Old 11-06-2018, 03:43 PM #1 (permalink)
karzy81's Avatar
New Member
 
Join Date: 2017
City: Thornhill
State: Ontario
Country: Can
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 36
karzy81 is on a distinguished road
karzy81 karzy81 is offline
New Member
karzy81's Avatar
Join Date: 2017
City: Thornhill
State: Ontario
Country: Can
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 36
karzy81 is on a distinguished road
Default Breathing got better?

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 thatís in its third phase. The one in phase three is some kind of heart medication, I think itís called Levosimendan. I donít know if anyone knows what Iím talking about. This is in Toronto Canada.
karzy81 is offline   Reply With QuoteReply With Quote
Old 11-06-2018, 03:56 PM #2 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,633
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,633
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Breathing got better?

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
Nikki J is offline   Reply With QuoteReply With Quote
Old 11-06-2018, 04:17 PM #3 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 11,041
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is online now
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 11,041
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Breathing got better?

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.
affected is online now   Reply With QuoteReply With Quote
Thanks from
jethro (11-08-2018)
Old 11-06-2018, 05:02 PM #4 (permalink)
Kristina1's Avatar
Member
 
Join Date: 2017
City: Grafton
State: MA
Country: US
Diagnosed: 03/2017
Interest: I have been diagnosed with ALS.
Posts: 483
Kristina1 is just really niceKristina1 is just really niceKristina1 is just really niceKristina1 is just really nice
Kristina1 Kristina1 is offline
Member
Kristina1's Avatar
Join Date: 2017
City: Grafton
State: MA
Country: US
Diagnosed: 03/2017
Interest: I have been diagnosed with ALS.
Posts: 483
Kristina1 is just really niceKristina1 is just really niceKristina1 is just really niceKristina1 is just really nice
Default Re: Breathing got better?

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.
Kristina1 is offline   Reply With QuoteReply With Quote
Old 11-06-2018, 05:37 PM #5 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,945
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,945
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: Breathing got better?

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.
KimT is offline   Reply With QuoteReply With Quote
Old 11-06-2018, 06:33 PM #6 (permalink)
ShiftKicker's Avatar
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,773
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,773
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
Default Re: Breathing got better?

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.
ShiftKicker is offline   Reply With QuoteReply With Quote
Old 11-06-2018, 06:55 PM #7 (permalink)
GregK's Avatar
Very Helpful Member
Forum Moderator
 
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,750
GregK has disabled reputation
♥ GregK GregK is offline
Very Helpful Member
Forum Moderator

GregK's Avatar
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,750
GregK has disabled reputation
Default Re: Breathing got better?

The trend is more important than the individual numbers.
GregK is offline   Reply With QuoteReply With Quote
Old 11-06-2018, 07:34 PM #8 (permalink)
New Member
 
Join Date: 2012
City: Baden
State: PA
Country: US
Diagnosed: 12/2011
Interest: I have been diagnosed with ALS.
Posts: 21
grounded is on a distinguished road
grounded grounded is offline
New Member
Join Date: 2012
City: Baden
State: PA
Country: US
Diagnosed: 12/2011
Interest: I have been diagnosed with ALS.
Posts: 21
grounded is on a distinguished road
Default Re: Breathing got better?

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 is offline   Reply With QuoteReply With Quote
Thanks from
KimT (11-15-2018)
Old 11-07-2018, 05:40 AM #9 (permalink)
karzy81's Avatar
New Member
 
Join Date: 2017
City: Thornhill
State: Ontario
Country: Can
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 36
karzy81 is on a distinguished road
karzy81 karzy81 is offline
New Member
karzy81's Avatar
Join Date: 2017
City: Thornhill
State: Ontario
Country: Can
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 36
karzy81 is on a distinguished road
Default Re: Breathing got better?

I guess I just found it strange that it didnít 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
karzy81 is offline   Reply With QuoteReply With Quote
Thanks from
ShiftKicker (11-07-2018)
Old 11-07-2018, 01:55 PM #10 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 11,041
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is online now
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 11,041
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Breathing got better?

The only predictable thing about ALS is how unpredictable it is
affected is online now   Reply With QuoteReply With Quote
Thanks from
jethro (11-15-2018)
Old 11-08-2018, 07:41 AM #11 (permalink)
Member
 
Join Date: 2017
City: ZAGREB
State: Croatia
Country: HR
Diagnosed: 09/2017
Interest: I have been diagnosed with ALS.
Posts: 171
jethro is on a distinguished road
jethro jethro is offline
Member
Join Date: 2017
City: ZAGREB
State: Croatia
Country: HR
Diagnosed: 09/2017
Interest: I have been diagnosed with ALS.
Posts: 171
jethro is on a distinguished road
Default Re: Breathing got better?

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...
jethro is offline   Reply With QuoteReply With Quote
Old 11-08-2018, 01:44 PM #12 (permalink)
John1's Avatar
Very Helpful Member
 
Join Date: 2006
City: Newfoundland
State: NL
Country: CA
Diagnosed: 10/2000
Interest: ALS dx in 2000; changed to UMN-dominant in 2012
Posts: 1,030
John1 is on a distinguished road
John1 John1 is offline
Very Helpful Member
John1's Avatar
Join Date: 2006
City: Newfoundland
State: NL
Country: CA
Diagnosed: 10/2000
Interest: ALS dx in 2000; changed to UMN-dominant in 2012
Posts: 1,030
John1 is on a distinguished road
Default Re: Breathing got better?

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.
John1 is offline   Reply With QuoteReply With Quote
Old 11-15-2018, 04:43 AM #13 (permalink)
Member
 
Join Date: 2017
City: ZAGREB
State: Croatia
Country: HR
Diagnosed: 09/2017
Interest: I have been diagnosed with ALS.
Posts: 171
jethro is on a distinguished road
jethro jethro is offline
Member
Join Date: 2017
City: ZAGREB
State: Croatia
Country: HR
Diagnosed: 09/2017
Interest: I have been diagnosed with ALS.
Posts: 171
jethro is on a distinguished road
Default Re: Breathing got better?

@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 "
jethro is offline   Reply With QuoteReply With Quote
Old 11-15-2018, 11:55 AM #14 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,945
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,945
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: Breathing got better?

Quote:
Originally Posted by grounded View Post
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.
KimT is offline   Reply With QuoteReply With Quote
Old 11-15-2018, 12:57 PM #15 (permalink)
KarenNWendyn's Avatar
Very Helpful Member
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,147
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
KarenNWendyn KarenNWendyn is offline
Very Helpful Member

KarenNWendyn's Avatar
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,147
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
Default Re: Breathing got better?

To give another example of how the pulmonary function tests can be affected by other factors ó 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 itís smoky.

You have to take the numbers with a grain of salt. Itís the overall trend over several visits that matters most.
KarenNWendyn is offline   Reply With QuoteReply With Quote
Reply

Tags
als, back, breathing, canada, dad, diagnosed, heart, trial, walker, weakness, wheelchair


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Breathing and BP starente15 General Discussion About ALS/MND 5 04-08-2015 12:12 AM
Breathing 101 Barbie General Discussion About ALS/MND 25 09-25-2013 05:47 PM
peg/breathing.. cris Current Caregivers (CALS) 15 01-29-2010 08:32 AM
breathing? sdsyd Do I Have ALS? Is This ALS? 2 06-20-2009 10:51 AM
Breathing billyd Do I Have ALS? Is This ALS? 6 11-28-2007 04:04 PM


All times are GMT -5. The time now is 01:20 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016