Three Rivers

[LauraW]

I am not sure where to put this post. I was wondering if anyone saw Sunday night's episode of Thre Rivers? It was about an ALS patient. Wow! Very emotional episode. Mom said He gave up too easily. I was happy to hear her say that. Just wondering what other thought.

 

[joelc]

I found the show to be very disappointing, in that it was not an accurate portrayal of what it is like living with ALS. I found it disturbing that our only worth is to die so someone else could benefit from our organs. Even that is an inaccuracy - I don't know whether anyone would, or should, want our organs. Especially someone half our age. Since no one knows what causes ALS then to donate our organs does not seem like a wise idea.

There were many other inaccuracies;
* 1 or 2 people in 100,000 get ALS. Of those about 5% choose to vent. Of those, less than 0.1% can still drive and are totally ambulatory while on a trache and vent. You do the math. What is that? 1 in 2 billion?
* The show also stated he would be bed ridden and need a vent full time. That is a contradiction because he was driving with one already? ALS does not progress that quickly to confine him to a bed, the worst case would be he needs a wheelchair. How many years was he in the hospital?
* He sounded like a retard when he was talking at the end of the show.

I could continue but will stop here, I think I have made my point.

Suffice it to say I was insulted by the way this ALS victim was portrayed. This is not the way ALS actually is. And our only worth is not Organ Donations. I live with a trache and vent as well as a PEG (feeding tube) and can tell you things are not as was portrayed on this show. I wish they would have done their homework.

 

[ZenArcher]

I must admit I find getting insulted by a prime time drama to be a bit of a waste of time. The show depicted a man whose body was ravaged and weakened but still possessed his full mental faculties. He then made a decision about his life which others both in show and out tried to color from their own viewpoints. Sounds to me like that pretty much nailed it.

 

[joelc]

With all due respect - are you living with a trache and vent? It was a totally inaccurate depiction of ALS.

He was driving, got in an accident and all of a sudden he was going to be bed ridden and not able to function, ALS does not progress that fast. I still feel the show was trying to say we have no hope and our only worth is to donate our organs.

I find it disturbing from the stand point of if people who have ALS watch this they are left feeling they have no choice but to die.

 

[kevinw]

Above and beyond all the "Motor Neuron Disease" talk......

I find the quote, "He sounded like a retard when he was talking at the end of the show", more insulting than anything I saw during the show.

I watched it with my wife and if it was "realistic or not" I know she is always uncomfortable with what might become with me in the future. To think that someone might refer to me as "retarded" because the way I speak is very upsetting.

I mean no harm or trouble with my reply, but I find the word "retard" very insulting.

Remember children with "Down's Syndrome" did nothing wrong (and either did their parents) to get the terrible disease......but yet they are labled "retarded" by the majority of society. I don't know of anything I did wrong to get any kind of "Motor Neuron Disease", but sure would not want to be referred to as "retarded" just because of the way I sound.

I am sorry but needed to comment on the phrasing of that post.....sorry again.

 

[joelc]

What I meant by that comment was that is not what we sound like just because we have a vent. Our talking is choppy because of having to wait for the vent to give another breath, but our voice is normal.

That was not an accurate depiction of what will happen.

Your experience living with a trache and vent must be different than mine. Sorry if I insulted you.

 

[kevinw]

Don't Misunderstand Me

I do not pretend to know what you are going through.....I do not want you to think that I am "down playing" anything you experiencing (and I pray to god every night that "nobody" needs to go through this).

It was only one word that caught my attention as a reference to something.

I completely understand your reference to the depiction, and I do not mean to upset you, I just have a problem with "that" word.

I understand the "pause/time" between the breaths could be mistaken for other issues.

Again "I am sorry", I just needed to say something about that "word".....I am sure you meant it with no harm or ill intent.

 

[lynster]

Not to change the subject completely, but my husband, the PALs, watched the episode on Sunday. (It was on too late for me.) His comment was that it was a bit heavy-handed, but that he could watch anything Mandy Patinkin was in - he is a very talented actor!

