ALSFORUMS.COM   - ALS/MND Support Group   - Fibromyalgia Support Group   - PLS Support Group   - PBP Support Group   - PMA Support Group   -  
Old 09-10-2006, 04:33 PM   #1 (permalink)
New Member (Say Hi)
Registered Member
Join Date: 2006
City: Atlanta
State: Georgia
Country: USA
Posts: 77
Pearl is on a distinguished road
Default Question: about progression of ALS (how fast? )

Can anyone tell me if symptoms of ALS stall or slow down after a point?

Or, once a person is diagnoised, is this a rapidly progressing disease?

My friend was diagnoised only four weeks ago, but I see a marked change in him (where as 4 weeks ago, he had a slight speach issue and looked "tired" - now I notice a much more pronounced speech issue, tremors in the hands, some difficulty with movement (slower, etc...) - some of this could be due to meds he is currently on. But, it seems like he is experiencing rapid changes.

How fast does this disease progress? I know he has been told the standard '2-5 years' - - I know no one has a crystal ball, but does anyone have any better insight?. What does that mean? Is there a range of disease progression? Thanks.

Pearl is offline  
Old 09-10-2006, 06:44 PM   #2 (permalink)
Very Helpful Member
Registered Member
 
John1's Avatar
Join Date: 2006
City: Newfoundland
State: NL
Country: CA
Diagnosed: 10/2000
Posts: 1,010
John1 is on a distinguished road
Default

Quote:
Originally Posted by Pearl
Can anyone tell me if symptoms of ALS stall or slow down after a point?

Or, once a person is diagnoised, is this a rapidly progressing disease?

My friend was diagnoised only four weeks ago, but I see a marked change in him (where as 4 weeks ago, he had a slight speach issue and looked "tired" - now I notice a much more pronounced speech issue,.... Is there a range of disease progression? Thanks.
Pearl,
bulbar symptoms, particularly speech, can be quite erratic. Speech may worsen for a prolonged period and then improve markedly. Limb progression, on the other hand, tends to be more consistent with fewer, or no, pronounced reversals.
John1 is offline  
Old 09-10-2006, 07:51 PM   #3 (permalink)
New Member (Say Hi)
Registered Member
Join Date: 2006
City: Atlanta
State: Georgia
Country: USA
Posts: 77
Pearl is on a distinguished road
Default

Thank you so much.

If a person with ALS decides not to go on a vent - how does this affect their expected "time left"? He is willing (and already is, at night) to use Bipap.
Pearl is offline  
Old 09-10-2006, 10:55 PM   #4 (permalink)
Al
Extremely Helpful Member
Registered Member
 
Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Posts: 8,030
Al is on a distinguished road
Send a message via Yahoo to Al Send a message via Skype™ to Al
Default

If you need it and don't go on a vent you will have a short time. A Bipap can keep you going for quite a while though. I've been on it for more than a year and a half and my breathing hasn't changed much. I just use it night or when I lie down to watch TV or nap. Some on the forum are using it 24/7 and it is keeping them going. Once again we are different. Works well for some and others need a vent to keep the lungs going. Sorry I couldn't be more encouraging. AL.
Al is offline  
Old 09-10-2006, 11:58 PM   #5 (permalink)
New Member (Say Hi)
Registered Member
Join Date: 2006
Posts: 24
grp_believes_in_God is on a distinguished road
Default

AL, WHat are the signs that tell you that bipap is needed ? Dad coughs a lot, but I think its mostly due to salivation. Are there any specific signs to look for ?
grp_believes_in_God is offline  
Old 09-11-2006, 12:40 AM   #6 (permalink)
Al
Extremely Helpful Member
Registered Member
 
Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Posts: 8,030
Al is on a distinguished road
Send a message via Yahoo to Al Send a message via Skype™ to Al
Default

