Three Rivers

[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