We take most Hollywood productions with at least several grains of salt, and have to suspend our disbelief on a regular basis. That being said, it was good to have more exposure on this horrible disease.

 

[kevinw]

Not to change the subject completely, but my husband, the PALs, watched the episode on Sunday. (It was on too late for me.) His comment was that it was a bit heavy-handed, but that he could watch anything Mandy Patinkin was in - he is a very talented actor!

We take most Hollywood productions with at least several grains of salt, and have to suspend our disbelief on a regular basis. That being said, it was good to have more exposure on this horrible disease.

I agree........I look for any "exposure from hollywood" a lot (like I said, my wife might be uncomfortable with it), but the more I hear about Motor Neuron Disease, ALS, PLS, anything with Stem Cells the better I think it is for ALL of us.

 

[Katie C]

I haven't watched the entire episode yet, but a couple of comments.... Joel... my husband sounds EXACTLY like Mandy Patinkin's character sounded at the end of the show. Does that make him sound like a retard? He also holds a pen exactly the way Patinkin's character held it while signing forms. I felt in the parts I saw that he had indeed done his homework. Was it perfect? No.. it was a tv drama, not a documentary. Everyone here knows that each case of ALS is different... so just because it did not portray YOUR journey with ALS, can we please not insult those whose journey it came closer to portraying!?!

 

[joelc]

Okay, Okay, I am sorry for using that word.
I suppose I should also apologize that my journey is significantly better than what was portrayed.

And, No, people watching that show do not know everyones journey is different. I don't know anyone who goes from walking and functioning perfectly to bedridden in a matter of weeks.

If you want I will delete my post - I don't want to insult anyone, if you think that you don't know me. All I want to do is try to tell people there is another perspective to ALS than all the doom and gloom we are constantly bombarded with.

 

[kevinw]

Okay, Okay, I am sorry for using that word.
I suppose I should also apologize that my journey is significantly better than what was portrayed.

And, No, people watching that show do not know everyones journey is different. I don't know anyone who goes from walking and functioning perfectly to bedridden in a matter of weeks.

If you want I will delete my post - I don't want to insult anyone, if you think that you don't know me. All I want to do is try to tell people there is another perspective to ALS than all the doom and gloom we are constantly bombarded with.

No, No, No Need to delete your post! I respect your view/situation as I do everyone's. Also, I didn't mean to imply that your journey is any better, worse, or different than any other journey that anyone is on. Nobody asked for this journey and I agree 100% with sharing notes and experiences, trust me with my full heart when I say it was only the comparison that caught my attention.

Trust me when I say that I truly respect everything that you have and are still going through.....I mean no disrespect to you.

 

[Katie C]

Joel, I don't think anyone wants you to delete your post. Yes... I took issue with your comments regarding the voice the actor used. Glen's speech does in fact sound very similar at times to someone with Down's syndrome... and for a similar reason. Some Down's patients have impaired control of their tongue muscles. Glen gets fairly severe tongue fascics. It has the same effect on speech. I simply want it clear that some ALS patients DO in fact sound like that. Has nothing to do with trache or no trache.

 

[laurel]

Joel we all know that you are a loving, kind, gentle man. I am sixty years old, a retired nurse, and have worked with developmentally challenged people. But when I started in the business the forbidden word was common usage and it is often hard to always be politically correct as the old habits/words seem to be programed within and slip out on occasion. I knew from the get go that you had no intention of offending anyone. I think you are a wonderful fellow.
Laurel

 

[kevinw]

Ohhh....heck......I think we should move on to bigger & better things. Maybe I read too much into it, I don't know Joel, but I can tell from his replies to my posts that he must be a "loving, kind, and gentle man"......again "No disrespect meant"

And that's my last post on this topic.....Joel "I am sorry if I brought up something that may have gotten off topic".

Better things must await us all.......right?