I found I was struggling to get a breath if lying flat on my back. Right side wasn't bad and left side was a bit worse. Now I can't even lay back in an easy chair or I am struggling to breathe. If talking fast and you are breathing heavily it is another sign and being short winded going up stairs is not good either. There may be other signs as well that others have and a plain old pulmonary function test will tell you if your lungs are in bad shape. Hope this helps. AL.
Al is offline  
Old 09-11-2006, 10:13 AM   #7 (permalink)
New Member (Say Hi)
Registered Member
Join Date: 2006
City: Gainesville
State: Ga.
Country: usa
Posts: 7
davis06 is on a distinguished road
Default bulbar als

Al
I have bulbar als and my breathing sounds just like yours, bipap I youse just like you said. I was wondering did you start of with breathing problems, and can you still swallow good. I still swallow good but they want me the doctor at the clinic to get a
peg. Thanks, Davis
davis06 is offline  
Old 09-12-2006, 12:33 AM   #8 (permalink)
Al
Extremely Helpful Member
Registered Member
 
Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Posts: 8,030
Al is on a distinguished road
Send a message via Yahoo to Al Send a message via Skype™ to Al
Default

Hi Davis. I was diagnosed in Oct of 03 with limb onset symptoms. I didn't need the Bipap until Jan of 05. I can still swallow fine and talk but do notice getting a bit tongue tied sometimes. Are you losing weight? The docs will sometimes suggest a feeding tube if you are losing weight even if you can still swallow OK. They figure you can supplement your meals with the tube and it is there when you start having problems. Hope this helps. AL.
Al is offline  
Old 10-12-2006, 10:49 AM   #9 (permalink)
New Member (Say Hi)
Registered Member
Join Date: 2006
City: Wethersfield
State: CT
Country: USA
Posts: 28
pamwagg is on a distinguished road
Default Bulbar ALS and PEG

Feeding tubes, PEGs, are usually inserted before respiratory function goes below 50%, due to problems with anaesthesia encountered after that cut-off point. That may be why the doctor suggested a PEG even when swallowing is not a big problem. My friend J has bulbar and respiration of lower than 40% by now, just discovered as his disease is progressing so rapidly this was his first pulmonary function test. His PEG will be inserted on Tuesday but it is risky.

My question is, is anyone with primarily bulbar symptoms considering a vent? Why or why not? I need some advice to pass on to J. who is overwhelmed by the decisions that must be made soon.
pamwagg is offline  
Old 10-12-2006, 12:09 PM   #10 (permalink)
Member
Registered Member
 
terri's Avatar
Join Date: 2005
Posts: 127
terri
Default

John 1 made the response about speech sometimes improving. This has happened with LB. Two months ago, I could not understand half of what he was saying. The last few weeks it has been much better as long as he keeps his sentence short. A welcome change but hard to understand how that happens.

terri
terri is offline  
Old 11-09-2006, 01:22 PM   #11 (permalink)
New Member (Say Hi)
Registered Member
Join Date: 2006
City: Ventura
State: Ca.
Country: USA
Posts: 18
shelli458 is on a distinguished road
Default

My mom tried literally everything(ie'clinicals,health food etc.).She lived 1 and 1/2 yrs.she died July 7th.I am still in shock.She chose not to do the ventilator and I am so proud of her.What courage!
shelli458 is offline  
Old 11-09-2006, 01:23 PM   #12 (permalink)
New Member (Say Hi)
Registered Member
Join Date: 2006
City: Ventura
State: Ca.
Country: USA
Posts: 18
shelli458 is on a distinguished road
Default

Quote:
Originally Posted by shelli458
My mom tried literally everything(ie'clinicals,health food etc.).She lived 1 and 1/2 yrs.she died July 7th.I am still in shock.She chose not to do the ventilator and I am so proud of her.What courage!
"There are those who really live,and those who sleepwalk through life"was mom's motto,and she really lived that year and a half!
shelli458 is offline  
Old 04-06-2009, 06:21 PM   #13 (permalink)
Senior Member
Registered Member
 
handinhand's Avatar
Join Date: 2009
City: Pagosa Springs
State: Colorado
Country: USA
Diagnosed: 02/2009
Posts: 903
Blog Entries: 2
handinhand is on a distinguished road
Default

