Rant or something

[lgelb]

"Showing the reality of ALS" in a PSA campaign is a nice idea, but how real is it to portray PALS who have survived 10, 14 and 15 years so far (only ~20% live >5y), respectively, two of whom have trachs, rarely used in the US?

Following each vignette with the hyperbolic tagline about having lost "everything" makes even less sense. If they (y'know, the PALS, supposedly the subjects of these PSAs) felt they had lost everything, would they not have opted out a while back? Oh, I forgot -- the ALSA seldom recognizes phenomena like physical pain, dyspnea, self-determined death and ... death, period.

I'd be interested what message about ALS others think these PSAs send. To me, they say, "ALS: trapped in your decrepit body for eternity." It's not just that I believe otherwise, but if we want P/CALS to feel some power over the end of life, videos like these say that they have none.

 

[Lkaibel]

Hey, it’s just super common that people are dating three years post Dx, then go on vents after their weddings and. Have a kid! Insert sarcasm here.

Out heAlthcare system in the US does not support vents for the few who do want them.

 

[Annabelledingdong]

I understand your critique of the vignettes, but it's not unusual for non-profits to use sentimentality to raise money.

Granted, my view about being trapped for eternity differs, I am Canadian and have already started the conversation about Medical Assistance in Dying with my primary caregiver.

I was especially touched by the scene with the mother and daughter. I had to ask my daughter to cut the fingernails on my right hand the other day because I didn't have enough strength in my left hand to run the nail clippers. The intimacy and love in that scene is one I have lived.

A.

 

[Atsugi]

I really hate to say these words, for they only add fear to PALS. But between you and me, I think a PSA for ALS should be pretty simple: An uninterrupted view of the ceiling, with an occasional child's voice in the background. "Why won't grandpa talk to me anymore?" Let a calendar tear off day after day, until finally there is silence for the rest of the year.

TO BE FAIR: Most reports say that the end isn't usually that macabre. And several PALS have reported that their quality of life was better than expected. Of course, those were the ones who still had the ability to communicate.

My wife was totally locked in (no movement at all, including no eye movement to communicate) for one day only, so we kept her morphined up in the hopes she wouldn't feel the fear or sadness of the condition.

That was the worst day of my life, bar none. I had a decision to make, and it wasn't fun to think about it. Fortunately for our wishes, nature took its course that evening when her breathing and heartbeat simply faded away to silence.

Feel free to delete this post if it is too...unhelpful.

 

[Narrowminded]

After watching these, I would say the first fairly well depicts what Brian looks like. However, what these don’t show is the reality of what the CALS/family go through when someone is on a vent. It is definitely rare, and help is hard to come by if you are vented.

I would venture to guess that some who chose to vent fear death. While they may have lost everything but their life, they are still alive. To them that means everything because if they don’t have FTD, their mind can still be as sharp as a tack, as in Brian’s case. To him, he hasn’t lost everything. To me, it’s far different story as it pains me greatly to see a man who never sat down, have no movement at all 24/7/365.

If you’ve read my “struggling” thread at all, you know my view of the vent has changed 180 from when we made that choice. These videos may extract sympathy and for donations, that’s good. But they definitely don’t show the reality or at least all of it.

Laurie, I don’t feel that take away the ability to decide to leave this world on your own terms. And not all PALS have pain. Brian has none and never has. Then again they say involuntary muscles are not involved, but anyone on the poop parade knows that’s not true. I think mostly because if you chose not to vent, as most do, it’s likely your body never got to that point.

Some chose to let nature take it’s course, some want to opt out early, others chose the stay the course as long as possible, by whatever means possible. I don’t think the videos change that dynamic.

Remember, it would be very hard to depic someone choosing to opt out early given the current laws of the land, and I think that would also send a message that “you’re not worth anything now so just kill yourself”. That too is not a good message.

However, we have come to this from different sides. Larry chose not to vent and Brian did so our experiences are different. Just as each PALs/CALs. Mike is the only one that I’ve read about (not the only one ever) who’s PALs got locked in. That is a huge fear I have given the vent. Just as ALS isn’t one size fits all, I don’t think the ending can or should be either.

