Status
Not open for further replies.

suzannj

Distinguished member
Joined
Jul 5, 2008
Messages
121
Reason
Learn about ALS
Country
US
State
NY
City
Buffalo
Hi Everyone,
I have been wondering a lot about this, and am hoping it's not too uncomfortable a topic, but if you can't ask a tough ALS question here then where can you? :smile:

It's about longevity. The 'average' survival time post-diagnosis is 3-5 years. But, is that only for PALS who do not opt for intervention such as feeding tubes, bi-pap and vents?

Is it at all accurate to say that if a PAL chooses to get a PEG tube, and then perhaps ultimately a ventillator that s/he can live indefinitely? (well, not forever but at least a more 'standard' life span than 3-5 years!)

Also, on a House repeat the other night, the main story was about a PAL. Dr. House didn't belive he had ALS and was administering different meds, etc. At one point he put his hand on the person's leg, and the patient said, "Wait! I felt that!" Which was the moment everyone realized he indeed did not have ALS. So, did they get that part wrong? I thought with ALS that even after you lost function of a body part, it wasn't truly paralyzed (as in no feeling at all) and that you can still feel people's touch, etc. ?

Thanks,
Suzann
 

ktmj

Distinguished member
Joined
Oct 17, 2008
Messages
421
Country
US
State
Dixie
City
Redneck
suzann, no diagnosed for me, but I've done waaayyy more research than I should have on this subject.

Some sources say that survival is 3-5 years after symptom onset. I've seen other sources say mean survival after diagnosis is 18 months. The thing is it is just widely variable. Some have a fast progression - others a slow one and even the docs can't make an accurate prediction of lifespan.

I suppose with 24hr diligent care, plenty of financial resources, etc. you could survive indefinitely with a peg and vent with complete paralysis. But then there are usually complications that arise at some point. That's why those decisions are so tough and personal. I'm sure joel will relate his vent experience at some point on this thread.

Paralysis does not mean you can't feel, just that you can't move.

p.s. I love House, but you certainly can't depend on it for any reliable medical facts.
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
Don't even get me started on the inaccuracy of "House"!

Re: longevity, some of it depends on what life supporting measures a person is willing to use, like a PEG and trach, but, there are still complications that arise as the body grows weaker, less ability to stave off infection, etc. so having intervening measures is going to obviously help, but they're not the answer to everything.

My own particular concern is that my vagus nerve is compromised beyond its motor function. So far, the non-motor segment is "just" my digestion. However, this nerve also is involved in controlling heart rate and blood pressure too, so , I honestly don't know what is done if that part konks out as well.

There is also a question of quality of life.

I continue to believe that there is more than one cause for ALS and also several different conditions labeled as such, that actually are quite different. That may be one of the reasons that one person will progress at a quicker or slower rate than another.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
i firmly believe als is not one single type or strain,i think its like ms.
you can get some who progress quickly and others slowly.
some live for a short time others 10,20 or 40yrs like mr hawkins (who was told he only had a few years to live and sent home with a stash of vitamins).
i think alot of web info is outdated in stastistics,many pals are living longer due to better care and assistive devices.
pals should concentrate on getting the best out of life and living it to the fullest.
many with a positive outlook are the ones who live past the 5yr mark,we have many on the forum.
 

planningguy

Senior member
Joined
Jun 5, 2008
Messages
556
Country
US
State
Wyoming
City
Sheridan
There have been a couple of long term PALS that have commented that it seems to come down to a combination of attitude, intervention, and chance. Probably best to let them speak to that, as my experience is pretty much nil.

I guess my reason for responding is a little different. I was just curious why the interest. Has something changed in your situation? I thought you were still kind of just trucking down the diagnosed road.

Take care,

Robert
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Suzann ... I bet that "survival" prediction of 3-5 years has been kicking around since Lou Gehrig died. Once a statistic gets announced in print (or online now) it goes on and on and on. (Publications are still quoting that 10% of the population is gay, which was a guess to begin with, and actual statistics show is waaaaay off-base.)

My impression is that the ALS figure was a "guesstimate" 30 years ago, and includes all PALS. Just one fact shows how meaningless it really is: there is no break-down of age of onset. I suspect that someone with multiple degenerative illnesses who gets PALS at age 85 isn't going to live as long as someone who gets ALS at 50 and who is active, healthy and strong. But apparently, everybody's lumped together ... those with trachs, those with PEGS, and those without, the frail elderly and the healthy younger patient.

Hopefully, when they get the national registry up and running, we'll find out some hard facts about progression, and the effects of PEGS, Bipaps and traches on survival rates.

