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]

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?

[serenade]

I very much enjoyed the Three Rivers program. I think Manny did a great job with what knowlege he had about how to portray an ALS patient. Yes I think the story line could have been a little more accurate, but it is what it is. I think the point of the show was about respecting someone's personal views on dying, organ donation, and personal relationships. I can truly relate to Manny's thinking and choices that he made. I don't know why people on the forum get their panites in a bunch over this! This not a personal issue, it is just a tv show take what you want from it and leave the rest! I think it is great that ALS got a little attention on tv for once! So why nit pick about it.

[ZenArcher]

With all due respect - are you living with a trache and vent?

I didn't realize that a trache and vent were required to have an opinion about ALS and the choices we make. My apologies.

[kelly]

I was at our ALS caregivers meeting tonight and they spoke about the episode. The Nurse stated that ALS patients are not allowed to donate organs....so Hollywood was way off. Unless she is wrong of course! I did not realize that he already had the vent while he was driving. THought it was put in during his emergency surgery. Heart breaking anyways.

[GlenBrittle]

You would think that people who have the same disease or are caregivers to someone with the disease would have a little thicker skin.

Ooooo ... Its not politically correct to use a word like wee tod dead. Oh Please.

Personally , when I get tired , I SOUND LIKE A RETARD, and when I laugh , yep , I SOUND LIKE A RETARD. What I say portrays an image, nothing more. If I said I sound like the people that live with my brother who has cerebral palsy , you have no clue about what I am saying.

Joel, I applaud your sincere apology , but you should not have to.

To anyone that gets riled or pissed off by these statements , score one for me.

Glen

[kelly]

Glen...I know it is politically incorrect..but your post made me laugh. I must be numb and have thick skin! LOL!

[Big Mike]

I didn't see the episode, but I am not surprised that Hollywood got it wrong. It is sad that we live in a culture where if you are sick and disabled, you should die.

[shelleynshaggy]

I don't think that was the point of the show at all. I think it was well done for what it was - a drama. Made people think. I have been learning all I can about ALS for several months and can't get my mind around it - how are they going to express it in an hour. None of these medical shows are "realistic" - they are entertainment - and entertainment that makes you think. If even 1 person went and googled ALS or Lou Gehrig's disease after that show than it did some good. Made one more person aware.

I had a patient a couple weeks ago start to make remarks about dementia patients. After the 2nd remark I simply said "please be careful what you say, my husband has dementia." I did not have to explain FTD or ALS or anything else - just that statement made her think. Of course the next question was - wow how old is he? - One more person who is more aware and will hopefully think twice before the judge someone like my husband who tends to act drunk, rude, or just plain odd.

[Al]

First mistake they made was saying he had a flail chest and then he's laughing like a loon at the kid. He would have punctured his heart that was supposed to be trapped needing the operation. I knew it was going downhill from there, and it did. I was in the ALS Clinic Tues. They told me, in Canada they will not transplant ALS organs. Maybe they do in the US. That show is about transplant teams. I think it'll be gone by xmas so why bother worrying about it here.

AL

[Zaphoon]

On a positive note, Mandy sure has an affable smile!

[boblandstar1]

Cmon folks its a TV drama. Any exposure we get is a win for us all. The show put forth some powerful messages and lessons. Lessons PALs and caregivers should both consider. I am a 5 year survivor since diagnosis. I have a different perspective than a caregiver or family member.
Nobody could be expected to understand any of this. In order to really understand you must be fully able to accept death, at least in relation to ALS. It is only human nature. The one thing we all fear the most is death. Even if you are around ALS daily as a caregiver or loved one you would probably never truly get it. I have the "Indestructible" dvd about ALS. My caregiver of 3 years, Mona, lasted about 5 minutes and started bawling and refused to watch anymore. She sees me almost every day and she still refuses to accept or even think about my death.
Victor wasn't asking anyone to accept his death. He was asking them to respect his right to accept his own death. Everyone had their own various self serving motives to try to deny him his dignity.
Speaking for myself I would be so fortunate to find myself in Victors situation. A way to turn a senseless and inevitable death into something meaningful.

[chefdeborah]

I did not watch the show for a particular reason. I was just dix and didn't want to see this. As for the voice, I heard it on the commercials. Mine is not like that yet. Mine is more gutteral, and very low in pitch. I was a second soprano before this happened. Now, if I could sing, I would be a bass! Right now, I have problems with people thinging I am on drugs or drunk! Yep! I go into a store and try to ask a question or on the phone and someone thinks I am on drugs!

I called a counselor yesterday and I had to tell her I wasn't on drugs!

deborah

[Zaphoon]

Chef Deborah,

I'm sorry to hear you've lost your soprano voice and the ability to sing in general.

Kim

[t34gib]

I also think it was insensitive to use the word. I have bulbar and you should hear me talk! Getting rather bad. I never would have used that word talking about someone who is retarded or mentally challenged. But, I know that Joel did not mean it to hurt anyone. We all need to watch our words, even those who don't have ALS. I watched the show and thought it was good. I had asked before if I could do organ donation and was told they would look into it. I definately would do it if possible. Also will donate my brain and spinal cord to research after I am done with it. Just my opinion.
NancyS

[Katie C]

Deborah... interesting that your voice is lower... Glen has always sung bass, and now when he "sings" with the choir [yup.. we move him a bit away from the mic but yeah, he's still part of the choir] we suddenly have a tenor. Weird thing this disease.

[GlenBrittle]

Hmmm , I wonder if its the decreased air pressure from the lungs that makes the voice deeper ?

My voice is getting softer.

At work , I told everyone that I walk like a drunk , and talk like a drunk , its time to start drinking again. No one will ever know. Can you get a DUI in a wheelchair ?


Glen

[thelma313]

If anyone can get a DUI in a wheelchair, it's you, Glen!;)

[Blubear]

I think the show was more geared to show how many people will benefit from organ donation. Putting a face to each donation at the end of the show was very moving. I wish they had gone more into the ALS factor. To me they just kind of skimmed over the fact that he had it and tried to depict that there was nothing he could do about it except to go to his daughters and become a vegetable and die, or donate his organs. We all know ALS is far more complicated than that. It made me a bit mad that the character said he wanted to make the decision about organ donation while "he still had dignity". Just what the hell is that suppose to mean anyway! Just because someone has ALS and sounds different and has things that help them breathe etc.. does NOT mean that they shouldn't have any dignity! Well, at the very least ALS got some time in the spotlight for a change. More coverage = more knowledge. Oh yea and to JoelC...his disease wasn't making him go directly to a vent faster, it was because they found a tear in his diaphragm..
Hugs to all,
Blubear