View Full Version : How long to live after diagnosis?
What is the average length of time that a ALS patient lives after he/she has been diagnosed as having ALS? I recently read of two cases where it was only months after being diagnosed that these people died from ALS. Do people ever live two, three or more years after they've been diagnosed? What's the longest anyone here has had ALS?
GWB -
I met a guy at our ALS Clinic who was diagnosed 15 years ago and was walking with the aid of a cane.
Liz
bogey
02-13-2007, 01:14 PM
GWB they say 2-5 years after diagnosis but some go after 6 months and some after 6 years and the two average out in the 2-5 year group.my friend started symptoms 1992 was dx in 94 can still eat and talk and use computer but is using wheelchair. bogey
ruby ben
02-13-2007, 02:15 PM
Quote from Dr. Neil Cashman - "80% of those with ALS die within 5 years. My record with an ALS patient was 33 years. Some patients are turtles and some are rabbits, referring to life expentancy.".....................ruby from vancouver (surrey)
I think we have 2 on here that were diagnosed in 1991. I was dx'd Oct. 03 and still upright walking with a walker and eating fine. We have had 2 on here this past couple of months that have lasted only 5 to 12 months. No telling for sure how long you will have so make the best of each day.
AL.
bogey
02-13-2007, 03:49 PM
read a post on average after dx by a group in texas 1986-96 was3.3 years from 1996-06 was4.4 years go figure?
sacchick
02-13-2007, 05:52 PM
you never know how long you will have, so please take advantage of every day you have. My mother just passed away from this, 11 days after her diagnosis.
quadbliss
02-13-2007, 06:04 PM
What the doctors don't tell you when quoting those lifetime averages, is that people who choose life extending measures like a ventilator are not included in the calculation. How long you live is up to you. If you can adapt to this new way of living and build a meaningful life for yourself, it is entirely possible to go on for much longer and enjoy it. The Astro-Physicist Stephen Hawking has lived 40 years with ALS.
Mike
Thanks to all of you who responded to my question. I am really amazed at the wide range of time people live from the time of their ALS diagnosis. All of you gave me some very good information and input on this and I really appreciate it. I am waiting for the ALS clinic to call me for my appointment. I don't know if I have this disease or not but I do experience many of the symptoms, not to mention my dad died of ALS 20 years ago. Hopefully, I will have some answers soon. In the mean time, it is good to know there are folks like you who I can turn to for answers and support. Thanks again to each one of you!
Howdy
02-13-2007, 07:35 PM
Gwb, I've had ALS for over 7 years now and I can still do most anything I want to. I have muscle deterioration in my right hand, arm, neck, and shoulder but I can still use them. May God bless you and don't worry about how long you have just try to live life to the fullest every day. Howdy
It would be nice to have some diagnostic tool to measure progression rates. There must be certain reasons why some people live longer and others deteriorate faster. Findings these markers, however, is the problem. Howdy, for example, has lived 7 years with this diagnosis and apparently only has one limb involvement and can still use the limb after 7 years!
Lorie
05-25-2007, 05:42 PM
This is an amazing story: Stephen Hawking.
http://www.hawking.org.uk/text/disable/disable.html
We can't give up just yet. I ask my brother everytime I leave from visiting him, What prescription do we need today, he replies: Will and Attitude. I have him trained. :lol:
Lorie
