meds, Rilutek and Amitriptyline. I started both back in Feb. 2013. I especially notice an improvement while laying on my back, before it was quite labored, now much less noticeable.
Wouldn't I be able to notice a reduction of 11% just in my day to day activities?
The other thing that kind of irked me was the speech pathologist telling me that Bulbar onset patients never progress to the point of needing eye gaze, or other types of text to speech devices. He said Ipad and other such devices are all the farther Bulbar ALS patients get to since they never completely lose their ability to speak somewhat....I assume he meant before they die, although I didn't inquire further.
Is that correct, Bulbarians (sp) die before getting to the point of needed advanced communication devices? Or did he mean Bulbar patients speech never progress to the point of needing them? The latter I find doesn't fit what I have read here and other places.
Just curious on these issues.
More snow for us here in northwest WI tomorrow....I'm sick of it?
I went to my first ALS clinic appointment at the VA Hospital in Minneapolis, MN.
1st off let me state that the level of care I received there, for the most part, was as good as or better than the ALS clinic at the Mayo Clinic. They both have their good and bad points, but I was impressed with how knowledgeable and courteous each person was.
The clinic ran from 8:30 AM until 3:30 PM, nearly twice as long as my clinic appointment at Mayo in Feb.
Two things I didn't like, they performed a Pulmonary Function Test at 8:30 AM and my FVC was 60%.
It was considerably lower than the test I received just a few weeks ago at Mayo, 2:00 PM, when it was 71%. The main difference I believe is what time of day the tests were administered. I have read that we all have lower FVCs early and late in the day and it's best around noon, or slightly afternoon.
I'm not saying that the test isn't accurate, but my breathing has not gotten any worse in the past few weeks. In fact I have noted a slight improvement since being on my 2 most recent meds, Rilutek and Amitriptyline. I started both back in Feb. 2013. I especially notice an improvement while laying on my back, before it was quite labored, now much less noticeable.
Wouldn't I be able to notice a reduction of 11% just in my day to day activities?
The other thing that kind of irked me was the speech pathologist telling me that Bulbar onset patients never progress to the point of needing eye gaze, or other types of text to speech devices. He said Ipad and other such devices are all the farther Bulbar ALS patients get to since they never completely lose their ability to speak somewhat....I assume he meant before they die, although I didn't inquire further.
Is that correct, Bulbarians (sp) die before getting to the point of needed advanced communication devices? Or did he mean Bulbar patients speech never progress to the point of needing them? The latter I find doesn't fit what I have read here and other places.
Just curious on these issues.
More snow for us here in northwest WI tomorrow....I'm sick of it?