Breathing got better?

Status
Not open for further replies.

karzy81

Active member
Joined
Nov 7, 2017
Messages
52
Reason
Loved one DX
Diagnosis
03/2018
Country
CA
State
ON
City
Thornhill
My dad was diagnosed this past March with ALS but we are sure he had it for about a year or so prior. He just went back this week for his three month check and his breathing went from 86% to 92%. They said that is rare. Anyone else experience that?
With that being side he has become weaker in the legs and in the upper body. He walked to his last appointment three months ago with a cane and now we had to wheel him in (he can use a walker but the wheelchair is much easier ). Just thought I would share the experience and see if anyone else had progressed in regards to their weakness but stayed the same everywhere else. I should also mention he is eligible to start in phase 2 of the Pimozide trial or in phase three of another trial that’s in its third phase. The one in phase three is some kind of heart medication, I think it’s called Levosimendan. I don’t know if anyone knows what I’m talking about. This is in Toronto Canada.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,620
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I wonder if there was a bit of a learning curve? Also did they input the same height? A small difference does alter the calculation. I have had numbers vary this much between a study and clinic. One uses height in shoes and the other in stocking feet

Also fatigue and a full stomach can give you slightly worse readings
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,374
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I was thinking that he could have been far more fatigued that last time, and if he walked into the room it could have affected his numbers.

It's a really good example of how numbers are just numbers - they are helpful but not fully reliable. It will be interesting to see what they find next testing.
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
795
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton
I agree with the others. It's not a huge difference in percentage, and learning how to do the test, or being more fatigued that first day could account for it. Also other little things, like maybe he didn't get as good of a mouth seal the first day, or was feeling anxious due to all the stress of first clinic visit etc.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,743
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
I have all the equipment to test at home. I definitely do better in the morning on an empty stomach. Sometimes I do better on my back than sitting up. I'm all legs and very short waisted so that might be why. I also do much better if I precede the test by blowing air into my lungs with my cough assist or breath stacking.

Every hospital/clinic I've been tested uses different numbers. Mayo Clinic has the most sophisticated test and it lasts over an hour. They put more emphasis on slow vital capacity, MVV, MIP, MEP than they to FVC.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
2,916
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
I have received different results depending on posture and what I was sitting on at the time as well. First time I was more hunched over, subsequent times I was sitting straight up- and my numbers improved minimally.
 

GregK

Moderator emeritus
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
City
Colorado Springs
The trend is more important than the individual numbers.
 

grounded

Active member
Joined
Sep 25, 2012
Messages
38
Reason
PALS
Diagnosis
12/2011
Country
US
State
PA
City
Baden
Doesn't age play into the calculation? My lung function is measured every 6 mos at clinic, & I seem to do better closer after a birthday than later on. Birthday is August 2. 7/30/17 just before adding a year of age FVC 100%, 8/10/18 just after adding a year of age FCV 108%. I don't think I got better.
 

karzy81

Active member
Joined
Nov 7, 2017
Messages
52
Reason
Loved one DX
Diagnosis
03/2018
Country
CA
State
ON
City
Thornhill
I guess I just found it strange that it didn’t drop significantly. My father is 71 and I would think he gained weight since his last visit. I know that even the fact that it was a different person performing the test can affect the test results. Hey who knows, maybe the Edaravone is working
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,374
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
The only predictable thing about ALS is how unpredictable it is :)
 

jethro

Distinguished member
Joined
Nov 2, 2017
Messages
344
Reason
PALS
Diagnosis
09/2017
Country
HR
State
Croatia
City
ZAGREB
as guys said, you should count on tolerancy which is 5%+-, was it on a same machine - volume IS volume, but valve IS NOT VALVE, was it at the same time, was he exhausted, hungry, sleepy etc...
 

John1

Very helpful member
Joined
Feb 25, 2006
Messages
1,028
Diagnosis
10/2000
Country
CA
State
NL
City
Newfoundland
I wouldn't read too much into the 6% improvement. As others have said, time of day, how you feel that day and how you take the test can all affect the results. I have seen a modest improvement a few times at 6 month intervals but the overall trend has been down.
 

jethro

Distinguished member
Joined
Nov 2, 2017
Messages
344
Reason
PALS
Diagnosis
09/2017
Country
HR
State
Croatia
City
ZAGREB
@tillie, are you aware what you wrote between a lines (even you wrote it in a single line)?

"The only predictable thing about ALS is how unpredictable it is "
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,743
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Doesn't age play into the calculation? My lung function is measured every 6 mos at clinic, & I seem to do better closer after a birthday than later on. Birthday is August 2. 7/30/17 just before adding a year of age FVC 100%, 8/10/18 just after adding a year of age FCV 108%. I don't think I got better.
Grounded, Did your absolute numbers decrease, increase, or stay the same? I'm just curious since you have been around so long and have excellent numbers. Do you do breath stacking or other breathing exercises. Again, just curious.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,543
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
To give another example of how the pulmonary function tests can be affected by other factors — my numbers went down appreciably from May to August (FEV1, FVC, etc.).

But then in November, the numbers improved to nearly what they had been the previous May.

Looking back, our region had been blanketed by thick wildfire smoke last August, and I think this caused a temporary fall in my numbers. I notice I have more difficulty breathing when it’s smoky.

You have to take the numbers with a grain of salt. It’s the overall trend over several visits that matters most.
 
Status
Not open for further replies.
Top