Quote:
Originally Posted by shelli458 View Post
"There are those who really live,and those who sleepwalk through life"was mom's motto,and she really lived that year and a half!
Hi Shelle, I think your Mom was thinking of you. I was diognosed 4 weeks ago with Bulbar. I am having lots of trouble talking now . It was just two weeks ago that i noticed it in the afternoon. I feel alot like your Mom did. I want to live a quality of life for as long as I can. I want to do what ever it takes to do that,but i don't want to do anything that will get me to a place where my husband and kids have to do everything for me. Can you tell me a little bit about how your Moms progression went? I am also having trouble swallowing and breathing when I lie on my back. Wondering what will happen next. I feel sooooooooooooooo sorry for your loss,but i truly understand why she didn't want to extend her life for years being bed ridden... Of cours this is just how I feel. I think everyone is so different and I respect what anyone is striving for. Lin
handinhand is offline  
Old 04-06-2009, 07:06 PM   #14 (permalink)
Extremely Helpful Member
Registered Member
 
BethU's Avatar
Join Date: 2008
City: Los Angeles
State: California
Country: USA
Diagnosed: 05/2008
Posts: 2,663
BethU is on a distinguished road
Default

Terri ... you asked about speech improving. I found that when I have more energy in general, I am able to put more energy into my speech. I'm beyond the point where it does me any good now (my tongue has packed it in), but before it progressed too badly, speech therapy helped, as it showed me how to separate syllabals, and emphasize consonants, etc. And when I began taking a med for other bulbar symptoms (emotional lability), it improved my speech just from the overall boost in physical energy.

I do find that sometimes some other symptoms improve, too, despite what people say that ALS is a continual downward trend. I know improvements aren't permanent, but a week ago, I couldn 't use a paperclip if my life depended on it. This week, I can use them again. Several months ago, I had huge problems turning keys. In the last two months, I can use them again most of the time. Some weeks I can swallow better than in other weeks. Sometimes I can't sign my name, sometimes I can. I'm sure that our muscles are putting up a fight against ALS, and I think it's probably natural for things to change slightly.

Every case is different ... but I have experienced some small fluctuations, and am very grateful when they occur!
BethU is offline  
Old 04-07-2009, 12:52 PM   #15 (permalink)
Senior Member
Registered Member
 
Lorie's Avatar
Join Date: 2007
City: Mobile
State: Alabama
Country: Uni
Diagnosed: 00/0000
Posts: 548
Blog Entries: 16
Lorie is on a distinguished road
Send a message via MSN to Lorie
Default Progression

I know alot of PALS. Everyone has there own journey and time with this disease. My brother Tim's diagnosed was in March 04. Over five years now. The Neuro's here think after talking with his Neuro's at Cleveland Clinic and John Hopkins. He has Atipical ALS. A very slow progression. They think he has had ALS for 12-15 years. I know someone who has been on a vent for ten years and his 26th anniversary just passed. It just depends on the individual.

Lorie

Lorie is offline  
Closed Thread

Tags
als, ball, friend, ice, progression, speech, symptoms, symptoms of als


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

Advanced Search


Similar Threads for: Question: about progression of ALS (how fast? )
Thread Thread Starter Forum Replies Last Post
Question about ALS progression jkp General Discussion About ALS/MND 39 04-02-2010 05:44 PM
"So Much So Fast" PBS to air So Much So Fast - April 3, 2007 AlmasDaddy Event Announcements 18 07-12-2007 09:13 PM
so much so fast gilly People With ALS - "PALS" 1 10-18-2006 04:05 PM
why the progression is fast azita General Discussion About ALS/MND 4 01-30-2006 02:04 AM


    
   
   
   
   
  ALSforums - Get help and support with ALS/MND