My oh-so-humble opinion is that controling symptoms as best you can and using all the medical tools available is a smart thing to do.
:)...U
 

hopingforthebest

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
City
Mays Landing
surviving and living with ALS

My husband has been on hospice since May for his care issues. The nurses that care for him have said that the majority of ALS patients that have passed, died from complications of other illnesses that they had prior to being diagnosed with ALS. Example: heart disease, diabetes, COPD, CHF. Also, the classification of a patients ALS, that progresses more quickly than others, has alot to do with survival. He was told even with his low FVC's, his bipap machine can meet all his breathing needs for many many years. So we are hoping and praying for extended quality life until the stem cell gets FDA approval. Won't that be a happy day for all? :razz:
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
A lot bepends on a persons attitude, if you want to live and have a good attitude you will live a long time. If you let the doctors convince you that you will be dead in 2 years you probably will be. A positive attitude goes a long way - being bitter, angry and depressed will guarantee an early grave!

To live a long time will require a PEG and a tracheostomy and vent. But getting these life saving devices don't have to limit your activities unless you allow it. I get around and do more things with these devices than I did before! I got my life back after getting a trache and vent because I no longer have to struggle to breathe.

With the help of a powerchair I do anything I want and can enjoy life again! Some people simply give up and refuse to go on living - I have chosen to endorse technology and get on with my life!

I plan on being around for at least the next 20 years!
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
yes, joel, I'm right there with you!

Only difference is, I "bought" the extended warranty with my ALS-you know the LONGER you stretch out the payments, the cheaper it is.

I'm the bargain shopper, so I have the 30yr warranty!8)

blessings to all,
-b
 

Jennifer51

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
a simple analagy...I have 3 children, and when they were small, one got chicken pox, then the next and then the last one all over a few weeks Without doubt they all had chicken pox, but one was covered in spots and really unwell, one had a reasonable amount and one had only a few spots and was hardly off colour.... different bodies reacted differently...and so it is with als...except I am a firm believer that we are all lumped together as having ALS even if the doctors arent 100% sure...I think in the future the disease will be more defined and some types even re named as something else. I have come to the conclusion the nuero science is still largely a mystery to the doctors. They only know a fraction of what it is all about. I have been told by several doctors that ATTITUDE can make a huge amount of difference...so I am going on that basis and will fight as long as I am able and take any help I can along the way. Like brendapals I have asked for the 30 year warranty.
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
I can't help but think that there are some out there with ALS that are looking at what the caregiver(s)/loved ones will have to endure in the later stages of the disease and opt out on getting trached, vented and peg'd just to shorten the whole experience of the disease.

This may sound like a morbid way of thinking to many but I'm sure it goes on.
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
I agree with all that was written in response. I just wanted to add, that I think its not only the attitude about wanting to survive, and the willingness to solve problems that can be solved, but, to try to stay ahead of the game ~ getting oneself geared to knowing that adaptations will need to be made. I've said it before, but I tell you, that Toto washlet toilet/bidet fixture is something that would be nice for anyone and, (other than the cost, of course) it is something I look forward to as an upgrade to the bathroom, rather than a concession to my disease. I also had just shared with someone, about how it was weighing on me that if my legs continue to weaken at the rate they are now, I am truly going to have to face not being able to be on them for extended distances in the not too distant future. And it upset me, because it wouldn't be "just" a wheel chair, it would be the vehicle to transport it, etc. So, I did an internet search, and found that there is indeed a lightweight electric wheelchair, that breaks down easily into three pieces, the heaviest being 35 pounds. The site showed a photo of it being loaded into a Mini Cooper. I have the Mini convertible, and I don't think it would fit in there, but the point was it would fit easily into most normal sized vehicles. I just thought it was cool that they chose the mini for the demo :) Now that I know there is something out there like this, I can put that worry away, I can lock it up and put it where I don't have to think about it because I know that I can still have independence without as many huge changes, whether it be soon, or much later.

Change can be hard, but understanding that making adaptations that are possible will make life better, one would think would be a "given" but I'm not sure it is for everyone.
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Who doesn't love a Mini-Cooper? I put them up there with a vintage VW Bug as far as being a fun car to drive. That is really interesting that you can get a wheelchair into one of them.
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
oh yeah, and I've got the 71 VW Bug...........:mrgreen:

rose, wouldn't we have a good time with 2 of those wheelchairs in our little cars!8)8)8)
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
Brenda, Yes we could! And maybe we could run through a few drive- thru restaurants while we're on the road just to liven up someone's day 8) .

I want to find out more about that chair. I'm thinking it could be a chair just for going places, and then eventually, if it progresses to where I need one, have another that stays in the house.

btw, I saw your post on another thread about the little house you guys just finished. I hope you post photos of it!
 
Status
Not open for further replies.
Top