First Post, Kind of Concerned...

[Forced Prickle]

well, this is my first post. I don't want to sound antagonistic, as I enjoy this forum, it's mostly full of positivity, helpfullness, and hope. Yet I'm kind of concerned for the younger PALS (20-45 year olds) who come onto this forum and read posts from older PALS stating how they don't believe stem cells will work in their lifetime/or how a cure won't be found in their lifetime, but are confident that this will all work out down the road - well, think about that 22 year old who was just diagnosed/who has been fighting the disease... how that most definitely takes the wind out of their sails. It's easy for a person 55+ to say this, seeing as they've lived over twice as as this younger PAL, or a 30 year old, or whatever. That 22 year old receives the same prognosis: 2-5 years. Think about it. Just a thought...

Thanks

~Mr. Prickle~

 

[rocmg]

we're all hoping stem cells work and sooner rather than later... our neuro told us science works by quantum leaps.. nothing is impossible.

 

[BethU]

Do we need a troll alert here?

I don't think the nature of this disease is kept a secret from anybody of any age who has it. Don't you think getting a diagnosed of ALS would take the wind out of anybody's sails ? At any age? Getting the diagnosed is certainly scarier than reading speculations about a cure. (And, take my word for it, it's not "easy" having ALS at any age, even if you're over 55 and presumably ready for the dust bin.)

Aside from the enjoyment you derive from reading this forum, what is your interest in ALS?

 

[thelma313]

People with ALS, at any age, need this forum as a place where they feel free to voice their fears, beliefs, opinions, and feelings.

 

[BarryG]

Dear Mr. Prickle;
Ok, I feel like a big ol trout but I'll take the bait anyway so here goes. Are you the 22 year old? If so I'm sorry. I'm 53 so I kind of don't fit your old, jaded, "I think that there's no hope so I'll just roll over and die" stereotype. I have a family that need me so don't give me that stuff about because I've lived for soooo long I don't care about my life. We all, no matter how old we are, have hope for a cure in our lifetimes. I have never read otherwise on this forum. There is a difference between being cynical of unscrupulous con artists who steal precious time and money from people and holding out for a real cure that works.

 

[john.rt]

yes my son of Aunt who is affected with als have spent about 54 thousand dollar by traveling to china to replace his stem cell after they had done it they told him either you will get cured or it will stop it but he didn't see any good

 

[kylisa]

Sorry to have to break it to you but, als doesn't discriminate based on race, sex, or age.
It is a sorry state for anyone to be diagnosed with this horrible disease. It is a shame that it can't be sugar coated for the younger PALS. I wish it didn't have to be dealt with at all. Oh ! for the day it will be virtually obliterated like polio and small pox! We can hope, pray, and even anticipate a cure but, it has been a very long time since Lou Gerig brought it to the public's attention and it hasn't changed much since his death. Many improvements have come in treating the symptoms and helping sufferers deal with the effects over the years but still nothing halts it eventual progressive path.

 

[Forced Prickle]

I'm not a troll, no. 1

and I understand that ALS or any fatal disease is an incredible blow at any age. any age at all. of course. what i'm saying to you guys is that a 60 year old who's lived a lot of life to say that they don't think a cure will be found in their lifetime but will be found for future generations (like their kids). yet a 22 yearold who unfortunately is in the exact same position, same prognosis, yet essentially just starting life reads that, it must be devastating, that's all. like if your kid had als too. would you say that in front of them? i doubt it.
20, 40, 60, 80, any age this disease is awful. completely.

 

[BethU]

I think we all understand what you're saying. We get it. So, I hope you'll listen back to what we're saying.

Being diagnosed with ALS is the devastating part, not reading discussions about cures on a support forum.

For the sake of argument, you seem to assume that young PALS are somehow kept in the dark about the seriousness of the disease. I can't imagine where you are getting this from ... the idea that below a certain age, people are not told what to expect from ALS and are incapable of finding out for themselves.

But at least you've upped the age of when people belong in the dust bin from 55 to 60. I think that's progress of a sort.

Now, I won't feed the troll any more ....

 

[joelc]

Somehow I think you are missing the severity of ALS and think it is different for younger people than older people.
It is not.

The facts are the facts no matter what age.
Life expectancy is the same for all age groups.

I don't see what the benefit would be to withhold the truth just because of age.

 

[Zaphoon]

I'm 52 and have recently been referred to as, "Young man!" I'd like to believe 52 is young and I hope to live with this creeping crud another 30. Maybe when I'm 80, someone (perhaps a little older than me) will still refer to me as, "Young man!"

 

[rocmg]

I'm not a troll, no. 1

and I understand that ALS or any fatal disease is an incredible blow at any age. any age at all. of course. what i'm saying to you guys is that a 60 year old who's lived a lot of life to say that they don't think a cure will be found in their lifetime but will be found for future generations (like their kids). yet a 22 yearold who unfortunately is in the exact same position, same prognosis, yet essentially just starting life reads that, it must be devastating, that's all. like if your kid had als too. would you say that in front of them? i doubt it.
20, 40, 60, 80, any age this disease is awful. completely.

i think i understand what you're saying -- but since PALS share the same life expectancy, ALS is the great equalizer.

If you're 22 and have been diagnosed with ALS, you may not have lived the same life as say, a 55 year old who married and had children. But do you think the sadness of never being married and having children is greater than the sadness of knowing you're dying and you're going to leave your spouse and children behind, devastated? There is no happy equilibrium with ALS. it all sucks.

 

[trfogey]

and I understand that ALS or any fatal disease is an incredible blow at any age. any age at all. of course. what i'm saying to you guys is that a 60 year old who's lived a lot of life to say that they don't think a cure will be found in their lifetime but will be found for future generations (like their kids). yet a 22 yearold who unfortunately is in the exact same position, same prognosis, yet essentially just starting life reads that, it must be devastating, that's all. like if your kid had als too. would you say that in front of them? i doubt it.
20, 40, 60, 80, any age this disease is awful. completely.

As devastating as my diagnosis was to me at my age (I was 49 when diagnosed), I can understand how much more devastating the diagnosis would be to someone significantly younger than I was. But it doesn't change the facts that we know about the state of research into the cause of this disease and the availability of treatments for the disease. The 2 to 5 years thing, in my opinion, is based on old data from the time when even fewer treatments were available, and I think that many in the medical field that don't specialize in the management of patients with ALS throw those numbers around too freely.

Communities like this can go a long way toward dispelling some of the outdated notions about the quality of life and the nature of progression with ALS. The more people that we see living with this disease for 10 or 20 years because they made the informed decision to take advantage of all the supportive therapies that are available today, the less rigid that 2-5 years number becomes.

 

[Marjorie R. Wilcox]

What is, is. Chickens don't want to hear it. Ostriches stick their head in the sand so they won't hear it. Cows milk it for all it's worth. Skunks spread despair all over. Foxes take it and run. Let's be lambs and just be considerate of each other.

If you want to know, read it. If you don't, then move on. Our individual needs are all different. If we were all the same, what a boring world it would be.

Young person, you will find out that when you are 40-80 you won't feel old until you look in the mirror. The news of ALS is atrocious no matter your age. We are all needed.

 

[Al]

Bossman was in his 40's and lasted 8 months. Sure blows a hole in the 2 years statistics. Numbers are just numbers and can be manipulated to make your point. I think a few here lately are getting hung up on numbers. It's the people that count, not their numbers.

AL.