ALS - 22 years

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irishbernie

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Hi, I'm new to this forum. I have a friend in Ireland, his name is Gerry, and he was diagnosed with Upper and Lower ALS 22 years ago. At the time Gerry's doctor only gave him a couple of years to live. He has asked me (I live in Canada) to check what info I could find here to see if anyone else has had ALS for this length of time. He is very weak these days, he still likes to go for a pint every now and then, types me e-mails, watches soccer games on the telly and paints. He is just the most brilliant person, his sense of humor and outlook on life humbles me. He sees his neurologist on a regular basis as to what meds. he takes I don't know. If anyone out there can give me some feed back that would be brilliant.
God Bless
irishbernie
 

PALS Mike

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HOLY CRAP! :shock:

And I thought I was doing well after 3 years.
He's an inspiration. :D
 

Al

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I believe Stephen Hawking the noted British Physicist at Cambridge University has had MND or ALS somewhere in the neighbourhood of 20 to 22 years as well. I am not sure if he is on a vent but he is in a power chair and needs mostly constant care. The man is still brilliant and has a lot to offer to the scientific community. Much like us on this forum. LOL
 

Timshelper

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Ditto on the HOLY Crap Mike! what Meds are this man taking and who is his Dr.? Carol and I were just talking about this the other day and we were discussing how there are variances with this disease and that may be why some people who are diagnosed live longer then others but why that is seems to be a mystery.Maybe its just the luck of the Irish ay? Talk about having a pot of gold at the end of the rainbow or he should be counting his lucky charms.
Kim
ALS About Loving Someone
 

Elaine

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Wow ! 22 years, he's doing something right. Maybe you could ask him what medicines he's on or treatment that he's taken. You never know it might help some of us He's very lucky , and I hope he has many more years.
 

irishbernie

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ALS 22 Yrs.

Hi all: thanks very replying to my post. I will contact Gerry and give him this site and hopefully he can tell you himself what meds he is taking.
Thanks
Bernie
 

TBear

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... other than Steven Hawking, I don't know of anyone who has survived more than about 12 years. I have a friend who has been suffering for at least that long... and I believe that he may still be driving. I remember him telling me that he was number 03 on the rilutek study. My wife was number 103... and she passed away over 4 years ago.

Not sure what else he is taking other than, if I recall correctly, a lot of Vitamin E. Interesting to hear what your friend has been taking... besides the odd pint of, possibly the best beer that I've ever tasted!

T.
 

lacey

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Just to let you know that my mother lived for 16 years with ALS. At the beginning it progressed quite quickly and then she basically stayed the same for about 13 years and the last 2 years were steady downhill. She never was placed on bi-pap or anything and the day the dr. suggested the feeding tube(which she adamantly did not want) she developed pneumonia and died 12 hours later. I think she made the decision to leave.
 

PALS Mike

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Just an FYI...

Stephen Hawking has had ALS for 43 years...(and uses a vent)
Stephen Hawking had just turned 21 when he was told that he had amyotrophic lateral sclerosis. That was 43 years ago.
Bert Woodard has lived with ALS for over 22 years.

William Kibbie has lived with ALS since 1973 (32 years).
 
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Al

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My sister in Victoria BC lived across the street from a guy Ken, can't remember his last name but he has been reported on in the BC ALS newsletter and he lived somewhere in the neighbourhood of 15-17 years with ALS. The last few were in a chair vented as far as I know. My sister points to this when I talk to her about ALS. She thinks I can do what he did. I'm thinking he was lucky ? but I don't think I'll have his luck. We'll see.
 

Theresa2004

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first chance in days to even read the postings here...let alone reply.....who ever said babies were the easy stage of parenting, wait until they become teenagers ,should be canonized...anyway...what is the secret to the span of this?I can understand a few years here or there, but look at the range.....20 plus years.
So I pose a question, is there a correlation between the age of the patient at onset, possibly even their exising health at the time being accounted for, to longevity? The younger you are, the longer you survive?
?
 

Timshelper

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I dont think it has to do with age at all. I know of 2 teenage girls one was 17 and the other 19 both of them died between 6 and 9 months. I didnt know you could even be diagnosed at such a young age. I wish Carol would get in on this because her and Dr Strong had quite had a discussion about this when Henry was diagnosed. Again it has to with the variances of ALS and how it affects you and thats where Carol could be beneficial to this question. Carol are you out there?
Kim
ALS About Loving Someone
 

Carol Deboer

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Hi Guys,

Henry had als for about 8 years. And I thought that was long. I cannot even begin to imagine anyone surviving with als for 43 years. wow..... I think that a persons age poses a viable question. However, after talking with Dr. Strong on many occasions, he told me he did not know, or would even begin to guess how many variances of als there really were. So, that poses another question. Do some people have rapid progression at first and then level off for many years? And do some people, like Henry, have slow progression and then go down rapidly after many years? And why? Henry was a strong, fit, healthy, active man. He ate right, excersied right, took all of the right meds, but still tward the end went downhill fast. In a way you wonder if living for over 20 years with als if the diesease becomes doormat at some point. I do not know. I just know what we went through and I thought that we did extremely well. Who knows, when the Drs. and the researchers can not give you any concrete answers you begin to wonder just how many variances of als there really are. Anyway, have a good night all. Love and hugs to all.

Carol
 

Timshelper

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Thanks Carols hugs back at you and by the way I'm not so stressed right now. It takes 54 hours to get to Sarnia long trip huh?
Kim
 

Al

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Where are you coming Kim that it takes 54 hours to get to Sarnia. I know it is out of the way but 54 hours? It only takes 24 to grt to the Philippines and that is half way around the world. Further to the conversation of how to live longer. I have read that us chubbier guys live longer. Skinny guys need PEG tubes sooner and waste away faster. Don't think a scientific study was done but that's what I've read in different places. Met a rather big guy such as myself at Westpark Rehab that said he had ALS since 94. He was in an institutionalized setting in a power chair vented but still going strong.
You never know.
 
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