Hugs,

sue

 

[lgelb]

Sue, no question, the beginnings and endings of the paths differ. I did not mean, for example, that none should show vents or all should show pain. I would have favored a more balanced mix of stories, and I really, really hate the tagline. The truth, of which they do use pieces on occasion, is sensational enough.

Annabelle, I've directed marketing in allied sectors, so I do understand, but if the positioning is such that people would rather avoid the whole thing (and the YouTube views to date are meager, as you can see), funds and other metrics won't follow.

Nor did I mean that P/CALS who have already considered their options would feel constrained (good for you!), but there are those who do not know what the options are, and the tone overall does seem to narrow them.

ALSA did a similar campaign several years ago, which I also pushed back against (as did others), pre-distribution.

 

[Lkaibel]

The endings in ALS are super different, as has been well acknowledged here. We have hot another stage with this, so of course my heart is on fire and I keep that in mind when I see these things, but honestly this videos most made me angry.

Where is my friend's late husband, a robust man, around 6 feet and broad and strong when they got together around 2011. He died last year in a long term care where she spent every single day of the last near year of his life with him, unable to move, to eat. He spoke in a whisper. He was 61 and they were together just 8 months before his first symptom.

Where is the woman we met at Dr Walk's clinic? She is 34 and has respiratory onset ALS. She was Dx'd six months ago and is on 02 at all times. She can walk, but Walk apparently told her that without a vent she will likely not last another year. She is declining to vent.

Are these stories somehow too scary, not "inspirational" enough? It's like ALSA is p--sing on the short and difficult lives of most with ALS. I suppose if it gets more money for the supply closets and the research by not making people "tune out" I can handle it, but it's just somehow infuriating.

 

[affected]

When Chris was first diagnosed I got this ridiculous picture in my head that we were going to be some movie-style-amazing story of transcending all obstacles.

Nup, it was a horror movie, and it was fast and it was not pretty.

 

[Buckhorn]

I for one would just like to thank those of you who have "walked the walk" regarding your real life experiences with ALS, revealing the good, the bad and the ugly. I have learned so much from this forum that I either would not have had the courage or foresight to ask at clinic or would not have had the courage to state my opinions to someone face-to-face. From all of you - the collective knowledge base of the ALS forums, I have learned the unabashed, unfiltered truth about the realities of invasive venting. It has been from YOU that I have learned that it is really not too difficult to initiate the assisted "exit strategy" with a physician.

Laurie, when Dave was first diagnosed and when we went to our first ALS clinic appt., we were sent home with an amazing/overwhelming collection of "informative pamphlets". I still remember reading these little vignettes of (highly atypical) PALS who were still living relatively happily with ALS (NIV) for 15 years, and some who were still leading "very productive lives" having been invasively vented. I remember thinking, "yeah, right. This is NOT typical!" As Lkaibel/Lenore stated, with ALS, the individual stories, beginning-middle-end, vary considerably, but all things considered, there is no "good" end! All we can hope for is that the ending will be as peaceful as possible and that we & our PALS are as ready for it as possible.

Mike, I share your sensibilities - I really do. I know that your wife was a physician and she knew all too well that there was no good ending to how The Beast exacts it's toll upon the body. The stories are varied, but similar in a way; ALS always wins, and ...... agreeing with your viewpoint and, I believe (from what you have written in the past) your wife's opinion that prolonging the inevitable ........ when loss and suffering and the PALS emotional fortitude/resilience has passed .......... when the possibility of joy or hope is gone ........ well, then I totally agree in allowing ALS to take it's natural course. That is what we have opted for as well. I hope I/we will have the strength when that time comes. Until then, we are trying to squeeze as much enjoyment as we can from every day.

Yes, the hyperbole with the ALS literature and PSA campaigns rings inauthentic to me; too "cheerful". That's why, since our intital clinic day 2.5 years ago I have paid little attention to their campaigns.